Just a simple family's experience with the possibility of a child with Trisomy 18

Friday, June 1, 2012

2 1/2 Weeks Old


     Updates? We scheduled the big radioactive dye kidney test for mid July--there's a chance it will resolve itself by then, so here's hoping.
     We keep running into problems with the massive chromosome test (multi array). One minute they say they don't have enough blood, the next they say it's fine. Now they say they don't have enough again. Honestly, we don't know if we'll keep trying. We felt good about doing it originally, but don't feel it is as necessary anymore. Don't get me wrong, we'd still love to rule out other chromosome issues, but it's not as high a priority right now. We'll see how we feel after the weekend.
     So, how's he doing? Well, he's eating, pooping and sleeping. Oh, and peeing. (Can't forget that) He still sleeps a little too much, and it's hard to get him to eat enough since he falls asleep as soon as he starts eating, but we're feeling more comfortable with how he's responding and stuff. Though he still struggles to breathe some times. It's almost like an asthma kind of wheeze, but if he calms down and doesn't stress about it, he does better. (ever try to get an infant to relax and not stress about the fact that they feel like they can't breathe?)
     Mom is an amazing trooper. Some nights she has to wake him up to feed him, other nights he's up every 1 1/2 to 2 hours to eat. I am constantly in awe at the sacrifices she makes to keep our baby healthy. Somehow she keeps on going. I get four times as much sleep, and I still feel like a zombie some times.
     Many thanks to everyone for your prayers and concerns. What an amazing outpouring of love we've felt. Love you all.