NICU Diary Day 58

Sunday, December 03, 2000


I was awake again today while Mommy and Daddy were visiting. They held and played with me for quite a while. Our nurses say I've developed “arms disease” because I get fussy when Mommy and Daddy aren’t there to hold me. I'm doing really well with my pacifier and have even started making sucking noises. I still need to be stronger before I can get formula from the bottle though.


The doctors decided to add an extra hour to each of my vent weans today, so I'll hopefully do two seven hour weans. Mommy and Daddy think that I have been doing really well. My heart rate is much lower and my blood pressure has come down too. I also seem to be taking deeper breaths, and I’m continuing to gain weight. Tonight I weighed 5 pounds 12 ounces.


Mommy and Daddy gave me my bath tonight, and Daddy got to change his first explosive diaper (Mommy changed one on Friday). I had so much poop in my pants that it exploded up my back and was all over my clothes. Daddy was amazed that someone as little as me could generate so much poop! Mommy knew better because she witnessed it on Friday.

After the bath, Mommy and Daddy did all of my trach care. They do much better working together as a team, except they did get my ties a little too tight and my face turned bright red in protest as I flew my fists in the air. Thankfully they loosened up!


I was being a little stinker tonight before Mommy and Daddy left. I was really sleepy but kept fighting it because I knew that as soon as I closed my eyes for a while they would be gone. It is getting much harder for Mommy and Daddy to leave me at the hospital because we have so much fun together when they visit.


At least we got some encouraging news regarding home nursing care. Mommy spoke with an attorney who's reviewing Daddy’s insurance policy, and she seemed hopeful that there's a way to get nursing so I can be discharged. This attorney works for the state of Michigan as a parent/child advocate attorney and helps about 1,000 families every year. There's no charge for her services, and we are extremely grateful for her expertise.


I better get some sleep because we have another very busy week ahead!

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