NICU Diary Day 12

Wednesday, October 18, 2000

Input & Output Status

Today was pretty busy. This morning they changed my milk intake from 3 cc continuously to 4 cc every three hours because I wasn’t digesting it fast enough and the docs were a little concerned that I didn’t poop at all yesterday. I showed them though! I went crazy this afternoon and dirtied my diaper three times. I didn’t hold back one bit! Mommy changed my diaper every time. She had a pretty hard time changing the last one because it was really messy. It’s really hard to lift my bottom up in my ortho board, switch the diapers, and clean me up.

Spine & Vertebrae Update

I like my new body brace that the ortho docs got for me. Its pretty comfortable but they kind of forgot to allow a little room on the sides for my ears. My right ear gets a little scrunched up. I also get a little sweaty in it because it doesn’t really breath too much. The orthopedic specialists came by this evening to see how I was doing in it. Daddy talked to them because Mommy had just left to go home.

The chief of the orthopedic department told Daddy that he thinks everything looks really good and straight with my vertebrae. We just have to wait and see if it will be stable enough to support my head. I have too much cartilage to tell if everything will fuse together properly. The doctors should have a good idea about the stability of my spine and vertebrae by mid December, which is when I would be a full-term baby. They have dealt with full-term babies and have some “experience” to help make a better decision about me. In the meantime, they are going to make some adjustments for air holes and room for my ear.

Ventilator Update

The neonatalogists are really getting aggressive about weaning me off the ventilator. They changed me to a new mode on the vent that makes me work harder to inflate my lungs. They also lowered my breaths per minute from 40 down to 30. I am no longer getting any oxygen from the machine either. If all goes well with my breathing, I might be off the ventilator completely within the next 5-7 days.

Bonding from a Warming Bed

All of this work to breathe on my own is making me a lot more active, which is what the doctors and Mommy and Daddy were hoping for. I opened my eyes ever so slightly several times today for Mommy. After she left this evening, I opened both of them for about 15 minutes just for Daddy. We had a little father-to-son eye contact for the first time! I also let out a little gas when it was just the two of us—he was really proud of me!

Genetics Conversation

Mommy talked to my geneticist this afternoon. He comes to check on me almost every day. He is very interesting to talk to and explained to Mommy how they are doing chromosome and genetic testing on me. The results of the testing probably won’t be back for 3-4 weeks. He said that scientists have only recently mapped out all human genes and they still don’t know what each gene is or does. The geneticist described it as having a dictionary in a foreign language; everything has a name but you don’t know what it means. He did help Mommy feel better by reassuring her that she didn’t do anything to cause my birth defects when she was pregnant.

Trach Care

Late this afternoon my ENT surgeon and airway nurse came to change my trach and take out my stitches. The new custom trach finally came in today, so now I have all my customized equipment. Changing the trach was a big ordeal because they had to lift me up out of my ortho board to get the ties around my neck. When they lifted me up, I made a few little squeaky noises. Mom and Dad thought it was pretty cool to actually hear me make sound. The ENT said the tracheotomy site looked like it was healing well. Can you believe my trach surgery was a whole entire week ago?

Daddy helped the nurse suction me tonight. He gave me oxygen with the ventilator bag and the nurse suctioned. He did a really good job, and I was back to breathing without the oxygen in no time at all.

Presents!

I got more presents today! I got an angel beanie bear, a pull-string musical toy, and an inchworm from The Hatton family. I also got a set of rattles from one of Daddy’s customers. I can’t wait to come home so that I can wear all my new outfits and play with all of my new toys.