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, September 20, 2010

semi-annual developmental check

Grandma and I drove little guy to his developmental assessment in Milwaukee today. Thank goodness for grandma--it helps to have a little moral (not to mention logistical) support.

Oliver was a superstar.

He weighs 23 # 7 oz (12%ile)
He measures 33" (50%ile)
and has a head circumference in the 65th %ile.

He had a lot of fun playing with the physical, occupational and speech therapists--and they enjoyed him as well.

He has:
the cognitive skills of a 25 month old
the fine motor skills of a 28 month old
the gross motor skills of a 20 month old
the receptive language (understanding) skills of a 24 month old, and
the expressive language (talking) skills of a 25 month old.

Which all means, that at 20 months from his due date (21 months from his birth date) he is finally catching up to where he should be...given the rest of the family.

Thursday, September 9, 2010


Today, on our way to the zoo, Oliver got really excited about some construction on the side of the road. So, we parked in a nearby lot and watched the bu-dee (bulldozers), dup-duk (dump trucks) and di-i-i (diggers) for 1/2 and hour before heading into a nearby toy store to replace his toy bulldozer, which has been missing its scoop for a few weeks now. We never made it to the zoo. Oliver fell asleep drinking his naptime bottle on the way home.

banner week

In addition to the corn and chili, Oliver has been loving on my delicious jah-par (John-Poppy Rolls), yogurt in a squeeze tube, oatmeal, chips, string cheese, hot dogs (he ate 3/4 of one at one holiday BBQ), and anything else he can physically feed himself. I think we won't have to worry about that goal of him getting 50% of his calories from real food by his 2nd birthday. If he keeps going at this rate, he'll be getting all of his calories from real food.

I think it really helps that I have been giving him his own plate, fork, spoon, bowl, food, etc.... to use himself. It makes a much bigger mess, but he's happier.