NICU Diary Day 88

Tuesday, January 02, 2001


Today was one of the best days Mommy's had in the NICU for quite a long time. I was awake the entire time she was there, and we played and walked around. I was unplugged the entire time, so she didn’t have to worry about alarms going off because of something coming unplugged. Plus, I was very mobile and loved all the action.

Mommy and I visited with another Mom in the NICU who has a little boy, Stephan. He had trach surgery last week. Mommy talked to her about it and how it's scary to learn everything at first but you get comfortable after a while. Stephan's Mommy said that made her feel better, and we were glad to be helpful. Stephan and I had a great time staring at each other!


Before Mommy came to visit, Wendy was carrying me all over the place with one arm and working with her other one. I'm very smart and know that when Wendy and Mommy are around, I can get someone to hold me! I love to hear both of them talk, and boy does my Mommy talk when she is there with Wendy. Poor Wendy has to listen to all of Mommy’s rants about the insurance company and home care issues plus deal with her many requests to talk with doctors. Daddy likes this because then he doesn’t have to listen to all of it.


My Attending neonatologist for January is very nice and a real fighter when it comes to dealing with insurance companies about home care. Mommy thinks she is the perfect doctor to have this month. The doctor plans to speak with our insurance company tomorrow to discuss my continued stay. Mommy gave her a copy of the letter that we sent to the insurance company last week.


The new Attending advocates for patients by calling state representatives, legislators, and even the media. She doesn't hold back on bringing attention to home care issues for babies who are stranded in the NICU. This gives us some much needed hope!


Nephrology Update

Mommy came in today with a new list of specialists she wants to follow up with. We checked one off the list today when the nephrologist stopped by. I've had borderline high blood pressure, and Mommy is wondering if I should have my blood pressure monitored at home.


Nephrology doesn't want to medicate me yet. They plan to monitor my kidney stones with ultrasounds and maybe do a chest X-ray to see if the high blood pressure is affecting my heart. They don't think it will turn into a big issue, and they know we all have a lot to deal with once I'm home. It's not critical to add a blood pressure machine and more medication to the mix at this time. Mommy liked that approach!


Ventilator Update

I'm doing a trial tonight to see if I can make it without the ventilator. My team is struggling with weaning me off the vent completely because that creates a new set of issues with our insurance company. I'm very fussy when I go on the vent though, so we have to move forward and try. My care and progress needs to take priority over insurance battles. Mommy is sick to death of playing games with the stupid insurance company and government programs.

Daddy came to see me late this afternoon and we had a lot of fund together. I only took a light cat nap earlier but was still wide awake when he came to visit. Mommy had music on and was dancing with me when Daddy got there. I love music and am happiest when I’m being bounced around.

Mommy and Daddy gave me a bath and weighed me tonight. I haven’t gained much weight lately but am still hanging in at around 6 pounds 4 ounces. My g-tube site was a little red but my trach site looks good. After Mommy left, Daddy settled me down for the evening and started a lullaby CD. They both gave me kisses and wished me luck on my vent free night. They know the night nurse, Joan, will take good care of me!


My bunkmate, Adam, graduated to Room 4 yesterday. Wendy said that it was getting too difficult for one nurse to take care of the two of us together. We're very demanding little boys because we're getting older and more active. I'm happy for Adam’s graduation but will miss getting into trouble with him! I sure hope that we both get to go home soon.


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