A Broken Heart

Incidence:
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)
Treatment:
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)
Mortality:
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 24, 2009

passe

"Sitting up is so yesterday," says Oliver. Now when we go to get him after a nap, we frequently find him standing up and yawlping. He's also mastered the art of crawling: no more one-leg-drag-and-scoot. He now just puts his head down and goes.

Thursday, August 20, 2009

wild man

video

The kids and I visited the clinics at the Children's hospital today. No, Oliver didn't have any appointments. We were just taking some birthday brownies to a friend. Oliver had a BLAST. I think everyone in a two-mile radius could tell how much he enjoyed our wait. He shrieked while standing, he shrieked at the other kids in the waiting room, he just shrieked and shrieked and shrieked. He's now sleeping.

Tuesday, August 18, 2009

two teeth and two feet


This is Oliver's frequent expression, particularly around big sister. Notice, in his hand he has our phone. It turns out that Oliver can crawl, he just hadn't had the proper motivation before. Today, he crawled six inches to get the phone (its all those buttons, I tell you). Later tonight, he crawled into the bathroom when papa turned on the faucet. He covered over two feet in his pursuit of some nak d splashing time.

tuesday night boogie

video

Monday, August 17, 2009

physical therapy

Papa took Oliver to his second (and, it turns out, final) physical therapy appointment today. Between the time we visited Milwaukee for Oliver's developmental check up and Oliver's visits to the local therapists (the first was last Monday), his torticollis resolved on its own. Now, he uses both hands together, doesn't prefer his right side and no longer tilts his head to the left. [Keep in mind that his preferences were never severe]

Next up: crawling, and he's finally started working on it. He actually made some successful attempts at my aunt's house on Saturday.

"What's in a name?"

asked Shakespeare's Juliet. "That which we call a rose/ By any other name would smell as sweet."

A few days ago, my brother made an off-hand comment about the little lover's name, and I started thinking.
I remembered the Olivers I thought of before we named him: Oliver "Daddy" Warbucks and Oliver Twist.
I thought about why I liked the name: it sounds like "our little lover," if you say it really fast.
I thought about why Kevin liked the name: It gave Oliver the initials "O.K." and turned our family acronym into one big (J.O.K.E.)
Once, in the hospital, Kevin joked that if I wrote a book about our experience, I would have to title a chapter "The Boy Who Lived" as a tribute to Harry Potter.
It struck me, after my brother's comment, that the name Oliver also contains life, right in the middle: O-live-r. And, he did.

I love you, my little man.

green beans

Sunday, August 16, 2009

little hearts in the news

I stole this link from my friend, Nancy's blog. It's an article about heart surgery in young children.

Thursday, August 13, 2009

swing

video

A few more pushes and he fell fast asleep

tomatoes

Tuesday, August 11, 2009

Heart Valves

I ran across this article in the library a few days after I read that Oliver's final roommate's big brother will need heart surgery this year. Inserting a new valve via stent will not be possible for our boys yet, but maybe someday.... Anything to minimize the scope of their surgeries.

Monday, August 10, 2009

Friday, August 7, 2009

cranio-facial specialist


Yesterday, Oliver was seen at the cranio-facial clinic in our hometown. I was assured that his flat spot is minimal, is not due to his skull bones fusing together early, and, most likely, will self correct in the next few months. Oliver and big sister both seemed to like riding in the hospital wagon. We made a day of it and ate at the hospital cafe, complete with soda and frozen yogurt for big sister and a few bites of egg salad sandwich for little brother.

Thursday, August 6, 2009

little buddy

passed away at 4:20 today.

a little math

I just looked back at our medical records and learned these tidbits:

Oliver's delivery cost $5,000
My ambulance ride cost $1700
Each of my 3 local pre-natal imaging visits cost between $1500 &$2000
Our orientation and testing at Milwaukee ran closer to $4000
My stay at the local hospital: $14,200

That's an even $30,000

Of course, these are all the amounts charged by the hospital. Our insurance paid considerably less.

Wednesday, August 5, 2009

little buddy

Oliver's little buddy isn't doing so well. He had only a short reprieve after his "miraculous" recovery. His family is still waiting with him for his new heart.

Saturday, August 1, 2009

adventures in eating


click on the image to see the end result of one Joe-Joe and one piece of fruit leather. He sucked and nibbled and chomped happily until he fell asleep.