NICU Diary Day 59

Monday, December 04, 2000

Ophthalmology Update

Today was another busy Monday in the NICU. It started with an eye exam, which Mommy was glad to miss! At least we had good news from the checkup; everything looks good for my age and development. I'll have a follow up exam again in two weeks.

Mommy asked the ophthalmologist if the dermoid cyst under my left eyelid was bigger (she and Daddy think its growing). The surgeon doesn't think it's any bigger, and he said the cyst shouldn't interfere with my vision or eye muscle. They can alter retina shape, though, so I'll be checked for astigmatism in about six months.

Insurance & Discharge Update

Mommy stopped at the hospital’s business office to submit my Medicaid application this morning. The hospital will send in all of my paperwork and then a Case Manager from the Medicaid office will call to set up an appointment. We are expecting it to take at least a month to process the application.

Eating Update

I was just settling in for a nap when speech therapy came by to have me work with the Haberman bottle. I like the bottle and tried to suck pretty hard, but I was still unable to get any formula. Speech said the most challenging problem is getting my tongue forward enough to create suction.

Mommy and Daddy are going to keep putting formula on my lips, hoping it will encourage me to stick out my tongue. Speech therapy isn't very positive about my ability to take full-feedings orally. They are recommending a g-tube for long-term feeding. Mommy and Daddy want to wait on the g-tube surgery and keep trying with the bottle for at least another two months.

Ventilator Update

I was off the ventilator today from 8:30 a.m. to 3:30 p.m. and will do another wean from 6:00 p.m. to midnight. Instead of going back on my neonatal ventilator this afternoon, the respiratory therapists brought in a vent like the one I'll use at home. It's called an LTV (laptop ventilator) because it's about the size as a laptop computer. Mommy and Daddy will be learning how to use my ventilator over the next several weeks.

Renal Update

Nephrology ordered a 24-hour urine collection. They want a baseline test for my kidney and to check on my kidney stones. Mommy felt bad about the urine collection because she was afraid I would need a catheter. Instead, the nurse glued a bag around my little boy parts. The bag collects my urine, and the nurses siphon it out through a tube. I have my own pee jug in the refrigerator! Mommy said they should’ve started collecting earlier today because I peed right through my outfit and onto her jeans while she was holding me.

NICU Living

Besides peeing on Mommy, I had a really good time while she held me. I really liked it when she bounced me on her knee. Daddy came to play with me tonight. He tried the Haberman bottle again at my 6:00 p.m. feeding, but I was pretty sleepy and didn’t suck on it too much.

Mommy and Daddy were able to get a Haberman bottle from one of the NICU nurses. Speech therapy won’t leave the bottle because they're worried we won’t use it correctly. The nurses found a bottle though so that they can work with me more than just once a day. Daddy read the directions on how to use it, so everything should be just fine!

I can’t wait for the 24-hour urine collection to be over because I hate having this plastic bag in my diaper. I suppose it’s better than the alternative though!

P.S. Today is my Daddy’s birthday. I filled up a special diaper just for him!