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)

Saturday, May 22, 2010


look carefully, and you will see Oliver's stick. He kept hitting Kevin and me in the head with said stick--when he wasn't dipping it in the water, dragging it in the dirt or poking it in the leaves. What is it about kids and sticks?

Wednesday, May 12, 2010

Forgetting -- on purpose

My friend's son was born a month before Oliver. Like Oliver, Calvin had truncus. Like Oliver, he had open heart surgery to fix his broken heart. Unlike Oliver, Calvin did not make it. During the past year and a half, my friend has shared her journey through grief on her blog. In her latest post, she wrote about the balance between remembering her son and remembering her daughters, who are living; cherishing his memory while learning to focus on other things again.

Her post struck a cord. A few days ago, while snuggling with Oliver, I allowed the door of memory to open. It had only just begun to crack open, when I felt myself drowning in waves of terror. I slammed that door shut as hard and as fast as I could. At some point, I will walk through not only the figurative doors of memory, but also the literal doors of the surgical waiting room, again.

For now, Oliver has no complications. His sheer normalcy allows me to forget--and I forget with a vengence. If I remember, fear paralyzes me. And so I choose to forget the past, forget the future and focus, with fierce determination, on today.

Today, I am a mother. Today, my two children giggle and cry and play together. Today, my son asks me to juggle, spins the wheels on his trucks, tackles his sister, and feeds his baby doll.


Oliver now says "juggle," properly signs "more" and takes care of a baby doll. He's fascinated by our 6-month old friend who comes over several times a week, so I decided to strap one of big sister's baby dolls into our old infant car seat and see what happened. He walks around it, babbles at it, covers it with its blankie, feeds it its bottle, and tries to climb in with it.

Big sister and I made play dough for O yesterday. We thought he'd have fun squishing it. Nope: he was more interested in all of the other toys we put on his tray--the spoons, containers, etc...

Monday, May 10, 2010

self feeding

He's messy, but he gets the job done.