UNOS listed

My little one is now officially on the UNOS list for a new liver. Seventy two days prior to the call for listing, she was laying in a crib waiting to die. Her bilirubin was double of what it is now. Her kidneys were not doing well. She was getting IV albumin to help her kidneys. She had a drain in her abdomen to remove fluid. There are times when I stop and think about it that it is completely unfathomable that she is still alive.

Sweet Hope is still very, very sick. It is easy to forget that as she smiles her adorable smiles or places her tiny hands across her eyes to play peek a boo. Her MRI showed a "massive" spleen which takes up more than 2/3 of her entire little torso. The bottoms of both lungs are collapsed either from spending 11 of the last 13 months laying in a crib or from her enormous organs pushing up against them. Her kidneys looked abnormal. She is anemic. Her liver is cirrhotic. There is still a little fluid in her abdomen. And yet, my sweet baby girl fights and smiles. She is gaining weight, and not just in her abdomen. She is getting stronger. She is learning. She is playful. And now we wait for another miracle for her.

When the NP called to let me know she was officially on the UNOS list, it was a mixture of emotions. I am beyond grateful for the chance she is getting. BEYOND grateful. It gives her a chance at a life. Yet, to get that chance, it means that someone is going to experience pain unimaginable. My baby girl's gain will be someone else's loss, and I wouldn't wish the pain of that loss on anybody.

Hope is listed for a whole liver or a part of a liver. That means that she could receive a baby or child sized liver, or part of an adult liver. Thinking about it, well, it's hard. I don't know how to pray for it. And I certainly will not ever be able to properly thank those who chose to give my baby girl a miracle in the midst of their own pain.

Our team at Boston Children's Hospital has told me the wait is very unpredictable. I could get a call tonight, or it could be a few months from now. We will have labs drawn regularly to see if her place on the list moves up to a higher priority. Right now, we are moderate priority with a PELD (pediatric end stage liver disease) score of 18. Her doctors all feel that if she has a few more months of relative stability to get stronger, it will be better for the 10 hour surgery and recovery. I trust that He who has gotten her this far, will provide the perfect timing. And in the meantime, we try to live life to the fullest.