Caroline Elizabeth Jackson
Born February 26th, 2007
6 lbs. 1 oz. and 18" Long
Levine Children’s Hospital has posted a plaque at the entrance to patient room called BED 4 at the Cardio Vascular ICU Unit. We are thankful for all those who have supported us and donated time and money to the annual Golf Tournaments we host in her Honor. You all have made a difference in our lives and continue to make a difference in the lives of children with heart defects much like Caroline’s. We thank you and love you all! Michael, Tanner, Kathryn and a Banks! Wednesday June 17th, 2009
In Memory of
Caroline Elizabeth Jackson
February 26, 2007 - June 17th, 2007
Friday February 26th, 2010
Happy 3rd Birthday Sweet Baby Caroline
Day 984 in Heaven
Theme for the day: Love God and Love One Another - our time here is short so make the most of it.
Today is Sweet Baby Caroline's 3rd Birthday. Happy Birthday baby....we love you and miss you very much!
It is hard to believe how fast time has gone; we are now at the 3rd Birthday for our precious daughter, Caroline. Our lives have been filled with ups and downs for the past 3 years but the one thing that has continued to grow stronger is our walk with the Lord. We are so thankful for the opportunities we have had over the past 3 years and the friends that have come into our lives. Even 3 years later, Caroline's story continues to be a testimony to the strength God has given us and the love that we have in our hearts for a child we only knew for 112 days.
Since my last post, we have been blessed with a new baby boy, Banks Maclane Jackson. Banks was born on August 20th and was perfectly healthy, thank you Lord! Kathryn is almost 5 years old and we registered her for Kindergarten this month. Each night as we say our payers, she reminds me to pray for Jesus to give Caroline a BIG hug and kiss from her and to tell her we miss her. She also asks me to pray that God would send Caroline back down to us so she could play with her. This is hard one to explain, but I try to explain that Heaven is a much better place with no pain and no suffering, so why would she want to come back. I know it's hard for Kathryn to understand and it's even harder for me to convince her that it's better in Heaven. She asks, what does Heaven look like...I tell her to imagine the most perfect place and multiply it infinitely...she say's "Like Disney World", I say even better!
Caroline's 2nd Anniversary with Jesus
Day 730 in Heaven
Theme for the day: Don't look back on your life and wish you would have.....instead do the things you can now.
Two years ago today, we experienced the most difficult time in our lives. Loosing a loved one is never easy, especially a child. I will never forget the phone call at 12:38 AM on June 17th, 2007. I could tell from Dr. Watts voice that the time had come for us to let Sweet Baby Caroline go home to be with the Lord. As we made the 26 mile trip to the hospital, like we had for the previous 103 consecutive days, our hearts were filled with fear and grief knowing we were going to have to say goodbye to our baby girl. I will never forget the look on the Doctors and Nurses faces when we walked in to CVRU where Caroline lived the majority of her short life. We had all become family and Caroline was a child they all grew to love and care for as if she were one of their own. She touched the hearts of so many people and made an everlasting impact on my life. Thank you all for the support for past 2 years, we could not have made it through without your thoughts and prayers.
We just celebrated Kathryn's 4 year Birthday! I cannot believe how fast time has gone by. I tell her every day, "Kathryn, don't get any older, stay little." She replies, "How daddy, how do I stay little?" I wish I knew. But what I do know is, be sure to cherish every moment you can with your family. Time goes by in the blink of an eye and before you know it, you will be looking back and thinking about your journey. Do your best to NOT have to say, "I wish I would have......" Do those things today! Don't take for granted that you will be given tomorrow.
We are now just 10 weeks away from introducing
Banks Maclane Jackson to the world!
He is due August 28th and with any luck, he will come a little early to help his mommy out with the heat of the summer. We are so excited and anxious for little Banks to make his appearance. So far, all tests are normal and his heart is purring like a kitten....the Doctors called him "Text Book", meaning everything is perfect. Praise God for his miracle of life!
We love you all!
Michael, Tanner, Kathryn, Riley (the dog) and soon to be - Banks.
Thursday February 26th, 2009 It is hard to believe that it has already been 2 years since we were given a miracle from God in the form of an infant. A perfect little body formed by the hand of God and brought in to our lives to love and care for. Little did we know that 6 days later our world would be changed forever…. changed for the better through lessons of life and through a stronger relationship with God. Even though Sweet Baby Caroline is not with us physically, she will always remain in our hearts and in heaven above. It has been a while since I have written a post on this site but yet people still come to visit and share Caroline’s story with us. In the past 2 years, we have learned a lot about life, love and God. Lessons that can only be learned when you experience the loss of a child or loved one. We have come to know many great people through this experience and have also been able to share our story with people who are experiencing the same journey we went through. Our prayer for all those who are experiencing their journey, and those who will, is to have Faith that God will always be there and never leave you. His love will never susbside and his word will never lie. Tanner and I are expecting a new baby in August and are excited about having another opportunity to bring a miracle of God into this world. We have had some preliminary tests and everything has come back perfect. Oh, by the way…we found out we are having a BOY! Kathryn is almost 4 and she is ready to be a Big Sister as well as help take care of her new baby brother.
So many times I’ve asked, “Why, God?”
So many times my pain to hide, I could only try. To understand that Our Heavenly Father
Even more than I do
As incredibly difficult as this journey has been for us,
He’s been our primary solace for all grief, I know He understands,
Though our daughter is not “here”
We miss Sweet Baby Caroline and will never forget her and the impact she made on our lives. Her story will live on as will each day come and go. We are thankful for God giving us the breif time we had so that we could love her and learn from her. What a great gift she is and we know Jesus is proud of her as are we.
Theme for the day: Say what you need to say – Before it’s too late. One year ago we gave birth to our 2nd daughter, Caroline Elizabeth Jackson. Her arrival into this world was a gift from God to our family. She was 6 lbs. 1 oz and 18th inches long with beautiful dark hair and baby blue eyes. She was perfect in every way….. Today is Caroline’s 1st Birthday, and we celebrate the gift God gave us and how she changed our lives forever. Even though there won’t be a party with cake and ice cream or a house full of kids, we still rejoice because in our hearts there is peace and joy in knowing, that in Heaven, God is throwing her a party that will last all of time. Our family has been very busy over the past few months. We have opened a Children’s Clothing Boutique called Cutie Pies, in honor of our two daughters, Kathryn Grace and Caroline Elizabeth. Part of dealing with pain is to find a way to channel that pain to something good. We have focused all of our pain into creating a place that represents our daughters and can be enjoyed by all. So do not be sad on this day, be glad and know that if Caroline had the chance to come back for her birthday, she would say “no way”….rather, she wait for us to come to her eternal party that is hosted by our Father Jesus! The sky and the stars, Are constant reminders Proclaiming His presence So how could I think When I feel Him beside me Happy 1st Birthday Sweet Baby Caroline! Mommy, Daddy and Big Sister Kathryn Thursday January 17th Theme for the day: Out with the old and in with the New! As the Holiday Season winds down and we start a new year, I spent some time to reflect on what 2007 meant to me. 2007 was a most difficult year for our family, we lost a daughter, grandmother, great uncle and our family lost close friends. We were truly tested in 2007 but did not break nor did our faith in God ever stray. We keep telling ourselves that “everything happens for a reason”, sometimes those reasons are not known but in time we believe that God’s plan was in action and all will be as it should. The one thing I learned in 2007 is to be thankful and to thank God for everything He has given us. We live in a time where sin is in its prime and Christianity is challenged by so many. I pray for Kathryn, my daughter, and all the children now and to be, that they will have a world of peace and love to live and raise their children in. In some instances, the loved ones we lost are considered the lucky ones as they no longer have to live in fear of what tomorrow may bring.... We spent this Holiday season at Disney World with our family. We had a wonderful time in the “Land of Mouse” where we could let our imaginations be swept away into the fantasy that Walt Disney World presents. With all the fun and excitement, we were constantly reminded that we were missing Sweet Baby Caroline and how much fun she would have had seeing all the characters and beautiful sights. But there was never a doubt that the sight she is seeing could ever have been imagined even by someone as creative as Walt Disney. She lives in a world of peace and beauty like no other and spends her time with our Father as well as all those who have completed their journey into Heaven. We welcome 2008 and look forward to a year of joy and happiness for all. Thank you all for your continued prayer and support and all that you have done for our family over the past year. There is no doubt that we would not have made it without you. Love, Michael, Tanner, Kathryn and Riley Monday December 17th Beautiful, courageous and special granddaughter Caroline, this is shared for you, the “gift” you were and will always be in our hearts.
Love, Your Gram
I see the countless Christmas trees around the world below, with tiny lights, like heaven’s stars, reflecting on the snow. This sight is so spectacular, please wipe away that tear. For I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs, that people hold so dear. But the sound of music can’t compare, with the Christmas choir up here. I have no words to tell you, the joy their voices bring. For it’s beyond description, to hear an angel sing.
I know how much you miss me, I see the pain inside your heart. But I am not so far away, we are really not apart. So be happy for me, one and all, please know I hold you dear. And be glad I’m spending Christmas with Jesus Christ this year.
I send you each a special gift, from my heavenly home above. I send you each a memory, of a child’s undying love.
For after all “Love” is the gift, more precious than pure gold. It was always most important, in the stories Jesus told. So please love and help each other, as Jesus says to do. For I cannot count the blessings or the love He has for you.
So have a Merry Christmas, let your hearts feel God’s cheer. For I am spending Christmas with Jesus Christ this year.
I can’t tell you of the splendor, or the peace here in this place. Can you imagine Christmas, with our Saviour, face to face?
So let your hearts be joyful and let your spirits sing. For I am spending Christmas in heaven, Hosanna to the King!
“...in Your book they all were written, the days fashioned for me,
“For we are His workmanship, created in Christ Jesus for good works, “...in Your book they all were written, the days fashioned for me,
Monday November 26th Caroline’s monument was placed at the gravesite this past week. Her message to the world carries on….. As we approach the Holiday Season, the reminder of losing Sweet Baby Caroline presents itself even more. This would have been her first Thanksgiving and she would have been wearing her first winter clothing. But we cannot look back nor ask "why?", we must look forward and have comfort in knowing she is with Jesus. WHY GOD ALLOWS PAIN AND SUFFERING
This is one of the best explanations of why God allows pain and suffering that I have seen. It's an explanation other people will understand.
'I don't believe that God exists ...'
'Why do you say that?' asked the customer.
'Well, you just have to go out in the street to realize that God doesn't exist. Tell me, if God exists, would there be so many sick people?
Would there be abandoned children?
If God existed, there would be neither suffering nor pain.
I can't imagine loving a God who would allow all of these things.'
The customer thought for a moment, but didn't respond because he didn't want to start an argument.
Just after he left the barbershop, he saw a man in the street with long, stringy, dirty hair and an untrimmed beard. He looked dirty and un-kept.
The customer turned back and entered the barber shop again and he said to the barber:
'You know what? Barbers do not exist.'
'How can you say that?' asked the surprised barber. 'I am here, and I am a barber. And I just worked on you!'
'No!!' the customer exclaimed. 'Barbers don't exist because if they did, there would be no people with dirty long hair and untrimmed beards, like that man outside.'
'Ah, but barbers DO exist! What happens is, people do not come to me.'
'Exactly!'- affirmed the customer. 'That's the point! God, too, DOES exist! What happens, is, people don't go to Him and do not look for Him. That's why there's so much pain and suffering in the world.'
Friday October 26th
Caroline's 2nd Birthday
Day 619 in Heaven
Theme for the day: The will of God will never take you where the Grace of God will not protect you.
Today is Sweet Baby Caroline's 2nd Birthday. Happy Birthday baby....we love you and miss you very much!
Happy Birthday Caroline! I miss you.
Thank you all for your continued words and prayers for our family. We love you all.
Tuesday June 17th
Caroline's 1 Year Anniversary
of going home to be with our Father
Day 365 in Heaven
Theme for the day: Love your Children, Love your Wife, Love your Parents and most of all Love Jesus!
It has been a year since our Sweet Baby Caroline went home to be with our Father. They say time heals all wounds....I disagree, time makes all wounds less painful but since time is cyclical, you never completely heal. Each year you recall what you went through and you can't help but be saddened again.
Caroline passed away on June 17th, 2007 which was Father's day. This year, Father's day was on June 15th but the significance of the "day" was a rewind of last year. Each hour of this Father's Day we relived the hours from last year when Caroline breathed her last breath and then when home to be with our Father. It was ever so clear, and still painful, to watch the clock and remember where we were last year. From the phone call from Dr. Watts at 12:38 AM, to the 6:45 AM news...we will relive it all. At 8:00 AM on June 17th we will pause for a brief moment to recognize the time when Sweet Baby Caroline left her worldly home entered the gates of Heaven....her new home with the Lord.
It has been a while since I have written a post, but not a day goes by that I don't check the questbook for messages from each of you. Your support, thoughts and prayers have been instrumental for our healing and strength to make it through each day. On many occasions, we have spoke of Sweet Baby Caroline's story and have shared how the Lord carried us through this difficult time. Even to this day, Caroline is touching peoples hearts and changing their lives.
We all know that everything happens for a reason and it is God's will. But what we do not understand sometimes is why and why now. Gram's message below helps us understand this a little better:
So many times I’ve cried.
So many times I’ve wished you home
It's hard for me, a mortal being,
Loves my precious children
Yet I know He does.
I know we could have never survived this pain without our Lord and Savior.
I thank God constantly that He loves us
So much that he gave His only Son
That we could have ETERNAL LIFE
With Him forever…..
She is only “away” with Jesus
When our time here is finished
and all our work is done,
We shall be with her again
In God’s time frame, not mine!
Although I may never dance with her or her mommy do her hair...We know, that in heaven our Sweet Baby Caroline is a beautiful princess and she dances with the Lord.
We love you Caroline!
Daddy, Mommy and Kathryn
Tuesday February 26th
Caroline's Birthday
Day 254 in Heaven
The waves and the sea,
The dew on the grass,
The leaves on a tree
Of God and His nearness,
With crystal-like clearness.
God was far, far away
Every hour of every day!
We love and miss you very much!
Day 214 in Heaven
Day 183 in Heaven
Merry Christmas Caroline!
I wish you were here to share your first Christmas with me. I know you're looking down from heaven and know all the toys I'm getting.
I miss you and love you!
Big Sister - Kathryn
Theme for the day: We received the most wonderful gift of all for Christmas - Jesus!
For Sweet Baby Caroline
From Sue Jackson - "Gram"
So many times during this holiday season, my mind has continuously reflected upon Caroline. The visual of her is still so very prevalent as are the emotions that accompanied that special, although often difficult and painful time. A blessing in disguise, she touched our lives in ways only God could orchestrate. She taught us so much and forever changed the way we would view life before the Lord took her to His eternal home in heaven. At this season, when the whole world is singing about our Saviour, I wanted to share with you a poem I recently read about another special child. It speaks so deeply to the hearts of people because it is based on scripture and God speaks to us through His word.
Christmas in Heaven
when as yet there were none of them.”
~ Psalm 139:16
which God prepared beforehand that we should walk with them.”
~ Ephesians 2:10
when as yet there were none of them.”
~ Psalm 139:16
Day 162 in Heaven
Theme for the day: God is not sitting in the club house with the wealthy but rather He is in the alley with the poor and needy. This season, think not about what you want but what you can give or do for the poor and needy.
Happy 9 month Birthday Caroline!
Over the Thanksgiving Holiday we were blessed with being able to spend time with family and friends and share food and fellowship. We spent some time in Benson, NC where Tanner's Grandmother Judy lived. It was the first time we had a gathering where Judy wasn't in the Kitchen cooking and making all kinds of goodies. It was a realization and reminder of how the past year has been difficult with the loss of Sweet Baby Caroline and Grandma Judy. Although, Caroline never shared a Thanksgiving, there was still an empty seat at the table that she would have filled.
BUT, we are fille with Joy knowing she and Judy both dine with our Lord Jesus!
We love you and miss you both!
Happy Holidays and God Bless You All!
Saturday November 17th
Day 153 in Heaven
Theme for the day: Today is a Gift, that's why the call it the Present - Be Thankful for what God has given you.
A man went to a barbershop to have his hair cut and his beard trimmed. As the barber began to work, they began to have a good conversation. They talked about so many things and various subjects. When they eventually touched on the subject of God, the barber said:
The barber finished his job and the customer left the shop.
Day 131 in Heaven
Theme for the day: In Happy Moments, PRAISE GOD. In Difficult Moments, SEEK GOD. In Quiet Moments, WORSHIP GOD. In Painful Moments, TRUST GOD. In Every Moment, THANK GOD!
Happy 8th Month Birthday Caroline!!
As summer fades to fall and we near the Holiday Season, we think about how Caroline would be enjoying the pumpkins and fall colors with her sister, Kathryn. During this time of the year we often reminisce and reflect about our family and loved ones who are no longer with us. It saddens us to know this would have been Caroline's first Halloween. What would she have dressed up as, would she have enjoyed "trick-or-treating"? The thoughts we now have are is she dancing with the Angels, is she singing to all her friends.
Within the next week the new Levine Children's Hospital will open here in Charlotte. This hospital is dedicated to children and has a family focus where parents can be close to their son or daughter while in the hospital. We had hoped Caroline would have had the 2nd procedure (Fontane) for her Heart Defect performed at this new hospital. The good news, she doesn't have to worry about heart defects anymore...Praise God!
Wednesday October 17th
Day 122 in Heaven
Theme for the day: Have faith God will guide you through your journey for He knows the way.
Caroline has been with Jesus longer than she was her with us. Her stay on this earth, although brief was filled with caring, love and meaning for those who came to know her. Like our journey with Caroline, there are many families who have experienced similar journeys with their children who also lost their fight to survive. This past Saturday, I spoke at the 3rd Annual Butterfly Release in honor of the children who have gone home to be with the Lord. As I looked around the park at the many parents who also lost children I felt a connection and an understanding of the emotion and pain these families have. But like our Sweet Baby Caroline, their children made an impact on their lives and changed them forever.
Why these Children's lives were cut short we may not know until we stand before God, but what we do know is they are FREE!!
Praise God!
Friday October 4th
Day 109 in Heaven
Theme for the day: May we not only praise God during the good times but remember to praise Him during the “not so good” times as well. No matter how difficult our situation is let us always remember that our Heavenly Father sent His only Son to die on the cross for you and me. His Holy Spirit is with each of us every day to comfort, sustain, and enable us to go through every circumstance we may encounter.
Thank you God!
A few weeks ago, Tanner and I were asked to share our testimony with our Church - Forest Hill. As I sat out on the bench in the heat while waiting for the filming, all of me began to relive each and every moment of Caroline's journey on this earth. In the planning and making of the video below, I was once again filled with the realization that she served an amazing purpose during her 112 precious days. That purpose and mission, ordained by God for Caroline, was to show and teach Tanner and I that we were to reach out to others. In doing so, we would be sharing the joy and love we have in our relationship with God, each other and our family. God chose Caroline to touch lives and she taught us to reach out to those who do not know Him, sharing His love and desire that all come to experience His love for them. Let us be ever mindful and thankful for the many things He does for us……….His limitless love.
We pray the below message will touch your heart and encourage you to live life to the fullest and praise God each and every day.
To play the video go to:
http://foresthill.lightcastmedia.com/console.php?u=3037&c=1380161362
If that doesn't work, go to: www.foresthill.org
Go to: Messages – Crazy Things Christians Do - Anointing with Oil by David Chadwick – click on Watch Video
We love you all!
Michael, Tanner and Kathryn
Wednesday September 26th
Day 101 in Heaven
Theme for the day: Do not be sorry, do not be sad for everything happens for a reason. God has a plan and His plan is always for the best.
Happy 7th Month Birthday Caroline!
I miss you Caroline!
Each day we are thankful for the strength God has given our family. The strength He has given us helps us through another day, another day to heal and another day to love one another. This past week was filled with reminders of our Precious Child Caroline and her journey. In Caroline's name we did the Heart Walk, the Golf Tournament and the dedicated message at our church from our family. This past week is continued testimony of how our story has touched so many lives and how Caroline continues to impact families with the message God intended for her to deliver.
We learned God doesn't take from us to be mean or evil, but rather he takes from us to spare us or our loved ones from the evil that may plague their lives in the future. We truly believe this was God's intention for taking Caroline home. We know her quality of life would have been limited and her ability to be a normal little girl and later woman would have been impacted.
As our Pastor stated this week, "If Caroline had a chance to come back, she wouldn't, rather she waits to greet us one day in heaven."
What a great feeling to know we will see her again and she will be at the gates when we enter our Father's Kingdom.
Happy 7 months Sweet Baby Caroline!
We will always love you.
Mommy and Daddy
Tuesday September 17th
Day 93 in Heaven
Theme for the day: To be a leader is to first be a servant. Be a servant of God and you will lead all.
It has been 3 months today since Caroline’s passing. Somehow, it seems so much longer. Each day that passes we begin to heal but not forget. Our thoughts are always of Sweet Baby Caroline but we know she sits with Jesus and is free.
Kathryn's First Day of Pre-School
Kathryn has started to pre-school and summer will soon give way to Fall. We know that “to be absent from the body is to be present with the Lord.” This and many other promises of God continue to sustain us as we go through the grieving and healing process each new day brings. Tanner and I have visited the hospital again since our last posting. As difficult as it was to make that walk again, we feel this to be part of our healing process. It is comforting and therapeutic for both of us to visit again with the doctors and nurses who were so much a part of our lives. Many of them continue to remember and struggle with Caroline’s loss with us. As we looked around at an almost filled to capacity room of new Levine Cardiac Kids support group, our hearts went out to them and their families and the pain they are experiencing.
This past Saturday, some 16 family members and friends, joined in the Charlotte Heart Walk. Wearing shirts printed in Memory of Caroline, we joined forces with a host of others who walked for Heart Awareness and to raise funds for research and treatment. With every step came that feeling of satisfaction that we were and we can all make a difference. Although we walked in memory of Caroline, we personally walked those miles out for those of you who we know would have joined us if it had been feasible.
The Golf Tournament in Caroline’s honor and memory is this upcoming Saturday. Our hearts are overwhelmed at the outpouring of support we have been given. We look forward to the success of this and are grateful for the opportunity to raise funds for the new Levine Children’s Hospital for pediatric heart patients. We will be sharing with you in the near future about this and other opportunities that we are being given to share Caroline’s Journey with others.
Our family continues to thank you for your many thoughts, prayers and words of encouragement.
May God richly bless each of you!
We love you all!
Michael, Tanner and Kathryn
Sunday August 26th
Day 71 in Heaven
Happy 6 month Birthday Caroline!
Theme for the day: As time moves forward, healing begins. Until you can put your faith in God believing that He will carry you through difficult times, complete healing and comfort can never be.
Today is Caroline's 6 month Birthday. We celebrate her life and her purpose and the blessing that God allowed us to share for 112 days. There is not a day that goes by that we don't think of and continue to miss her.
I often wonder if God allows His little children to have a special connection to other children who are in Heaven. Sometimes, out of the blue, Kathryn will look up to the sky and wave her hands in the air and say "Hey Caroline!". What a warm thought it is to believe she can catch a brief glimpse into Heaven and see her sister with our Father.
Your Gram wrote:
Caroline, we know that you are peaceful, playing and enjoying God's best. It is at these times when we tend to ask ourselves that all too familiar question of "Why" that we are quickly reminded that He knows best. When we focus on those whose lives she touched and changed, those in the past and those who have yet to hear her story, that was Caroline fulfilling our Heavenly Father's calling those 112 days here on earth. Her plight here served as a mission field to witness to others of God's love and His desire that we all be mindful of how short and limited time can really be. Her strong will encouraged so many and brought us all together. I feel that Caroline’s chosen purpose was to make us
ever mindful to love one another and to hold our children and other family members close to our hearts cherishing every moment we share with them.
Thank you Caroline for teaching us so much. Thank you for blessing us in your short time here and giving us life lessons that we shall always hold on to. The gift you were will live on forever in our hearts.
Love,
Your
Gram (Sue)
We love and miss you very much Sweet Baby Caroline!
HAPPY BIRTHDAY!
Mommy, Daddy and Kathryn
Thursday July 26th
Day 40 in Heaven!
Theme for the day: Praise God, be thankful and love one another!
Today is Caroline’s 5 month birthday. At 5 months most children are learning to recognize their name when called, sit up with minimal support and beginning to make their own sounds when hearing others. We can only image what Caroline would be doing on her 5th month birthday. Would she be sitting up, laughing when tickled and sleeping peacefully when rocked to sleep? These are questions we will never know the answers to nor will we get to experience.
But we sleep a little easier each night knowing Sweet Baby Caroline is free from all the worldly limitations and life lessons. She is with the Father, the Creator, who has overcome death to give her and all of us eternal life. The eternal life she now has gives us hope and faith that we will one day see our little girl again.
Praise God for all He has given us and for all He continues to provide each and every day!
Happy 5th Month Birthday Sweet Baby Caroline!
We love you and miss you!
Mommy, Daddy and Big Sister Kathryn
Wednesday July 18th
Day 32 in Heaven!
Theme for the day: There has never been, nor will there be, at time when God is not aware of your needs.
This email was forwarded to me, along with other people who prayed for Caroline and our family. I feel it's time to give back what was given to us and focus our prayers on this child of God - Cali.
From Cali's Grandmother
Brenday Moody
Hello friends, Cali needs a miracle. She has a very rare tumor called Classic Medulloblastoma. This type tumor is very fast growing and there are only 80 children in the U.S. who get this tumor a year. They are normally boys between the ages of 4-6 years old and the survival rate is just 20% - 40% in toddlers. Unfortunately, the survival rate for a little girl under the age of 2 is either 100% or 0%.
I am trusting that the lord has allowed this so that one day Cali will travel the world and tell everyone that God had performed a miracle on her body and spread the love of Jesus Christ. Thanks for praying, please continue to pray like you've never prayed in your life for my little granddaughter.
Love and blessing,
Brenda Moody
Tuesday July 17th
Day 31 in Heaven!
Theme for the day: Make a difference!
One month ago today Sweet Baby Caroline went home to be with the Lord. Not a day goes by that we do not think of Caroline and look up to heaven to imagine her dancing with the angels.
Last Saturday we stopped by the CVRU where Caroline spent 103 days of her life. It was difficult to walk those all too familiar hallways reliving the sounds and smell of the hospital. There was a wave of sadness that came over us as the door to the CVRU opened and we did not see the bright yellow sign that said CAROLINE with butterflies and ladybugs surrounding her name. As we walked in we were warmly greeted by the many Nurses and the Respiratory Therapists who cared for Caroline day and night. It was the first time we had seen or spoken to since the funeral. And of course in his usual manner, Dr. Watts made an entrance into the CVRU. When he realized we were there, he gave a smile and walked over to give Tanner a hug and shake my hand. We spent a few minutes talking about how we were doing and expressed our gratitude to Dr. Watts for all he did for Caroline and our family. He shared with us that hardly a day goes by that he doesn't replay or relive each step of Caroline’s journey looking for something to take and learn from to benefit the next child with her condition. He included that if you do not learn from unfortunate situations, you are in the wrong business. Hearing that gave us comfort in knowing that Caroline’s case (as the medical folks call it) will be used to guide doctors and nurses in caring for the vast number of children who may follow Caroline with similar health issues. We then spent a few minutes talking about how our last 4 weeks had been while sharing a thought or memory of Caroline. Unlike the last time we walked out of the CVRU, this time we walked out knowing Caroline made a difference in the fight for Congenital Heart Defects and her story will help another family whose child is in the hands of Dr. Watts and Dr. Baird.
The hardest thing I think about losing a child is the fact that we always think about what could have been. When an elderly person passes away, like “Grandma” Judy Robertson this weekend, as sad and hard as it is, you have many years of memories and stories to tell of that person through pictures, videos and shared experiences.. With Caroline, we hold on to just 112 days of pictures and memories that tell the story of God’s child and her courage and strength to survive. Her legacy will be what all of us who followed her story do with it each day forward.. We can use what she taught us by listening, caring and offering love and encouragement to others with whatever problems they may have. Or we can use it for ourselves to come closer to God and make a difference in this world. Hopefully, many of us will strive to do both.
Give Him the glory for allowing Caroline to change our lives forever.
Because of her, we are forever changed!
Please pray for my family once again as we begin the difficult process of laying “Grandma” Judy to rest in Elizabethtown, NC. Also, special prayers for all the children that come and go through the CVRU and for increased skills and wisdom for the many doctors and nurses that tend to them each and every day.
May God bless you all!
Love, Michael and Tanner
Sunday July 15th
Day 29 in Heaven!
Theme for the day: Don’t stop, don’t quit, keep living, God loves you!
Today brought more sadness to our family. At 2:05 PM, Tanner's grandmother, Judy Robertson, went home to be with the Lord and joined Sweet Baby Caroline in Heaven. Grandma Judy had been fighting Chronic Obstructive Pulmonary Disease (COPD) for sometime, however, the last 6 months proved to be the most difficult in her fight to survive. We thank God that she was not in pain and passed quickly in her sleep.
Many of you who read this know Judy (Grandma) and remember her most for her kind heart and her passion for cooking and always making sure you were fed and never hungry. I remember my very first trip to White Lake and meeting Judy. Instantly, she embraced me and welcomed me in as if I were one of her own children. She then immediately said, "Honey,can I get you something to eat?”. Everyone who came to know Judy loved her and knew of her compassion and hospitality for others. We mourn the loss of this great woman whom we all loved so dearly. However, we take comfort in knowing that a host of angels and loved ones in heaven, including her beloved husband, ML, welcome her home. Grandma Judy was representative of a "southern lady of charm" and blessed the lives of her children, grandchildren and all extended family members. She will be missed!
Although Caroline and her great grandmother never got to meet here on this earth, we have no doubt they are already together in Heaven and Grandma is making a cake or pie for Caroline. Please say a special prayer for our family as we cope with the loss of another loved one within a month’s time.
We love you Grandma!
Judy Robertson 1926 - 2007
Tuesday July 10th:
Day 24 in Heaven
Theme for the day: Count your blessings and give praise to God for all of them!
We are still amazed and grateful for the continued prayer and support from everyone that has walked this journey with our family. Each day we are reminded of how much of an impact Caroline had on everyone. It has been Twenty four days since Caroline has gone to be with the Lord and she is still touching lives and making a difference for people.
Brian Parsley wrote the below article about counting your blessings and living your life to the fullest.
Get up on the inside!
Do you know your blessings? Many people spend their whole life searching for the answer to that question. Few ever really find it. If you're down on yourself because life is not turning out exactly as you planned or hoped, you need to "get up on the inside" and realize you have a gift.
A few months ago, our 2-year-old daughter was in a foul mood. My wife and I became frustrated that she was acting out. I received a phone call the next day, on March 6, 2007, that changed my thinking forever.
My friend Michael called to say their daughter Caroline (who was only a few days old) was going into the hospital because of a broken heart. Specifically, Caroline was diagnosed with a congenital heart defect that encompassed three major issues: VSD (hole in the heart), coarctation of the aorta, and a small mitral valve in the left ventricle. Michael told me she Caroline was going to undergo open-heart surgery. To document and share her progress with the world, Michael created a blog (sweetbabycaroline.com).
The news made me stop and think how our lives can be turned upside down in an instant. It also made me think about how I live my life.
Here are a few things I have learned from baby Caroline:
Gratitude. It's not enough to just say you're "grateful" for your job, significant other, health, friends, or children. The secret is to ask yourself a question. Why? Why are you grateful for your child? What do they do or give you that make you feel this way? When you stop and think about why you feel a specific way, it impacts your attitude. And it's your attitude that will drive your behaviors that impact the people you care about most.
Live For Today. If you had a month to live what would you do? What would you not do? I left a local bagel shop today and witnessed a lady start screaming because her bagel had lettuce on it. If she had bit into a roach, I could justify her anger. But too many people get upset over the smallest things. These may be symptoms of your stress-filled life, but that doesn't make it right. If it won't impact your life in 20 years, then it probably doesn't justify getting upset over. Live every day as if it were your last, because one day, you may be right.
Forgive. People are quick to judge and slow to forgive. I was flying an overnight flight from California to North Carolina last week hoping to get a few hours of sleep. Unfortunately, the people in front of me had a crying baby (the entire trip) and a three year old who ran up and down the aisles (the entire trip). To say the least, I was getting angry because the parents didn't seem to care what was happening. But what if they were flying to a funeral? What if they were taking their baby for an operation in Charlotte? By asking myself these questions, I became less stressed and a lot more relaxed because I didn't let it bother me.
Create A Legacy. What will you be known for after you're gone? It's about having a purpose beyond just acquiring wealth or breaking records. Think about what you can create or do that will impact others 100 years from now. When you begin thinking of how you can help others, your own actions begin to transform into purpose. That purpose is what will turn into your legacy.
On June 17, 2007 (Father's Day), baby Caroline passed away in her daddy's arms. What moved me was Michael's statement about her. He said, "We were brought together through Caroline so we could be changed by her journey. We are forever changed because of her." She may have only been on earth a little over 100 days, but thousands of strangers that didn't even know Caroline came into her life through word of mouth. She never spoke a word or broke any records, but she left a legacy that will live on forever.
Next time you feel frustrated or impatient, keep in mind that the answer may be less complicated than you think. Sometimes you can find it without even saying a word. Your gift is to be alive and your responsibility is to live your life to the fullest.
Brian Parsley, author of InspHIREd, is an Audience Captivator. He is the President of TrainOne, Inc. and COO of Charlotte-based BuyGitomer, Inc. in Charlotte, NC. He gives seminars and works with businesses to develop best practices, keep customers loyal, and increase revenue through effective selling skills. He can be reached by calling 704-333-1112 or brian@trainone.com.
Thank you Brian for sharing the impact that Caroline's journey has made on your life.
Friday July 6th:
Day 20 in Heaven
Theme for the day: Praise God for all He has done and for the many blessings He has provided for all of us.
Thanks to Brian Parsley, we were able to get Caroline's video posted on the web site. To view, click on her baby photo on the Sweet Baby Caroline Video tab.
This video is a wonderful representation of the 112 days that we were blessed to be able to share with Caroline. Her journey, although very short, is an inspiration to our family and to those who have shared this time with us.
We love you all!
Michael, Tanner and Kathryn
Monday July 2nd:
Day 16 in Heaven
Theme for the day: Pray for continued strength for our family and all who followed Caroline's journey. Pray for God to lead us down the path to continue the message Caroline started and for her story to continue.
Update on our Family
Our thanks to those who have continued to visit the web page since Caroline's passing. We so appreciate your continued thoughts and prayers as we go through this time of healing. Our hearts continue to be touched and our spirits refreshed and renewed by the outpouring of kindnesses for our family. We have been shown such thoughtfulness each day and continue to be made aware of numerous people who followed her journey that we had no knowledge of.
We took some time last week enjoying Kathryn, getting some needed rest, as well as reflecting back over the past few months. We write this tonight to let you know that we have not forgotten those of you who supported us through Caroline's web page. We continue to come here each day as this was a haven for us for so long. We realize that many of you bonded with Caroline and her plight. We know that it has been difficult for you in a similar fashion to our grief. We pray that as we heal that you do also.
We plan to keep the web page ongoing for awhile and we would like for you to remain a part of our family’s continual healing process. We also would like to share with you from time to time about different ways that God chose Caroline to change our lives and those of others. Also, there is discussion of a couple of events to honor Caroline that will be forthcoming over the next few months. We would like to share those with you as well.
We know that God had His hand and a purpose in and upon Caroline's life……and we believe that purpose will be ongoing.
We appreciate your continued prayers as we commit to praying for those of you.
We love you! Michael, Tanner and Kathryn
Thursday, June 21st:
Day 5 in Heaven
Theme for the day: Rejoice and Praise God! Caroline is free!
Dear Everyone,
In times of our weakness, we are made strong in the Lord. Though the last several days have been the most difficult that we could imagine experiencing, God has been with us each step of the way. So many times, we stood in total awe of His presence as we faced the decisions and preparations for Caroline's earthly body to be laid to rest. II Corinthians 5:8 says, "to be absent from the body is to be present with the Lord." What comfort and peace has been ours every moment of each day knowing that she went immediately to be with our wonderful Heavenly Father.
During the last 3 and 1/2 months, we have expressed our gratitude to those of you who made the journey with Caroline through visiting her web site, daily praying and interceding on her behalf, as well as for our family. It was your prayers, offerings of scriptures and encouragement that helped sustain us through each day.
Tanner and I felt that neither the visitation nor the Memorial Celebration Service for Caroline would be complete without each of you with us. On Sunday evening, many hours were spent printing out each and every page of your contributed postings and placing them into two memory books created to honor Caroline. They were then taken to each service and used as Caroline's continuing Guestbook. Our hearts were overwhelmingly blessed by the vast numbers who attended one or both of her services. Each was truly beautiful and a wonderful tribute to Sweet Baby Caroline.
We give honor and thanks to God for choosing us to be Caroline's parents and we shall always cherish the 112 days of her short life here with us. As is written in Psalm 30:5, "weeping may endure for the night, but joy cometh in the morning."
Tanner and I want each of you to know that we have God's joy and His hope in our hearts. We ask that you continue to remember us in your prayers as we will each of you. We would like to leave you with this scripture, 1 Samuel 12:22, "The Lord will not forsake his people for his great name's sake: because it hath pleased the Lord to make you his people."
May God richly bless each of you.
We love you,
Michael, Tanner and big sister, Kathryn
Memorial Services for Caroline Elizabeth Jackson
Visitation
Tuesday, June 19th 6:00 – 8:00 PM
Harry and Bryant Funeral Home
500 Providence Road
Charlotte, NC
704-332-7133
Memorial Service
Wednesday, June 20th 3:00 PM
Forest Hill Church
7224 Park Road
Charlotte, NC
Internment
Magnolia Memorial Gardens
Calvary Church
5801 Pineville-Matthews Road
Charlotte, NC
Flowers
Elizabeth House
1431 South Blvd
Charlotte, NC
704-342-3919
The family requests that donations be made to Levine Children’s Hospital. Tanner and I are so appreciative of the wonderful doctors, nurses and other staff who gave Caroline such wonderful attention, care and time. We are currently working with a newly formed group, Levine Cardiac Kids, to help raise money for the Cardiac Intensive Care Unit at Levine Children’s Hospital, which is rapidly becoming the #1 Pediatric Heart facility in the Central Atlantic Region. This unit will provide the latest update in medical technology for children that will follow Caroline in years to come.
Please send any donations to:
In Memory of Caroline Elizabeth Jackson
Levine Children’s Hospital Cardiac Intensive Care Unit
In care of Carolina’s Health Care Foundation
P.O. Box 32861
Charlotte, NC 28232
Services under the Direction of Harry and Bryant Funeral Home
Monday, June 18th:
Day 2 in Heaven
Sweet Caroline
You let us share your journey
Only you and God could see
Together you taught us courage
To accept what's meant to be.
Life here so restricted you
Your spirit is now free
As you frolic in the heavens
We'll be looking up to see.
With broken hearts and empty arms
We begin our journey back
The faith and strength we learned from you
Will keep our steps on track.
God, thank you for this special child
Whose short life touched so many
The memory of the gift she was
Will sustain us more than any.
We love you Caroline...
Written for Caroline 6/17/07
Love, Your Gram
Sunday, June 17th:
Hospital day 103; Post Surgery #1 day 102
Post Surgery #2 day 25
Day 1 in Heaven!
Theme for the day: Caroline is healed!
I write this post today with a broken heart and saddened news. This morning at 8:30 AM, we held our little girl one last time in our arms before releasing her into heaven to be next to God. She is now free from the infection, bacteria, swelling and pain that have plagued her body for the last 104 days. We are deeply saddened to lose our little girl here on earth, but we are comforted by God in knowing that she is now healed and with a perfect body.
This has been the most difficult journey that any parent could ever go through. Our Faith has been tested and challenged the entire way. But like Caroline we were strong throughout the journey, she did not give up, neither did we. In the end, the infections had beaten her body down so much she was just not able to recover. Our little girl is now sitting in heaven with God, in her perfect new body, looking down and smiling at all the people who have prayed and supported her and her family throughout her brief period on this earth. During that brief period, she has touched numerous lives by her will and desire to survive. We are grateful to all who have been so dedicated to praying for Caroline and our family. Thank you all!
I am thankful I was able to spend Father's day with Caroline and as difficult as it is to lose a child it is an honor to give our Holy Father our child as a gift on Father's Day.
We love you Caroline and will miss you very much! You will always be in our hearts each and everyday. God bless you little child.
"PRECIOUS CHILD"
by Karen Taylor-Good
In my dreams, you are alive and well
Precious child, precious child
In my mind, I see you clear as a bell
Precious child, precious child
In my soul, there is a hole
That can never be filled
But in my heart, there is hope
'Cause you are with me still
In my heart, you live on
Always there never gone
Precious child, you left too soon
Tho' it may be true that we're apart
You will live forever... in my heart
In my plans, I was the first to leave
Precious child, precious child
But in this world, I was left here to grieve
Precious child, my precious child
You will live forever... in my heart
God knows I want to hold you,
See you, touch you
And maybe there's a heaven
And someday I will again
Please know you are not forgotten until then
You will live forever... in our hearts Sweet Baby Caroline
We love you,
Mommy, Daddy, Kathryn and Riley
To all the Doctors, Nurses and Repiratory Therapists at the CVRU and Cardiologists at Presybterian Hospital,
THANK YOU!
Thank you for working endlessly to try and heal Caroline so she could come home. You all are more than
Doctors and Nurses to us, You are Family! You are as much of Family to Caroline as we are and we love and appreciate all you have done for us. I know Carloline looks down from heaven and smiles at each and everyone one of you as well as thanks you for doing your best to bring her home.
May God bless you all.
Love Michael, Tanner and Kathryn Jackson
Saturday, June 16th:
Hospital day 102; Post Surgery #1 day 101
Post Surgery #2 day 24
Theme for the day: Pray for the Extreme Swelling to go! Pray for the healing of Blood Fungus and Blood Sepsis. Pray for Caroline's respiratory system to remain stable and not have to go on ECMO. Pray for her blood pressure to remain normal and her paritoneal catherter to begin draining. Pray for peace and no pain for Caroline. Pray for her kidney's to continue making and to recover, BUN and Creatinine levels to return to normal. Pray for her lungs to strengthen and drain of fluid. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
Today’s was Kathryn’s Birthday Party, her official Birthday was on the 14th, and we spent most of the day preparing and participating in the party. It was a wonderful party with lots of children, family and friends coming to celebrate Kathryn’s 2nd birthday. However, it was sad to look around and see all the children laughing and having fun and then think about Caroline lying in the hospital critically sick. There is a part of you that feels guilty that you are celebrating an event when your child is fighting for her life. One thing we have realized in this journey is that we must continue to give Kathryn as normal of life as we can while we also try and maintain our focus and support for Caroline.
With only getting phone updates throughout the day, we have not had a chance to see how Caroline looks. She had a bumpy night with her blood pressure and her O2 stats. They had to take her up to 100% on the Oscillator and give her volume to keep the blood pressure up. By morning, they were able to take her back to 75% on the Oscillator and she remained steady through the day.
Tonight when I called to check on Caroline, I learned she is having another bumpy night. Her blood pressure has been slipping down so they have increased Dopamine to 12mcg’s and started her back on Primacore. The Primacore seemed to have a negative effect on her blood pressure stats so they stopped it. Her blood pressure seems to be climbing back into the normal ranges but they have had to increase Oscillator up to 80% and her Nitrous Oxide intake is now at 20%, up from 5%.
During the night, she had stopped draining through the Paritoneal Catheter and Dr. Masengil was called in to look at the catheter. She was able to get it back open to drain but the drainage has been slow. As a result, she is now 187cc’s positive (more in than out). I can only imagine she is now even more swollen than yesterday.
It is clear the Sepsis Bacteria is beginning to rear its ugly head and really work against Caroline. Each hour that passes by seems to be more difficult than the previous for her. We pray and ask God to lay His hands on Caroline and remove the bacteria from her body and keep any other infections from entering in. We believe and have faith He will bring her body to complete healing and will bring her home to us. When? How soon? Only God knows and His time may not be our time, we must be patient and continue to keep the faith in His work. We Praise Him for both Kathryn and Caroline!
Please continue to pray for Brooklyn and Victoria at Presbyterian Hospital and the 3 little boys in CVRU with Caroline.
Also, please say a prayer for Great Grandma Judy that she becomes stronger and recovers from her sickness so she can go home.
We love you Great Grandma!
Friday, June 15th:
Hospital day 101; Post Surgery #1 day 100
Post Surgery #2 day 23
Theme for the day: Pray for the Extreme Swelling to go! Pray for the healing of Blood Fungus and Blood Sepsis. Pray for Caroline's respiratory system to remain stable and not have to go on ECMO. Pray for peace and no pain for Caroline. Pray for her kidney's to continue making and to recover, BUN and Creatinine levels to return to normal. Pray for her lungs to strengthen and drain of fluid. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
Caroline had an OK day today. Her vitals dipped a few times and the doctors and nurses had to respond with blood volume, bicarb and increased medications. The slightest interaction or movement of Caroline causes a downward spiral of her O2 stats. As a result, Caroline is positive about 109cc’s (more in than out) midday. Her Paritoneal dialysis is not yielding as much out as they would like to see. Throughout the day, it was only pulling about 20cc’s – 30cc’s out and they had to put back about the same. However, towards the end of the day, she started putting about a little more and as of 10:30 tonight, she was down to just 39cc’s positive.
Nurse Candy indicated she looks to be a little more puffy than when we there this morning and that she is starting to see the dark purple in areas of her body. The dark purple represents tine blood vessels that are breaking due to the extreme swelling.
The Infectious Disease doctor came in while we were there and indicated she is now 13 days negative for Blood Fungus, Praise God! They are still treating her with antifungal medication to ensure the fungus doesn’t reappear. Also, they are getting positive cultures for the Sepsis bacteria coming from the peritoneal fluid so they added Vancomycin to the dialysis to combat the bacteria directly in the peritoneal space.
Due to some blood pressure issues early this morning, they had to increase her Dopamine drip to 10mcg’s. Since, her blood pressure has been steady and there is good perfusion in her lower extremities. The Dopamine had to be increased due to the swelling putting so much pressure around her heart that it cannot perform as it needs to to maintain a target blood pressure.
We are so thankful for all the people who took time to fast for Caroline on her 100th day in her journey. Kristi shares some of the feedback from the wonderful people who fasted yesterday:
*stand strong..to not become weary and *continuing faith knowing God is in control. and that Gods love for you all would be manifest in a very real way. *prayer for finances that this would not be a financial burden to your family. Always asking *God to heal Caroline..that her heart would be healed and there would be steady improvement. *wisdome for the doctors and staff *for Caroline to develope normally dispite the tubes, beepers, sedations. *one lady (she is a grandma) prayed that you would have oppertunities to be able to hold her and that it would be soon that she would give you a smile. *many prayers that she would be able to rest and not have pain or discomfort......*that the spirit of the Lord and the peace of the Holy spirit would be upon her....*that all the people working with her and that have had contact with you all would be touched by the hand of God and that their lives would be changed.
We continue to stand and trust.....love Kristy and gang!
Thank you to Kristy and all who participated and dedicated their day to Caroline. Because of you, we continue to have strenght to stand and face each day with newly energized mind and body. Because of prayer and support from all of you, Caroilne continues to fight for her life and does not give up. God has brought us all together through Caroline so we could be changed by her journey.
We are forever changed because of her!
Praise God for all He has and continues to do for us!
Thank you all!
Michael and Tanner
Please continue to pray for Brooklyn and Victoria at Presbyterian Hospital.
Caroline welcomes Jacob and 2 other boys to the CVRU.
May God bless these childern and thier faimilies as they endure these difficult times.
Thursday, June 14th:
Hospital day 100; Post Surgery #1 day 99
Post Surgery #2 day 22
Theme for the day: Pray for the Extreme Swelling to go! Pray for the healing of Blood Fungus and Blood Sepsis. Pray for Caroline's respiratory system to remain stable and not have to go on ECMO. Pray for peace and no pain for Caroline. Pray for her kidney's to continue making and to recover, BUN and Creatinine levels to return to normal. Pray for her lungs to strengthen and drain of fluid. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
Today marks the 100th day that Caroline has been in the hospital fighting for her life. It’s hard to believe that just 100 days ago she was home in her crib just like any other new born. Little did we know that her heart had a defect and as each hour passed by she was struggling to survive. Fast forward 100 days and look back at what this little girl has been through and it is truly amazing she is still with us. Even though she is very sick and her appearance has changed, she still is that beautiful little bundle of joy we once held in our arms. That day will come again when she is healthy and free from infection and tubes. We have complete faith she will prevail and overcome this difficult time.
Overall, her day was pretty steady. She had a few minor dips with her blood pressure and blood gases but with a few changes to meds they were able to stabilize her. She is still very swollen and her peritoneal dialysis is removing 20cc’s – 30cc’s per hour. However, due to increases in feedings, 3cc per hour of Portagen, and additional Albumin plus a Bicarb (used to help maintain homeostasis) she is +64cc’s for the day (more in than out). Also, we are at day 11 with no positive blood cultures for the blood funus!
The doctors have chances some of her medications including removing Versed (sedation) and adding Fentanyl (sedation). Her blood pressure has been mostly steady therefore they have left Dopamine at 6mcg’s. There have been minimal changes on the Oscillator which indicates they are still successful in maintaining her respiratory function. She did get a bath today, well not a bath like you and I would take, but rather a sponge bath to clean her body and a changing of her bed linens. Caroline’s hair is growing and has to be washed and combed from time to time. The nurses are pretty good about keeping her looking sweet by putting a bow in her hair.
Caroline’s big sister Kathryn turned 2 years old today! We took her to Carrowinds Theme Park, she had a great time seeing all the characters and riding rides. For her big 2nd Birthday dinner she wanted Hotdogs, Cupcakes and Popsicles, pink of course!
Kathryn born at 5:42 PM Happy 2nd Birthday Kathryn!
Kathryn helps Mommy pick out flowers
for her 2nd Birthday.
One for Kathryn and one for Caroline.
Happy 2nd Birthday Kathryn!
Wednesday, June 13th:
Hospital day 99; Post Surgery #1 day 98
Post Surgery #2 day 21
Theme for the day: Pray for the Extreme Swelling to go! Pray for the healing of Blood Fungus and Blood Sepsis. Pray for Caroline's respiratory system to remain stable and not have to go on ECMO. Pray for peace and no pain for Caroline. Pray for her kidney's to continue making and to recover, BUN and Creatinine levels to return to normal. Pray for her lungs to strengthen and drain of fluid. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
Caroline had a fairly smooth day without any big incidents. Overall, she was stable with the exception of a few times where her vitals dipped. Early this morning, they had to increase her Dopamine to 8mcg’s to stabilize her blood pressure. Fortunately, they have reduced it back to 6mcg’s. Since, her blood pressure has remained stable and her heart rate has been in target ranges.
Still, the major concern is the edema (swelling) and how it’s impacting the lungs. There is so much swelling in the chest that they are still having challenges keeping her O2, CO2 and blood gases stabilized. Even with the Oscillator, the respiratory vitals are up and down creating concern about how to keep her stable. If they cannot keep her respiratory vitals stable and the Oscillator is not able to keep her ventilated, Dr. Baird stated next steps would be ECMO. PLEASE pray for Caroline to not have to go on ECMO!
The Enterococcus bacteria is causing extensive capillary leaking into the 3rd space which is causing the extreme swelling. With so much swelling all over Caroline’s body, especially head and chest, she is swollen to the degree of her skin is hard with no give when you press on it. It’s a very disturbing to see her in this way.
We are now 10 days with no positive cultures from the blood fungus. Praise God for the healing of this Fungus! This is a victory for Caroline, many did not have faith that she would survive this infection. But she did and she will survive the next!
Tomorrow is Kathryn’s second birthday. As we celebrate 2nd year of Kathryn being in our lives, we can’t help but be saddened by the empty seat where Caroline should be sitting celebrating this day with us. Even with that empty seat, Caroline is never out of our thoughts or our prayers and she is always in our hearts. Tomorrow also marks the 100th day that Caroline has been in the hospital fighting to survive. In these 100 days she has battled 2 open heart surgeries, 3 catherizations, 1 pacemaker implant, 2 Sepsis bacteria infections and 1 Blood fungus. She is a fighter and has a strong will to survive.
In honor of Caroline’s 100th day in the hospital, Kristi H. from Washington is leading an effort, along with others, where they will begin fasting for a 24 hour period. During that period, someone will pray for 1 hour every hour for a 24 hour period asking for God to heal Caroline. I encourage all who follow Caroline’s journey to participate. Even if you do not fast, take time out during your day and say a pray for Caroline and all the other children all across this world who are sick and need prayer and healing. Never give up faith that God will heal Caroline and all the children.
It’s amazing how God’s people, who do not even know one another, come together in fasting and prayer for one of His children. Thank you Kristi and others who dedicate tomorrow for Caroline’s recovery and healing!
We love you all!
Michael and Tanner
Tuesday, June 12th:
Hospital day 98; Post Surgery #1 day 97
Post Surgery #2 day 20
Theme for the day: Pray for healing of Blood Fungus and Blood Sepsis. Reduction of EXTREME swelling. Pray for peace and no pain for Caroline. Pray for her kidney's to continue making and to recover, BUN and Creatinine levels to return to normal. Pray for her lungs to strengthen and drain of fluid. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
Caroline had a tough night last night maintaining ventilation and O2 saturation levels. All throughout the night the doctors and nurses worked to keep the Oscillator properly supplying the required levels of oxygen and nitrous oxide. Several times through out the night, they put Caroline in prone position to try and aid her breathing. For the first time, they had to give her a dose of Epinephrine to help stimulate her heart action and an increase in blood pressure, metabolic rate, and blood glucose concentration. Fortunately, only a small dose was needed and not a constant drip. This was not a surprise to Dr. Bair or Dr. Watts as they had anticipated this may be needed.
By morning, Dr. Baird, Nurse Ghie and the Respiratory Therapist had stabilized Caroline and were satisfied with her blood pressure and blood gases. They were not able to wean her off of Nitrous Oxide and in fact had to increase the dosage from 1% back up to 10%. By late afternoon Caroline was around 250cc’s negative (more out than in) but during the night they had to give her large amounts of blood volume, palettes and medication to stabilize her vital signs. At the end of the night, she was just under 100cc’s negative (more out than in). As a result, her swelling reached a level where she was leaking fluid out of areas of skin breach (places where internal lines were going into Caroline). Due to limited Paritoneal drainage and poor urine output, she has swollen even more. Due to the pressure of the swelling, the fluid is forced out of the skin breach areas.
Today, Caroline had a more stable day. The doctors increased her Dopamine level to 6mcg and have reduced Nitrous Oxide to 5%. The amount of drainage vs. the amount of input was almost even. By 3:00 this afternoon she was only 121cc negative (more out than in). The swelling continues to be a major problem for lung expansion and the visual appearance of Caroline. Her eyes are still covered and her body is distorted. Nurse Scott has tilted Caroline’s bed to lift her head above her heart to help with the fluid drainage. His hope is that being slightly elevated will pull some of the fluid from her head and let the eyes go back to normal.
We are at day 9 for negative blood fungus cultures. Praise God! The doctors will continue to treat the fungus to eliminate any traces that may still be present in her body. They have changed her antibiotic Vuconazole back to Fluconazole and she is still on Amphiterican-B. She is still on various anti-bacterial medications to fight the Enterococci bacteria.
Each day that passes is a day given to us from God. We know the next few days and weeks will be filled with ups and downs and we pray for the Doctors and Nurses to be skillful and wise to adjust to the situations that may arise. We believe with all our hearts that God has carried Caroline through every difficult time in this joruney and we know He will continue to carry her until she is healed!
With Caroline’s physical appearance so overwhelming we were reminded that we must walk by Faith and not by site alone. With day 100 approaching, we have a difficult time remembering Caroline’s physical beauty. Our eyes sometimes only see what lay before us rather than looking beyond the flesh into the heart. Caroline’s inner beauty has not changed but only become more beautiful as each day passes.
Praise God for all He has done!
Kathryn and Caroline February 27th, 2007
Please continue to say a special prayer for the healing of Brooklyn and Victoria. Caroline's friends at Presbyterian Hospital.
Also, say a prayer for Caroline's friend Holden, he is coming back to CMC for a procedure tomorrow.
Monday, June 11th:
Hospital day 97; Post Surgery #1 day 96
Post Surgery #2 day 19
Theme for the day: Pray for healing of Blood Fungus and Blood Sepsis. Reduction of EXTREME swelling. Pray for peace and no pain for Caroline. Pray for her kidney's to continue making and to recover, BUN and Creatinine levels to return to normal. Pray for her lungs to strengthen and drain of fluid. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
Another answered prayer from God! Caroline is still critically ill but overnight and today, she made some tiny steps of progress. For the past few days, her blood pressure has remained steady in target ranges with small doses of Dopamine (4mcg’s). Along with her blood pressure, the heart rate, even though paced by the pacemaker, has remained steady around 140bpm – 150bpm. Today, her blood gases have looked as good as they ever have. So good, the respiratory team has been able to turn down Nitrous Oxide 1% per hour (17% to 3%) with hopes of being completely off by 9:00 PM tonight. Also, the Oscillator Ventilator is set at 30% air, down from 100% just 36 hours before and they have stopped the paralytic and are allowing Caroline to move around a small bit.
Nurse Ghie and Nurse Margo have worked diligently over the past 24 hours to remove as much fluid as possible through the peritoneal catheter. As of this afternoon, Caroline is 209cc’s negative (more out than in). She is still extremely swollen and her eyes are covered but we are starting to see a little change in her abdominal area. It doesn’t look as large nor does the skin look as shinny as yesterday. Thank God for this one too…. Aided by a bolus of Lasix, Caroline has made 18cc’s of urine in the past 12 hours. They have put her Foley Catheter back in to capture the true amount of urine vs. weighing diapers. Her BUN level is down to 136 and the Creatinine is at 1.8, both trending down.
We Praise God for this news as well….since June 3rd, all blood cultures have reported back negative for Candida parapsilosis (blood fungus). This is the longest she has gone with negative cultures for fungus since contracting the infection. The doctors will continue to administer Amphoterican-B but may change the Vuconazole due to some incompatibilities with the Sepsis bacteria antibiotics. The two strains of Sepsis bacteria have been identified as Enterobacter (Gram-Negative) and Enterococcus(Gram-Positive) bacteria. Likened to before, the bacteria causes Capillary leaking which then causes edema since the toxins and fluids are not processed by the kidneys.
Please continue to pray as we know that God has intervened on Caroline’s behalf, we saw that improvement today. Last night, my update was less optimistic and somber based on the news we had been given. Knowing Caroline was faced with yet another infection, our energy was drained and our spirits flattened. However, with the many churches and people who have pulled together to ask God to touch Caroline and bring her to complete healing, she is showing signs that she will not give up. All it took to re-energize our spirit and faith for Caroline was just a few tiny footsteps in the right direction. God will never give us more than we can handle and yesterday until today evidenced that promised. Keep the faith and keep praising God for the continued work He does daily in each of our lives. We give our thanks tonight for the progress Caroline has made over the past few hours.
Please pray a special prayer for two little girls who we have come in contact with early on in this journey. Brooklyn and Victoria are on their own journey for survival at Presbyterian Hospital. At one time, Caroline and Victoria were CVRU roommates and for a few hours on March 6th, Caroline and Brooklyn were Presbyterian NICU roommates. We pray for these little girls and their families each night, May God lay His hands on you and your families and bring healing to you so that one day you along with Kathryn will be celebrating birthdays eating cake and ice cream.
Sunday, June 10th:
Hospital day 96; Post Surgery #1 day 95
Post Surgery #2 day 18
Theme for the day: Pray for healing of Blood Fungus and Blood Sepsis. Reduction of EXTREME swelling. Pray for peace and no pain for Caroline. Pray for her kidney's to make urine and to recover, BUN and Creatinine levels to return to normal. Pray for continued vital stabilization and no increases in medications. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
We were awakened by a call early this morning with Dr. Watts on the other end of the phone. He called to tell us the bacteria found the day before had been identified as Sepsis. As you can imagine, our stomachs dropped and even more fear and emotion filled us. How can it be? Not only has she had Sepsis in the past and beaten it, but she’s currently fighting a blood fungus.
We just do not understand why she continues to get these infections (medically we do understand) and why she cannot get well. We immediately went to the hospital and when we entered the CVRU, we could see from across the room that Caroline has EXTREME swelling. Nothing like we have seen in the past, this time she is dangerously swollen. Her head is distorted looking and her eyes have to be covered with a compress to try and reduce as much swelling as possible so they are not damaged. In addition, the conventional ventilator she has been on for 96 days was unable to keep her ventilated. They had to change her over to a type of ventilator known as an oscillator. The conventional ventilator produces steady breaths with volume. The volume that was required to keep her O2 levels up was not available due to the extreme swelling around her lungs. The lungs were not able to expand and with the ventilator forcing the volume, the lungs could have been severely damaged. To aid the ventilation, the oscillator provides low volume but high frequency breaths. It’s almost like tiny jet like air bursts into her lungs but with not much pressure behind them. Even though this type of ventilator is needed for her in this condition, it is a very disturbing visualization. This ventilator sounds like a machine gun firing and Caroline’s poor body is being vibrated which causes her body to shake during each bust of air.
The good news in all of this is that her blood pressure has remained stable and in the target range without much aid from medication. Even with sedation and the paralytic the blood pressure remains stable. In addition, all blood cultures from June 6th forward are still reporting negative for blood fungus. Maybe, just maybe, she has beaten the fungus. Also, the bacteria is considered the lesser of the two evils between it and fungus. Fungus is one of the toughest things to overcome, bacteria, although not easy to overcome, is more responsive to antibiotics.
The Infectious Disease doctors have given Caroline a suite of antibiotics known to fight the Sepsis bacteria while continuing to give her Amphotericin-B and Vuconazole for the blood fungus. To help with the swelling, the 4 drainage tubes are still open and one of the lower tubes is being used for peritoneal dialysis. Throughout the day, Nurse Margo has been able to pull 15cc’s to 35cc’s per hour with the Paritoneal Dialysis. Overall, today she is about 29cc’s negative (more out than in) but the swelling is no different and she is still not making urine.
Doctors Watts and Greene spoke to us today and the reality is she is very critical and the chance of recovery is deemed to be low. She is not out of options but is closer to that point than we were on Friday. The next 24 to 48 hours will tell if Caroline is strong enough to combat the Sepsis and possibility still the Fungus. If her vital signs begin to deteriorate and the dosages of medications max out, we will be faced with an unimaginable decision. If her vitals remain the same or get better and the amount of medication to maintain her remains the same or reduces, this would indicate she is taking small steps in the right direction. Caroline is fully sedated and paralyzed so she does not feel pain nor is she aware of what is happening. No one knows what an infant dreams or what thoughts are processed but I believe she is in a happy place with lollipops and puppy dogs.
Caroline’s situation and status is hour by hour, there are no timetables or magic remedies to cure her. It’s all just patience and time to wait and see how she fights and how the antibiotics and medications help her fight. The BIG question is, how much more can her little body handle? Only God knows and only time will tell. We pray God’s will for Caroline, whatever that is we know it is God’s plan. Everything happens for a reason, what the reason is for Caroline to endure so much hardship, we are yet to know. We do know that she has touched many lives and has changed many people’s faith and outlook on life. In her 3 ½ months on this earth, she has made a difference for all of us who follow her journey.
Pray for a Miracle!
Saturday, June 9th:
Hospital day 95; Post Surgery #1 day 94
Post Surgery #2 day 17
Theme for the day: Pray for reduction of swelling in her lungs and the rest of her body. Pray for peace and no pain for Caroline. Pray for the blood fungus and the bacteria to leave her body for good! Pray for her kidney's to recover and the BUN and Creatinine levels to return to normal and for her to continue making URINE. Pray for nutrition to her body and NO further infections, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
Caroline’s swelling is starting to cause issues with her breathing and the ventilators ability to expand the lungs. As a result, she is unable to produce enough O2 into her blood stream to adequately oxygenate her organs. To correct this issue, Dr. Baird put in a 2nd Paritoneal catheter and 2 chest tubes to help drain the fluid. Her original Paritoneal catheter has all but stopped any fluid drainage so a 2nd was needed. In the first hours, the chest tubes and the Paritoneal catheter did a good amount of draining which immediately helped Caroline’s lungs and her O2 levels in the blood. However, after a few hours, these tubes began to slow and the swelling started impacting the lungs again. The Nephrologists came down to CVRU and ordered dialysis to help with the drainage. The dialysis picked up the flow a little but not enough to keep the lungs able to fully expand with the ventilator. Dr. Baird did not want to damage the lungs so he and Nephrology have changed the dialysis concentration to something more aggressive to help pull the fluid from Caroline. Also, he changed out the current ventilator she has to something that will work more efficiently and not damage her lungs with all the fluid and pressure around them.
Even with the extreme swelling, Caroline’s blood pressure has remained in the upper 70’s to mid 80’s. The doctors have reduced her Dopamine down to 2mcg’s and she is off of Primacore. Her blood gases have been poor all day, primarily from the lack of O2, they have kept her sedated and paralyzed most of the day due to putting in the drainage tubes. Also, the blood cultures from the 3rd have reported positive for the blood fungus and the peritoneal fluid that was pulled just last night has returned positive for Cocci Bacteria. The doctors have administered Vancomycin to fight the bacteria.
For 95 days we have tried to remain positive and strong for each Caroline, Kathryn and each other. The continued days of bad reports and positive blood cultures are stressful to our emotional and physical well being. But we will not quit or will we give up, we believe God has a special plan for Caroline. In many cases, her journey has touched the lives of people all across the country.
So rather we start feeling down or sorry for ourselves, we look around to find someone to bless who is less fortunate. We cannot take for granted what God has given us, even if it’s in a situation like this, we are still thankful for all we have and all He has done for us. There are numerous people who have much less or have been through more and who may not have the luxury of a wonderful following of God’s people as we have, who pray and support us in this difficult time. Look around you and find someone to bless.
God Bless Sweet Baby Caroline and God Bless You All!
Friday, June 8th:
Hospital day 94; Post Surgery #1 day 93
Post Surgery #2 day 16
Theme for the day: Praise GOD! Pray for peace and no pain over Caroline's body. Pray for the blood fungus to leave her body for good! Pray for reduction of swelling, for her Kidney's to recover and the BUN and Creatinine levels to return to normal and for her to continue making URINE. Pray for the OG fluid to return to normal and no tissue impact. Pray for nutrition to her body and NO further infections, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
Caroline had a fairly active day. After a little rocky night, she stabilized and was doing pretty good this morning when the doctors decided to try a get an Arterial line in. On Monday night, they tried for over 3 hours unsuccessfully to get an art line and had been managing by blood pressure cuffs and heel pricks. These are not as accurate or consistent as an Arterial line and Dr. Watts felt we needed to try again so we could have more accurate readings of Caroline’s vital signs. He first tried her left arm for about 20 minutes but no luck, he then moved to her left groin and on the first try he was able to get into the artery. Although we did not want another line in Caroline this line is critical to the ability to monitor vital signs, pull blood gases and administer various medications. This was a “win” for the doctors today!
Caroline is swelling more and more each day and with just a few cc’s a day of urine output, the doctors also had to put in a Peritoneal catheter into her abdomen. They did not hook up the dialysis but rather are allowing gravity to pull the fluid from the Peritoneal space. The intention is to reduce swelling via this catheter to allow more space for the lungs to expand during breathing. However, as of 6:00 tonight, the Peritoneal catheter had only drained approximately 50cc’s. Not nearly enough to reduce her swelling and give the lungs more space. With the continued swelling, the ventilator settings have to be increased to compensate for the additional pressure from the edema.
Starting sometime during the day, Caroline’s OG tube started pulling a bloody fluid from her stomach. This is very concerning as to why she is discharging blood, one thought is that it could be a stress ulcer. The other thought, which is their biggest concern, is there may be some necrosis (death of cells and living tissue) in an organ. There is no way to tell for sure other than monitor the fluid coming from the OG tube and see if it clears up.
Overall, Caroline’s blood pressure has been in the mid 80’s. They have reduced her Dopamine to 2mcg’s and Primacore to .1mcg’s. She is on Portagen tube feeds and doses of Methadone every 4 hours. Her coloring isn’t good; she is very shiny from all of the swelling and her eyes as swollen shut.
This visual is hard to look at since she is so puffy and stiff. When she hears Tanner’s voice she tries so hard to open her eyes and look at her mommy. It breaks our hearts to see her this way. But, we must remain patient and have continued faith that God’s will be done.
This is a marathon, not a sprint……..
Bless This Little Child, Lord
Lord, look down from heaven above
And touch this special child with love.
Protect and hold this little one
Till each and every day is done.
Remind us often that it's true:
This little girl is a gift from you.
A miracle You've sent our way
Lord, bless this little child today.
by: Sue Jackson
Let's shop til we drop Caroline!
Get well and come home soon!
Thursday, June 7th:
Hospital day 93; Post Surgery #1 day 92
Post Surgery #2 day 15
Theme for the day: Praise GOD! Pray for peace and no pain over Caroline's body. Pray for the blood fungus to leave her body for good! Pray for her Kidney's to recover and the BUN and Creatinine levels to return to normal and for her to continue making URINE. Pray for nutrition to her body and NO further infections, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions, no neurological issues and continued prayer for her heart rhythm to return to normal.
Caroline had a pretty bumpy night, her blood pressure had dropped into the 30’s and her color was very poor. The doctors had to give her Albumin and platelet’s to stabilize her pressure. Caroline continues to swell, due to capillary leaking, and is producing only small traces of urine. As a result, they have removed her Foley Catheter and are just weighing her diaper to measure urine output. Removing the Foley Catheter is not a bad thing since it is one less intervention to get infected.
Throughout the day, Caroline has been somewhat active and looks to be in a little pain. It’s hard to say for sure if she is in pain since her blood pressure remains constant. However, just looking into her eyes and as she looks back at you, you see some grimacing and tears. We asked the doctors if there is anything they could give her to make her more comfortable but drugs like Morphine and Versed decrease her blood pressure dangerously low and cause O2 and other vitals to spiral downward. Over the past weeks, we have noticed she relaxes and sleeps when given Methadone. She is on an every 6 hour dosage window and seems to relax for about 4 of the 6 hours. The doctors agreed that we should decrease the dosage but increase the frequency to equal out the total amount given but bridging the gap of 2 hours where she seems to be in pain.
As for the fungus….we may have a little good news, cross your fingers…the blood cultures from the 2nd are still showing negative. We pray for these to remain negative!! It is so critical the two antibiotics (Amphotericin-B and Vuconazole) begin to work because Infectious Disease is saying there are NO other options. If this is the case, then we have only one place to go if the drugs do not work, surgery! The risk of surgery is so high and there is no conclusive evidence the pacemaker nor BT Shunt is infected. The doctors do not won’t to risk surgery unless it becomes a last resort.
I had a conversation with the doctors today and the reality is we are running out of options. If the drugs do not begin to beat this infection we will be forced to perform surgery. Surgery brings no guarantees. For now, Caroline is considered “Critically Stable”. As long as she remains this way, Dr. Baird’s plan is to keep doing what they are doing with the medications, reduce the swelling, continue to nutrition and at some point, begin to try and get her off the ventilator. The reason to continue with this plan is that there are clinical studies that show similar cases where infants who have fungal sepsis, like Caroline, have recovered by taking this route. Recovery times are all over the chart from 1 week up to 1 year! We pray for a speedily recovery!
When I pray for Caroline, I ask God to open my eyes so I can see Caroline as God sees her. Not a little girl with a broken heart and body but a beautiful little blessing God created with his own hands especially for us to care for. Under all the pain and suffering she is beautiful and has touched the heart of everyone who comes to know her. She is fulfilling the work God wants all His people to do.
Praise God for the changes that have come to our lives through Caroline. Praise God for his will to be done and Caroline to be healed! God bless you all!
Miss you Caroline!
Wedneday, June 6th:
Hospital day 92; Post Surgery #1 day 91
Post Surgery #2 day 14
Theme for the day: Praise GOD for healing Caroline! What does this mean? The answer below.
Caroline had a pretty smooth day without any incidents or issues. Throughout the day, her vital signs remained consistent and she was calm. The doctors performed an Echo of her heart to see how the cardiac function was performing. They were pleased with the left heart and the amount of volume the mitral valve is processing. The right heart, which had diminished during the Septectomy two weeks ago, is performing where it was prior to the surgery. Overall, her heart function is as good as it can be after phase one of Hypoplastic Left Heart repair.
Caroline is still fighting the fungus with two antibiotics, Amphotericin-B and Vuconazole. Vuconazole was first administered yesterday so we are still too soon to know if it is having any impact on the blood fungus. In addition, without an Arterial or Venus line to draw blood from, we are waiting until the doctors are confident the antibiotics have had enough time to impact the fungus with any notable results. To capture blood gases, they are doing heel sticks on Caroline once a day. This gives them an indication of how her blood components are and if she needs any volume of albumin to equalize her.
She still is not making very much urine; only 1cc to 2cc’s every few hours. Her BUN is up to 164 and her Creatinine is down a little to 2.0. She is very swollen and as a result, the fluid is leaking out her chest incision. To relive the pressure from swelling, they have released the clamp on her chest drain tube. For every cc she drains, they are adding ½ back. Nephrology wants to keep her a little positive to make sure she does not get intravascular dehydration. She is still at 12mcg of Dopamine and .1 of Primacore. Her tube feeds have not changed.
Caroline has officially set the record for most consecutive days in CVRU. At 92 days, she is 9 days longer that the previous longest stay of 83 days. This isn’t a record we are proud to hold but if you have to find some positive in the negative I guess this will do.
We have been praying for 92 days for God to heal Caroline. Instead of praying over and over again about the same petition, get in faith and stay in faith by praising God for our answer before we see our answer! As you pray, BELIEVE that God has already heard our prayers and healed Caroline. The Bible says He does hear us when we pray according to His will! God wants our praise, not because He needs it but because He’s trying to get us in a position of faith so He can answer our prayers. The key to faith is praising God before we see the answer!
Tuesday, June 5th:
Hospital day 91; Post Surgery #1 day 90
Post Surgery #2 day 13
Theme for the day: Praise GOD! Pray for peace and no pain over Caroline's body. Pray for the doctor's wisdom and skill in finding the cure for Caroline. Pray for the blood fungus to come back negative and the fungus be gone from Caroline's body for good! Pray for her Kidney's to recover and the BUN and Creatinine levels to return to normal and for her to continue making URINE. Pray for nutrition to her body and NO further infections, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions and continued prayer for her heart rhythm to return to normal.
Caroline had a much smoother day than she did yesterday. Monday, may have been one of the most difficult day’s for Caroline based on her vitals being up and down and the 3 ½ hours and 40 plus unsuccessful attempts of getting an Artery for an Atrial line. Without the Atrial line, the doctors are unable to efficiently/accurately monitor Caroline’s blood pressure, draw blood gases and blood cultures. Throughout the night they were able to use the Venus line to capture blood gases and blood cultures, but sometime early this morning, the Venus line clotted off and they are no longer able to get blood pressures or the blood they need for labs and cultures. As a result, they have to resort to heel sticks, which are very painful, for blood cultures and gases. To get her blood pressure, they are using a neonatal blood pressure cuff.
Without an Arterial or Venus line to routinely get blood gases and cultures, the ability to monitor her blood component levels and the fungus within the blood has been reduced to critical situations only. The doctors do not want to continue to stick Caroline to draw blood unless they see Caroline’s blood pressure, temperature or coloring drastically change. They are making an effort to let her body heal and do not want unwarranted sticks.
Infectious Disease reported the sensitivity tests conducted against the blood fungus Candida parapsilosis, resulted in another drug causing high sensitivity towards the fungus. This drug, Vuconazole, is now being administered along with Amphotericin-B. They have stopped the Diflucan (Fluconazole) since the fungus has minimal sensitivities towards it. Since administering Vuconazole today, the doctors will wait at least 48 hours before they attempt a blood culture to check for presence of the fungus. As with any drug, it takes a few days to get into the system so it may take longer to see impact against the fungus, if at all.
Some good news! Dr. Miller, Ophthalmologist, came by to examine Caroline’s right eye. Fortunately, she had a minor abrasion and a build up of epithelial cells. Dr. Miller did a mild scrub of the cornea to remove the excess epithelial cells and treated Caroline with a non preservative artificial tear / ointment drop. This drop will be given to both eyes every hour indefinitely to keep her eyes lubricated.
Also, throughout the day, Caroline has made about 12cc’s – 15cc’s of urine. However, her BUN is still 163 and the Creatinine is 2.2 Her blood pressure has remained steady in the 70’s and her ventilator O2 is at 38% with 40 breathes per minute. Dopamine is still at 12mcg’s with 2cc’s of TPN and 8cc’s of Portagen for nutrition. She is very swollen but draining about 60cc’s per hour, of which they are putting back ½ half of what is drained in the form of blood or albumen. This is to keep her from intravascular dehydration as she has had so many times in the past.
The crises of Caroline’s life is impacting all who follow the journey. We know what it’s like to stand against the enemy armed with nothing but the Word of God and the Praises of God in our mouths. But if we continue to Praise God in this time of crisis and greatest need, that is when God will make us strongest in faith. Then there is nothing that can defeat us or Caroline. No devil or evil circumstance will ever overcome us.
Caroline is the victor in Christ, not the victim.
Praise GOD!!
Monday, June 4th:
Hospital day 90; Post Surgery #1 day 89
Post Surgery #2 day 12
Theme for the day: Praise GOD! Pray for the doctor's wisdom and skill in finding the cure for Caroline. Pray for the blood fungus to come back negative and the fungus be gone from Caroline's body for good! Pray for the many insertion places to heal. Pray for her Kidney's to recover and the BUN and Creatinine levels to return to normal and for her to continue making URINE. Pray for her right eye to clear and return to normal. Pray for nutrition to her body and NO further infections, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions and continued prayer for her heart rhythm to return to normal.
Not much has changed in the past twenty four hours with Caroline. She is still having ups and downs with her vital signs and ventilator settings. Now the arterial line in her left wrist has been removed, the ability to monitor blood pressure, pull blood gases and labs from the Venus line is limited. We have Arteries that carry blood from the heart and Veins that bring blood back to the heart. When using an artery for your blood pressure and blood gases, you are getting a very accurate reading and sample since you’re getting volume directly from the heart. Today, the doctors and nurses have been pulling blood gases from the veins which gives them variations and inaccuracies in the readings. They have been doing heel sticks to get better readings but even those are limited not to mention painful for Caroline.
This evening, Doctors Baird and Watts attempted for almost 3 hours to insert another Arterial line in to Caroline. The remaining arterial locations are left and right groin, right wrist and neck. Since using the artery in Caroline’s left wrist, it is no longer available for an arterial line. They cannot use the artery in her neck because it will be used to replace the BT Shunt that delivers blood from her heart to her lungs. This Artery will serve as a replacement Pulmonary Artery in a future surgery. As a result they are limited to the right wrist and groins. Because of Caroline’s swelling, it was not possible to get a line into any of these places. They tried over and over to get into the artery but were unsuccessful. Unfortunately, Caroline has several stick point openings that have to be treated and cleaned. The management of her blood pressure and blood gases will be more difficult using a Venus line.
The doctors are of differing opinions as to what the next steps are for Caroline. Some agree to take out the Pacemaker others do not. We are still awaiting cultures to return from the removed art line from her left wrist and to see what the Infectious Disease teams findings were for the sensitivity test of the blood fungus. Dr. Baird did order a change in the antibiotics for the fungus. He stopped the Caspofungin and has re-administered Diflucan (Fluconazole). Our hope is this combination of antibiotics (Amphotericin-B and Diflucan (Fluconazole)) will be the correct combination that defeats the blood fungus.
Dr. Miller from Eyes, Ears, Nose and Throat, came in to evaluate Caroline’s right eye as it has become hazy and very red again. Due to the lengthy effort to get an art line in to Caroline, she was unable to examine her today. She will return early tomorrow morning and evaluate her right eye.
As you can imagine after 90 days, we are tired, frustrated and discouraged about where we are with Caroline’s recovery. Her heart (left and right) is looking as good as it has and her cardiac output is well within target limits. We just need a break to get over the infection.
No unbelief or distrust mad him waver or doubtingly question concerning the promise of God, but he grew strong and was empowered by faith as he gave praise and glory to God. Fully satisfied and assured that God was able and mighty to keep His word and to do what He had promised. Romans 4:20,21.
When your back is against the wall and every circumstance is against your succeeding in life or health, instead of griping and complaining, begin to praise God and give Him Glory. Change your focus! That is what we have to do!
Sunday, June 3rd:
Hospital day 89; Post Surgery #1 day 88
Post Surgery #2 day 11
Theme for the day: Praise GOD! Pray for the blood fungus to come back negative after the removal of the arterial line and the fungus be gone from Caroline's body for good! Pray for her Kidney's to recover and the BUN and Creatinine levels to return to normal and for her to continue making URINE. Pray for nutrition to her body and NO further infections, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions and continued prayer for her heart rhythm to return to normal.
Caroline had a rocky road overnight. Around 11:00 PM she started getting agitated and began to fight the ventilator. By fighting the ventilator, she causes her O2 saturation levels to drop which then causes her blood to become acidotic then the organ out put starts diminishing. To counter this, the doctors have to sedate Caroline so it will relax her and let the ventilator and lungs get back into sync and increase her O2 levels. After administering the sedative she began to recover and her vital signs stabilized. Dr. Watts believed this was caused by her being agitated from the ventilator tube and possible some effects of a fever.
We met with the Infectious Disease doctor today and learned they are going to retest all drugs for sensitivity against the Candida parapsilosis blood fungus. The test will involve applying all the known drugs that fight this blood fungus to a positive fungus culture and test for sensitivities. Based on the number of days Caroline has had the fungus, the drugs that react to the drug may have changed and therefore, another drug may be more effective against the fungus. The next few days will determine if another drug will be effective.
As a process of elimination for sources of the blood fungus, Dr. Watts had Nurse Sharron remove the arterial line removed today. They will now have to monitor her blood pressure via a cuff which may not give accurate readings. In addition, to draw blood for cultures and blood gases they will have to stick Caroline’s heels for blood. We hope the removal of the arterial line will also remove the source of infection. The doctors are not confident this is the source but wanted to exhaust all options before they move towards pacemaker and/or BT Shunt removal.
In every thing GIVE THANKS: for this is the will of God in Christ Jesus concerning you. Thessalonians 5:18
God knows praising Him in the midst of fiery trials will cause our eyes to focus on Him rather than on the problems Caroline has. And He knows that praising Him, instead of the trial, unleashes God’s power to work in Caroline’s behalf. In the midst of any infection or defect that faces Caroline, go to the Heavenly Father and praise Him for His delivery power, and he will bring complete healing over Caroline. Praise Him that He’s bigger than any problem we or Caroline may face.
I will bless the Lord at all times; His Praise shall continually be in my mouth. Psalm 34:1
Saturday, June 2nd:
Hospital day 88; Post Surgery #1 day 87
Post Surgery #2 day 10
Theme for the day: Praise GOD! Pray for the doctors to identify the source of the blood fungus and for it to be gone from Caroline's body. Pray for her Kidney's to recover and the BUN and Creatinine levels to return to normal and for her to continue making URINE. Pray for nutrition to her body and NO futher infections, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions and continued prayer for her heart rhythm to return to normal.
Another day of ups and downs and positive blood cultures for Caroline. Eighty eight days and Caroline is still fighting to survive from a fungus that just won’t die. We are now ten days past the surgery where we thought we had removed the source of the blood fungus. But of these ten days, we have had eight positive blood cultures for Candida parapsilosis. We met with Dr. Watts again today to see where he was with changing the antibiotics being used to fight the fungus and if he was going to remove the arterial line in her left wrist. Dr. Watts spoke to Dr. Moore, Infectious Disease, and Dr. Moore is of the opinion we should stay the course with Amphotericin B and Caspofungin to fight the infection. Caroline has been on Amphotericin for 22 days and Caspofungin for 15 days with no effect on the fungus. Should we change antibiotics? That is the question we went to Dr. Watts with for explanation. What we learned was Amphotericin is the one of two of the strongest drugs that is known to beat Candida parapsilosis, the other being Diflucan (Fluconazole). Unfortunately, Difulcan was being administered when she contracted the blood fungus and was on this drug prior to Amphotericin.
With the drugs making no progress, it is believed there maybe another source for the infection to rejuvenate from. Since the removal of the Atrial Stent ten days ago, she is left with the arterial line, pacemaker, pacemaker leads and BT shunt that could be the source. Dr. Watts will plans to take out the arterial line in the morning and send it off for culture. If we continue to receive positive results for blood fungus, the next step would be to remove the pacemaker and pacemaker leads and put in an external temporary pacemaker. If there is still fungus, then next would be the BT shunt. The BT shunt is required to supply blood flow from the heart to the lungs, without this, Caroline could not survive. So just removing it is not possible, there would have to be something put in place to serve as the route for blood from the heart to the lungs. For obvious reasons, this surgery is very last resort.
To help rule out any potential sources of infected fluid pockets, Dr. Watts performed a CT scan on Caroline today. The CT Scan did not reveal and suspect areas. In addition, Dr. Watts had a sonogram of the pacemaker done to look for space or fluid surrounding the pacemaker that could be a source for the infection. Again, nothing suspect, only a 2mm space around the pacemaker.
With all this activity today, Caroline’s stats have been very low. Her blood pressure has been in the 40’s and the O2 saturation levels in the 50’s. To help her recover, she had to be sedated and paralyzed to relax her lungs and allow her blood pressure to go up and her heart produce more cardiac output to increase the O2 saturation levels in the blood so they would not become acidotic. The last I spoke to Dr. Watts, 11:00 PM tonight, he indicated she was on the right track and was starting to level off with her vital signs.
How do the doctors heal Caroline, how do we pray for God to heal Caroline?
The Bible tells us about a cure for sickness and disease for aches and pains. This cure is not man made and it doesn’t cost anything. Someone else has already paid the price for this cure. This cure was the most expensive cure of all, it cost Jesus Christ, the Son of God, His life. Jesus’ death and resurrection provided a cure for me, you and Caroline that doesn’t cost us anything. If we administer this cure faithfully, it will work and bring complete healing to Caroline. The greatest cure known, can be found in praising God.
Praise God for His gift of life and forgiveness for all of our sins. Praise God for friends and family. Praise God for loving us unconditionally. Praise God for He will bring healing to Caroline.
Friday, June 1st:
Hospital day 87; Post Surgery #1 day 86
Post Surgery #2 day 9
Theme for the day: Pray for the blood fungus to be gone from Caroline's body. Pray for her Kidney's to recover and the BUN and Creatinine levels to return to normal and for her to continue making URINE. Pray for nutrition to her body and NO futher infections, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions and continued prayer for her heart rhythm to return to normal.
For the past two days Caroline has been fairly steady with her vitals signs and respiratory function. There have been a few ups and downs but nothing out of the normal. She is around 200cc’s positive (more in than out) which is where the Nephrologist wants her to be to keep her from having intravascular dehydration. So she doesn’t put too much out and become negative (more out than in) they are putting ½ of the amount drained back in the form of Albumin and Blood Palettes. She has a chest drain that has been serving as dialysis and is keeping her output steady.
Since Caroline’s BUN level has been one of the highest they have seen (188), they stopped her Lasix drip which in turn causes the kidneys to cease urine output. However, since stopping the Lasix drip, the BUN has dropped to 166, Creatinine level is still 1.7. Still the thought is if they can get her more volume which in turn gives more blood pressure, they feel the kidneys will start producing urine and the BUN and Creatinine levels will return to normal levels.
Caroline’s blood culture from the 29th came back positive for Candida parapsilosis. We are still waiting the results of the cultures from the 30th, 31st and today. The one positive with these cultures is that they do not come back positive right away. Meaning they are taking about 48 hours to respond to antibiotics which could be correlated to a possible weakening infection. Although there is no scientific or medical study that would indicate this, my mere logic believes this is an optimistic theory. Over the next day or so, Dr. Watts plans to remove what internal lines that he can. Today he was able to remove the Atrial line that provided medications directly to the heart and if the May 30th culture comes back positive tomorrow, he will remove the Arterial line in her left wrist. His thoughts are to remove all possible lines without jeopardizing the ability to administer medication or retrieve blood specimens. He hope is that removing all the lines will remove any additional infected areas and then be able to rid Caroline of the fungus. If removing all the lines does not rid the fungus, the next steps would be to remove the pacemaker and the BT Shunt. This is a bridge we do not want to cross.
Caroline’s right eye looks to be back to normal, all of the hazing has cleared up and all that remains is just a little redness. With Caroilne’s ventilator at minimal settings, we asked Dr. Watts if we could begin breathing trials. He indicated there is still too much pressure around the pleural space to give her lungs a chance to fully expand without the aid of the ventilator.
We spoke with Dr. Watts tonight and wanted to get a feel of where we are going with Caroline. He indicated the three top priorities in order are: Blood Fungus, Kidneys and Nutrition. The biggest being the blood fungus and the possibility of another surgery to remove the pacemaker and the BT Shunt. The Kidneys are also of major concern since the BUN and Creatinine levels are so high and the urine output is totally dependent on Lasix. Finally, nutrition is the key to helping develop Caroline’s body and internal systems. She is still just an infant and has immature systems that need to be fed and grow.
In all things we are more than conquerors through Him who loved us (Romans 8:37).
No matter what life throws at Caroline, the ultimate adversary has been defeated by God. No longer is death the most powerful force in the universe. Life is!
Caroline has the will of God carrying her through this struggle to victory!
Praise God for all of His blessings.
Thursday, May 31st:
Hospital day 86; Post Surgery #1 day 85
Post Surgery #2 day 8
Theme for the day: Pray for Caroline's Kidney's to recover and the BUN and Creatinine levels to return to normal and for her to continue making URINE. Pray for her blood cultures to come back negative and blood fungus be removed. Pray for her stomach irritation to heal. Pray for NO MORE INFECTION, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions and continued prayer for her heart rhythm to return to normal.
Today was a pretty good day for Caroline. Her BUN level is still very high at 184, and her Creatinine level is still 1.7. These levels are believed to be high due to intravascular dehydration. To counter the dehydration, they want to get Caroline’s input/output to +200cc’s (more in than out). They will do this by giving her Albumin (blood plasma protein) which is naturally produced by the liver. Albumin will help pull the fluid in Caroline’s peritoneal space back into her vessels. By pulling this back into her vessels it will help increase her blood pressure which will benefit her kidneys. The kidneys are very blood pressure dependent to function properly. The kidneys consume approximately 20% of the cardiac output. Any degradation of in pressure directly impacts the kidneys and they shut down. Caroline’s urine output has slowed throughout the day and the blood pressure to the kidneys is thought to be the reason.
Caroline’s blood cultures from the 29th and 30th are still pending negative for the blood fungus. With all cultures, they take about 5 days to fully develop and respond to antibiotics if there are active colonies present.
We pray for God to rid her body of the fungus infection and shield her from any further infections.
Caroline is still weaning down on her medications. Dopamine is at 4, Lasix at 2 and her Ventilator settings are still 21% O2 and 30BPM. They are changing her tube feeds from Vivonex to Portagen and continuing the TPN at 2cc’s per hour. She has been very alert and responsive throughout the day.
King David said “Why so downcast, on my soul (my mind and my emotions)? Put your hope (confident expectation) in God.” Hallelujah! We do put our hope and faith in God and His work with Caroline and in our lives. Without God in our life, guiding us and answering our prayers, we could not have made it this far in Caroline’s Journey. God has given Caroline the will to live and everyday she continues to fight to survive. The Doctors and Nurses are truly amazed at the will she possesses inside.
That will is the presence of God in her heart!
Wednesday, May 30th:
Hospital day 85; Post Surgery #1 day 84
Post Surgery #2 day 7
Theme for the day: Pray for Caroline to continue making URINE and her KIDNEYS to recover and strengthen, BUN and Creatinine levels to return to normal, blood cultures to come back negative and blood fungus be removed. Pray for NO MORE INFECTION, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions and continued prayer for her heart rhythm to return to normal.
After 2 days of good reports, Caroline had a bumpy day with her stats and just being agitated at various times. The Nephrologist, Dr. Masengail, is trying to manage Caroline’s vascular hydration by not letting too much fluid be drained at once. In the past, the Doctors have tried to drain as much fluid as possible but would encounter intravascular dryness and have to put back volume and blood to counter the effect. Dr. Masengail wants Caroline to remain even (equal in equal out) to keep her from developing intravascular dehydration. The counter effect of keeping her hydrated is she will retain the edema (swelling) and look puffy and be stiff. To keep her even, they are putting back the same amount of volume that she is draining.
Also, today’s blood culture report showed the cultures from the 26th, 27th, and 28th all reporting positive for signs of the blood infection Candida parapsilosis. This is heart breaking since we believed the infection had been eradicated by the antibiotics. The question now is, is whether this is lingering cultures or something new. The doctors are still maintaining the amphotericin and antifungal medications.
With Caroline being so agitated throughout the day, she was vomiting bloody fluid from her stomach. The nurses replaced her Oral Gastric Tube (OG Tube) and put in a new tube. When they removed the old tube there was a clot at the tip that may have been the culprit to the bloody fluid. Since replacing this tube with a new one, the stomach fluid has cleared. In addition, since around 6:30 this evening she has calmed down and has been very tolerate of the Chest PT’s and rotation from side to side.
Today’s X-Ray indicated her right upper lobe is inflated and clear. As a result her ventilator settings have been stable at 21% O2 (room air) and the sustained breathing rate is steady at 30 BPM’s. Her Dopamine level is 5mcg’s and her Lasix drip is at .5ml. She is on 2cc’s of TPN and Vivonex tub feeds. Her urine output is steady at 6cc’s to 11cc’s per hour. However, her BUN is at its highest level, 185, and Creatinine is at 1.7. The highest known BUN level at CMC was over 200. Heart failure/defect patients often have high BUN due to low blood flow to their kidneys. High BUN can also be caused by heart attack, intestinal bleeding, feeding by stomach tube, dehydration, high stress, or kidney failure. With Caroline making steady urine and the Creatinine level holding somewhat steady, they do not believe she is having kidney failure. The doctors believe that intravascular dehydration is the root cause of the BUN levels.
These ups and downs are so frustrating and emotionally deflating for everyone. Most of all, Caroline is continuously having to fight and struggle to survive. These ups and downs are constant reminders of how delicate and fragile her body is. Each day we pray and ask God to give her the healing and strength to get over the “hump” and on the road to recovery with total healing. As I’ve stated many times, God’s time is not our time and we have to maintain the faith and continue to praise God for Caroline and her total healing.
Thank you all for your continued prayer and support of Caroline’s journey. She is a special child of God who has a will to survive.
We can’t wait to bring our daughter home!
God bless you all!
Tuesday, May 29th:
Hospital day 84; Post Surgery #1 day 83
Post Surgery #2 day 6
Theme for the day: Pray for Caroline to continue making URINE and her KIDNEYS to recover and strengthen, BUN and Creatinine levels to return to normal. Pray for NO MORE INFECTION, continued vital stabilization, strengthening of her right heart and lungs. Pray for healing her scars and incisions and continued prayer for her heart rhythm to return to normal.
Caroline had a great day! Two days in a row of good news…..thank you God! It’s true, Caroline has had two days of stable vital signs and no bumps or setbacks. After 84 days of ups and downs, this news is wonderful to hear and very encouraging for Caroline’s journey to recovery.
For the past two days, her blood pressure and O2 saturations have been in target ranges without any issues. They have weaned her Dopamine (heart BP medicine) from 10mcg’s to 6mcg’s. She is at room air (21%) on the Ventilator and her breathes per minute are set at 30bpm. She is 100cc’s negative (more out than in) and her swelling is beginning to subside. Caroline’s skin color is very good, she has a pinkish hue to her and does not have any dusky look (purple). She is on Vivonex tube feeds with 8cc’s per hour of TPN. Her urine output is ranging from 6cc’s to 12cc’s per hour – Thank you God for this answered prayer!!
All of her interventions (tubes inserted in her body) have been replaced and are new. She even got a new bed today. Her blood cultures are still returning pending meaning no infection cultures have grown. Her right eye is looking better, she has a special eye drop that has been prescribed and is clearing up the redness and haziness. She has not have any temperature today. Also, the nurses have been turning her from side to side to move and break up any fluid that has collected in a region. Over the next few days, with continued swelling reduction, her right lobe should clear up and fully inflate.
It is joyous day to be able to report such good news about Caroline. God has answered the hundreds of prayers that are continuously prayed on a daily basis. We give God the Glory for how He has used Caroline’s testimony to the hearts of everyone who follows Caroline’s journey. She is a miracle of God who is doing great work through testimony and prayer.
A special message to my girls from "Beantown".
I love and miss you......
Happy Memorial Day
Monday, May 28th:
Hospital day 83; Post Surgery #1 day 82
Post Surgery #2 day 5
Theme for the day: Pray for Caroline to continue making URINE and her KIDNEYS to recover and strengthen, BUN and Creatinine levels to return to normal. Pray for NO MORE INFECTION, fever reduction and White Blood Cell Count to normal, continued recovery from surgery, continued vital stabilization, strengthening of her right heart and lungs. Healing of the blood fungus. Pray for healing her scars and incisions and continued prayer for her heart rhythm to return to normal.
Praise God for yet another prayer request answered! Caroline made 9cc’s of urine last night and is trending about 4cc’s per hour through the day. This is great news because now they will not have to put in another Peritoneal Catheter (and another hole) in her stomach. Since she has started making urine, she is slowly coming back to negative fluid (more out than in).
Once bit of concern is that Caroline had a fever of about 101F and her white blood cell count is 15 (Normal 5 – 10). The Infectious Disease Doctor believes this is Caroline’s own immune system fighting the infection. We pray he is right because we do not want her catching another infection. Also, since Friday, her blood cultures are all negative. As a result, they are weaning her off of the fluconazole but will keep her at the same dosage of amphotericin to rid any further fungal bacteria.
Caroline looked very good today. She looks a little puffy and her right eye is still very bloodshot and hazy. She is on a prescription eye drop to help clear the eye and the nurses are putting cool compresses over it to help with swelling. Her blood pressure and O2 saturation levels are steady and her ventilator settings have been reduced.
If there were ever doubt whether or not God listened and answered prayers, these last 83 days are living proof that God does answer your prayers. Time and time again we have come to God in the most critical moments and ask for God to lay His hands on Caroline and heal her. Last night was yet another testimony of God’s warriors coming together and agreement for Caroline. Within hours, she started to produce urine that of which had been obsolete for the past 3 days.
Our God is a mighty God but yet a compassionate God who listens to all our prayers.
Thank you God, we praise you for the answering of our prayers!
On thisMemorial Day, please say a prayer for all of the families and friends of US Servicemen who gave their life to fight for the Freedom or our Country. A Freedom that is taken for granted and hated by others in the world. These men are heroes and icons in making this country free and preserving the right for us to share the word of God.
Sunday, May 27th:
Hospital day 82; Post Surgery #1 day 81
Post Surgery #2 day 4
Theme for the day: Pray for Caroline to begin making URINE and her KIDNEYS to recover and strengthen. Pray for continued recovery from surgery, continued vital stabilization, strengthening of her right heart and lungs. Healing of the blood fungus and shielding from any new infections. BUN and Creatinine levels to return to normal. Pray for healing her her scars and incisions and continued prayer for her heart rhythm to return to normal.
Caroline had another rocky day. Since closing her chest, Caroline has had issues with maintain adequate blood pressures, O2 saturation levels and inflation of the upper lobe in her right lung. When her chest was open, her heart and lungs were able to expand and contract freely without pressure from the chest wall and any edema (swelling). Since closing, the heart and lungs have struggled with expansion due to swelling she is starting to have.
Edema (swelling) is controlled by diuresing more fluid than you take in. Since surgery, Caroline has had no urine output and her peritoneal catheter has not put out any fluid from the dialysis. Only her chest tube is putting out fluid, most of which is from the peritoneal area. As a result of the unstable vitals, they have to continuously give her volume, platelets, medicines and nutrients. Overtime, she has begun to swell which is causing more instability with her vitals.
Dr. Baird is holding out as long as he can to insert a new peritoneal catheter, in hopes Caroline will begin to make urine on her own. To aid the kidneys to produce urine, she is getting boluses of Lasix. They are doing small doses due to the fact her kidneys have been under duress for so long they do not want to damage them. Her BUN and Creatinine levels are very high so they must be careful not to permanently damage the kidneys.
We are so discouraged and frustrated at the continued ups and downs with Caroline’s condition. It breaks our hearts to see her swollen, sedated and paralyzed over and over. Her chest and stomach are covered with scars and holes from continued intervention and surgery. How much more can she take….it’s so unfair that she continues to struggle.
No matter how discouraged or frustrated we are, we still have complete faith that God will carry her through this. Praise God for all He has done and all that He will do for our daughter Caroline! God's time is not our time, so we must have faith and believe He will heal Caroline!
"Caroline"
Sweet baby Caroline just three months old,
The most precious, beautiful child I'm told.
More radiant and lovelier than a precious stone,
She's loved by so many though some are unknown.
Our hearts have been touched and will never be the same,
Forever and ever we'll remember her name.
When God sent Caroline from heaven above,
He knew that she would be surrounded by love.
Through Caroline God has drawn others to Him,
There's a light shining brighter that once was dim.
Caroline's purpose on this earth one day will be known
But for sure through "Sweet Caroline" love has been shown.
Written by Elaine Abbott 5/27/07
Saturday, May 26th:
Hospital day 81; Post Surgery #1 day 80
Post Surgery #2 day 3
Theme for the day: Pray for Caroline's continued recovery from surgery, continued vital stabilization, strengthening of her right heart, lungs and kidneys. Also healing of the blood fungus and shielding from any new infections. Increased urine output, BUN and Creatinine levels to return to normal, Paritoneal Catheter to start draining and reduction in swelling.
Great news! The doctors closed Caroline’s chest! Praise God for the successful closure!
When we arrived at CVRU around 9:00 this morning, Dr. Baird and the O.R. team were closing Caroline’s sternum and suturing her chest. She has made such progress they felt it was time to close and avoid any unwarranted chance of infection. During the procedure, she remained stable and tolerated the close very well.
Afterwards, Caroline kept Nurse Scott very busy. For the rest of the morning and early afternoon, she had poor blood gas reports and her vitals were up and down. They had to make ventilator adjustments to keep her O2 saturation levels up and administered a sedative to help keep her relaxed and her vitals stable.
One of the concerns they are starting to have is the lack of urine output. Even with Lasix boluses she is putting out little to no urine. In addition, the Paritoneal catheter is not allowing any drainage. They administered another dose of TPA into the catheter to try and break up any clot that may have formed at the insertion of the catheter. As of 8:00 tonight, there has been no change in her drainage from the catheter.
If she doesn’t begin to produce urine nor is able to drain from the catheter, she will begin to swell again. With her chest just closed, they want to avoid any major swelling. Dr. Baird is working with Nephrology to determine next steps. There is a possibility they may remove and reinsert a new Paritoneal Catheter. In addition Caroline’s kidney BUN (111) and Creatinine (1.5) levels are increasing.
Since Thursday, Caroline’s blood cultures have been coming back negative. We need 5 consecutive days of negative cultures to begin to believe the blood fungus is gone. They will continue to administer fluconazole as longterm treatment against the infection.
Happy 3 month Birthday Caroline!
Riley and I are drinking our favorite thing - Milk!
We'll save some for you!
Get well soon, we love you!
Kathryn and Riley
Today is Caroline’s 3 month Birthday and her 81st day in the hospital.
She is getting longer (taller), her hair is coming in full and brown and her eyes are hazel. She is beautiful inside and out!
Praise God for giving us Caroline to care for and love.
We can't wait to bring her home.
Happy 3 month Birthday, we love you!
Mommy and Daddy.
Friday, May 25th:
Hospital day 80; Post Surgery #1 day 79
Post Surgery #2 day 2
Theme for the day: Pray for Caroline's continued recovery from surgery, successful closure of her chest, continued vital stabilization, strengthening of her right heart, lungs and kidneys. Also healing of the blood fungus and shielding from any new infections. Increased urine output, Paritoneal Catheter to stop leaking and reduction in swelling.
Caroline is recovering very well from her open heart surgery on Wednesday. She is still sedated and paralyzed due to the fact her chest is still open. The doctors are beginning to wean her down on the medications slowly. They are being careful not to make any big change since she is doing so well.
She is having an issue with the Paritoneal Catheter where it will not drain once they are ready to open the drain tubes after a dialysis cycle. They put a small does of TPA (Tissue Plasminogen Activator) better known as “clot buster”, to try an break up any clot that may have formed at the tip of the Peritoneal line. In addition, it is believed there may be a leak in the peritoneal space to the chest cavity because when they pump the dialysis mixture in her chest tubes begin to drain more.
The doctors tested Caroline’s swelling today by pushing together her chest wall to see how far they could close and how her blood pressure and vitals reacted. The edema looks to be down enough to be able to close the sternum and suture her chest. Dr. Baird indicated this procedure could be done bed side instead of transporting her back to the O.R. This will help reduce the impact of transport as well as reduce the risk of any setback due to the low temperatures in the O.R. They do not want Carolne’s core temperature below 98.6F and by being in the cooler O.R. temperature, she is at risk. Based on how well Caroline’s vitals are tonight, there is a possibility Dr. Baird will do the closure tonight or first thing in the morning.
From time to time her blood pressure dips in to the lower 50’s and they have to give her volume and albumin to get the pressure back up. This appears to be a result of the continue draining of the chest tubes and dialysis. In addition, she received a bolus of Lasix today as a result, she is producing about 4cc’s – 7cc’s of urine per hour.
We give all the praise to God for Caroline’s remarkable status after the surgery. God is answering our many prayers for successful surgery and complete healing. She is not there yet but each day is one step closer to that complete healing. The next blessing we ask from God is to protect her from any further infection as she progresses with her recovery.
Have faith in God. "Truly I say to you, whoever says to this mountain, 'Be taken up and cast into the sea,' and does not doubt in his heart, but believes that what he says is going to happen, it shall be granted him. "Therefore I say to you, all things for which you pray and ask, believe that you have received them, and they shall be granted you." (Mark 11:23-24)
We continue to PRAISE HIM for the MIRACLE HE HAS GIVEN Caroline that is bringing TOTAL HEALTH AND WHOLENESS TO HER BODY. HE is the one that said to ASK HIM for a MIRACLE for Caroline and HE IS THE ONE WHO IS BRINGING IT TO PASS!! H-A-L-L-E-L-U-J-A-H!!!! TO HIM BE ALL THE GLORY!!!
Thursday, May 24th
Hospital day 79; Post Surgery #1 day 78
Post Surgery #2 day 1
Theme for the day: Praise God for his blessings upon Sweet Baby Caroline! Pray for Caroline's continued recovery from surgery, strengthening of her right heart, lungs and kidneys. Also healing of the blood fungus and shielding from any new infections. Increased urine output, reduction in swelling and vital stability.
Caroline is doing very well after her 2nd open heart surgery. The doctors are pleased with her current status and are very optimistic she will have a full recovery from the Septectomy and removal of the fungal vegetation inside her right atrium.
Caroline’s chest is still open so blood and fluid can continue to drain from around her heart. Although minimal, she does have some swelling that they would like to see subside before closing her sternum and suturing her chest. Her heart rate is very consistent averaging around 140bpm – 160bpm. The pacemaker is pacing her heart as programmed had no further issues since surgery. Her blood gases are reporting target readings her O2 saturation is stable. The BUN level has dropped from its peak of 161 on Saturday, down to 41. The Creatinine level is still 1.4 but expected to begin dropping over the next few days.
Caroline currently has 14 medicinal pumps hooked to her body that deliver antibiotics, other medications and blood. Her pleural space on the left and right are draining via the “pig tails” (pleural catheters) and she is still doing cycles on the peritoneal dialysis. To continue to fight the infection, the doctors are administering two thrombolytic drugs, Amphotericin B and Fluconizal (antifungal agent). Her urine output is minimal but expected to increas over the next few days as she continues to recover from the surgery.
Today’s Echo shows there are signs of the right heart function improving. Caroline’s left heart is doing all the work and is able to sustain desired vital signs. The 77 days, since first surgery, allowing blood flow to the left heart to grow the mitral valve, has proven to be vital in her ability to self sustain her vitals. Without the left heart performing as it is, she would have no choice but to be on ECMO (Life Support).
Physically, Caroline looks as good as she has since Easter. Her skin color is pink, her swelling is minimal and her like that of a 3 month old baby rather than that of a 6 month old.. She has had very few incidents of vital or pressure drops since the surgery and her ventilator is minimal settings. Our prayer is that she will be quickly get over this “hump time, a rapid weaning from the ventilator, and begin the full recovery that God has for her. Throughout the day, the doctors have been able to lower her dosages of Epinephrine and Primacor.
Over the next few days, we pray for continued recovery and strengthening for Caroline. God has certainly kept his hand of protection over her day and night. The fact that she has survived so much is truly a miracle from Him. We give him praise and gratitude daily for Caroline and her strong will and fight to survive. We know that without Him she would not be where she is today!
Thanks to the awesome number who have vigilantly monitored this site for the past few days for status updates and for your continued prayers and support. It is truly amazing how many have been touched by Caroline and love her as if she were their own. We feel truly blessed to have such dedicated and loving friends who share and encourage us through this difficult time.
Sometimes God heals you
through the use of medicine,
or through surgery,
or through special treatment.
Sometimes God heals your directly
in answer to special prayer.
However it may happen
that you get well,
It is God
who is the Great Physician.
Glory to God for carrying Caroline through this surgery and placing her on the way to complete recovery!
Doctor Baird and Doctor Watt aren’t too bad either!. We continue to thank them as well as all of the other doctors and nurses who care for Caroline 24 hours a day. You are all amazing to us and we know that God will bless each of you for you commitment in giving so much of yourselves to others each day.
Wednesday, May 23rd:
Hospital day 78; Post surgery day 77
11:00 PM Update
Caroline arrived back to the CVRU from the O.R. at 12:48 PM. Doctors Baird and Watts came to speak to us and explain how the procedure went and what they found. They indicated the surgery went as well as could be expected. Due to the amount of scar tissue in Caroline’s chest, it took a good effort to get into the heart cavity. Once in, the inserted two cannulae lines which are used to establish cardiopulmonary bypass so they could stop Caroline’s heart and put her on the heart / lung bypass. After the heart was stopped they went into the heart and removed the atrial septum (septectomy) which included removing the atrial stent and the atrial mass/clot/vegetation that contained the Candida parapsilosis infection.
The doctors indicated this mass was connected at the base of the stent and was a yellow color ball of blood, puss and infection. They stated we could have administered antibiotics for years and would have never gotten over the fungus infection. That being said, they also followed with the comment that the decision to perform surgery was the right thing to do.
After removing the atrial septum, they evaluated the pacemaker and BT shunt for infection. Initial indications were that there was some traces of the yeast but not significant enough that they could not overcome with antibiotics.
Next it was time to restart Caroline’s heart and pacemaker. There was some difficulty with regulating the pacemaker. As a result, they had to perform CPR and massage her heart until they were able to stabilize her PH in the blood and reduce the acidotic state. Once this was stabilized, the pacemaker was regulated and begin working as programmed.
However, there is an issue with the function of Caroline’s Right Heart. Based on the infection, atrial septum removal and trauma from a 2nd open heart surgery, the left heart has been weakened. Fortunately, the surgery performed on March 7th which allowed for the left heart to continue receiving blood flow to help grow the Mitral Valve and Atrium had shown some growth over the past 77 days. As a result, the Left Heart is able to support the right heart and handle the full volume of blood flow. The doctors believe the Right Heat will recuperate over the next 24 hours.
Caroline’s chest is still open to allow the heart to swell from the surgery and not impact its function. In addition, there is still great concern in her well being and the severity of infection that she has. The Doctors indicated she may get worse before she gets better.
Tonight, Caroline’s stats have been in target ranges and the Right Heart has already shown sings of recovery. We were advised to spend the night in the hospital in the event we were needed in CVRU. As of this post, Caroline is resting and doing well.
Once again, Caroline has defied the odds and proven to be a miracle from God. There has been an enormous amount of prayer for her over the past day and today’s results were a direct testimony of God’s work. We had faith that by turning Caroline over to Him, that He would carry her through this difficult time. And He did! We are grateful to all of you who have prayed and followed Caroline’s Journey. We could never thank you enough for asking God to care for her.
There is Victory in Jesus!
11:00 AM Update:
We received a call from the Operating Room and they informed us that Caroline is off the Heart / Lung By-Pass Machine. This is GREAT NEWS!! We are not sure what they accomplished during the procedure but will get a full update once the doctors have completed the opertaion.
We are so thankful that she did not have to be placed on the ECMO (Life Support) machine.
Praise God for yet another miracle!
AM Update:
We arrived at the CVRU at 6:00 this morning to spend some time with Caroline before they transported her to the O.R. Nurse Nancy and Sharron worked very hard to get Caroline’s vital signs and blood gas levels as good as they possibly could in preparation for surgery. In addition, they worked extra hard to remove as much fluid (swelling) as possible. By 6:00 this morning, she was over 300cc’s negative (more out than in).
During the night, they stopped Caroline’s TPN feeds and at 5:00 this morning they stopped the Heparin drip. Heparin is a blood thinner and they do not want her blood being thinned during surgery due to the need for clotting.
Pat Peeler drove down from Shelby and arrived around 6:30. We all stood over Caroline, and Pat prayed for her well being, healing and the steady guidance of the doctors and nurses in the O.R.
God's gift, Sweet Baby Caroline
Doctor Baird allowed us to walk with Caroline down to the receiving room in the O.R. Nancy, Sharron, Diane and Lisa maintained Caroline’s vital and respirations during the transport. We were able to spend a few extra minutes with Caroline before they took her into the O.R. and prayed over her and the doctors and nurses. At 6:45 they wheeled Caroline into the O.R.
We received a call at 7:50 that they has started the operation.
Please pray for Caroline, Dr. Baird and Dr. Watts and ask God to watch over and carry them successfully through this operation.
Tuesday, May 22nd:
Hospital day 77; Post surgery day 76
PM UPDATE:
Theme for the day: Pray that God guides the Surgeons hands and sharpens their skills, pray for God's healing touch to come over Caroline's body and rid her of the infection and bring her through the surgery. Thank God for His blessings and for giving us Caroline to take care of. Thank God for your family and friends.
Our God is a BIG God!
As I sit here tonight writing the message of Caroline’s journey, I am fearful of the surgery that will take place in the next 8 hours. This surgery is the only man made hope we have left to rid Caroline of the fungus that has taken over her body. The doctors have exhausted all medicinal avenues of treatment to reduce what is now known as right atrial mass/clot/vegetation. The next step is to perform open heart surgery to remove the vegetation and any infected artificial components inside of Caroline.
In Caroline’s current status, this surgery is extremely high risk, however the risk of her continuing without surgery and having an embolus (piece of clot) travel to her heart (heart stop), brain (stroke) or other areas is like a time bomb ticking but you don’t know how much time is left. Dr. Baird and Dr. Watts consulted with us this afternoon and prepared us for worst case scenario. They explained the steps they would take during the procedure and what to expect post-op.
The first step will be to remove the atrial mass/clot/vegetation from the right atrium. Once removed, they will then perform a septectomy, which is the removal of the atrial septum that separates the left and right atrium. With the septectomy, they will be removing the 6mm stent that has been used to provide pressure relief from the left atrium into the right atrium. Next, they will examine the pacemaker and area surrounding and swab for fungal infection. If this area reports positive results for infection, they will remove the pacemaker and connect her to an external pacing device. One of the biggest decisions is around what to do with the BT Shunt (Blalock Taussig Shunt). The BT Shunt is used to divert blood from aortic coarctation segment to the pulomonary artery allowing blood to flow from the heart to the lungs. The doctors have no way to determine if this shunt is infected. Based on Caroline’s status at this point in the surgery, they may decide to remove and replace the shunt. If she is not stable enough, they will not attempt replacement.
During the procedure Caroline will be on the Heart / Lung by-pass machine since her heart will be stopped. Once the procedure is complete, they will restart her heart and monitor her vitals for stabilization. If her heart and lungs cannot stabilize her vitals, she will have to be put on ECMO (extracorporeal membrane oxygenation) life support. An ECMO machine is similar to a heart-lung machine in that it supports the heart and lungs when they cannot support themselves.
I mentioned earlier that surgery is the only “man made” hope we have left to heal Caroline…we’ll man made isn’t the only hope out there. The hope and faith that God will completely heal Caroline is everlasting hope with no limits or expiration. We have turned Caroline completely over to God and she now lay in his arms to carry her through this time.
When you are all out of Faith and feel you can’t go on. Just ask God to take you in his arms so you can carry on.
Caroline is a fighter, she will not give up, we will not give up and God will not give up!
Be strong, be of good courage, be not afraid,
Be not dismayed for the Lord thy God is with you...
God told this to Joshua before a big battle and God took care of that battle for him.
AM Update:
We received a call from the Hospital today that they have scheduled Caroline for open heart surgery first thing tomorrow morning. The decision was made due to the fact that her blood cultures are still coming back positive for Candida parapsilosis and the blood clot is still measuring 7mm in diameter. We will be speaking with the Surgeon today to get further details on the procedure.
Please say a special prayer for Caroline well being and the doctors abilities as she goes through this surgery in the morning.
Ask God for A MIRACLE TO BRING TOTAL HEALTH AND WHOLENESS TO CAROLINE BODY.
Monday, May 21st:
Hospital day 76; Post surgery day 75
Theme for the day: Pray for Caroline's healing of the blood fungus, dissolving of the blood clot, not embolus, pressure and O2 stats to remain stable, kidneys to product urine and BUN and Creatinine levels to return to normal and not damage her kidneys, reduction of fluid and swelling, stabilization, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline had another stable day and from looks alone, she looked great. Her blood pressure and O2 stats remained solid most of the day. Only during diaper changes did she have episodes where her vitals dipped down into the lower levels. Since being off the Lasix for about five days, Caroline's BUN level has dropped from 161 to 91. Her Creatinine level is still very high at 1.4. They have removed her Foley Catheter since she is only producing 1cc per hour of urine. To gauge her urine output, they will weigh her diaper after changing. Dopamine is still at 12mcg's and she still has Vancomycin and Heparin in her Peritoneal fluid mixture.
The doctors performed another Echo on her heart to evaluate the size of the blood clot that is attached to the atrial stent. The blood clot is still at 7mm and has not gotten larger or smaller since its discovery on Thursday. While this is not good news, it’s certainly not bad news. The ultimate hope is the clot begins to dissolve on its own and does not break off (embolus) and travel to the heart, brain or body. The doctors are still administering a Heparin (blood thinner) to keep the clot from growing and to potentially reduce its size.
Some good news is the blood culture from Friday has not tested positive for the blood infection Candida parapsilosis. The recent trend has been that once a blood culture started to grow, within 1 day it responded to medication which identified it as a blood fungus. The culture from Friday is still pending for any responses to medication. Our hopes and prayers are this will return negative. If it does return negative for 5 consecutive days, then it would be considered that the infection is dying.
Since the blood culture has not come back positive and the blood clot has not increased in size, the doctors are not making any decisions or plans for surgery at this time. The thought is we continue to give Caroline a few more days to fight the infection before any evasive action is taken.
Also, the doctors are going to introduce Intravenous immunoglobulin (IVIG) to help boost Caroline’s immune system to fight the blood infection. This is a method that has been used in Heart Transplant patients in Denver and has positive results. There are some side effects, including swelling, that are associated with this drug.
Over the past few days, we all have been reaching out for God to bring on a miracle and heal Caroline’s entire body, freeing her from infection and sickness. Our prayers are being heard, we are in agreement and full faith that God will carry Caroline through this difficult time and bring her through. Our work is not done, Satan never sleeps and is continuously attacking our faith in God. Please continue to ask God for A MIRACLE TO BRING TOTAL HEALTH AND WHOLENESS TO CAROLINE'S BODY.
We are grateful for all who follow and pray for Caroline.
Your prayers are the greatest gift we could ever ask for.
Thank you…… We love you,
Michael and Tanner
Sunday, May 20th:
Hospital day 75; Post surgery day 74
Theme for the day: Pray to God and ask for A MIRACLE TO BRING TOTAL HEALTH AND WHOLENESS TO CAROLINE'S BODY
Caroline had a pretty good day. Her vital signs have remained very steady and there have been no changes in her medication or ventilator settings. The doctors want to try and keep changes to a minimum to allow her body to strengthen as much as possible in the event the blood cultures continue to be positive or if the blood clot does not reduce in size and she has to under go open heart surgery.
From the outside looking in, Caroline is looking better each day. The Peritoneal Dialysis is removing 25cc’s 40cc’s per hour and her overall input/output is negative around 550cc’s. She has been alert and on no sedation, just regular doses of antibiotics, blood pressure medicine and blood thinner (heparin).
The Nephrologist indicated there was a positive culture in the fluid drainage that is coming through the peritoneal catheter but identity is still unknown. To be proactive with treatment, he has administered an antibiotic called Vancomycin into the dialysis mixture to fight whatever “bug” may be growing in Caroline’s peritoneal space.
Tanner and I spent about 4 hours with Caroline and were very pleased at her coloring and her responsiveness to us. This afternoon, one of the nurses happened to have the song “Sweet Caroline” on cd and played it at her bedside.
First thing tomorrow morning, the doctors will conduct another sonogram to evaluate the blood clot on the stent in the atrial septum. If the blood clot has reduced in size, it will buy us some time before they would make the decision to operate on Caroline. If the blood clot has gained size or remained the same, there will be discussions on next steps. In addition, if the blood fungus does not begin to show signs of weakening the timeline for surgery may be shortened.
More now than ever, Caroline needs your prayers and a miracle from God to heal her body completely by taking away the blood infection and clot, strengthening her lungs to get off the ventilator and removing all the tubes and lines that are the breeding ground for infections. As today’s theme states…..
Pray to God and ask for A MIRACLE TO BRING TOTAL HEALTH AND WHOLENESS TO CAROLINE'S BODY.
Caroline welcomes her new friend, Colby, to the CVRU. Say a special prayer for Colby's healing and recovery.
Saturday, May 19th:
Hospital day 74; Post surgery day 73
Theme for the day: Turn Caroline over to God and ask Him to heal the Blood Infection and dissolve the Blood Clot in her heart.
Caroline has had an up and down day. Her blood pressure has been in the 80’s (target) then would just drop into the lower 40’s throughout the day. She is putting out about 30cc’s – 40cc’s per dialysis cycle and is about 128cc’s negative for the day (more out than in).
This morning the doctors did and Echo of her heart to evaluate the blood clot on her stent. The good news is the blood clot has not gotten any bigger but it hasn’t gotten any smaller either. It is measuring about 7mm’s in size and is attached to the stent that is placed in her atrial septum. We are still praying the heparin will keep the blood clot from growing any bigger and help to dissolve it. If the clot does not begin to dissolve or it starts to grow, the next step would be surgery.
Caroline’s blood cultures are still showing positive for the blood fungus. She is now 14 days into the fight with the blood infection Candida parapsilosis and the antibiotics are yet to show any signs of working to fight this bug. The theory the doctors have as to why this bug isn’t dying is it is continuing to rejuvenate itself by attaching to the artificial entities inside her (pacemaker, leads, stent, shunt). Because of this, if her blood cultures continue to come back positive, it will be necessary to perform open heart surgery to remove these items. Understand, this is a last resort surgery. The antibiotics, Amphotericin B and Caspofungin, must begin to kill this infection within the next few days or we are faced with surgery.
Also, yesterday, the nurses noticed an abnormal formation on Caroline’s Paritoneal catheter. This formation was sent off to the lab to check for infection. We learned this afternoon that the formation did show signs of some sort of infection. It has yet to be determined what type and how it will be treated. We should know more tomorrow.
In Caroline’s current condition, she is too weak and fragile to endure open heart surgery. However, if there is no other option to rid her body of the infection or dissolving of the blood clot, the doctors will be forced to take surgical action.
The next few days are some of the most critical in this journey. Decisions will be made that may put Caroline in the biggest fight for her life yet. If the blood clot does not dissolve and if the infection does not show signs of weakening, Caroline will have to endure an extremely high risk surgery to save her life. We all have prayed tirelessly over the past 74 days and we will continue to pray for God’s will to be done. We will not tire, we will not grow weary, we fight in the Lord’s Army and He will not be defeated!
From Pat and Larry Peeler:
There is power in the Name of Jesus; there is healing in the Name of Jesus; there is deliverance in the Name of Jesus; there is peace in the Name of Jesus. Take the precious Name of Jesus and BOLDLY use that God-given authority you have been given and SPEAK to the devil and every symptom, sickness and disease that is trying to kill and destroy your daughter and COMMAND every one of them to leave her body now. And then don’t stop there. Continue to say only what God’s Word says over her. When you pray, believe that you receive what you’ve asked for right then and thank and praise God for it. Whether you see it immediately or not, the Word says “believe you receive WHEN YOU PRAY” and you SHALL have it. God says by the stripes (wounds) of Jesus, she is healed; He says you can lay hands on the sick and they’ll recover; He says that “at the Name of Jesus” every knee has to bow – that includes every named or un-named sickness and disease; He says Caroline is blessed – that means He has empowered her to prosper spiritually, physically, mentally, emotionally, socially, and in every way and to increase in all His blessings; He says there is no weapon formed against her that shall prosper because her righteousness is of him; He says many are the afflictions of the righteous but the Lord delivers him of them all; He says He inhabits the praises of His people; He says “only believe” and get in agreement and stay in agreement with HIS Word and SPEAK IT in faith over every situation and circumstance you come up against and that HIS WORD would NOT return to Him void but IT WILL accomplish that for which It was sent. He will surely bring it to pass!
Friday, May 18th:
Hospital day 73; Post surgery day 72
Theme for the day: Praise God and Pray for Caroline's healing of the Blood Infection and dissolving of the Blood Clot in her heart.
Caroline had a very tough night. Around 1:45 AM Dr. Watts called and indicated they were struggling with keeping her blood pressure and respiratory levels steady. He swelling had gotten to a point where it was imperative they give her some relief so that the vital signs could be stabilized. To do this, they decided to put her back on the Paritoneal Dialysis to drain some of the fluid of. After setting up the dialysis, they were able to better control Caroline’s vital signs and improve her respiratory condition.
Throughout most of the day, she has been holding somewhat steady vitals and with the aid of the Paritoneal Dialysis, she is about 50cc’s negative (more out than in). To not create an intravascular dehydration situation, for every 1cc she puts out they will put 1/2cc back via volume or medication. She is still at 10mcg’s dopamine and 3cc’s of TPN for feeds. She is on a heparin drip to aid with the blood clot and they are continuing to administer both Amphotericin B and Caspofungin to fight the blood infection Candida parapsilosis.
All of her blood cultures are reporting back positive for the infection and the new concern is the blood clot on her atrial stent is also infected. Dr. Watts explained that if the cultures do not start to come back negative and/or the blood clot starts to dissolve, they will have to perform surgery to remove all the foreign materials within Caroline. These include the pacemaker, leads, stent and Aortic Shunt. In her condition any surgery, especially open heart, is a major risk. However, if she does not improve over the next few days, surgery is inevitable.
My message tonight is to continue to keep Caroline in your prayers. Be thankful for you family and friends, praise God for His blessings and hug your kids extra long tonight.
We don’t know what the future holds for our little girl but we know she is in God’s hands and His will will be done.
God bless you all!
Thursday, May 17th:
Hospital day 72; Post surgery day 71
Theme for the day: Pray for a miracle!
We received some troubling news today. Caroline had a heart echo done and it revealed there is a blood clot affixed to the stent in her artrial septum. This is extremely dangerous because if the blood clot were to dislodge itself or a piece break off (called embolus) it would then travel through the blood stream and could cause serious damaged depending upon where it might end up. If the blood clot or embolus breaks off and goes into the heart, she would need immediate open heart surgery. If the clot or embolus travels to her brain it could cause her to have a stroke. If it travels anywhere else in her body then other serious issues could arise.
The doctors have administered heparin (Blood thinner) to prevent the clot from growing and with hopes of it breaking up the clot. The issue with a clot breaking up is the risk of an embolus releasing into the blood stream. The hope is heparin will slowly dissolve the clot and no embolus would break off. The doctors will do another echo either Saturday or Sunday to review the size of the clot and see if it has changed. If clot has reduced in size, they will continue with heparin to dissolve the clot. If the clot remains the same or grows, then the next step would be open heart surgery to remove the clot. An open heart surgery would be extremely risky due to Caroline’s weakened and infected state. Her body is just not strong enough to handle the trauma that it would have to endure to perform this surgery.
There are stronger drugs that can be used to break up the clot, Tissue plasminogen activator; TPA, but the side effects are just as bad as the clot itself. TPA is used to break up or dissolve clots. The issue is, with Caroline’s current and recent incisions, port openings, catheters and healing surgical repairs, the TPA would reactivate the bleeding in these areas. Also, the TPA could cause Hemorrhaging or bleeding in the Blood Brain Barrier (membranic structure that acts primarily to protect the brain from chemicals in the blood).
In addition, the antibiotic Amphotericin B, which is fighting the blood infection Candida parapsilosis, appears to not be killing the fungus. Therefore, the Infectious Disease doctor has prescribed an additional antibiotic called Caspofungin. This drug is less powerful than the Amphotericin B but may attack the infection from another angle a weaken it. The good news is, over the past 12 days, her blood cultures would return a positive result for the infection within 1 day. The culture taken on the 15th has not shown any signs of the infection but we are only 2 days into growth on this culture.
Where do we go from here? Only God knows the answer.
We must believe and have complete faith that God will once again grant a miracle for Caroline. She has been fighting for her life since the day she was born. The Lord has carried her through the darkest times and He will carry her through this.
Our God is an awesome God and He can heal Sweet Baby Caroline!
We believe, we believe, we believe!
Please open your heart and mind and pray for Caroline. These next days are the most critical of her journey yet. Please pray for our family as we continue to endure the most difficult time of our lives. We thank you for your support and prayer.
God will bless you for your support of this family.
Wednesday, May 16th:
Hospital day 71; Post surgery day 70
Theme for the day: Pray for Caroline's healing of the blood fungus, blood pressure and O2 stats to remain stable, kidneys to product urine and BUN and Creatinine levels to return to normal and not damage her kidneys, reduction of fluid and swelling, stabilization, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline is now 11 days into her fight with the Blood Fungus known as Candida parapsilosis. Throughout the night and day, this Fungus has caused much difficulty in trying to maintain adequate blood pressure, O2 saturation levels and urine output. The doctors are trying to maintain fluid output to keep her swelling down but it is a fine balance to not over due the output and cause intravascular dehydration.
Caroline has been in a mild sedation to help keep her vitals signs from dipping too far due to her body being so weak from the infection. By mid day, her blood pressure was so low they had to increase her Dopamine to 12mcg’s and considered putting her back on Epinephrine. In addition, the ventilator settings had to be increased to maintain the PH levels in her blood. When these levels get to low, she becomes acidotic.
Once again, Caroline’s blood cultures are returning positive for traces of Candida Parpsilosis (Blood fungus). Until the doctors see 5 consecutive days of negative blood cultures, Caroline is considered as still being actively infected. The antibiotic she is on, Amphotericin B, is considered to be the strongest drug that can be used to fight this infection. Since she is still showing positive fungus cultures the doctors are considering using other drugs that the fungus responds to, to try and attack from it from other angles. They also have to be careful with continued use of Amphotericin B due to the extreme side effects (BUN/ Creatinine increase, edema, pleural effusion and kidney failure).
Many of us are praying and waiting on God for the answer to our prayers. When we don’t immediately see the answer, we keep asking and praying over and over the same prayer. Prayer asks, but praise receives. Praise receives the answer by faith and thanks God for the answer before the answer is actually visible to the natural man.
Praise God for all He has given us, Praise God for allowing Caroline to come into our lives, Praise God because He will heal and bring our daughter home to us!
I love you Caroline!
Tuesday, May 15th:
Hospital day 70; Post surgery day 69
Theme for the day: Pray for the kidneys to product urine and BUN and Creatinine levels to return to normal and not damage her kidneys, healing of the blood fungus, reduction of fluid and swelling, stabilization of blood pressure, comfort with breathing and feeding tubes, increased urine output, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline had another day of ups and downs with the fungus infection. Her pleural catheters are pulling very little fluid from her chest and she is requiring blood volume and albumin to stabilize her blood pressure and O2 saturation levels. As of this afternoon, she was 92cc’s positive (more in than out). Caroline’s head and chest are swelling more and more each day she is positive with the fluid.
We spoke to the doctors today and they indicated the Infectious Disease team is still reporting her cultures positive for the fungus. The good news is they are treating the fungus with an antibiotic that directly kills the fungus - amphotericin. The unfortunate thing is, there is no magic cure, it will take time for the antibiotic to kill all of the fungus infection. Until then, they will work to maintain Caroline’s vital signs and keep her comfortable.
The doctors are increasing her tube feedings to help her body get more nutrients become stronger and more able to fight this infection. She is on TPN and Vivonex to provide her with the maximum protein and caloric nutrients.
Caroline’s BUN and Creatinine levels are higher today than they have been. With these high levels, she is at risk for kidney damage. In order to try and lower these levels, the doctors have ceased her Lasix drip. By stopping the Lasix drip, she is now producing minimal amounts of urine. Along with the slowing pleural catheter draining and the minimal amount of urine, edema (selling) will most likely increase.
Please pray tonight and ask God to once again lay His hands on Caroline and rid her body of this fungus infection. Pray for her kidneys to remain strong and continue to produce urine so she will not swell up as she has in the past.
We are optimistic and have Faith that God will carry her through yet another obstacle in her journey to recovery.
God Bless all who follow Caroline's Journey
Congratulations to Josh and Tiffany on the birth of their son!!
Peter Jackson Chenery
born at 4:27am Sunday May 13th
weighing 8lbs. 2oz. and 20 & ½ inches
Monday, May 14th:
Hospital day 69; Post surgery day 68
Theme for the day: Pray for healing of the blood fungus, fever reduction, BUN and Creatinine levels to return to normal and not damage her kidneys, reduction of fluid and swelling, stabilization of blood pressure, comfort with breathing and feeding tubes, increased urine output, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
After having a very good Mother’s Day, Caroline had a tough day today. It looks as if the fungus infection is working against her body and causing a fever and swelling to come back.
When we saw Caroline today, it was obvious she has started to swell again. She is not draining out near as much as she had been through the pleural catheters and her urine output has slowed. Overall her fluid input vs. output is positive about 45cc's (more in than out).
Her Labs indicate her BUN is up to 158 but she has dropped to 1.0 on the Creatinine. Both of these measures are critical to how well her kidneys are functioning. Her blood pressure and O2 saturation levels are down as well as she has an air leak that is causing the ventilator O2 input / CO2 output to be low. This air leak is caused by her overall reduction in swelling where the tube in her throat is not as tight against her esophagus and air is able to come in out and out by going outside of the tube, which is called an air leak. To help with this air leak, Caroline is being lightly sedated so she will not move around and cause the leak to be worse. Also they believe by her being sedated, she may have more strength to fight the infection. The doctors have increased her Dopamine levels and have administered Albumin to counter the low blood pressure and the tube feedings have been increased to 8cc’s per hour.
It is obvious that we are not over the fungus infection and Caroline is still very sick. We continue to ask for your prayer and support for Caroline’s recovery from this infection and that her body be healed of the sickness and pain that has plagued her for the past 68 days.
Lord Jesus, who dost love me,
O spread Thy wings above me
And shield me from alarm!
Though Satan would devour me,
Let angel guards sing o'er me,
"This child of God shall meet no harm!"
From every peril surely
Our God will guard your head.
May He sweet slumbers send you,
And bid His hosts attend you,
And golden-armed, watch o'er your bed!
Sunday, May 13th:
Hospital day 68; Post surgery day 67
Theme for the day: Pray for healing of the blood fungus, BUN and Creatinine levels to return to normal and not damage her kidneys, reduction of fluid and swelling, stabilization of blood pressure, comfort with breathing and feeding tubes, increased urine output, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
God had a special Mother’s Day planned for Tanner….Nurse Margo and Nurse Doreen had made Caroline a little pink dress using a donated blanket from the Meghan and Heidi Foundation. She looked so beautiful in her “girly” pink dress and they had even put a pink and white bow in her hair.
When we arrived at the CVRU this morning and saw Caroline we were shocked at how good she looked. It was not only not the pink dress and dainty hair bow, but to see her looking like a little baby again was a special gift from God to us on Mother’s Day. Since Dr. Baird put in the two pleural catheters on Saturday, she has lost over 750cc’s of fluid. With the loss of another ¾ of a liter of fluid, most of the swelling has left her body. She still has some in her head and her arms and legs are tight but her overall body size is closer to normal. We were so excited and thankful to see our daughter looking so much better than she had in previous days.
Caroline's vital signs have remained stable and within target range. She does have some indication of intravascular dryness so they gave her 25cc’s of Albumin to counter the dryness. Due to her blood pressure holding in the upper 80’s they reduced the Dopamine from 10mcg’s to 8mcg’s with thoughts of continuing to lower it if the blood pressure holds steady. Her BUN (blood urea nitrogen) level is about 256 which is 10 times where it should be. Also, her Creatinine level is elevated to 1.1 (normal equals less than 1). The level of Creatinine in the blood provides information on how well your kidneys are workingwith a high level meaning your kidneys are not working properly. Because of this, they have decided to cut the amount of Lasix she is receiving from 2mcg to 1mcg per hour. Both the BUN and Creatinine levels will be monitored closely over the next few days to protect Caroline’s kidneys.
Another surprise today was when we learned Caroline had a breathing trial. Sometime before 10:00 this morning her ventilator setting had been moved from SIMV (synchronized intermittent mandatory ventilation) to Pressure Control Mode. Pressure Control Mode allows Caroline to be in control of the frequency and timing of the breaths she takes. While this setting was turned down, Caroline maintained her own breathing for 8 minutes. This was the first time in over 4 weeks she was able to have a breathing trial exercise.
Caroline’s turn around is a result of God’s hands at work. We have asked God to lay His hands on Sweet Baby Caroline and rid her body of the fungus infection. Although not completely healed of the infection, He has taken her in His arms and is carrying her through this obstacle in her journey to recovery. We praise God for His continued work for Caroline and support of our family.
Our faith and strength in His blessing of life grows stronger each day and each day that passes, Caroline is one step closer to coming home.
Wishing all the mom’s a Happy Mother’s Day!
Love Michael and Tanner
Saturday, May 12th:
Hospital day 67; Post surgery day 66
Theme for the day: Pray for healing of the blood fungus, reduction of fluid and swelling, stabilization of blood pressure, no kidney damage from antibiotics, comfort with breathing and feeding tubes, increased urine output, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
The doctors and nurses struggled overnight to keep Caroline’s vital signs up and her kidneys producing urine. By morning she was over 500cc’s positive (more in than out) and diuresing very little. She had swollen back to where she was last week and she was not able to open her eyes.
One of the reasons she was having such difficulty keeping her vital signs up was the large amount of fluid that had accumulated in her chest and around her lungs. With all of the fluid build up, her lungs could not expand to bring in O2 therefore her blood was becoming acidic and her blood pressure and FIO2 levels were falling.
On our way into the hospital this morning, we received a phone call from Nurse Margo asking how far from the hospital we were because the doctors needed to speak to us. Fortunately, we were already in the hall walking towards the CVRU. Dr. Baird and Dr. Greene were at Caroline’s bedside discussing inserting two Pleural Catheters in Caroline’s pleural space (The lungs are surrounded by two membranes, the pleurae. The outer pleura is attached to the chest wall and is known as the parietal pleura; the inner one is attached to the lung and other visceral tissues and is known as the visceral pleura. In between the two is a thin space known as the pleural cavity or pleural space.). These two catheters would be inserted in to the pleural space towards the bottom of each lung and create a drain for the fluid build up. By draining the fluid around the lungs, it would give Caroline’s lungs immediate relief and bring her vital signs back towards normal readings.
After giving Dr. Baird consent to put in the two catheters, we were able to watch the procedure from a distance. As predicted, once the catheters were put in, she immediately began to discharge fluid. Within just a few minutes, her vital readings began to climb and her lungs were starting to be able to expand. After about 10 minutes, she had discharged 73cc’s from the right lung and 64cc’s from the left lung. By 5:00 PM, Nurse Margo indicated Caroline was 300cc negative (more out than in) and she was now able to open her eyes. Here vital signs are in the target zones and her physical appearance is looking better.
Even with this small step forward, Caroline is very sick and needs your prayers asking God to rid her body of this fungus infection and make her well enough and strong enough to breath on her on without the ventilator.
This being the first Mother’s Day that this website has been open, we felt it fitting to include a message that honors not only our mothers, but rather acknowledges all mothers who daily spend endless hours and energy doing their very best to raise their children in the proper way.
The Bible is full of references to women who were godly and faithful mothers: Ruth, Esther, Mary Magdalene, and, of course, Mary, who gave birth to Jesus. Today, godly mothers are just as important as they were in biblical times. Billy Graham recalls the influence of his own mother: “On Sunday afternoons, my mother would read bible stories to us. I sometimes rebelled but in later years, I would call and thank her for those early years in which she trained me in the things of God.” Proverbs 1:8 says, “Listen, my child, do what your father teaches you. Don’t neglect your mother’s teaching. What you learn from them will crown you with grace and clothe you with honor.”
Tanner and I wish to applaud the many mothers who visit this site, offer words of encouragement and love, on this special day. To you, mothers of varying ages, may you be blessed abundantly this Mother’s Day with fruit from the seeds that you have planted in your children’s and grandchildren’s lives.
We wish you a wonderful day!
We also send a special "I love you" to our Mothers as they have been there to support us every step of the way during this journey.
We wish you a Happy Mother's Day.
To my wife, Tanner, on your 2nd Mother's Day, I am so proud of your strength and love for Kathryn and Caroline.
You truly are a great mom, wife and friend!
HAPPY MOTHER'S DAY!
Friday, May 11th:
Hospital day 66; Post surgery day 65
Theme for the day: Pray for healing of the blood fungus, stabilization of blood pressure, no kidney damage, comfort with breathing and feeding tubes, continued reduction of swelling, increased urine output, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline had a very eventful day. This morning we were called to give consent to the doctors to remove the Broviac Catheter and insert a Central Line Catheter. The reason for this is the Broviac Catheter has been in for 38 days and the risk of infection is great for this length of time. Replacing the Broviac Catheter is a Central Line Catheter which allows concentrated solutions to be infused with less risk of complications. It also permits monitoring of blood pressure and heart output and resistance.
After about 3 hours, the Dr. Lobdell was able to secure a Central Line Catheter in Caroline’s right groin. To get the Line in, he had to make an incision to locate the vein and then he sutured the skin around the line to prevent it from being pulled out. He also removed the Broviac Catheter and replaced the Arterial Line that was in her right foot (now in her left arm). The reason for replacing the Arterial Line is to start “fresh” with all the tubes and not allow any more infection to get into Caroline’s body.
Throughout this procedure she maintained stable Blood Pressure and O2 saturation levels. They did have to administer a mild sedative and paralytic to keep Caroline from moving around during this tedious procedure. As a result, she is positive about 87cc’s (more in than out). She also had another EEG to monitor brain activity and all tests came back negative.
The doctors decided to change the antibiotic that was being used to treat the infection to something stronger. She is now on an antibiotic called Amphotericin B (polyene antifungal drug, often used intravenously for systemic fungal infections.) One of the side effects of this drug could be Nephrotoxicity (kidney damage), which is a major issue and can be severe and/or irreversible. Therefore the doctors are closely monitoring her kidneys and blood gas levels for any effects or changes.
Throughout the day, she is continuing to produce urine at about 7cc’s – 10cc’s per hour. She is still on Dopamine (10mcg’s), Lasix, Methadone, Ampicillin, TPN and Vivonex. The ventilator settings are 22% FIO2 and 36 breathes per minute.
A special family friend shared this with us. I place it here in hopes that it might encourage those of you who are encountering trials of any kind.
The Fern and the Bamboo
One day I decided to quit.....I quit my job, my relationship, my spirituality. I wanted to quit my life. I went to the woods to have one last talk with God. "God," I said. "Can you give me one good reason not to quit?" His answer surprised me. "Look around," He said. "Do you see the fern and the bamboo?"" Yes, I replied. Then God said, "When I planted the fern and the bamboo seeds, I took very good care of them. I gave them light. I gave them water. The fern quickly grew from the earth. It's brilliant green covered the floor but nothing came from the bamboo seed. However, I did not quit on the bamboo." In the second year, the fern grew more and vibrant and plentiful. And again, nothing came from the bamboo. But I did not quit on the bamboo." He then said, "In the third year, there was still nothing from the bamboo seed but I would not quit. In the fourth year again, there was nothing from the bamboo seed but once more, I would not quit." He said, "Then in the fifth year, a tiny sprout emerged from the earth. And, some 6 months later, the bamboo rose to over 100 feet tall. It had spent the 5 years growing roots. Those roots made it strong and gave it what it needed to survive. I would not give any of my creations a challenge it could not handle." He said to me, "Did you know, my child, that all of this time you have been struggling, you have actually been growing roots. I would not quit on the bamboo, I will never quit on you so don't compare yourself to others." He said, "the bamboo had a different purpose than the fern, yet they both make the forest beautiful. Your time will come," God said to me. You will rise high!" How high should I rise, I asked. "How high did the bamboo rise?" He asked in return. “As high as it can?" I questioned. "YES," He said. "Give me the glory of rising as high as you can." I left the forest and brought back this story.
I hope these words can help you see that God will never give up on you.
He continues to show us that He will never give up on Caroline!
Thursday, May 10th:
Hospital day 65; Post surgery day 64
Theme for the day: Pray for healing of the blood fungus, stabilization of blood pressure, comfort with breathing and feeding tubes, continued reduction of swelling, increased urine output, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline had an up and down night and day. Her blood pressure has been the biggest challenge to keep stable. The yeast infection in her blood and her blood being acidotic appear to be causing these ups and downs and making her blood pressure stats fluctuate from normal to very low. To counter these fluctuations, they have increased her Dopamine level up to 10. They are also giving her boluses of Albumin and 50cc’s of blood every few hours. As a result she is about 60cc's positive (more in than out) for the day.
The doctors are giving her a mild dose of antibiotics to fight the infection. The reason for the mild doses due to the amount of stress that has been place on the kidneys and this is an effort to avoid any permanent damage to them. However, if she cannot beat this infection with the lower dosage, it will mandate their giving her a more powerful medication. We remain hopeful that this is not necessary.
Dr. Watts is concerned with the Broviac Catheter and the length of time (37 days) that it has been in her chest. Again, the major concerns are that the longer these foreign body continue penetrating the skin, the greater the risk for infection or bacteria to cultivate and get into the blood stream. To simply take this out also creates a problem where they would then be limited to using a vein to administer drugs. In babies you only have 5 places you can use for a PIV (peripheral intravenous (IV) catheter): left foot, right foot, left arm, right arm and scalp. The PIV is a short term catheter and after use, the vein sometimes closes itself off and is unusable in the future. This is a risk that requiring much consideration since Caroline’s condition would requir future surgeries. Thus, saving the veins for future usage is a priority to eliminate any issues at a later date.
Caroline is back on TPN nutrition feeds and was given a new nutrient today - VIVONEX PEDIATRIC formula, a nutritionally complete elemental food that is easily digested in the stomach. The doctors feel that she will be able to digest and process this with less problems.
For those that have been following this journey, you know Caroline has been on a roller coaster ride for 64 days. While we know that the prayers and support for our daughter have sustained her and us so far, she is not considered to be out of danger yet. She continues to need your prayers daily for her total healing and restoration as we wait for the time that we can bring her home. One of the doctors today commented that we are at the point where the "Big Man" needs to smile down on her. God has done just that so many times and we know that He will continue to do so. She is a strong and determined little girl who wants her chance at life. As we pray that God’s will be done, we also ask for comfort, strength and peace for this child who has already endured so very much. We have watched her fight for her life continuously and we covet your prayers that God will give her favor in healing her.
Please continue to pray for all the children who have congenital heart defects and for their families who so often feel overwhelmed with their child’s illness. Our prayers go out to them daily as they walk their own journey.
We love you all!
Michael and Tanner
Wednesday, May 9th:
Hospital day 62; Post surgery day 63
Theme for the day: Pray for Caroline to NOT have Sepsis, pray for healing of the blood fungus, comfort with breathing and feeding tubes, continued reduction of swelling, healing of bruising and skin discoloration, increased urine output, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
We learned today the doctors have identified a blood fungus that is described as a “yeast infection in the blood”. This fungus may have been contracted through one of the IV, catheter or possibly by an injection in a place where the fungus had accumulated on the skin. To treat this fungus, they have administered a medicine called Fluconazole (bis-triazole antifungal agent) that will directly attack the fungus and treat it.
They have sent off another blood culture to check for any additional infections or “bugs” that may be present. In addition they have reinstated ampicillin to fight any of the Sepsis (enterococcus) that may still be present or maybe trying to regroup.
Caroline’s EEG report found no neurological issues that would have cause seizures but rather the seizures where related to the infection she has. The Neurologist will perform another 24 hour EEG tomorrow to confirm no issues with her brain function related to seizures. As a precaution, she is still on a low dosage of Phenobarbital to prevent any seizures.
For most of the day, she has been negative with fluid output (more out than in) and her kidneys are producing from 10cc’s – 30cc’s per hour. The doctors have started her back on LASIX but in managed doses to increase urine output but not dry her out intravascularly. Her BUN level is down from 127 to 104 (normal 8-20) and her sodium level 137 (normal 134 – 143). Her ventilator is set at 20% O2 and 36 breaths per minute and her heart rate is averaging about 145 – 150 bpm. Overall Caroline had a good day. She doesn’t look as swollen as she did yesterday and she is more alert.
Caroline welcomes and we pray for the 2 new children in the CVRU (bed 1 and bed 2).
The only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for GOD to rescue him, and everyday he scanned the horizon for help, but none seemed forthcoming. Exhausted, he eventually managed to build a little hut out of driftwood to protect himself from the elements and to store his few possessions.
One day, after scavenging for food, he arrived home to find his little hut in flames with smoke rolling up to the sky.
The worst had happened! Everything was lost! He was stunned with disbelief, grief, and anger. "GOD, how could you do this to me?" he cried. Early the next day he was awakened by the sound of a ship that was approaching the island. It had come to rescue him.
"How did you know I was here?" asked the weary man of his rescuers.
"We saw your smoke signal," they replied.
Moral of the story: It's easy to get discouraged when things are going bad, but we shouldn't lose heart, because GOD is at work in our lives, even in the midst of pain, and suffering.
Remember that, the next time your little hut seems to be burning to the ground.
It just may be a smoke signal that summons the grace of GOD.
Tuesday, May 8th:
Hospital day 63; Post surgery day 62
Theme for the day: Pray for Caroline to NOT have Sepsis or any other infection! Seizures to cease, brain activty be normal, blood cultures to come back negative for infection, comfort with breathing and feeding tubes, continued reduction of swelling, healing of bruising and skin discoloration, increased urine output, lung strengthening, and continued prayer for Caroline’s heart rhythm to return to normal.
Today was a very stressful and upsetting day. After spending the night by Caroline’s bedside we were exhausted and concerned about what might be causing her sudden swing downward. When the doctors came in to make the early AM rounds, they were surprised to see us standing there at Caroline’s bed. Once Dr. Baird came in and they all were updated on her status, they made their way over to Caroline and began their assessments.
It didn’t take long to see their concern as to her worsened condition and the panic in our eyes. Over the past 24 hours, Caroline’s BUN and Sodium levels in her blood have increase, swelling in her abdomen and upper body has increased, her blood pressure and O2 levels have been sliding downward and she has been very irritable and easily upset. During the early AM hours, she started having small seizures on her left side through her eyes, arms, hands and legs. In addition, they Nurses inserted a Venus line to try and capture better blood gas samples for analysis.
Due to the seizures, Dr. Watts immediately paged down Dr. Shank from Neurology to come in and monitor Caroline. Dr. Moore from Infectious Disease was paged. Dr. Lobbdell ordered a new Arterial Line to pull blood gases and Dr. Stern ordered an ECO of Caroline’s heart.
The ECO team came in first and began an examining Caroline’s heart. The atrial pressures on the left and the right through the stent looked good. The Aortic Arch didn’t have any blood flow issues and the Mitral Valve has grown (this is good news). However, Dr. Stern did see Caroline’s right heart slowing down which is abnormal.
The Neurologist (Dr. Shank) looked at the CT Scan of Caroline’s brain and did not see any issues. He did order and setup an EEG (Electroencephalogram; Brain wave test) to monitor Caroline for 24 hours looking to capture any abnormal brain waves that may indicate a root cause for seizure. They place electrodes on Caroline’s head and then placed a video camera and PC to record the brain waves and the visual aspect of her movements. During the setup of the EEG (10:00 AM), she did experience a minor seizure which was captured and being analyzed. For the next 3 hours there were no signs of seizure or abnormal brain waves until 1:00 PM when the EEG recorded abnormal brain waves. Since 1:00 PM, there has been no further abnormalities.
Due to the swelling and size of Caroline, finding an Arterial line is very difficult. It took Dr. Lobbdell almost 3 hours to find a usable line in Caroline’s right foot. This line will serve as a means to draw blood gases and samples for analysis.
Dr. Moore has indicated the blood samples from Monday are still reporting negative for any infections including Enterococcus (Sepsis). However, this infection takes 48 hours to show sensitivities to antibiotics in the lab. To be proactive for infections, he ordered two broad spectrum antibiotics: Cefepime (extended spectrum of activity against Gram-negative bacteria) and Vancomycin (extended spectrum of activity against Gram-positive bacteria). In addition, he has stopped the dosages of ampicillin (beta-lactam antibiotic).
After working so hard over the past few days to wean Caroline off of the medications, she is now back on several drips and boluses including: Dopamine, Phenobarbitone (to prevent seizures), Lasix, Diuretic, TPN, Methadone, Albumen and Morphine (for pain). For the past 48 hours, Caroline is measuring 500cc’s positive (more in than out) but there are signs the kidneys are starting to increase the urine output and may slow the swelling. However, she is still much larger than she was on Saturday when we had one of our best days.
Bottom line is, they doctors do not know the exact cause of this spiral downward. It has all the symptoms of Sepsis so they are treating it as if it were Sepsis. The good news is, it has not been 100% confirmed. There is some theory that she may have Hypernatremia, which is an electrolyte disturbance consisting of an elevated sodium level in the blood.
Whatever the issue is, Caroline is not well and has regressed from where she was on Saturday. We are once again faced with Satan’s attempt to break her will and interfere with God’s healing. God will not let this happen and together as Soldiers in His Army, we pray for healing and recovery of this sickness!
He gives strength
to the weary
and increases the power
of the weak.
Even youths grow tired and weary,
And young men
stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings
like eagles;
They will run
and not grow weary,
they will walk
and not be faint.
Isaiah 40:29-31
Good news!
Macy Mangum's surgery was successful and she is home recovery!
Thank you for your prayers and support of this child of God.
Monday, May 7th:
Hospital day 62; Post surgery day 61
Theme for the day: Pray for Caroline's blood gas readings and stools to return to normal, blood cultures to come back negative for infection, any pain be eased, comfort with breathing and feeding tubes, continued reduction of swelling, healing of bruising and skin discoloration, healing of extreme diaper rash, no medication withdrawals, increased urine output, successful physical and occupational therapy, lung strengthening, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline’s blood gas report was not favorable again last night. She has a low grade temperature and her BUN levels are still high. In addition, she is now 302cc’s positive (more in than out) and looking swollen again.
The Infectious Disease Doctor came by to examine Caroline and see if there were any “bugs” growing or infecting her. He took a blood sample this morning and so far it is coming back negative for any infections. This process takes 24 – 48 hours to rule out any and all “bugs”. As a precaution, he is increasing her Ampicillin (beta-lactam antibiotic) dosage so they can combat any susceptible bacteria causing infections.
Nurse Scott indicated Caroline has been fussy most of the day. Each time he tried to turn her or change her she would turn red and get extremely irritated. So for the rest of the day, he let her rest and tried not to stimulate or make her upset. He had to give her morphine and versed in two instances today to calm her down. Over the past 61 days, Caroline has adopted the nickname, by the CVRU staff, “Queen Bee” as a result of her high maintenance needs. She seems to be living up to her nickname!
I spoke to Dr. Baird this evening and he is being cautious as to Caroline’s condition in that he feels maybe she is having a stomach issue from all the nutrition in take over the past few days. He has instructed the nurses to dilute the caloric concentration from 30 calories to 23 calories to give her tummy a break. To help with the little bit of swelling, he has restarted the Lasix drip but is still giving her small doses of Albumen to help with the vascular dehydration.
We lift our hearts up to God in prayer and ask that He wards off any infection or sickness that may be trying to violate Caroline’s body. We have faith and confidence He will hear our prayers and protect her from sickness and infection. All things are possible through our God who we trust and believe in.
Please say a special prayer for Kathryn’s friend Macy Mangum as she goes into the hospital tomorrow for surgery.
We continue to be amazed at all the support and prayer our family is receiving. We thank ALL of you who continue to walk this journey with us. It is clear that when God's army comes together for a common cause, there is nothing they cannot conquer with God leading the charge!
Sunday, May 6th:
Hospital day 61; Post surgery day 60
Theme for the day: Pray for Caroline's blood gas readings and stools to return to normal, comfort with breathing and feeding tubes, continued reduction of swelling, healing of bruising and skin discoloration, healing of extreme diaper rash, no medication withdrawals, increased urine output, successful physical and occupational therapy, lung strengthening, no new infections, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline had pretty good day today. She is continuing to be negative on fluid output (more out than in) and her vitals are at target levels. However, she had a poor blood gas report this morning. The blood gas report measures things such as BUN (Blood Urea Nitrogen), Acid, Creatinine and Sodium levels in the blood. Caroline’s report indicated high BUN and Sodium levels in her blood.
The high BUN levels indicate vascular dehydration, most likely caused by the use of Lasix to speed the urine production in the kidneys. To counter this, they have stopped her Lasix drip and administered dosages of Albumin to help rehydrate the vessels. For the high sodium levels, they have administered a dextrose / water drip to bring down the sodium content in her blood. The doctors will continue to monitor these levels throughout the night and are optimistic these will return to normal in a short period.
Caroline’s bruises are starting to heal and her pinkish color is returning. She still has a good bit of bruising and discoloration around her eyes and ears from the swelling and capillary leaking. Her body is starting to return to it’s normal size and they estimate she weighs about 4.09 kilos (9 lbs.)
Yesterday, she started having loose bowl movements and the doctors were concerned there may be some infection causing this. They sent of a sample to the lab which came back negative. They stopped the Polycose feeding to help with the loose stools and are only giving Caroline Portagen for nutrition.
For Caroline:
The Lord bless you
and keep you;
the Lord make His face
shine upon you,
and be Gracious to you;
the Lord lift up His Countenance upon you,
and give you peace.
(Numbers 6:24 – 26)
Saturday, May 5th:
Hospital day 60; Post surgery day 59
Theme for the day: Pray for Caroline's comfort with breathing and feeding tubes, continued reduction of swelling, healing of bruising and skin discoloration, healing of extreme diaper rash, no medication withdrawals, increased urine output, successful physical and occupational therapy, lung strengthening, no new infections, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
What a great day it was for Caroline and mommy! Tanner was able to hold and rock Caroline for almost an hour this afternoon. Once Caroline felt her mommy’s arms she fell fast asleep and was like she had no heart defect at all. It was a precious moment that was better than any medicine that could be prescribed.
Caroline is now off of all the medication except for Lasix (used to treat excessive fluid accumulation and kidney output) and incremental doses of Methadone (used for medication withdrawals). Her ventilator settings are at 21% O2 and 24 assisted breathes per minute. Her tube feedings are a 12cc per hour mixture of Portagen and Polycose.
Over the past 4 days, Caroline has made leaps and bounds with her reduction in swelling and dependencies on various medications. Her x-rays show the lungs clear and all lobes inflated. Her ECO revealed pressure readings in left and right atrium as acceptable and the blood flow across the aortic arch is where the doctors are comfortable based on her hearts anatomy. With a few more days of edema reduction, she should be ready for her breathing trials
We are so thankful for God’s blessings that He has given our daughter Caroline. With complete faith that He will heal her and no doubt in the darkest hours, we can now rejoice that ALL our prayers were heard and his work is done. Although the journey is far from over, we can now see how the Lord has touched Caroline and we believe He will continue to heal her body and make her whole again.
God has a plan for Caroline, what will that plan be?
I Am So Very Special.
I am so very special
I have been from the start.
Before they held me in their arms
My family held me in their hearts.
And like a single drop of rain
That on still waters fall.
My life and love will ripples make
And touch the lives of all.
So read this precious story
As step by step I grow.
I am a special gift and blessing
As each page here will show.
(author unknown)
Friday, May 4th:
Hospital day 59; Post surgery day 58
Theme for the day: Pray for Caroline's comfort with breathing and feeding tubes, continued reduction of swelling, healing of bruising and skin discoloration, healing of extreme diaper rash, increased urine output, successful physical and occupational therapy, lung strengthening, no new infections, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
Another good day! Caroline is marching forward in her journey to recovery. She is continuing to release excess fluid through her kidneys and is requiring less fluid input to maintain her stats and pain levels.
As of this morning, the doctors have stopped the Fentynal and plan to stop the TPN (nutritional milky fluid) sometime early evening. They have increased her Portagen (formula) tube feedings to 10cc’s per hour to help with her nutrition intake and growth. To aide the Portagen, they have added the Polycose nutrient to add extra sugar/carbohydrate calories to her food intake. They did insert an OG tube (Orogastric) to collect any bile in her stomach that she may regurgitate. This tube will remove any bile and prevent it from entering into her lungs and causing infection.
Her nurse Nancy did a lot of range of motion and physical therapy work with Caroline today to help break up the remaining fluid that is in her chest cavity. She worked with her hips, legs, knees, arms, shoulders and hands as part of the range of motion exercises. For her back and abdomen, she rotated her from left to right then on to her stomach, which she seems to like the most. Caroline must have been tired from her workout since she slept right through her lung drainage and the alarms of the new adult patient next to her.
When she woke up, she was very alert and both eyes are clear and follow the sound and motion that is around her. She seems to be tolerating the ventilator and OG tubes very well. Her ventilator settings are still at a minimal and her x-rays show her lungs are inflated and clearing.
Since April 19th, Caroline has lost 3,200ml of fluid (3.2L). Her circulating blood volume is 320ml, there fore she is losing in excess of 1L of fluid per week. Even with all of this fluid removed she still has a good deal in her chest area that needs to be removed. It is hard to imaging a baby having as much as 3 Liters of extra fluid in there body! Nurse Ricardo stated: “Once again, she is proving to be the fighter we all said she was!”
It is good to proclaim the Lord
and make music to your name,
O Most High,
to proclaim your love
in the morning
and your faithfulness
at night….
for you make me glad
by your deeds,
O Lord:
I sing for joy
at the works
of your hands.
Psalm 92:1,2,4
It is God who is the Great Physician!
Thursday, May 3rd:
Hospital day 58; Post surgery day 57
Theme for the day: Pray for Caroline's comfort with breathing and feeding tubes, continued reduction of extreme swelling, healing of bruising and skin discoloration, healing of extreme diaper rash, increased urine output, successful physical and occupational therapy, lung strengthening, no new infections, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
Once again, Caroline has had an exceptional day. When we arrived this afternoon, Caroline was on her stomach and looked as good as we have seen her in a while. The nurses are rotating her on to her tummy every few hours to help break up the remaining fluid and to help with comfort since she seems to like being in that position so much. She is continuing to be entertained by the sights and sounds of the fish aquarium. It is helping her to stay focused and alert as well as keeps her mind off the discomfort of the ventilator tube.
Last night, they removed the peritoneal catheter and are now relying solely on the kidneys for fluid and urine output. With the amount of fluid they are putting in per hour (16.5cc’s) and her urine output (12cc’s – 25cc’s) she may slow down on the overall output but hopefully will remain negative (more out than in) over all. There was some urgency to remove the peritoneal catheter due to the risk of infection. With it out, that is one less entry point for a “bug” to get in.
Her bruising is starting to fade a little but she has a long way to go before all of the bruising is gone. The nurses believe the extreme swelling and the amount of time she was swollen are the factors that caused all of the tissue to be bruised. It has been said she is ready for a night out since she has her eye shadow on. Funny but true, her eyes have dark black rings around them as if she were in a fight and got two black eyes.
She was taken off of Dopamine this morning and is down to minimal dosage of Fentanyl. If she has a good night, Dr. Baird will take her off the Fentanyl tomorrow. They are adding Polycose to her diet (formula based nutrient to add extra sugar/carbohydrate calories) as well as she is still on TPN and Portagen for added nutrition and protein. She is still on a Lasix drip (diuretic) to help reduce the edema and increase urine output. Her ventilator is on minimal settings and she is breathing 21% O2 (room air).
These past few days have been so encouraging for all of us. Just seeing Caroline’s progress from a visual standpoint has rejuvenated our energy and optimism. We thank ALL of you who have continued to pray so hard for her recovery from the sepsis and swelling. The proof of how prayer does work is evident when you look at how far she has come since the Monday after Easter. She is starting to look like “Sweet Baby Caroline” once again!
I can't wait until we can play together Caroline!
I love you!
Big Sister
Wednesday, May 2nd:
Hospital day 57; Post surgery day 56
Theme for the day: Pray for Caroline's comfort with breathing and feeding tubes, continued reduction of extreme swelling, healing of bruising and skin discoloration, increased urine output, successful physical and occupational therapy, lung strengthening, no new infection from leaking peritoneal catheter, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline is looking better and better each day. Today she was fully alert with both eyes open. Sharron, our nurse, setup a Fisher Price toy fish aquarium to give Caroline some light, sound and motion to focus on. She seemed to enjoy the sound and color and was watching the little fish as they swam around the aquarium.
Caroline continues to produce about 10cc’s – 12cc’s of urine per hour and is still having some fluid output on the peritoneal catheter. They took a culture of the fluid coming out of the peritoneal catheter and if it comes back negative, they will most likely remove the catheter from her stomach.
She is down to .3mcg on the Fentanyl (sedation) and 1mcg on Dopamine (increased heart rate and blood pressure). She is off of Nibex (paralytic) and has increased her Portagen tube feedings. She is now at 21% O2, which is room air, on the ventilator. Her swelling is slowly dissipating and she is beginning to look like a normal 2 month old baby again. Caroline was able to spend about an hour on her stomach which helps with the movement of the fluid as well as gives her some additional movement and positioning.
Praise God for continuing to bless Caroline!
A Physical Therapist (PT) came in to help Caroline with range of motion exercises and massage to break up fluid pockets so they will drain into the venus system. In addition, an Occupational Therapist (OT) will be working with Caroline to help her with basic motor functions. For example, for 56 days she has had her hands grasped closed and sometimes it takes therapy to be able to open them again. The OT will also work on throat massages to help Caroline with redeveloping a “sucking” motion to prepare her for bottle feeding in the future. These are all progressive steps that indicate she is on the correct path to recovery.
Depend on the Lord, trust Him,
and He will take care of you. Psalm 37:5
And that we have done!
We turned Caroline over to God and asked He take care of her and comfort her.
The past few days are a testimony of His promise to take care of us!
Tuesday, May 1st:
Hospital day 56; Post surgery day 55
Theme for the day: Pray for Caroline's comfort with breathing and feeding tubes, continued reduction of extreme swelling, healing of bruising and skin discoloration, increased urine output, lung strengthening, no new infection from leaking peritoneal catheter, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline had a very good day today. She even got to lie on her stomach for 2 hours! When we went to the CVRU this evening, we were delighted to see Caroline on her stomach in an effort to break up the fluid and help it to drain either through the kidneys or via the peritoneal dialysis.
In order to increase the Tidal input and output on the ventilator, the doctors decided to place a larger tube into Caroline’s lungs. This tube would enable her to have a greater volume of O2 in and CO2 out. Once this larger tube was inserted, they could immediately see Caroline’s coloring becoming a more normal pink than with the smaller tube. This is a good indication the larger tube was delivering more O2 to her lungs and then distributing through the rest of her body.
The next step was to try and turn Caroline to help break up the fluid that is still causing the swelling. But rather than just limited rotation left or right, they decided to give her a full turn to her stomach and see how she tolerated it. When they first turned her on her stomach, her vital signs dipped down as did her O2 level. However, rather than turning her back over or administering medication to counter the low levels, they wanted to see if she would recover on her own. She did!! Yes, Caroline did recover and in fact appeared to like being on her stomach which was indicated by her blood pressure and O2 levels increasing and remaining very steady. Caroline’s back was bruised and the back of her head was flat. It was the first time we had seen the back of her head in almost 2 months. It was great to see her hair growing and maybe a few curls starting to form.
After almost 2 hours, they returned Caroline to her back, and within a few minutes they noticed a significant difference in the swelling in her head. It was as if they had removed a cork from a bottle and poured out the fluid. Caroline’s head size reduced right before their eyes. Her head is almost back to normal size to where you can see her chin and neck.
This is amazing, praise God for His healing touch!
Over the next few days, a Physical Therapist will start working with Caroline to help with range of motion exercises to keep her fluid from standing in one place. In addition, she is on minimal sedation and paralytic but has started methadone to counter the effects of long term medication use. Her peritoneal catheter has started to leak, a result of the reduction in swelling. To all for continued draining, it has been left in the open position. The main concern with the catheter situation currently is if it is leaking out, then it sets up the possibility of an infection getting in. The doctors are keeping her on an antibiotic to help ward off any potential “bugs”.
We thank all of the people, near and far, who pray for Caroline and follow her journey. Each of you have made our experience easier as reading your messages, scriptures and prayers continue to lift our spirits. Without God and you, we would not be as strong as we are, nor would Caroline be progressing as she is. Please continue to pray for her health and recovery.
We love you all!
Michael and Tanner
Monday, April 30th:
Hospital day 55; Post surgery day 54
Theme for the day: Pray for Caroline's comfort with breathing and feeding tubes, continued reduction of extreme swelling, healing of bruising and skin discoloration, increased urine output, lung strengthening, no new infection, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
Thank you God for answered prayer!
It was determined the issue Caroline was having with Pressure Volume input and output on the ventilator was due to the ventilator tube being out of position. With Caroline becoming more alert she is moving around and was able to move the ventilator tube out of position. By doing so, the ventilator was not registering the CO2 output equal to the O2 input. Now the tube has been repositioned, her Pressure Volume input and output are more equal.
For the past 12 days, Dr. Watts calculated Caroline had put out 2,000cc’s of fluid. That is 2 liters! Picture a 2 liter Coca Cola bottle full of fluid then compare it to Caroline’s body in size - she has literally drained out what would be equal to a 2 month old baby! Even with all this drainage, she is still very swollen all over her body. Until this remaining swelling has dissipated, she cannot begin breathing trials.
The doctors have taken her off of the paralytic, Nimbex, and have reduced her pain medicine and heart “squeeze” medication. She is showing some signs of developing a dependency to these drugs. They may have to give her methadone to help with the withdrawal and dependency to the medications.
With Caroline off of Nimbex, she is becoming more and more alert and able to move her arms and legs. There is a sad part associated with her coming off the paralytic; she is once again gagging from the ventilator tube. It brings tears to our eyes to watch her struggle so much with this tube. As the Respiratory Specialist suctioned fluid out of her lungs, she squeezed my finger as tight as she could, letting me know how uncomfortable it was. It’s hard to watch your daughter struggle and there is nothing that you can do to help her be more comfortable.
We ask God to comfort Caroline as she endures the discomfort of the ventilator and feeding tubes. The bible says God will never give us more than we can handle and we know He will keep his word for Caroline.
~Sleep my child and peace attend thee
All through the night.
Guardian angels God will send thee,
All through the night.~
Sir Harold Boulton
The doctors want to have Caroline's kidneys produce more urine so they have stopped the peritoneal dialysis and have started Lasix to help with urine production. With the dialysis stopped, Caroline's fluid output may be slowed as her kidneys begin to recover from their time off. The production of urine is very crucial to the release of the remaining fluid in her upper body. The next 24 hours will determine if the kidneys can produce enough output to keep Caroline on track with the swelling reduction.
Great news! Holden got to leave the hospital and return home to be with his Big Sister! We pray for strength for his mommy and daddy and continued health and growth for Holden as his new journey as a Little Brother begins!
More good news! Victoria has successfully recovered from her procedures at CMC and Levine Children’s hospital and is going back to Hemby Children’s hospital so she can complete her full recovery. We pray for strength for her mommy and daddy and a speedy recovery for little Miss Victoria!
Please say a special prayer for our good friends Chris and Jeanne as they take their son Justin in to have his tonsils removed today.
Caroline and McClain welcome the new baby in Bed 2 to CRVU!
"Come fly with me Caroline!"
Kathryn's first day at Carrowinds
Sunday, April 29th:
Hospital day 54; Post surgery day 53
Theme for the day: Pray for remedy of CO2 output issue, continued reduction of extreme swelling, healing of bruising and skin discoloration, increased urine output, lung strengthening, no new infection, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
It’s been 3 weeks since Caroline was diagnosed with Sepsis infection and had a major setback. She is still recovering from the effects of the infection but it appears she has beaten this ugly bug! There are no traces of any new enterococcus colonies and her blood cultures are coming back negative for the infection.
We were ecstatic to see Caroline with both eyes open today. It has been a full 3 weeks since we have seen her as alert and with each eye open. But, that didn’t last for long. Shortly after we arrived for the morning visit, our nurse, Ricardo, had to give her more sedation since she was fighting the ventilator and her CO2 output levels were very low. With the sedation, she drifts into a twilight sleep and relaxes so her breathing is regulated completely by the ventilator. The doctors like to see an even flow of O2 in and CO2 out. But since yesterday evening, she has not been exhaling as much CO2 as she should be.
Doctors Baird and Greene discussed this situation today and concluded it could be a result of one of three things: Ventilator tube misplacement; unequal Atrium pressure; or another infection. X-ray and an ECO in the morning should isolate the root cause to this issue.
As for Caroline’s swelling and bruising, she looked much better today than in the past few days. There was an obvious reduction in swelling in her head and the bruising appears to be dissipating. She is still averaging a daily net output of around 170cc’s, and is producing about 2cc’s – 4cc’s of urine per hour. Dr. Massengill, Pediatric Nephrologist, is please with the peritoneal output and kidney production. She is looking to remove the medication heprine from her dialysis mixture which indicates she may be on the road to weaning off the dialysis.
Please say a special prayer for the CO2 issue Caroline is having. We have complete faith that God will shield Caroline from another infection and continue leading her through her journey to recovery.
A prayer for Caroline:
Sickness, disease and pain
I resist you in the name of Jesus
You are not the will of God
I enforce the word of God on you
I will not tolerate you in my life
Leave my presence,
I will never allow you back
I have been healed and made sound
Jesus made me whole
My days of sickness and disease are over.
Saturday, April 28th:
Hospital day 53; Post surgery day 52
Theme for the day: Pray for continued reduction of extreme swelling, healing of bruising and skin discoloration, increased urine output, lung strengthening, no new infection, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline had another good day with fluid output and pressure stability. By the end of the day, she was 170cc’s negative (more out than in) and was a little more alert than previous days. The doctors have increased her protigen feedings and moved her ventilator setting to SIMV. With SIMV, her breaths are either a mandatory ventilator-controlled breath or a spontaneous breath by Caroline. This mode will allow for weaning once she is strong enough to begin breathing trials again.
Caroline’s blood pressure continues to be in the target range and her O2 saturation levels are remaining solid as well. She is still black and blue as if she had been in a boxing match, especially her left eye and ear. Her incision from the open heart and pacemaker surgery are healing and the various incisions from catherization and tube ports are also healing.
The goal over the next few days is to continue with the peritoneal dialysis to continue to remove fluid and reduction in dopamine (heart rate and blood pressure), nimbex (paralytic), and fentanyl (pain reliever). Once these are all at a minimal level, Caroline can begin breathing trials to strengthen her lungs and then be extubated from the ventilator.
Also, we learned today that Caroline’s lungs, before the sepsis infection, were filled with fluid and congestion which was making breathing on her on very difficult when she was off the ventilator for those 5 hours. Now, after the sepsis, her lungs sound much clearer and the x-ray’s are indicating the right lobe is inflated and clear. We pray that once she is ready for breathing trials, her lungs will be clear and she will have a much easier time maintaining her own breath.
Pray to God from your heart for healing. Don't stop. Don't give up. God wants us to ask Him for help. He loves us.
Friday, April 27th:
Hospital day 52; Post surgery day 51
Theme for the day: Pray for continued reduction of extreme swelling, healing of bruising and skin discoloration, increased urine output, lung strengthening, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
For the first time in almost 3 weeks, Caroline opened her left eye. She is being weaned off of the paralytic and is starting to become more coherent. When we put our finger in her palm, she squeezes as if she were holding hands with us. Now more than ever our touch, voice and presence are important.
Caroline is still trending negative for fluid output (more out than in) but has tapered off a little due to needing some blood and the startup of a Lasix drip. The doctors want to put more work on the kidneys so they will increase urine output to help reduce the swelling. Lasik will help with this effort. With the peritoneal dialysis, she is averaging around 30cc’s per hour and is 108cc’s negative since 7:00 PM.
She still has lots of swelling and bruising but we are starting to see some reduction in her size. A good indication of this reduction is seeing Caroline make little bubbles in her mouth from the ventilator. When she was fully swollen, the ventilator was sealed and no bubbles could come through.
Caroline is making progress but the progress is very slow. We continue to ask God for strength, serenity and favor as she steps closer and closer to recovery. We usually live life in the fast lane but the past 51 days has taught us to slow down and appreciate all the Lord has given us. We are grateful for the continued Guestbook entries and emails to Caroline.
May God bless each and everyone of you.
Great news! Victoria moved out of the CVRU and up to NICU today….and Jacob was able to go home for the first time! Caroline welcomes her new friend in Bed 1.
If you would like to send a message directly to Caroline, you can do so by:
- visit Levine Children's Hospital
- click on Email a Child
- enter Caroline Jackson
- type in your special message
This will be hand delivered to her bed side daily.
Thursday, April 26th:
Hospital day 51; Post surgery day 50
Happy 2 months Caroline!!
Theme for the day: Pray for recovery from Aortic Arch catherization, reduction of extreme swelling, healing of bruising and skin discoloration, increased urine output, lung strengthening, no neurological impact from lengthy sedation and paralytic, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline had another good day of fluid output. As of this evening, she was 240cc’s negative (more out than in). She is continuing to produce about 2cc’s – 3cc’s of urine per hour and the peritoneal catheter is still doing most of the output via dialysis.
Her blood pressure and O2 saturation levels have remained stable as well as she is still slowly weaning off some of the medication. Caroline does have a good deal of bruising and purple discoloration around her eyes, ears, face, arms and chest. We are not for sure what this is caused from but is believed to be from a bolus of heparin while in the Cath Lab on Tuesday. Caroline is having about 1 – 2 stools per day, they are still very tarry like meconium at birth. This too may be a result of the heparin bolus.
Caroline’s 2 month birthday was celebrated with a birthday sign that Lisa made (nurse) and mommy and daddy singing Happy Birthday to her. I did promise her all the cake and ice cream she wanted once she comes home.
For all that read this web site whom may have been or are currently going through their own journey with a child or a loved one, this thought will help carry you through:
When our faith teams up with His power, recovery from sickness and disease begins!
Wednesday, April 25th:
Hospital day 50; Post surgery day 49
Theme for the day: Pray for recovery from Aortic Arch catherization, reduction of extreme swelling, increased urine output, lung strengthening, no neurological impact from lengthy sedation and paralytic, and continued prayer for Caroline’s heart rhythm to return to normal.
It has been 50 day’s since our little girl was diagnosed with a Congenital Heart Defect. We don’t always know what God’s plan is for us, but we have faith that He will lead us to what is best for us. We do not know what God’s plan is for Caroline but we do know He chose this path for her because she is special and she will make a difference in this world. She has already made a difference in Tanner and my life.
God was working in our lives even before we were born. God loves us. We are special to Him, and He has a special purpose for our lives in this world and for our everlasting life in heaven! Psalm 139:13
"Happy 2 month Birthday Caroline!"
Happy Birthday baby! We love you!
Love Mommy, Daddy, Kathryn and Riley
Caroline is going through some setback from the catherization that was performed yesterday to inflate the vessel in her Aortic Arch. The swelling has increased which is causing bruising on her arms and head. However, she is producing about 2cc’s – 4cc’s of urine per hour and at 8:00 PM tonight the peritoneal catheter recorded +70cc’s fluid output in one cycle. Her cycle is 1 hour which includes – 5 min of 40cc dextrose fluid input, 50 minutes of fluid dwelling, 10 minutes of catheter drain. In order to produce +70cc’s fluid out put in once cycle she had to drain 110cc’s in 10 minutes….that is a lot! This is good news and if she continues this pace, her swelling should begin to reduce significantly over the next few days.
Since the catherization, her blood pressure and O2 saturation levels have been very stable hovering in the 80’s. She is slowly being weaned off the various sedative and pain medications. There is some discussion about resuming ventilator breathing trials by this weekend. This is all great news and optimism about her progress.
Tonight there was a gathering of all former and current parents of children, including the children, who have had some sort of Congenital Heart Defect over the past 10 – 12 years. We got to meet parents who have been through the same experiences we are currently going through as well as some who were less fortunate. The best thing was that we all share a common theme and have now made a connection for sharing testimony and providing support for each other and parents of children yet to come.
Tuesday, April 24th:
Hospital day 49; Post surgery day 48
Theme for the day: Pray for recovery from Aortic Arch catherization, reduction of extreme swelling, kidneys to begin producing urine, inflation and clearing of lungs and abodomen, healing of the sepsis infection, no neurological impact from lengthy sedation and paralytic, and continued prayer for Caroline’s heart rhythm to return to normal.
The doctors made the decision to go ahead and perform the catherization to explore the width of the repaired arch to determine if there is blockage of blood flow to Caroline’s body. She was taken to the Catherization Lab around 12:00 noon and we were informed at 12:57 they had begun.
Dr. Stern is performing the procedure and will insert a camera in to the Aortic Arch via a catherization from the groin. First, he measures the pressure where the coarctation was repaired, then will move further into the Aorta past the repair and measure the pressure there. The goal is to have pressures on both sides of the repair less than 10mm. If the pressure is more than 10mm, then Dr. Stern will insert a balloon to expand the vessel in order to relieve the high pressure. The balloon will cut 2 of the 3 layers of the vessel wall in order to expand (dilate) the vessel. As the vessel heals, it will heal in the expanded position and not revert back to the original diameter.
Please pray for Caroline as she undergoes this procedure. Pray for God to direct Dr. Stern’s hands to navigate and repair Caroline’s heart.
Thank you God.....all glory to you for carrying Caroline through yet another procedure!
Around 3:15 PM Dr. Stern came to speak with us and indicated Caroline’s procedure went well and she was in route back to CVRU. He said he did find blockage of about 14mm in the Aortic Arch. He was able to use a small balloon (angioplasty balloon) to inflate and expand the vessel and is now measuring pressures on both sides of the repair at 5mm. He believes this is an acceptable pressure measurement to allow adequate blood flow out to the body and organs.
Once back in CVRU, Caroline looked to be a little more swollen from before the surgery. Yesterday and last night combined, she had lost over 720cc’s of fluid (24 oz.) via the peritoneal catheter. The goal tonight will be to close off the peritoneal catheter and encourage the kidneys to take over the fluid output.
Thank you to everyone who has sent Caroline personalized emails. It is a great feeling to know how much she is loved and cared for from family, friends and people we don’t even know from all parts of the country.
"Hey Caroline! I miss you! Hope you feel better soon."
Please continue to pray for Victoria as well as the new baby in bed 2 at the CVRU. Holden has "graduated" up to 7 tower but we want to continue to pray for his full recovery and soon to be homecoming.
Good news! I spoke to Jamyliah's mother today and she may get to go home tomorrow! Praise God for another miracle of life!
Monday, April 23rd:
Hospital day 48; Post surgery day 47
Theme for the day: Pray for the reduction of extreme swelling, inflation and clearing of lungs and abodomen, healing of the sepsis infection, kidney function and increased urine output, no neurological impact from lengthy sedation and paralytic, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline has had a pretty good day today. She was negative about 300cc’s and she maintained stable blood pressure and O2 saturation levels for most of the day. Around lunch time, she did take dip into lower pressures and saturation levels but Ricardo was able to stabilize her with increasing the dopamine and administering a slow dose of albumin (blood plasma protein). In addition, she appeared to show some visual reduction in her swelling. Her mid section and head looked to be a little less puffy than they have over the past 14 days.
Today marks 14 days since Caroline’s diagnosis with Sepsis. All the tests and labs that have been done indicate she has beaten the infection and is recovering from the effects. So we ask, why the continued swelling and lack of urine output and traces of blood in her stool? The doctors are considering what else may be wrong that is causing these continued symptoms. One theory is the Aortic Arch in the heart (where the Coarctation of the Aorta was repaired) may have some minor blockage, due to scaring from the surgical repair, that is causing a good portion of the blood to flow back in to the lungs rather in to the body. To confirm this theory, they are considering performing another catherization to place a camera inside Caroline’s heart and view the amount of blockage. If there is blockage, they will then insert another catheter with a balloon and inflate the balloon to expand the Arch and relieve the blockage. The decision for when to perform this catherization will be made in the next day or so.
Today we took Kathryn to see Dr. Ohmstede so he could look at her heart as a precautionary measure to ensure there are no underlying issues. We thank God for Kathryn’s ECO report showing a normal strong heart. This had been something weighing on us and we wanted to have her checked. Thank you to all the folks who prayed for Kathryn to have a healthy heart so she can be a strong Big Sister for Caroline!
I love you Caroline!
Hurry home Soon!
The CVRU is down to just Caroline and her new friend Victoria. Please remember to keep Victoria in your prayers as she and her family walk their journey to health and recovery.
Some great news!! Last week, I mentioned about a young girl in the Atlanta area whom many had been fasting and praying for that day. I am happy to report that Riley Herrin received her miracle of healing. The reports came back clean and negative…..”non cancerous.” We rejoice with she and her family and that group of prayer warriors who did not waiver in their faith and prayers for her healing. We continue to believe that this same wonderful God will heal Caroline.
To those in GA. and many other states, that have committed to pray for our daughter, we thank you for your faithfulness and obedience to God.
Sunday, April 22nd:
Hospital day 47; Post surgery day 46
Theme for the day: Pray for the reduction of extreme swelling, inflation and clearing of lungs, healing of the sepsis infection, kidney function and increased urine output, no neurological impact from lengthy sedation and paralytic, and continued prayer for Caroline’s heart rhythm to return to normal.
Last night, Caroline had what the nurses are calling a “stellar” night. Her vitals remained steady and she was negative over 300cc’s! When we arrived this morning, we were pleased to see a slight reduction in swelling. She had a little bit of ventilator leaking in her mouth which meant her head did loose some fluid.
Unfortunately, the day wasn’t as good. Sharron had to work hard to keep her blood pressure and O2 saturation balanced. Her fluid output was only 50cc’s for the whole day. When we went back for the 4:00 PM visit, we could tell Caroline had swollen back up a little. An x-ray was taken of her lungs and abdomen to see what was causing the retention of fluid and fluctuation of her vitals. The x-ray looked very cloudy indicating fluid from her lungs to her stomach. Doctor Watts was called and ordered another combination of medications to try and stabilize her vitals. After a cycle of the dialysis (40cc’s input, 50minute dwell, 5 minute flush), Caroline had a fluid output of 75cc’s which is 35cc’s over the 40cc’s input. In addition her blood gases came back as good as they had been all day long.
Tanner and I got to lift Caroline off of the bed briefly just to let her know we were there and give Sharron a chance to straighten her tubes and blanket up. Those few seconds were a reminder of how much we miss her and want to bring her home so we can enjoy the early stages of infancy. It’s very hard to accept these past 47 days are something we’ll never get back. But we thank God for giving Caroline strength and will fight to survive for the past 47’s days and for ever how many days it will take for her to make a full recovery.
Saturay, April 21st:
Hospital day 46; Post surgery day 45
Theme for the day: Pray for the reduction of extreme swelling, inflation and clearing of lungs, healing of the sepsis infection, recovery from catherization, kidney function and increased urine output, no neurological impact from lengthy sedation and paralytic, and continued prayer for Caroline’s heart rhythm to return to normal.
Caroline had a bumpy night on Friday. Doctor Watts spent most of the night at her bedside watching over her and adjusting medication and ventilator settings. At one point, her vitals dipped down in the 40’s again. Some time early this morning, the Respiratory Specialist changed her ventilator settings to PSVG: Pressure Support Volume Guarantee This means a consistent volume of oxygen will be forced into Caroline’s lungs each breath. The reason for this change was due to the amount of swelling she has and the pressure that swelling is putting on the lungs. When the lungs are trying to expand during inhale, the lungs are unable to fully expand since there is so much pressure from the swelling. With the ventilator set PRVC: Pressure Regulated Volume Control, the ventilator would adjust based on the amount of resistance. As a result, Caroline was not taking full breaths nor was she receiving adequate oxygenation. To counter the pressure impact from the swelling, they switched her from PSVC to PSVG and since her vitals have held more stable.
This morning’s x-ray revealed a collapsed upper right lobe and cloudiness throughout the lungs. A result from inadequate ventilation. Since the ventilator change, the x-ray of the lungs looks better an the lobe appears to be recovering.
As of 8:00 PM tonight, Caroline is 142cc’s negative (more out than in) but is still extremely swollen. She did produce 21cc’s of urine in the last couple hours which is more than she produced cumulative in the last 24 hours.
With the concern of the swelling increasing by the doctors and nurses, an ECO of the heart was ordered today to see if there were any issues in the heart that could be causing the continued severe swelling. Fortunately, the ECO showed the heart was functioning as it should post surgery. The stent is showing almost equal pressure between the left and right atrium and the aorta arch (Coarctation repair) showed minimal gradient obstruction. All signs there is no issue with the heart.
Caroline will continue to remain on the peritoneal dialysis and various medications to combat the swelling. We pray for God to provide relief to Caroline’s swelling and help her urine output to increase and the dialysis to continue working. The swelling reduction is a very slow and frustrating process, like watching water boil.
Get well soon Caroline…I’m ready for my little baby sister to come home and play.
I love you very much!
Your Big Sister,
Kathryn Grace
Friday, April 20th:
Hospital day 45; Post surgery day 44
Theme for the day: Pray for the reduction of extreme swelling, pray for the healing of the sepsis infection, recovery from catherization, kidney function and increased urine output, no neurological impact from lengthy sedation and paralytic, and continue prayer for Caroline’s heart rhythm to return to normal.
Today Caroline was moved from bed 4, where she spent 44 days and is now starting her stay at bed 8. Bed 8 is nicer due to the fact she has a window, morning sunshine and more room for family and friends to visit. With a new bed we hope to have new found health and recovery from all the issues she has experienced for the past 44 days.
Caroline is still extremely swollen and does not look good. Her coloring is better than is has but still has a purple dusky tint to it. The peritoneal catheter is slowly making a difference in the fluid output. As of 5:00 PM today, she was 225cc’s negative (more out than in). However, the increased output is causing some swings with her vitals. Around 3:00 PM today, her blood pressure and O2 stats dropped into the 40’s which is dangerously low. The doctors and nurses are continuously working to find the right balance of medication and ventilation to keep the stats in the 80’s. Caroline’s dopamine intake was increased and she was taken off of Viagra in order to help the heart with more “squeeze” and vessel contraction for increased blood pressures.
Please continue to pray for Caroline and ask God to lay His healing hands on her entire body to rid her of any un-heavenly sicknesses, defects or presences that she may have. We are so thankful for all of you who continuously pray for our daughter. Know that your prayers are making a difference and God does listen to each and every one of them.
Remember, Our God is a Big God and through Him, ANYTHING is possible, including complete healing of our daughter, His child, Caroline Elizabeth Jackson!
If you would like to send a message directly to Caroline, you can do so by:
- visit Levine Children's Hospital
- click on Email a Child
- enter Caroline Jackson
- type in your special message
This will be hand delivered to her bed side daily.
Thursday, April 19th:
Hospital day 44; Post surgery day 43
Theme for the day: Pray for the reduction of extreme swelling, pray for negative results in the head sonogram that was performed, pray for the healing of the sepsis infection, recovery from catherization, kidney function and increased urine output, no neurological impact from lengthy sedation and paralytic, and continue prayer for Caroline’s heart rhythm to return to normal.
The peritoneal dialysis was started yesterday around 4:00 PM. It is yielding about +20cc’s to +40cc’s, over the 40cc’s of dextrose fluid, per hour from Caroline. This process is very slow and during the extraction period, Caroline’s vitals fluctuate to low levels which sometimes creates the need for increased volume or fluid. So we are not guaranteed additional fluid pulls each time. Overall for today, she is around 70cc’s to the negative (more out than in).
Caroline’s left side of her face is so swollen that it’s has turned purple and she has some broken blood vessels in her left eye lid and ear. The doctors were concerned about the amount of swelling and ordered a sonogram to check for broken vessels or other issues. We have not heard back on the results of the sonogram but as they tell us – no news is good news.
We ask God to lay His hands on her head and shield off any harm or pain.
Tomorrow, after 43 days in bed 4, Caroline will be moved to bed 8 due to the need for hospital remodeling.
We pray bed 8 is filled with God’s presence and healing as well as guarded and protected by His Angels.
Please say a special prayer for the healing of Holden, Madison and Skylar. These are the other small children who share the CVRU with our daughter, Caroline.
We love you Caroline,
Mommy, Daddy, Kathryn and Riley
Wednesday, April 18th:
Hospital day 43; Post surgery day 42
Theme for the day: Pray for God to lay his hands on Caroline and reduce the swelling immediately, pray for the healing of the sepsis infection, recovery from catherization, kidney function and increased urine output, no neurological impact from lengthy sedation and paralytic, and continue prayer for Caroline’s heart rhythm to return to normal.
Caroline’s swelling has increase even more. She is now at a point where she does not look like the innocent little baby you see in the previous pictures. Her head, arms and abdomen are extremely large and the skin is very tight and the skin is in what is known as the “shiny” stage of edema.
Caroline’s fluid input to output has been in the “positive” by as much as 200+ cc’s per day. Positive means the amount of fluid input (medication, nutrition, volume, etc.) over the amount of output (urine or drainage via peritoneal catheter). The result is continued fluid build up in the 3rd space (peritoneal cavity) which increases swelling in her body.
In order to encourage more drainage, a Pediatric Nephrologist came in and introduced what is known as peritoneal dialysis. This dialysis, different from kidney dialysis, should help offset the amount of fluid input and hopefully bring her in to the “negative” for fluid input vs. output. The dialysis works like this - Every hour, the nurse will close off the pediatric catheter and then will administer 40 cc’s of a dextrose solution which will enter into the peritoneal cavity and dwell for about 50 minutes. After 50 minutes, the pediatric catheter is then opened and with gravity the dextrose fluid is pulled from the peritoneal cavity along with additional fluid. The end result is, input 40 cc’s, pull out 40+ cc’s. She has had about 4 cycles of this and is averaging +10cc’s to + 15cc’s per hour over the 40cc’s input. This is a very slow process but can be a very effective one. The goal is to not have to reintroduce lasix for urine output do to potential kidney impact.
Caroline had an Echo done and it reveal a left to right atrial pressure velocity of <1. This shows the results of the stent dialation to 6mm is providing adequate blood flow and is considered to be an acceptable pressure reading.
Caroline is still very sick and in critical condition. The Sepsis infection set her back 3 – 4 weeks from where she was Easter Sunday. However, we are not discouraged but rather we remain optimistic and positive that she will recover fully and will begin her breathing trials very soon.
Good news from Atlanta….in an unrelated but prayed for child, we learned today she had a successful surgery to remove a tumor in her stomach. It is not known the status of the tumor but we are confident God has healed this little girl and she is on her way to recovery. Thanks to all those who prayed and fasted today for this child.
Caroline and Holden welcome Skylar and the little girl in bed 3 to CVRU.
God speed to recovery for all of those in CVRU!
Tuesday, April 17th:
Hospital day 42; Post surgery day 41
Theme for the day: Pray for the atrial line blood culture to come back negative for any new infections, continued recovery from sepsis and catherization procedure, reduction in swelling and increased urine output, blood and O2 saturation stabilization, atrial pressure equilibrium, no neurological impact, and continued prayer for Caroline’s heart rhythm to return to normal.
Today we learned that one of the IV lines looks suspicious for infection and clotting. The nurse removed this line and took a culture sample to send to the lab to test for infection. This line was a primary line for medication and lab (blood) samples. Without this IV line, they have to combine all medication and lab work into a single line. This is very risky for several reasons. First, the TPN (white milky nutrient flow) cannot be mixed with other medication within the same IV line. Secondly, if there was a need to give increased volume due to an emergency situation, there may not be enough through-put with a single line. Finally, with all the medications going through this line, there is increased risk of clotting and infection. The alternative it so place another IV line into Caroline. However, finding an accessible line with all the swelling which she still has could become difficult. Doctor Watts has an IV team on standby in the event they need to place a line into her groin area.
Caroline has been weaned off of the Nitrous Oxide and Epinephrine and is still maintaining good blood flow and O2 levels. They have clamped off the pedi catheter so the fluid output will directed to the kidneys therefore strengthening their abilities. This is a sign that she is moving in the right direction.
Each day she is taking baby steps to recovery. It will probably take some time to get all the swelling out of her system but we remain strong and are confident that God will carry her through this time.
Let us then approach
the throne of grace
with confidence,
So that we may receive mercy
And find grace to help us
in our time of need.
Hebrews 4:16
Please continue to pray for all the children who are having difficult times with sickness and pain. We are hearing stories of children here in Charlotte, as well as Atlanta, who are going through difficult and painful times. Reach out to these children and their families as you pray for Caroline’s return to health.
Monday, April 16th:
Hospital day 41; Post surgery day 40
Theme for the day: Pray for God’s healing of the sepsis that has infected Caroline’s blood, pray for recovery from the stent procedure, reduction in swelling and increased urine output, atrial pressure equilibrium, lung strengthening, non neurological impact and continued prayer for normal heart rhythm to return.
Caroline is beginning to show signs of progression from the stent procedure performed on Friday. Her blood pressure and O2 saturation levels are holding steady and in normal ranges. She is starting to produce about 3 – 6 cc’s of urine per hour which will ultimately help with the reduction in swelling. She was able to come off epinephrine today and has reduced her intake of dopamine significantly.
To counter the effects of nitrous oxide in the ventilator, the doctors are now administering Viagra to help with blood vessel dilation. Yes, I said Viagra….it was originally developed for the heart, but the initial recipients noticed a side effect that was very positive for the men. I guess there has to be some humor in this situation from time to time.
Over the next few days, the doctors will continue to wean Caroline off of the medications. If her lungs prove to be strong enough, they may start breathing trials sometime this weekend. It is very crucial she is weaned off the ventilator as soon as possible because the ventilator tube in her lungs is a breeding ground for further infections.
Way to go Caroline! Stay strong, we know you can do it!
We love you,
Mommy and Daddy
Please continue to pray for Elyssa’s family as they continue to mourn for their daughter. We cannot imagine the pain they must be feeling, so pray that God comforts and protects them during this time.
Also, please say a prayer for Holden as he has contracted a blood infection in the past day. It’s not known at this time what the infection is but he is in need of prayer.
We give all the glory of Caroline's progress to our God.
Be thankful for what He has given us and for what He has done.
Praise be to God,
who has not rejected my prayer
or withheld his love
from me!
(Psalm 66:20)
Sunday, April 15th:
Hospital day 40; Post surgery day 39
Forty days ago we heard the words that would change our lives forever. Forty days ago our daughter Caroline was diagnosed with a Congenital Heart Defect called Hypoplastic Left Heart Syndrome.
The bible says Jesus walked through the wilderness for forty days where He was continuously tempted by Satan and was amongst wild animals. (Luke 4:2; Mark 1:13). Caroline is forty days into her journey and has been threatened by heart disease, sickness and infection but yet she continues on. She is strong and will continue to fight, for she is not alone in this journey, God has been at her side every step of the way.
Be strong and courageous.
Do not be afraid or terrified…
For the Lord your God goes with you;
He will never leave you nor forsake you.
(Deuteronomy 31:6)
Theme for the day: Pray for God’s healing of the sepsis infection, recovery from stent catherization, increased urine output & swelling reduction, atrial pressure equilibrium, blood pressure and O2 saturation stabilization, lung strengthening, non neurological impact and continued prayer for normal heart rhythm to return.
Caroline is showing signs of beating the sepsis infection. Her vitals are holding steady and she is being weaned down on epinephrine, dopamine and nitrous oxide. Late last night, she started making urine for the first time since Friday. These are all signs that she may be through the worst with the sepsis infection.
Over the next few days, the doctors and nurses will monitor her vitals closely and continue to wean her down on the high powered medications. The hope is over the next 3 – 4 days, her urine output will increase and her swelling will dissipate.
We thank God for carrying Caroline through this infection and we continue to ask for His blessings on our daughter as well as are thankful for all of He has done for our family.
We love you all!
Little Elyssa lost her fight for life today and has gone to be with God in Heaven. Along with Jack, she now has a new perfect body and is free from sickness and pain.
Please pray for Elyssa's family as they endure the most difficult time of their lives. No words or actions can take away the pain, only God can heal their broken hearts. We ask that God comfort and protect this family.
God Understands
God knows all about it
your present weakness and trial.
He knows what you are going through.
He understands your hurts and your fear.
He has not forsaken you
of forgotten about you.
Jesus Christ, the Son of God,
went through great suffering Himself.
And it is He
who comes to strengthen
and to comfort you
in your affliction.
Saturday, April 14th:
Hospital day 39; Post surgery day 38
Theme for the day: Pray for the infection which has invaded Caroline’s body to be healed, pray for reduced swelling & urine output, recovery from stent catherization, atrial pressure equilibrium, blood pressure and O2 saturation stabilization, non neurological impact, and continued prayer for normal heart rhythm to return.
Throughout the night and today, Caroline has been resting and recovering from sepsis and yesterday’s catherization to inflate the stent in her atrial septum. Blood culture results are coming back negative for any further colonies of the Enterococcus which means she is on the road to recovery from the sepsis infection.
Our prayers have been answered!
To God be the glory for carrying Caroline through the wrath of the blood infection!
Over the next few days, the effects of the sepsis will still linger and keep Caroline in critical condition but we should start seeing some improvements in her swelling as well as reduction in the targeted medications that are used to fight the infection.
In addition, the doctors are starting to wean her off of the epinephrine and nitrous oxide which are required for blood pressure and oxygen saturation levels. Most of the day both of these have been at acceptable levels and have held steady.
Some of the biggest concerns at this point are reduction in the swelling, kidney functioning for urine output, lung strengthening for breathing and atrial pressure equilibrium. The doctors are optimistic that we should start seeing urine output in the next few days which will begin to reduce the swelling she has. If the left atrial pressure is equal to that of the right atrium, then the lungs should not have any fluid backup and will be able to strengthen and hopefully allow Caroline to being breathing without the aid of a ventilator.
Your continued prayers are still needed because each of these steps are very difficult hurdles for Caroline to overcome.
Good news from CVRU! Today, Holden was extubated from the ventilator and is now breathing on his own. Great job Holden! Keep up the good work.
Please continue to pray for Elyssa, the baby girl in bed 1, as she goes through some very difficult times. Our hearts go out to her parents and loved ones who are in the first week of their daughter’s difficult journey.
People often ask where Tanner and I continue to get our strength during this difficult time and I sometime wonder myself. The postings on the web site gives us hope and encouragement knowing each of you are thinking of Caroline during this difficult time. But the ultimate strength comes from God. My mom, Sue, sums it up best in a letter she wrote to us that we want to share with you….
Dear Michael and Tanner,
God has a wonderful way of adding or deepening some precious qualities through our times of struggles and pain. I recently read a devotional which said much about this. It expressed that some of the most unforgettable people we will ever meet will be those who have suffered much more than one can imagine. They will quickly tell you that it was their struggles that made them strong. There's a wonderful scripture in which God sheds light on those perplexing times and the question, "why?" 2 Corinthians 1: 3-4 tells us this. "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and God of all comfort, who comforts (sustains) us in all our trouble, so that we can offer comfort (encouragement) to those in any trouble with the same comfort that we have received from Him."
If one never goes through a hurting time, they never experience the special compassion and comfort of Almighty God. If we never experience that compassion and comfort, we will have little or nothing to give to hurting people around us. If we seek God in our times of suffering, He will pour those caring qualities into us when we're feeling crushed or overwhelmed. However, they are not to just get us through. He's filling us up with resources to make us a well of compassion and comfort for a world of people in pain, resources that can only be developed through hard times.......hurting times as you are experiencing now. He desires to fill us with that sense of compassion, which literally means the ability to "feel with" someone. God is using your times of struggle now and cultivating a wonderful tenderness in your heart and your responses. People who have been through the valley with Jesus emerge with an amazing ability to care, to wait, and to trust God. There's this sense of quiet confidence and peace in someone who has been kept afloat by the total sufficiency of Christ when there was nothing else to hang onto. They have this "nothing can sink me" poise of a person who's found when Jesus was all they had that Jesus is all you need.
God is using what you're going through to give you the emotional equipment to make you a powerful "make a difference" person. This painful process is equipping you to be one of God's wounded healers in a hurting world.
I love you!
Friday, April 13th:
Hospital day 38; Post surgery day 37
Theme for the day: Pray for Caroline’s recovery from catherization to increase diameter of the atrial stent, healing of the Sepsis infection, blood pressure and O2 stabilization, swelling reduction, kidney function and urine output, non neurological impact, strengthening of the lungs and atrial pressure equilibrium, and continued prayer for normal heart rhythm to return.
We were called first thing this morning and informed the doctors had determined it was critical to perform a catherization to increase the diameter of Caroline's atrial stent from 4mm to 6mm. This procedure is something that was necessary to alleviate the pressure in the left atrium that was backing up fluids into the lungs and preventing her to breathe on. It was also causing low blood pressure which was magnified by the infection. The issues with the Sepsis have Caroline very weak and unstable and there is risk she might not make it through the procedure.
The procedure started at 10:10 AM and around 12:20 PM we were notified Caroline was coming out and was doing well. Dr. Stern came out to speak to us said he was able to inflate the stent to 6mm. He also indicated the echo revealed the pressure was equal between the left and right atrium. Optimal inflation would be 8mm however Dr. Stern considered it too risky to continue with the inflation. As you inflate a tube you decrease its length. The concern was a shortened length could cause the stent to slip off the septum and into the atrium which would result in an emergency open heart surgery to retrieve the stent. Dr. Stern indicated they would evaluate the atrial pressure and could go back in and inflate to 8mm in 2 weeks if needed.
As they were transporting Caroline from the Cath Lab back to CVRU, she went in to cardiac arrest and the doctors performed compressions for over 5 minutes before they were able to stabilize her. They believe this was a result of the effects of the procedure and being off of regulated medication and ventilation.
By 4:00 PM, they are starting to seeing her vitals begin to recover and believe the results of the stent dilation are making an impact. The next 12 hours are critical as she continues to fight Sepsis and recover from the catherization.
Please keep Caroline in your prayers was we overcome this obstacle in her journey to recovery.
With sad news, I regret to inform you that little Jack passed away. He is now sitting next to God in heaven. Please say a special prayer for his mommy and daddy as they go through this extremely difficult time. As for God to comfort them and confirm to them that their little boy is now sitting next to our God in heaven where there is no more sorrow and no more pain. He has shed his earthly body and in now wearing a brand new perfect body made by God especially for Jack.
We must remember to thank God everyday for all He has given us and done for us.As we travel this journey, we are learning just how delicate life is and how important it is to love our family and friends with all our hearts.
Thursday, April 12th:
Hospital day 37; Post surgery day 36
Theme for the day: Pray for the SEPSIS to be healed and leave Caroline’s body immediately! Pray for healing of the pneumonia, swelling to subside, blood pressure and O2 saturation levels to remain stable, kidneys to keep producing urine, reduced left atrium pressure, and continued prayer for Caroline’s heart rhythm to return to normal.
Today was another tough day for Caroline as she enters her fourth day battling the blood infection, Sepsis (Enterococcus faecalis). We’ve learned much more about the effects of the infection and how it impacts Caroline’s body. One of the biggest effect is the capillary leaking of blood and fluids into the 3rd space. Like a porous garden hose that weeps water into a flowerbed, Caroline’s vessels have become porous and are leaking blood, O2 and fluids in to the 3rd space (under the skin) causing severe swelling. As a result, her blood pressure and O2 levels are weakened which in turn creates a necessity to provide volume (blood) and increased ventilator O2 and Nitrous Oxide levels. To alleviate the severe swelling, the doctors inserted a Pediac Catheter into her lower abdomen which helps release the pressure of fluids in the 3rd space. However, by doing this, the pressures created by the swelling in the 3rd space are no longer pressing against the vessels creating resistance to the leaking. So now you have even more leaking from the vessels which in turn requires more volume to maintain blood pressure and more O2 to maintain oxygen saturation levels. It is a very difficult balance to manage and creates high risk for Caroline’s well being.
BLOOD REQUEST Watching over Caroline for the past few days, we have noticed the amount of donor blood she is requiring to maintain her blood pressure. In just a few days, she has absorbed 6 IV bags full of donated blood. We asked the nurses about the donated blood and learned there is a critical nation-wide shortage in the blood banks. Most of the blood is being shipped to Iraq to be available for the wounded soldiers leaving a shortage for hospitals.
We encourage all who follow Caroline’s journey to get in touch with the local Red Cross and donate blood. http://www.redcross.org
This not only helps Caroline in her fight for life, but it helps many others who are in desperate need of blood.
Please continue to pray for the other children fighting for their life with Caroline – Elyssa, Holden and Isabel.
We thank God for giving us the strength and courage to face each day of Caroline's journey, we ask God to give the parents of the other children in CVRU strength and courage as the embark on their journey.
Our God is a BIG God!
Wednesday, April 11th:
Hospital day 36; Post surgery day 35
Theme for the day: Pray for the healing of Caroline’s infections – Sepsis and Pneumonia; reduction in swelling, increased urine output; blood pressure and O2 saturation stabilization, atrial pressure equalization and continued prayer for normal heart rhythm to return.
Caroline is very sick, the sepsis is coming into full strength and is causing extreme difficulties to manage vitals and keep her stable. The next hours will be crucial to determine if Caroline can get over the hump with the infection. This infection lives in the blood stream and is carried by the blood throughout the body. This infection is so severe that she almost didn’t come through on Monday night. .
To help combat sepsis, the doctors are giving her targeted antibiotics for the infection and added blood to maintain blood pressure and O2 saturation levels. An effect of the Sepsis is capillary leaking which means her blood and fluids she is given are leaking into the 3rd space (skin) causing extreme swelling. There is growing concern as to the amount of swelling and the lack of urine output. An effect of the swelling is increased pressure on the lungs causing for higher ventilator settings. At some point, she will reach maximum ventilator settings so over the next few hours, they will be inserting a pediac catheter into Caroline’s stomach to help drain the fluid and reduce the swelling therefore alleviating some of the pressure on the lungs.
In addition, the doctors have been discussing the atrial pressure between her left and right atrium’s. There is evidence the pressure in the left atrium is still too high and may be the root cause as to why she could sustain self breathing and vitals when she was intubated (removed from the ventilator) on Friday. We will be meeting with the doctors to discuss an attempt to increase the 4mm stent to 6mm in hopes this increase will relieve enough atrial pressure to allow her to come of the ventilator. (Note: this surgery will not be attempted until after she has recovered from the sepsis.) If the stent cannot be increased to 6 mm of if it slips into the atrium, Caroline will have to have surgery to completely remove the atrial septum (Septectomy). This surgery is very difficult due to the specific anatomy of Caroline’s heart and her current weakened state.
Please pray for all the babies in CVRU – Caroline, Holden, Elyssa, Will and the new baby in bed 6. They are all in serious condition and need your prayers to help them and their families during this very difficult time.
We walk in Faith not in sight alone.
Tuesday, April 10th:
Hospital day 35; Post surgery day 34
Theme for the day: Pray for the healing of Sepsis and Pneumonia that has infected Caroline's body. Also, pray for vital stabilization, reduction in swelling, increased urine output, lung strengthening and continued prayer for normal heart rhythm to return.
AM Update: Caroline had a very difficult night, her blood pressure and O2 saturation levels were dangerously low and she had to have continued doctor and nurse intervention to sustain her vitals. Various times through the night, the doctors and nurses were extremely concerned for Caroline's life. Around 2:00 AM she began to stabilize and has continued to remain stable for the past 10 hours. Then next few hours and days are critical as to how she responds to the medication and how they combat the sepsis and pneumonia.
Please keep Caroline in your thoughts and prayers.
PM Update: Caroline is still holding stable and is under a sedative and paralytic to help her rest and give her body a chance to fight the infections. One of the infections was identified as enterococus and is being treated by high powered antibiotics. In addition, Caroline is on Epinephrine and Nitrous Oxide to stabilize her blood pressure and O2 saturation levels. She was over 400cc's positive fluid intake over output this morning but has since been producing urine and is now closer to 100cc's positive. As a result, she is still very swollen which causes concern for her chest incision and the pressure against the pacemaker in her abdomen. These areas are being monitored for any complications until the swelling goes down.
Infections were expected to happen due to the long period of time which Caroline has been on the ventilator and other intravenous lines. The doctors had told us early on that the risk of infection increases with the amount of time on the various lines. They were not surprised when she contracted them at this stage. In addition, they feel they recognized and treated them in time limiting any further complications once they have been removed.
Thank you all for your continued prayers and support. We continue to hear of testimony of how Caroline has changed the lives of those who follow her story. Not only has she changed our lives, but we have been given the opportunity to share her experiences with other families now facing similar situations. We are hopeful that sharing what we have been through will help and encourage others as they embark upon similar journeys with their children.
Special prayer request: There are two new children in the CVRU with heart defects that need your prayer and support as do their families. One child, little girl in bed 1, is in very critical condition and being supported by the ECMO machine (life support). The nurses asked that I send out a special prayer request for she and her family. In addition, the little boy, Will, had surgery yesterday and needs your prayer for a safe and speedy recovery.
Caroline, Holden and Isabel welcome these children to the CVRU as friends and partners in the fight for life.
God bless you all!
Monday, April 9th:
Hospital day 34; Post surgery day 33
Theme for the day: Pray for healing of Caroline’s pneumonia and sepsis. Pray for reduction in swelling (capillary leaking), urine output, O2 & blood pressure stabilization, lung clearing and strengthening, chest incision healing and continued prayer for normal heart rhythm to return.
As you can see from the above prayer list, Caroline has contracted two infections, Pneumonia and Sepsis (blood infection). These were contracted sometime Sunday but didn’t become fully engaged and identified until this afternoon.
Last night and today, Caroline’s blood pressure and O2 stats have been fluctuating from very low to very high. On several occasions, the nurses had to use a breathing bag (air pump that allows for more positive control of manual ventilation) to get her O2 status up from the lower 30’s to the 75+ mark. In addition, they were working diligently to maintain adequate blood pressures which were also fluctuating from low to high. Oxygen levels are set at 60% due to low O2 stats and she is also on Nitrous Oxide to help relax the lungs. Her kidneys have stopped producing urine. She is back on increased Dopamine, Primacore and Lasix medications.
Caroline is having extreme swelling from capillary leaking and also running a fever in addition to the various respiratory and blood pressures fluctuations. She has once again been sedated and put on a paralytic drip to keep her asleep and immobile until they can combat these infections. Also the doctors are awaiting a culture report to determine the sensitivity levels of the sepsis and pneumonia so they can administer the proper antibiotics to fight these infections.
The exact cause of these infections is unknown but the likelihood of getting infection is increased the longer you are on the ventilator. Today is the 32nd day she has been on the ventilator. These are both very serious infections and the doctors are monitoring Caroline closely as she fights to overcome yet another obstacle in her journey to recovery.
The next few days are crucial as to how the antibiotics will work against the infections and how Caroline responds to this setback. We know in our hearts that Caroline is a fighter and God has her in His loving arms and His angels are ministering to her. We remain strong in our faith that she will once again be the victor and overcome this latest battle that she is in.
If God brings you to it, He will bring you through it.
Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment, thank God.
We ask that as you continue to pray for her, believe with us for our daughter's total healing and restoration to perfect health. Know we are most grateful.
Sunday, April 8th:
Hospital day 33; Post surgery day 32
Theme for day: Pray for Caroline’s blood pressure and blood O2 levels to stabilize; lungs to clear and strengthen; blood and urine cultures to be negative for infection; and continued prayer for her heart rhythm to return to normal without the aid of the pacemaker.
Caroline had a very good chest x-ray at 4:07 AM this morning. For the first time her lungs looked inflated and free of fluid. Her vitals and stats were also very stable throughout the night and morning.
However, around 1:00 PM this afternoon, Caroline started having issues with high blood pressure and low O2 levels in her blood. Dr. Watts was paged to come and check Caroline to determine what was causing the fluctuations. He was able to adjust some of the medications and ventilator settings to stabilize her but is concerned about possible infections. He captured a blood culture and a urine sample to send off to check for any such infections. For precaution, he administered a wide spectrum antibiotic to combat anything that may be causing her fluctuations. He will monitor her closely through the night for any changes in her vitals.
Happy Easter!
He is alive! He is alive indeed!
Saturday, April 7th:
Hospital day 32; Post surgery day 31
Theme for the day: Pray for continued respiratory strength and recovery; cardiovascular equilibrium; increased urine output; and continued prayer for normal heart rhythm.
Caroline is recovering from yesterday’s 5 hour exercise off the ventilator. She had to work very hard to remain off the ventilator for 5 hours, and then be re-intubated on the ventilator made for a very long and tiring day for her. Today, she has rebounded and is doing very well. Her vitals are stable: her O2 levels are 75 – 85; her blood pressure is holding steady; and she is approximately 90cc’s (3 oz.) to the good for fluid output versus fluid intake.
But our biggest surprise came at 5:45 this evening. Sharon, our nurse, asked if we needed to leave right away and we said no. She then presented use with hospital gowns and told us we were going to get to hold Caroline. For the first time in 31 days, Tanner held her baby girl. Watching Caroline’s vitals as Tanner held her, it was obvious she was very comfortable and enjoying the moment. She has the sweetest look on her face and her eyes stared right at her mommy’s eyes. For about 5 minutes, it was as if nothing was wrong with Caroline and she was a normal healthy 6 week old in her mother’s arms.
In situations like these, you cherish every minute you have with your daughter, son, family members and loved ones. We have realized life is so delicate and precious that we need to take more time to thank God for giving us life and the opportunity to love each other.
Tomorrow is Easter Sunday, the day Jesus rose from the dead and left the tomb where He was buried after being crucified and dying so our sins would be forgiven. He paid the ultimate price so we could live and love one another. Tomorrow, take time to tell your family and friends you love them, take time to thank the Lord for sending his only Son to die so our sins would be forgiven. Never take for granted the time you have, for you never know the length or qaulity of that time.
Thank you all for your continued prayers, support, food and gifts. Most of all thank God for giving us the opportunity to love Caroline. Happy Easter!
