Liviana's repeat echo showed that her pulmonary pressures are half what they were last week. They are now 30. That is still high but it is obvious that they are improving on their own. They need to be down around 5 or 10 and I am optimistic she will get there. She is healing, growing and getting better day by day.
Dr. K. said that he needs to see her take all of her feeds by mouth in a 24 hour period of time and be showing consistent weight gain and she can go HOME! It will likely be no more than 7 more days. Can you believe it!! I am exclusively breastfeeding her and she has not had a bottle and hopefully we will be able to keep it that way. I just need to figure out a way to be there for each feeding day and night. Right now, I am there for 3 feedings a day and the rest she is still getting through gavage. I have no doubt that she would easily breastfeed during all feeds and gain weight. She is a chow hound and is not shy about eating at all. She has consistently been gaining weight since I started nursing her this past weekend. Dr. K. said her weight is right where it should be for her age and birth weight and maybe a tiny bit higher.
The VSD is not an big issue and will likely close on its own. We will follow up with it a few months after she goes home. Similarly, the hemivertebrae is not a concern at this point either. He said he will notify the orthopedist but they likely won't want to see her until she is walking. I had a huge list of things to talk about and will mark more off tomorrow.
She is pretty uncomfortable with her reflux after eating. Like Miles she has silent reflux, where she does not actually spit up. CDH and reflux go hand in hand for obvious reasons. She is currently on medication and we will continue that and consider some other medicinal options if it seems to get worse. Dr. Cusick told me that the NG tube makes it worse because it keeps the esophageal sphincter from closing. I hope that it improves when we get that tube out because she seems to be in agony for about 5-8 minutes after eating.
We had a new sitter start on Monday and she is great. She has been a nanny for many years so she does those extra things like writing a note telling me what they did all day and sending me text message updates on them. The kids enjoy her and that helps me relax when I am at the hospital. Being able to spend this time with Liviana while she is awake and active helps me feel like a mom to her. I know that sounds weird but for so long it felt like she belonged to the hospital and now I feel like she belongs to me.
I can't believe she will be coming home soon. I'm not sure she knows what kind of a zoo she will be living in. She is so loved and Aria can't wait to have her home.
Check up DAY!
4 weeks ago