tuesday 7/9/2013

Ava was sweet today. Again, very diaphoretic. She gets new blankets every 3 hours because they are soaked with sweat. The therapist showed me baby massage and we practiced together. Then, she practiced sucking with the binky-trainer. It's a pacifier with a tube through the end and a syringe of breastmilk on the other end. The therapist let me do it and she said that this was the best Ava had ever done. She took the whole 3 mls, 1/10th of a ml at a time. I tried to go back at her 9pm feeding to do it again but the therapist forgot to write that I could do it in the orders and the nurse didn't feel comfortable with me doing it wihtout it written.  Her tube feeding was changed again so that she gets less fluid but the same number of calories. When babies hearts are struggling (or adults for that matter) they have a fluid restriction. So because Ava shows signs of congestive heart failure she is on a fluid restriction. She has tetrology of  (pronounced "Fa-Low"), a term I never thought I'd see again after nursing school. Cardiology spoke with me yesterday and told me she would have heart surgery before discharge. He said it would be best to have the G-tube surgery first because they don't want her to have surgery soon after heart surgery and we don't want to take her home with an NG tube down her nose. So, In reality we could probably go home faster if I was willing to take her home with the NG tube - but I'm not. It's just too easy to pull out by her..or her 3 siblings, and I think she will swallow better with it out.