Well it's been quite a while since I have posted. Juliana is doing really well. She is up to six and a half pounds this week and looks great. She is successfully taking 8cc and hour continuous and gets three feedings by mouth a day. It's such a small amount in a large bottle but she drinks it like a big girl. It takes her about 10 minutes to finish an 8cc bottle (that's about 1-1/2 teaspoons), but she loves every minute of it.
We still don't know when her surgeon would like to perform her surgery. This is the most frustrating part of this whole experience. We are just waiting indefinitely. I am hoping that it will be soon but I am afraid that it probably won't. We did discover this past week that Juliana's bones are significantly demineralized (lacking calcium). This bit of new information doesn't really surprise me at all. Despite the fact that she was born extremely early, she has spent quite a bit of time on Lasix which tends to eat away at the bones. The x-rays show that she did have a few rib fractures previously but they are now in the healing process and fortunately that is all that they found. So in order for her surgery to happen she needs to be off the oxygen, her bones need to be stronger, her bilirubin needs to be lower and she needs to be bigger. She is definitely growing and her bilirubin has improved so much, but she still requires oxygen and it may be a while till her bones are stronger.
In the meantime we are just trying to enjoy the time that we do get to spend with her. Her big brother has become very attached and spends most of his time talking about going to Boston. He gets really upset when it's time to come home. This past weekend he told me to go home and that he would stay with baby sister. He now has his own doll with an ostomy and bag like his sister. He put tape on the dolls face so that it would look like Juliana. He feeds the doll with a bottle while I am feeding Juliana. I am so glad that he is handling this all so very well.
Thanks everyone for all your support. It means the world to us.