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)

Monday, August 30, 2010


Oliver likes rice. I didn't know until tonight when he said, "rice" and then began shoveling it (not very effectively) with his baby spork into his mouth. Cool. And, today, he didn't want a bottle until noon--by that I mean that I offered him a bottle and he refused it. Which means he had a grand total of only 3 bottles today: before nap, after dinner and before bed. SCORE! On top of all that, he was asking for food items. It turns out he likes goldfish crackers, but he likes Cheez Its more. He likes Nutella and chocolate milk and pepper jack cheese...although he has a word for "spicy." When he gets a bit of cheese thats a bit too hot, he'll squinch up his face say his "spicy" word and ask for his chocolate milk. He's so cute.

Tuesday, August 17, 2010

Sunday, August 1, 2010

building stress

I guess Oliver's last cardiology appointment bothered me more than I thought. I was not prepared for Oliver's valve to have shifted another category over yet. The four part scale (trivial-mild-moderate-severe) used to measure various aspects of his heart function seemed like our friend when we first brought Oliver home from the hospital: He was on the lower half of the scale for so long. Now he's not.

I run. For fun and to stay sane. I run mostly on trails. I have to pay attention to where I am putting my feet and get to watch beautiful Wisconsin wildlife as I go. Two days ago, It was raining, so instead of running, I swam: back and forth, back and forth, counting laps, carrying on an argument in my head with the doctor who performed Oliver's next surgery, who let my son die*. My heart started racing. My breath got all tangled up in my throat. I pulled up short, held my latex cap, and focused on the inside of my goggles. "Pull it together quick," I thought, "before the lifeguard thinks there is something wrong with you."

I think the next time it is raining, I will run anyway.

*Maybe you don't carry on conversations in your head with people who aren't there about situations that have not happened--I do it frequently. My husband thinks it pretty funny. When I really get into the conversation, I even start throwing my hands around to emphasize my point.


Just yesterday, Oliver came out with a new word: backpack. Today, he spewed out three more at breakfast: waffle (wah-wah), melon (me-uh), and meat (me). He's also very interested in letters. A few weeks ago we went to a playground with a tic tac toe board. He loved turning the drums to see the X's and O's. Later that day, we went in the basement and he started shouting (ets, ets, ets). "What are you talking about, Oliver? Show me?" I asked. And so he walked over and touched the X on a packing box we have stored against a wall. He's also very interested in O (o-uh), H, A, M, N, and S. I don't remember my daughter getting this excited about letters. Hunh.
He's also signing more: shoes, bicycle, popcorn, fish (including a cute, fishy sound), music, airplane, and juice.