NICU Diary Day 46

Tuesday, November 21, 2000

I graduated to room #3!!! Last night while Daddy was visiting, the nurses moved me to my new room. Room 2 was full, noisy, and busy. We're all enjoying the quietness of Room 3. I'm on the back wall, which has more privacy.

Unfortunately, Montez, the bunkmate I had for the last six weeks, couldn’t graduate with me. My new roommate is Adam. He only weighs 2 pounds 10 ounces. That’s how much I weighed at birth, and Adam is 9 weeks old!

I made it off the ventilator for nine hours yesterday, and I went for twelve today. So far things look great with my breathing, and the doctors have started talking about a discharge date. The two biggest issues I have to work on before I can go home is getting off the ventilator and feeding.

I'm sucking on my pacifier and getting stronger every day. Unfortunately, the speech therapist thinks I have quite a ways to go before I can take a bottle. I did get a little breastmilk by mouth today when she put it on my lips. I don't have quite as many spit bubbles as I used to, so swallowing seems better.

If I can't get enough nutrition from the bottle, doctors will recommend I have surgery for a gastrostomy tube. The g-tube is more permanent for long-term feeding issues. Right now I have a tube in my nose, and I'm not too interested in having that stay in for a long time!

I had my V.C.U.G. test early this morning, but we haven’t gotten the results. Wendy, the nurse who took me down for the test, told Mommy and Daddy that they don't think I have reflux. The doctors need to look at the pictures in more detail before they can say for sure.

This afternoon, Mommy and Daddy met the attending surgeon for U of M's craniofacial team. He talked about my future reconstructive plan. The first thing he's focused on is the shape of my head. He wants to evaluate me for any signs of craniosynostosis (premature fusion of the skull plates). He may also request pictures of my head when I have another CT scan in December. By looking at the CT images, surgeons can tell if my lower jaw is all there or partially missing. He thinks that some of the left side of my lower jaw and/or TMJ is missing.

It's likely that I'll need jaw reconstruction and distraction to enlarge my upper airway. The biggest issue with a small jaw is that the tongue falls back when lying down and obstructs my breathing. That's why I need the trach. Before the jaw surgeries, I'll have my cleft palate repair at around 18 months. I'll also need a lot of orthodontia work and maxiofacial surgeries to align my jaws, straighten my teeth, etc. as I grow up.

Ear reconstruction is another option as I get older. Surgeons can reconstruct a left ear as early as age six. Ear reconstruction takes about four separate surgeries and includes harvesting part of my rib bone to create an ear.

Pediatric Ophthalmology checked out my eyes this morning. I don’t look to be at risk for ROP, which is a problem that preemies sometimes have with their eyes. He also checked out the dermoid cyst I have on my left eye and found another one on my right eye. The cysts are cosmetic, but he said they will affect my appearance quite a bit. The left one makes the lower part of my eye bulge out. I'll eventually have both cysts surgically removed. They shouldn't interfere with my vision, but they do put me at risk for astigmatism. I'm a definite candidate for glasses!

As if today wasn’t busy enough, I also met with a physical therapist. She checked out the mobility and flexion of my arms and legs. Mommy doesn’t think that I will need much PT. I seem to be moving everything pretty well, although I'm a little tight in the thigh area from sitting the same way in my ortho board all the time.

Mommy did sneak in a couple hours of holding time this afternoon, and she and my nurse Wendy (who is a big Michigan fan) had some fun. Mommy and Wendy dressed me up in a Michigan sleeper and blanket before Daddy came back this afternoon. He thought I looked pretty cute until he saw the Michigan emblem. I am so cute though that Daddy still loves me, even in a U of M outfit!