Day Eleven

I got up early to go switch with Art and, like I had thought, the boys weren't awake when I left. Later I talked to my mom, though and things were going pretty well.
Esa had another breathing trial, but only a few minutes in, he was hyperventilating again. They did start feeding him more again, though and he started tolerating it better. He was at 16ml/hr, with a goal of 19/hr. They took off the sensor on his head that measures the oxygen in his brain. He looked so different when I first saw him, with the swelling and the sensor gone. At first I thought his hair line was receding! Haha. His look kept changing so much that it was hard to really know what he looked like. He had been swollen from everything at birth, then went down a bit, then got more swollen from surgery, and now was back down again.

They began lowering the doses of pain medication and sedatives and Esa started having withdrawals. His body would spasm randomly and he was super fussy, so they put him on methadone, so that it wouldn't be as hard on him. He had a really rough afternoon and I didn't leave his side for anything for about 3 hours. He would cry really hard for a few minutes, then calm down a bit for a few minutes and then start again. It was so sad not to be able to help very much. I wanted to be able to snuggle him and pat his back or rock him, but I just rubbed his forehead and talked to him to try to soothe him. Because he was so upset they kept getting a bunch of junk and blood out of his breathing tube. You could hear it in his breathing and it would make him mad, which would only make things worse.
When he finally calmed down they were able to do another spontaneous breathing trial and he did really well. I was so surprised that they were even trying with the afternoon he had had, but he did it! It was hard to watch because there were a few times where he was breathing super fast, where he wasn't breathing at all, or when he would get uncomfortable from something else. The plan was to do another breathing trial in the morning and if he did well, after monitoring him for a bit they would extubate him. I was pretty excited and so surprised. Especially with all of the times he hadn't done well with the trials.
Art came back after work to stay with Esa so the boys could have a few solid days with me and the night was pretty uneventful.