I just wanted to let everyone know that Claire is such a sweet baby girl! She is so good. With everything she has gone through, she is so sweet and is such a delight. She hardly ever cries - only when they take her food away and she's hungry. She is beautiful in every way. Claire loves to snuggle and has fallen in love with a Baby Einstein lullaby cd. It's so amazing to watch her notice that the music is on and that she actually listens to it. We also put a mobile in her crib this weekend and see seems to watch it turn every now and then.
Claire grows each day right before our eyes. It's so hard to believe we have had her "in person" in our lives for almost 8 weeks. I can never say enough that she has taught us so much in these last 8 weeks than we could have ever imagined. We just love her so much!
And her nurses and doctors probably realize just how much we love her when we are there at the crack of dawn each day and on the days that we don't leave until 10 pm. I am sure they get tired of us being there! But we just can't stay away. Afraid we might miss something? Of course! Don't want to miss a minute of holding that sweet baby? Of course! But the nurses and doctors are great and don't try to shoo us out the door. And they answer each and every question we have - or at least attempt to.
As far as an update for today - over night Claire had blood in her stool again. When I called at 2:30 am, she had not had it yet. When I called at 5:30 am, the nurse told me the news. They decided to take her off of her feeds and put her on IV fluids again to let her belly rest. Plus, they thought she might have her cyst drained today so she would have been taken off of foods for that anyway.
My thought was that it could be a reaction to the HMF (human milk fortifier) that they put in the breast milk. It adds calories to the milk. But it can also cause irritation in babies. The doctors still are not sure, so they talked about starting her on Elecare formula (a grossly broken down formula) tomorrow. She could stay on this formula for a few weeks, then hopefully work back towards drinking breast milk.
They did xrays this morning and her abdomen looks fine. I have heard them mention the word "colitis" too, so it could be that. Her labs came back normal and her hematacrit was up from 29 to 31 which is good. Her abdomen still looks very distended, but after rounds this morning, the doctors said radiology refused to drain the cyst again like they have done in the past. The risk outweighs the benefit according to them. Both times they have drained the cyst, it has reaccumulated in days. So risking infection, puncturing something, or hitting a major vessel is not worth a few hours of a smaller cyst.
The neonatologists checked with the surgery team and as of this afternoon, they don't want to do an ultrasound because they don't feel that she needs surgery on the cyst at this point. They want her to have her heart surgery first before the cyst surgery due to putting stress on her heart. So we are still at a stand still with the cyst. Her belly is so large that she is starting to get small spider veins on her lower abdomen. I hate it so much for her.
We are hoping to schedule the family and doctor consult this week to get all of her doctors together in one room so we all get on one page. This is a service they offer patients to ask questions and to find out short and long term goals for Claire. We are looking forward to this meeting to see what their plans are for her. It's hard to keep it all straight when she has so many doctors!
So that's it for now. Kind of a sit and wait kind of day. But through all of this, Claire is as "good as good" (to quote one of her nurses this weekend!). She has a grace about her that I have never seen in anyone. I hope she always carries that with her. It will carry her far in this world.......
The Scott Family