NICU Diary Day 37

Sunday, November 12, 2000

I’m still running marathons on the ventilator. Today I’m going for sixteen hours, and am doing very well so far.

I really like wearing my gown and being wrapped up in blankets. It’s much cozier than lying naked under the bed warmer. This way I get to cuddle in the blankets, work on getting my milk belly bigger, and listen to music. I also really like to look at toys. Mommy and Daddy put up my Piglet rattle that I like to watch swing over my head!

C-Spine Status

I have definitely outgrown my second ortho board. The orthotic techs are coming tomorrow to get me fitted for a new one. I have gotten so much longer that my rear end is hanging over the edge. This is making my thighs swell up from sitting on top of the board instead of fitting down into it. I also tend to slide down in the board since my bottom isn’t actually in the mold anymore. I hope they get a new one really soon so that I can sit up like a big boy. I was sitting up more and really liked looking around, but I can’t do that anymore because I slide right out of the brace.

The orthopedic surgeons say I have to be stabilized in the c-spine brace until I can independently hold up my head. They don't think this will happen until I'm at least four months old (Jan/Feb). The specialists need to see that my vertebrae are fused together and will protect my spine. If my vertebrae don’t fuse properly, I risk severing my spinal column. That would definitely end any hopes Daddy has for my golf career!

This afternoon Mommy and Daddy talked to a neonatal resident about designing a neck brace that will support just my c-spine. That would be great because then Mommy and Daddy could hold me instead of the board. That could also improve plans for breaking out of this place.

Today I got to meet my Uncle Dave and Aunt Sandy from Cleveland. They were very excited to see me, and they thought that I was very cute. I opened my eyes a lot to flirt with my Aunt Sandy, but I kept them closed when Uncle Dave was in the room! My cousins Annie, Michael, and Tommy were also at the hospital, but they were too little to visit me. I can’t wait to meet them when I come home from the hospital. My cousins brought me a new book called Rock-A-Bye Farm. It was one of their favorite books when they were little like me.

I also got a gift from Paul and Angie who are friends of my Uncle Dave and Aunt Sandy. Paul and Angie live in Ann Arbor and offered to help us if we ever need anyone close to the hospital. They gave me a set of three music CDs with some really fun songs. I'm building up quite a library of books and music!!!!