monday 8/26/2013

Ava smiled for me today! Yay! She hasn't done that since before she got sick in early July. It just made my day. Ava was just sweating buckets last night, so much so that pretty much everything that was taped down, came up. So this morning Ava had to go back to radiology to have another NG tube placed in her nose since the other one slipped right out. Her picc line was also retaped for the 100th time, but this time it was taped halfway up her head in her hair. She is still on 3 or 4 liters of high flow, i forget which. They decided not to wean it today because they were weaning the milrinone, which is the heart med and they need to be able to see if there will be any side affects from that weaning. So far it's been good. Ava is still considered to have congestive heart failure because the heart is working harder to pump appropriately. It will continue to do so until the right ventricle remodels and gets smaller. It grew abnormally large when it had to pump harder with the hole in the heart and the smaller than normal outflow tract. Her BNP lab value today was over 600. The high-normal is 100. This lab value measures stress on the heart. Cardiology said that they do expect it to be elevated after heart surgery and we'll just keep watching to make sure it trends downward. Ava seems to be more comfortable lately with the pain med regimen. The occupational therapist stopped by again today and said we'd start feeding therapy again when she is weaned to at least 2 liters.  Little Julio came by for a visit to the NICU today. I thought "you know you've been here for a LONG time when babies that Ava was paired with, who were discharged, are coming BACK to visit their nurses." oh brother. He was such a big boy too. Has that much time REALLY passed!? In other news, the baby in the bed next to Ava also has VACTERL, but not nearly as severe because he doesn't have the esophagus problems.