I do not know why I have hesitated to post this update on Caroline, but for some reason it has been really hard for me to sit down and write about her. There are so many sweet family members and friends who are truly concerned for us, and are lifting us up in prayer daily, and for that we are soooo very grateful! Your sweet cards, emails, messages, and texts have meant so much to us over the last several months. Dealing with Caroline's prognosis is by no means easy, and my heart breaks for my precious baby girl, but we are taking everything one day at a time. The fact that God has a plan for her, He has from the beginning, and the assurance that he makes no mistakes, is helping us tremendously. I am treasuring every moment of my pregnancy with her! She is a very active baby, and is always on the move.
We had a cardiac echo last week.....a procedure that allowed the specialist to look in greater detail at her heart. Unfortunately we did find out that she does have some significant cardiac anomalies. Basically there is a large hole between two of the chambers of her heart, and two of the major vessels in her heart are reversed; which will eventually lead to an insufficient amount of oxygenated blood in her body....making breathing impossible for her. In a "normal" baby this would be a complication that would be treated with surgery, at some point after birth. The main concern I have had is that I do not want her to in any way suffer. My sweet doctor explained how death typically occurs in babies with conditions similar to hers, and she assured me that they typically just drift off to sleep.....no pain or suffering. What a relief to hear! We could demand surgery for Caroline, but after much prayer and talking, we are not making that choice for her. We know that with her brain malformation alone, her prognosis is very poor, and we have chosen to do nothing "selfish" and try and postpone the inevitable. We know that God has her precious life in His hands, although we do not know why He has chosen this for our family, we are trusting that He will provide all we need. The doctors can "predict" how long she can live with this condition, but our doctors have been honest...saying they really do not know, and admit they are not God, and DO NOT want to guess. We know that she will probably not survive for more than a few days to weeks this way. As difficult and heartbreaking as this news is, it is somehow peaceful. We have known for several months now about her diagnosis, but not knowing what to expect has been the hardest thing to deal with. Having somewhat of an idea about the length of her lifespan has given us peace over the "what-ifs".
It is our prayer that we can surround sweet Caroline with happiness, peace and love for the length of her life. We want her to feel the joy we have for her, and know that we love her. It is hard for me to picture how the days in the hospital will be, and if we do come home with her for a short time, but I do know that I want to have every opportunity to love on my baby girl. We are greatly saddened and heartbroken for our sweet Caroline, but it is our desire that her days here on earth will be filled with happiness and smiles, not sadness and tears. We want to rejoice in her precious life, and the amazing gift that she is. It is our prayer that we can be with our little angel when she is welcomed into Heaven. Rhett and I are talking a lot about what we want to happen at the hospital, how we will handle family and visitors. We have so many decisions to make, and we just ask that you pray for us to have sound judgement and clarity when making all of these difficult decisions.
The good news is that she is now head down, and is swallowing like a "normal" baby. Apparently these are two things that are uncommon with babies with her diagnosis. The fact that she is head down is great news, as we are hoping to not have another c-section. When babies are not swallowing well, the amniotic fluid greatly increases, putting the mom at risk for excessive amniotic fluid. This causes a lot of discomfort for the mom, as well as elevated blood pressure, etc. Thankfully, we are not being faced with any of theses situations!
It would be super easy for us to just be mad, angry, and have a major pity party. This Christmas season, I am daily reminded of how blessed we are. Just last night Rhett and I were talking about blessings and the many wonderful things God has given us. I started thinking, and we both agree that there are probably a lot of people that would choose to be in our shoes, other than the situation they are in. As hard and trying as this is for us, there are so many other people in this world who are suffering much greater than we are. I am so thankful to our God for blessing us with an amazing marriage, fabulous children, a strong faith, and hope for the future. Don't forget to thank God for all you have been given, when you start to think about it..............it is so much, and can put so many things into perspective. We hope your Christmas is very Merry, and let us all remember the reason we celebrate CHRISTmas!!
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit".