A Broken Heart

35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Wednesday, December 30, 2009

favorite new toy

He grabbed it while I was making dinner and hasn't let go since.

Saturday, December 26, 2009

Sunday, December 20, 2009

the sleep of the just

Poor little O got the stomach flu on Friday--he was a happy little puker. Then, yesterday, it took a turn south. We've already bleached at least five outfits and his sheets once already.

Monday, December 14, 2009

birthday party


We celebrated Oliver's birthday over the weekend. Like most one-year-olds he was interested in the boxes and the paper and being his own stubborn self, he refused to let the cake anywhere near his face, however. He just poked it, and squished it, and hit it and threw it on the floor. Classic!

semi-annual cardiology appointment

Yup, we graduated to biannual checkups! Oliver looks and sounds great from the outside and looks about the same on the inside, according to his cardiologist. One of his ventricles did grow a bit faster than the rest of his heart since his last checkup, but Oliver's doctor guessed it was because Oliver has outgrown his medication and there is more backflow across his truncal/aortic valve-> putting more pressure on said ventricle. So, we doubled his enalapril dose: to a paltry 0.4 ml(mg) twice a day. But, in the best news of the day, the, in my opinion, very conservative cardiologist said we could "keep bragging about him" and that Oliver should get "many years" out of his homograft before needing his next surgery. What a change from a our first visit, when he said we might need surgery within months...and many kids do. Oliver's body has just tolerated his replacement part very well.

In other news:
weight: 18 and 13 (8.54 kg)
length: 28.6" (72.6 cm)
head circumference: 47.3 cm
bp: 97/63
hr: 119

Friday, December 11, 2009

holding hands

Today, Oliver took my hand, well, my finger, and started walking. He led me to his favorite d-o-ing-Y doorstop, looked at it, turned around, led me to his sister's bed, looked at it, turned around, led me to his blankie, looked at it, turned around. He kept up a constant stream of gurgles, raspberries and coos and never once did he let go or sit down or attempt to play with his favorite things. He just wanted to show me the things that he liked.

Monday, December 7, 2009

what is this stuff, mom?

Oliver loved digging in the snow for all of 5 minutes....until he realized he could pull his mittens (sock) off. I caught him the first time and stuck his hand back inside, but he just yanked it off again, plunged his hand into the snow and then started crying big, sad tears. That snow is COLD!