Monday, November 2, 2009

The last 4 plus weeks have been extremely busy in the Schye household. It seems we are at the doctor's office twice a week. Kellan was jaundiced pretty bad at his 4 day check up, so we spent the next 24 hours almost force-feeding him to get his bowels moving and excreteing the bilirubin. He was and still is a very sleepy baby, which I have since found out is typical for babies with Downs, would have been nice to know 4 weeks ago! I thought he just was content to sleep! He had been poked for blood some 20 times in the hospital for the genetic testing so I was determined that he was not going to have to be poked every day the rest of that week so we really kept on him, making him wake up and eat every 2-3 hours. It worked, he pooped like 7 times in the next 18 hours! His poor little heels were a mess of scabbed over slits, where they had poked for blood, not to mention his ankles, hands, & arms. Kellan had been doing well breast feeding and gaining weight for the first 2 1/2 weeks or so. On October 15 he weighed 6 lbs 8 oz. I had always thought he didn't suck as well as Tobin when he was nursing, but thought since he was gaining weight all must be well. On October 26 I thought his skin on his thighs looked loose, but then thought I was just being paranoid, but then Morgan mentioned she thought his arms looked loose too. So I took him in the next day and weighed him. He had lost 11 oz! So the pediatrician had me start pumping and fortifying breast milk for him, at which time I discovered I wasn't producing enough. Babies with Down's typically have low muscle tone, which Kellan really doesn't over all, but obviously his mouth and jaw muscles are a little lacking. She wanted him to gain 3 oz by that Friday, so again we worked hard, and he was up 4 oz, with one tired momma. He sees the doctor again tomorrow so we'll see how much more he has gained, he still seems so skinny and tiny! We also see the cardiologist this week again for another echocardiogram. He had one in the hospital when he was about 18 hours old because about 50% of babies with Down's have major cardiac defects. Thankfully Kellan didn't have any major problems, just 2 minor. One is patent ductus arteriosus, which usually closes at or shortly after birth so it may have closed after the echo. If not, then he will have to have a heart cath when he's one to plug it, as long as he doesn't have complications from it sooner. The other is another opening that probably won't be closed but is not a big deal and they just leave open. Also this week Kellan will be evaluated by Early Childhood Intervention to see if he has any immediate therapy needs (which I'm hoping we can address his low muscle tone in his mouth). This will also set us up for the next 3 years. Lastly, we have Justin's birthday! It will be a busy week again. Thankfully Justin is off all week!
We are eternally grateful to all of our family and friends who have supported us through the past 4 weeks. We wouldn't have gotten to this point without you. If anyone had told me that I'd have a baby with Down syndrome and be accepting of that fact this soon, I'd have said they were crazy! It's hard to describe the emotions we have gone through, really the grief process, but there is a short essay that really says it all. Follow this link to read it, if you wish. www.our-kids.org/Archives/Holland.html. So we are in Holland, and we love Holland just as much as we loved Italy.

2 comments:

  1. The holland story is priceless. We learned it when Dusti was diagnosed with leukemia! Prayers to you, family & especially Kellan

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  2. Welcome to the world Kellen, you adorable pumpkin! Stop by my blog, I have some posts dedicated to nursing and feeding babies with Ds :-)

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