Ten weeks! That is the amount of time we have left before we meet our newest daughter. It’s hard to believe it is coming so soon.
This week has been exciting and amazing in the life of our little Faith. We had an appointment at Shands yesterday, and God has been working many more miracles on her little body. Her spine looks much better than it did 4 weeks ago. It now appears she is only affected from her underarms to just below the chest cavity, versus the pelvis as previously diagnosed. He also pointed out that most of the abdominal contents have “settled back into the body.” Folks, those organs haven’t settled into the body, the Great Physician has been at work and proving to us and to these doctors that He will have the final say! We even heard the doctor say that she did not appear to be as extreme as they had originally diagnosed. His feeling is that the outcome will ultimately be the same, because she doesn’t have anything covering her chest to create a pressure system for her lungs to work. She does not have a sternum, and they are not 100% sure that she has a diaphragm. But they are sure that the heart is within the chest cavity. But he gave us the name of the surgeon he will be meeting with, and is going to do his best to meet this week.
But…my sister, Kiss, works at Shands and miraculously ran into our named pediatric surgeon this morning (again, God is with us and working diligently). She introduced herself, then proceeded to tell him about our Faith. He said that without looking at our films yet, it sounds as if she may suffer from Pentalogy of Cantrall. This birth defect has a series of 5 things that can ultimately be wrong: the organs on the outside of the body, little to no sternum, little to no diaphragm, no pericardium (the membrane surrounding the heart) and possible heart defect. He said he believes that all of these defects can be fixable, but he would need to look at our case. He gave her his number and had me call and schedule a consultation with him. He will hopefully meet with our perinatologist tomorrow. My sister was quick to inform him that the last thing we want for our daughter is to prolong any pain or suffering, or for her to have no quality of life. He was thankful she shared that with him, and said he would be in contact with us.
I share all of this to let you know that while this is all very exciting, it comes with some great decisions that are to be made. Some would say it gives false hope, others say it draws out the grieving process. But I want to say that our hope is in the Lord Jesus Christ. Not a doctor, not a cure, not a fix. He will ultimately determine the outcome of Faith’s life! And we are grateful to Him that He is faithful. He knows what’s best for her, even better than we do. If He sees fit to take her to Heaven, we know beyond a shadow of a doubt He has been working through her and in her the entire time. We have seen with our own two eyes, the miracles that have taken place in her little body, and no one can argue that it was only God! Even the doctors!!!
Our prayer is now that we will have a clear direction in decisions that may be coming our way. God has been faithful to provide us guidance and peace thus far, and I know He will not stop doing that now. We want His will for her life and for ours, and we are willing to be a part of whatever He decides.
(These pictures were taken this morning, and I will treasure them FOREVER! Girlfriend got the trademark O’Steen nose, and I for one think it’s adorable!)