NICU Diary Day 52

Monday, November 27, 2000

I was throwing one heck of a tantrum when Mommy showed up today. My arms were flying all over the place, and my face was bright red because I was so mad. I even grabbed my earphones and beat them on the bed a few times!

Mommy was very sad that she hadn’t been there to calm me down. I quieted down almost immediately once she changed my diaper and lifted me out of my ortho board. Once I got settled in Mommy’s arms, I was wide-awake and very happy. I loved hearing her voice and watching her face. I also found a handful of her hair to pull on, which I thought was pretty fun.

Mommy paged my speech therapist while I was awake, hoping she could try giving me a bottle. Unfortunately, she got there just as I was fading into naptime. They tried the Haberman bottle, but I was too sleepy. Speech therapy came back before my 3:00 p.m. feeding, but I was still pretty sleepy and didn’t get anything out of the bottle.

I had another ultrasound of my kidney and new X-rays of my vertebrae taken before Mommy arrived this morning. The ultrasound was taken to monitor blood flow to my kidney. My blood pressure is a little high, and the doctors want to make sure that my kidney isn’t getting stressed. We'll be getting results of both the ultrasound and x-rays tomorrow after radiology, nephrology, and orthopedics review them. I'm praying that my C1 and C2 vertebrae have fused together so that the orthopedic surgeon lets me out of my ortho board. At least that would be one problem solved!

Discharge Update

The NICU doctors are holding a big meeting about me on Thursday morning. Everyone is going to be there, including Mommy and Daddy, the NICU social worker, discharge planner, respiratory therapist, and one of my primary nurses. They're going to discuss a game plan for getting me home within the next few weeks.

Neonatology ordered a home ventilator for me to start using so that Mommy and Daddy can get familiar with how it works. The new game plan is to get me off the ventilator during the day, so that I will only need it at night. If I'm discharged on a vent, I'll require a night nurse at home. I'll also be going home on oxygen as well as a feeding tube that will stay in my nose.

Mommy stayed later tonight and game me my bath. She also did all of my trach cleaning and changed the ties with some help from the nurses. Mommy and Daddy are hoping to establish some kind of routine for my trach care once I get home. It's quite a major event at the hospital!