Mia is officially on the list. The transplant coordinator brought me the official letter yesterday. I can't quite explain the feeling of having my newborn listed on UNOS. I am very grateful this is even a possibility, yet my heart is broken all at the same time. Organ donation is such delicate topic, especially when it involves babies. I read a story on my friend Kim's blog that was really touching. Her baby is the recipient of a heart transplant- he is super cute! It is very comforting to know there are families out there living normal lives with their babies who have donor hearts. Our transplant coordinator is going to introduce us to a local family who has a daughter who had a heart transplant a couple years ago. It will be nice to see her running around... a sign of things to come.
Now we wait, I am hoping that we will get to take her home during the waiting process- it could be months before a donor heart becomes available. I would love to have some family time together at home instead of waiting here.
Today was a monumental day- we are now "on the floor" which means we are out of the ICU. She has to learn to slow down her breathing so she can eat. She is currently getting fed through a feeding tube, and is only getting vitamins through her PIC line... YAY Mia!! We are hoping she will be eating from a bottle soon. Tomorrow's jobs: learn how to such/ swallow, and breathe slower. I will try and get some updated pictures of her tomorrow- she looks much better without all of the tubes!