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NICU Diary Day 53

Tuesday, November 28, 2000

Another busy day in the NICU! My temper was much better when Mommy showed up this morning, and I was sleeping like a little angel until the orthotics group showed up to measure me for a cervical collar. Oh boy is that ever going to be an impossible design! One of the techs asked Mommy if they could take off my trach ties to measure. I guess he didn’t realize that I kind of need those ties to hold my trach in place!

C-Spine Update

The chief of orthopedics looked at my x-rays last night and was very positive about how much I've grown. He thinks that everything looks good and that my C1 and C2 will ossify on their own. He wants to leave me in my ortho board for another two weeks and then take me to have another scan where they'll watch my neck move back and forth under x-ray. If everything looks good, I might not need the brace anymore.

Wouldn’t it be great if I could go home without any c-spine restrictions?! The surgeon said I have fusions in my lower vertebrae, which could restrict movement as I grow. He doesn't think it's anything that will need surgery though.

Mommy asked the orthopedic surgeon to look at my left thumb. Forearm and thumb anomalies are related to Goldenhar Syndrome, and Mommy and Daddy have noticed that my left thumb is definitely different from the right. It looks to be functional, but a hand surgeon will be stopping by to check it out. Oh boy, another new doctor!

Physical Therapy

After the orthotics guys left, physical therapy came to give me a workout. Mommy helped the therapist stretch and massage my arms and legs. I was wide awake after PT while Mommy held me. The physical therapoist hadn’t seen me so alert before. She walked around to see how well I followed her. I did a pretty good job tracking her with my eyes and that made Mommy both relieved and proud!


After the PT session, Grandma and Grandpa Dankelson came to visit for the day. Grandma held me for a little while, but Grandpa decided to wait until I’m cleared off the brace. He really wants to hold me and is hoping I'm out of the ortho board next time they visit.

Grandma and Grandpa brought me my first Christmas ornament. It's a snowman that says “Merry Christmas Peter” on it. They also brought some cashews for Mommy and Daddy. Mommy plans to hide them from Daddy because he loves cashews.

Speech Therapy

Speech therapy came by to try the bottle this afternoon. Of course, I was sleeping and wouldn’t wake up to show off for her. I have a long way to go before I'll be able to take in enough nutrition from a bottle. My suck is very weak and the cleft palate, small jaw, and trach all make eating difficult. Mommy and Daddy are hoping I'll eventually take a bottle. If I still can’t take full bottle feedings after 2-3 months, I'll need to have surgery for a g-tube that stays in my stomach.

Discharge Planning

Hospital politics are at their peak this week! One of my primary nurses got into trouble yesterday with some of the doctors. They think that she does not speak “favorably” about them to Mommy and Daddy. The doctors think we don’t trust them because my ventilator strategy keeps changing.

It seems there are quite a few differences of opinion between the nurses, respiratory therapists, and NICU doctors. That's why they're meeting on Thursday to map out a game plan for discharge. I’m going to be the subject of conversation, and I don’t even get to be there!

I had my first “Enfamil Preemie” formula today because Mommy’s milk supply ended. I seem to like it OK so far. Daddy visited earlier than usual today and stayed this evening to “guy talk” with me. He was out of town, and we missed each other yesterday. Mommy and I are really glad that Daddy is back!


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