NICU Diary - Day 10

Monday, October 16, 2000

Mommy spent all day with me today. Daddy had to go back to work so that his insurance can keep paying all the doctor bills! The ortho board finally arrived this morning but, unfortunately, it didn’t fit quite right. The doctors want my neck to stay back more than how the board had me positioned, so they took it away to “tweak” it some more. We are hoping that it will be done by tomorrow morning.

Since my bowels finally kicked in, the docs decided to let me have some of Mommy’s milk. I get a little less than one teaspoonful every hour. They did a check to make sure that it’s moving through my system and so far everything looks great. That’s good because the milk should help me really start to grow, especially my bones! I did get the hiccups for a while after they started feeding me. I got a little cranky about that. Mommy thought it was great to see my funny facial expressions, but I still didn’t open my eyes. She could see they were moving around a lot though. I was definitely kicking and moving around more today. The docs have finally stopped giving me so much morphine.

Mommy talked to one of my resident neonatologists this morning. She said that it's unlikely I will be sent home if the docs are still worried about my spine. I will probably be transferred out of the NICU in 1-2 months and moved to another floor in the Children’s Hospital. My orthopedic doctor thinks it could be up to four months before they can tell if my vertebrae are stable enough to support my spine.

Susan, a nurse from the craniofacial group came to talk to Mommy this afternoon. The nurse brought a lot of information about cleft palate and the craniofacial group. Mommy talked to her about a new procedure that some doctors are doing on infants called jaw distraction. Since my chin is so small and might not grow very much, I will need surgery to lengthen it and enlarge my airway. It’s way too early to tell about any of this right now though. I still need about a year or so to grow.

The craniofacial team can do my ear reconstruction when I am about 6-7 years old. There is also a chance that I might need to have some of my skull plates moved around. The neurosurgeon thinks that my front plate (forehead) is fused together. If so, my forehead could get kind of pointy as my head grows. They can do a surgery to fix that, but Mommy is hoping I want need it. The nurse said that it is a ten-hour surgery and is very complicated.

Mommy got to change my diaper several times today and wipe my mouth off with Q-tips and gauze. I spit a lot since I don’t swallow very well, so the nurses and Mommy wipe up my drool. My jaundice levels were up a little today, so I might get put back under the tanning lights. Mommy and Daddy brought some music for me to listen to last night. I have my own little CD player and headphones. The music is nice and keeps me company when they aren’t there to hold my hand. My ventilator pressure was lowered again this morning and my blood gas levels were still OK. Hopefully when my new trach comes, I will be off the ventilator even more!

The other big news for today is that I got a new cousin! He is supposed to be older than me, but I decided to show up first! I don’t think he has a name yet, but I’ve heard he is doing just fine. I can’t wait to meet him someday after I get out of the hospital.