life and times of a family with a little man with designer genes
A Little Something Extra
Friday, February 15, 2008
Happy Valentine's Day
Here's our little guy in his adorable outfit (thanks, Mar). I forgot to take a picture of his back. There are little angel wings on the back of the shirt. The second photo is of the bottom of his feet. So cute.
We had a Care Conference yesterday. It was organized by the social worker, and participants included the neonatologist, cardiologist, cardiology nurse practitioner, physical therapist, genetic counselor, discharge manager, and a nurse. This was scheduled a few days ago, prior to Micah's setbacks of the past couple of days. He didn't eat very well on Tuesday. And when I arrived on Wednesday morning, I felt like I was bombarded by the speech therapist (ST) and Micah's nurse. The ST seemed pretty upset that we had stopped using the nasal cannula for his feedings (to give him an extra dose of oxygen). One of Micah's nurses and I made that call on Saturday because he had been doing better (no desats while eating) and he seemed to dislike the nasal cannula so much (wouldn't you?).
Anyway... the ST and his nurse informed me that they were now supplementing his breastmilk with formula and that he wasn't to take any more feedings without oxygen because he wasn't eating well at all. He didn't perk up during the day. And yesterday morning he was not himself. He's usually pretty self-soothing but he was very fussy most of the day. And he didn't take anything from the bottle. He seemed like he had a belly ache. They ran a CBC and there are no indications that he has a virus or an infection. I've asked the doctors to consider whether the bellyache relates to the formula fortification or possibly reflux.
His cardiologist stopped by to see him around lunchtime. She thinks that his heart is working harder and that is the cause of his lethargy. She started him on two medications (low dose to start), with the option to add a third. She's a cut-to-the-chase sort of person. If Micah doesn't show significant improvement over the next week, then it's likely that we'll have to go back to Milwaukee for 3 days for him to get a G-tube (a tube inserted into his belly and it doesn't go through his nose; rather, it comes out his belly). It's a surgical procedure and due to his heart defect, he needs an anesthesiologist who specializes in pediatric cardiology.
A G-tube is something we had really hoped to avoid. But it's much more important that we get him home. As I said to the attendees in the meeting, he needs to be a baby. He needs to come home and see things other than the mobile over his crib. He needs to be able to use some of his energy to play, not just eat. Right now, we're not doing much interacting with him... we're trying to give him a break so that he can use his energy to eat. That's just not good for his overall development.
So, it sounds like we'll either be home in two weeks or on our way back to Milwaukee for a G-tube.
Welcome to our family blog. We have three boys: Nathan (7), Micah (4), and Matthew (3). Nathan is our energetic, sports fanatic first-born. Micah is our charming little guy, who happens to have an extra 21st chromosome (aka Down syndrome) and multiple associated health issues. Matthew is our big-boy-wanna-be. I started this blog the day after we found out that Micah has designer genes (Trisomy 21, aka Down syndrome). We've been through a lot of ups and downs (and a lot of time in the hospital), but God is faithful and continues to show His love toward us.