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NICU Diary Day 89

Wednesday, January 03, 2001

I made it off the vent yesterday for 24 hours! This was the first time I've been off the ventilator for an entire 24-hour period!!! I was a little tired today but not overly exhausted. Mommy and Daddy aren’t getting too excited yet, but they are hoping that I continue doing so well.

Mommy met my new Senior Resident and my new Intern. She likes both of them and thinks they will take good care of me this month. The Resident is also a Mommy, which is always a bonus. They increased my food from 80cc every four hours to 90cc. Hopefully, those extra calories will keep my strength up so that I can stay off the vent for good!

Preparing for Discharge

The NICU doctors are busy setting up all of my first follow-up appointments for after discharge. They want to have them scheduled so that I can go home as soon as a nurse is found.

I had follow-up x-rays of my neck and thoracic vertebrae today so that ortho can look for continued ossification.

The ENT nurses stopped in to see Mommy. They're ordering new trachs for me before I go home. I get new trachs every two months, so I'm due. They still haven't tracked down the technician who did my second hearing test, so we still don't know the results.

Wendy took care of me again today. The other nurses in the NICU are teasing her and saying that I have her wrapped around my cute little finger, even more than I do with Mommy. She carries me around everywhere, and I LOVE it.

Mommy and Wendy both played with me a lot today. I sat in a swing and then a bouncy seat for a while. I also danced a little bit with Mommy and cruised around Room 3 to socialize with the other babies.

Insurance Update

Mommy chatted with Sandy, a lady from the Goldenhar Support Group, on Monday night. Sandy had great advice on insurance issues. It turns out that she used to have the same insurance company and case manager, so she told Mommy what our insurance company covered. For example, they will cover all my formula since I'm 100% tube fed. Mommy has gotten a lot of good advice on the insurance company from both Sandy and another friend whose husband works with Daddy. Both have children with feeding tubes and are great sources of information.

Daddy came to hang out with me tonight. I can’t wait to out with Daddy in the recliner at home!

P.S. I received fun Christmas presents from Mommy's cousin and our neighbors. I have a new book about trains, a silver cup engraved with my initials, and some new toys and clothes.


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