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.

Eye of the Storm

The last couple of weeks have been so hard for me. Juliana is doing great, so great that all I can think about is taking her home. As you may know we have moved to the regular medical floor while we wait for her next surgery. This is exactly what we have been doing for the past couple of weeks, waiting. It's like the eye of the storm or the crest of a roller coaster. Everything is so calm but the anticipation just eats at your nerves. You know that at any moment you will be taking the plunge and the excitment will begin. I've never been on this coaster before and I don't know when is it going to end or even what to expect next. I don't know how bad the storm is going to be but I know it is coming. So for now I am trying to enjoy the calm (which is much harder than I ever thought). We still do not have a date or even a week that the surgeon would like to reconnect her intestines. She had another study done yesterday to see what's in between the two stomas. I do not have the results yet but I am hoping that this will put us one step closer to deciding on a date at least.

She has gone up and down on her feeds this week but fortunately not stopped. She had a bit of increased output from her ostomy bag which pulled us back a few steps. She went from 8cc per hour to 4cc and then increased to 5cc yesterday. She will probably go up another cc today seeing that her output yesterday was within range. On two occasions this past week she has attempted to take a bottle and failed each time. She starts to gag and then her oxygen saturation drops. I think every four or five days we will attempt to give a bottle feed and see if she can learn how to do it. I am sure that with time she will get.

She also had an eye exam yesterday and the doctor says it seems like things are getting a little worse. There is increased traction on the peripheral of the retina. Friday a retina specialist will be in to take a look also and decided if it's time to intervene and perform retina surgery to save her vision.

Overall she is behaving like a normal baby. She hates diaper changes, baths and ostomy bag changes. She also likes to sleep most of the day with awake periods scattered in between. She loves her pacifier and gets very angry if you take it from her. She has been lifting her head up off my chest occasionally while I hold her. She still likes to pull her cannula and feeding tubes out (even if you wrap her hands up she finds a way to get at them). The hardest part is seeing her doing so well and not being able to take her home. She has improved so much in the last few months and even more so in the last few weeks. I was hoping to have her home for Christmas but that is now out of the picture and I am hoping at least before my birthday (Feb. 5th). I am really happy that she is doing well regardless of when she gets to come home and experience life outside of the hospital.