tuesday 8/6/2013

Uneventful. No changes for Ava. They didn't even increase feeds which annoyed me a little. They said that she was doing so well they didn't want to disturb anything...but by golly, she's still hungry! And she's still not gaining weight..and they already took away the TPN (IV nutrition) yesterday. grrrr. I played with her for a couple hours and then snuggled her to sleep. She woke up when I put her down and cried and cried. I discovered her ipad is on a different network so she can actually watch streaming video on hers. She mostly sucked on her hand and fingers while I was there. I think it is such a relief for her when I show up and remove the little socks from her hands. She has to stay socked up so she doesn't pull her NG tube out of her nose. I just watch her though. Her head control is really improving. Her physical development and control is still much like a newborn though. I read her the clifford books I brought. She smiled at a blue bird in one book but not at me. I also brought in her bumbo chair and a stack of blankets with different textures. Her giant crib has so much storage space under it that I am getting a little carried away. I also requested that she get a mobile on her crib. She has a referral in for music therapy and child life therapy. These are two different teams of people that do different things with kids or babies. Tomorrow we should get an idea about heart surgery scheduling. It's exciting and make-me-puke scary at the same time.