Our sweet Caroline is 2 weeks now.
We are home from Dell and enjoying being together again as a family. Caroline's diagnosis is a random genetic disorder called Trisomy 13, although we don't know the severity yet. She has 4 heart defects that allow too much blood to push into her lungs making her breathing rapid and calorie consuming, making her tired a lot. These defects are correctable if she survives to 8 months. She also has a soft pallet cleft in the back of her mouth, repairable too later. Her sweet little eyes are not formed correctly. The assumption is that she is blind although she turns towards light as if she can tell the difference. She takes pumped milk via a bottle and feeding tube depending on how tired she is. We were able to get her tongue clipped in hopes of better feedings and even nursing some.
The doctors sent her home on Hospice care telling us she may only live a few weeks or months. We are prepared for the worst but still hoping and praying that she may be one of the survivors of this disorder. We have hope!!!
Thank you all so much for your kind thoughts and prayers. Although this has been a whirlwind of events and emotions over the last month we are firmly planted in our faith. The Lord knows what Caroline's needs are whether that be here on earth or in Heaven with Him. We feel blessed to have her with us, however long that may be. We are choosing joy and celebrating her life!!!