Updated: Jan 15, 2019
Tuesday, November 07, 2000
I am a fast growing boy! My weight from last night showed that I gained an ounce since Saturday night. I am now getting 36 cc of milk every three hours, and my feet and belly are getting chubby!
The nurses told Mommy that I'm above average in weight for my gestational age. That’s good because I need to grow fast so the doctors can figure out what's going on with my neck. Sometimes when I get really mad, I can almost wiggle my way out of the brace!
I slept a lot today because the doctors were making me work harder to breathe on my own. They are going to get even more aggressive with the weaning when my new trach arrives (hopefully tomorrow).
Yesterday I had an ultrasound on my head to make sure that everything still looks OK. The ultrasound came back normal, no hemorrhaging or abnormalities.
The chromosome test also came back. It shows that all of my chromosomes do indeed match up to a perfect 46XY. The test they did on me was even more detailed than the one that Mommy had when she was pregnant. This test would have shown even the slightest chromosome mismatch.
Genetics will probably evaluate me again when I am six months old. They should be able to confirm my diagnosis and give Mommy and Daddy a little more information on what to watch for as I grow. As for how and why I got Goldenhar syndrome, we will probably never know (maybe in 20-30 years).
I have a new rotation of neonatologists for November. They requested a consult with the orthopedic specialists to update them on a long-term plan for my c-spine brace. In other words, when do they estimate I can get out of it?! Ortho agreed to come by and run another set of X-rays on me when I outgrow the board that I’m in. That should be really soon because my bottom is already hanging over the end of the darn thing!
Some of my neonatal doctors have been talking to Mommy about what she has read on Goldenhar Syndrome. Most of them have never seen a patient with this syndrome, so they like to know what Mommy has found out from her “online chat” sessions. I am full of surprises for everyone, including the doctors that are treating me!
Neurosurgery requested that I have another CT scan around my due date, which was mid December. They want to check out my brain again to see if everything still looks OK. I sure hope they find good news!
NICU Life & Bonding
I got a new CD today that Mommy and Daddy made especially for me. They read a whole bunch of stories from my pile of books. Grandpa and Grandma Dankelson, Uncle Dale, Aunt Marilyn, cousins Stephanie and Shawn, and Grandpa Hostetler all read stories for my CD as well. I really liked hearing all of their voices and listening to the stories. A lot of people have sent me books, so this is very special.
I was pretty feisty this afternoon. In fact, I pooped on a nurse when she was changing my diaper. It’s a good thing she already likes taking care of me!!!