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NICU Diary - Day 7

Friday, October 13, 2000

Today I met my Great Grandma and Grandpa Winters. They came from Indiana with Grandma Brockhaus. They were all trying to get me to open my eyes, but it was too much work. I did give them the slightest little wink—just a little tease!

My Great Grandparents brought me a cute little teddy bear. I have a lot of little guardian stuffed animals watching over me in my bed. Grandma Brockhaus brought me another preemie outfit and some socks that will eventually be a good fit. Boy am I going to be well dressed when I get out of this place. Right now I’m either naked or sporting the diaper only look.

I was taken off the sun tanning lights this afternoon, and my CO2 levels are looking better. They should improve quite a bit next week when I get my custom trach. The orthopedic surgeon came this morning to create a mold for my special board. It was quite a big ordeal. They lifted me up and then placed a huge pillow underneath me. The pillow deflated around my body to create a mold of my head, neck, and back. After they had me molded on the pillow, the doctors took several X-rays to make sure that my neck was in the correct alignment.

The ortho doctors should have my special board ready for me to wear by Sunday. The board will be great. The nurses will be able to roll me from side-to-side without worrying about my neck getting out of alignment. That will help get some of the pressure off the back of my head. They rolled me over on my side tonight and Mommy and Daddy could see how flat my head is getting from being in the same place for so many days.

I will probably be on my special board for the next 3-4 months; I may even go home from the hospital in it. I have to grow more before the ortho and neuro doctors can determine if my spine and vertebrae are going to be OK. It is difficult for them to tell right now because a lot of my bone hasn’t developed yet due to my preemie status. Right now I have a lot of cartilage.

Mommy and Daddy had their first “trach training” class this afternoon. They have a doll (his name is Taylor) to practice on this weekend. They learned about suctioning my trach, keeping it clean, and clearing mucous plugs. They are going to have to find a lot of storage space in our house to keep all of my supplies. I sure hope they practice a lot on Taylor this weekend because next week they are going to start helping the nurses take care of me!

Hopefully, I will start being weaned off the ventilator after my custom trach arrives. We aren’t sure yet how long I will have the trach. My jaw has to grow enough for my tongue to lie down so that my airway isn’t blocked. It will probably take a couple of years for my jaw to grow that much.

There was some good news today; we won’t have to find a new home for Divot. He can stay and be my buddy when I get to come home. The airway nurse said she knows several kids with trachs that have pets at home.

The geneticist stopped by late this afternoon. He talked to Daddy most of the time because Mommy was out pumping some milk for me. He said that they will be doing a lot of detailed chromosome and genetics analysis on me, more detailed than the amniocentesis that Mommy had while she was pregnant. The analysis may be able to help us understand how my Syndrome started, which may help answer why it occurred. There is a good chance, however, that those questions will never be fully understood.

Most of my specialists think that I will be tube fed until my cleft palate is fixed around 12 months. Mommy and Daddy aren’t sure if the tube will go through my nose or be surgically placed in my stomach. They will be meeting with occupational & speech therapists next week to learn more about my feeding and speech therapy. They will probably be learning about my hearing aid as well.

I still didn’t poop today. My favorite nurse gave me a little suppository this afternoon that should help move things along. Mommy and Daddy are hoping that I will poop and open my eyes tomorrow. Those would be big milestones for me!

Michigan is playing Indiana at home this weekend. Daddy hasn’t converted enough to root for Michigan yet (He's an Ohio Guy), but he is definitely softening since everyone is taking such good care of me!


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