Claire has had another good day so far. She was dressed in a cute little onesie this morning and very alert. I got to hold her for about 1 hour and the nurse took the cannula off to see how she would do. When we left the hospital a little while ago, she was still cannula-free. But we will see how it goes when we go back tonight. The doctors decided to give her some lasiks today because she is looking a little puffy. It may be why she weighed so much last night. So I am expecting her to possibly lose a few ounces with the lasiks. Claire was so hungry when I got there today. It was her lunch time. She is doing awesome with her feeds - so much so that they have stopped her lipids and will stop her TPN (nutrient fluids) tonight and she will just be on breast milk only! Let's pray the plan goes that way!
There was talk about another transfusion today because her hematocrite was down to 33. The doctors wanted to check with the cardiologists to see if their parameters had changed since she was born. They had originally wanted the number between 40-45. But since her heart has not been an issue at this point, they may accept a lower hematocrite. So we are waiting to hear back on that.
We also met with the pediatric liver surgeon today. She was very nice and thought that my suggestion of doing a weekly ultrasound to check the status of the cyst was a good idea (definitely a relief for me!). She also said that Claire was really too small to do any surgery, so they would probably continue to drain the cyst like they have been doing if need be. Then as she gets bigger, they would either put an internal drain fron the liver cyst into her abdomen so the fluid would drain out and be absorbed by her body. Or they would do a similar but different procedure where they create a "window" in the cyst - cut out a part of it or make a hole in it. The fluid would then drain out into her body and be absorbed. She did not think they would have to go in and remove the cyst or part of the liver at this point. We are still praying each day that the cysts (there are 2) will dissolve on their own very soon and never come back.
Claire has had the same 2 girl "roommates" for a while now and they are all "friends". It's nice to see familiar faces each day when we go visit Claire. We each feel the other parents' pain when something goes wrong or the doctors have to do a procedure on the baby. It's so tough day in and day out not knowing when you get to the hospital, what is going to happen that day. So we all try to stay positive and support each other. We also got to visit with one of our favorite labor and delivery nurses today! We plan to take some goodies to her and the other nurses and doctors on Friday.
The Scott Family
Happy Birthday Daddy!!! I love you!!!