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)

Saturday, May 30, 2009

Friday, May 29, 2009

three baby boys

Three baby boys entered the world with broken hearts: Oliver, Matthew, and Charlie. Each heart was broken in a slightly different way. The babies had open-heart surgery within days of each other. Charile went home a week after his surgery. Oliver struggled in the hospital for two-and-a-half months, then went home. Matthew is still there. Five months after he entered the hospital, he's being evaluated for a heart transplant.

Matthew's mother has four other sons at home, over an hour away from the hospital where she has lived for the past five months, where she will stay until her baby comes home.

I talked to her today. "I'm not a little scared," she said. "I'm very, very scared."

By Monday, she will know where her son stands on the heart transplant list.

obsession

I admit, I obsess about the amount Oliver eats. I'm afraid that the doctors will come and take him away from me if he doesn't eat enough and doesn't gain the "right" amount of weight.

Yesterday, I realized where this fear comes from (and, yes, deep down I really do believe they would take him away). Before he was born and while he was in the hospital, I had doctor after doctor tell me (and Kevin) that we had no say in Oliver's treatment--or at least, no say in what they deemed the critical aspects of his treatment. They wouldn't say it in so many words, but the message remained consistent: "we are the experts, and by extension, you are a stupid parent. We will make all of the care decisions for you."

One day Kevin forced the issue. He asked what would happen if he said, "no" to one of the doctors treatment plans.

"We'd discuss it," was the reply.

"Really?" asked Kevin, "and how would that work?"

"Well, we'd listen to your concerns. And, if we deemed that your concern had some merit, we might act on it."

"So, you'd have the final say," Kevin said. "If we disagreed and you thought our objections didn't have merit, you'd ignore our wishes."

"No, we'd discuss them," said the doctor, irritated, "and then we'd treat your son the way we thought best."

Sorry for the wakeup call, my little doctor-God, but a true discussion never has a foregone conclusion. What you just described is not a discussion. It is condescension, in its worst form.

Thursday, May 28, 2009

shaking

I read about this family's run-in with medical "authorities" a few days ago and started to shake. I remember sitting in my hospital room and being told that I had no say in how my son would be treated. If I chose to stay in the hospital, the doctors would do whatever they wanted to Oliver. There were certain things I did not want done. But, I was told, I didn't have any say in the matter. The first doctor I talked to was insufferable. When I went up the food chain, the presentation got better, but the message remained the same: the doctors got to decide what to do and then Oliver and the rest of our family had to live with the consequences. I'm shaking again just thinking about their arrogance.

It ended up that Oliver had none of the treatments to which I objected, but my wishes had nothing to do with that decision. The doctors didn't deem them necessary.

Wednesday, May 20, 2009

gratitude: T

T is for time.

The years our doctors spent learning their trade.
The weeks our mothers spent in my home, while I waited in the hospital.
The 40 extra days Oliver got to marinate in my belly.
The lifetime Oliver has ahead of him.

Monday, May 18, 2009

papa days

Oliver and Papa are having a boys only party. Big sister and I left on Saturday. We will return next Sunday.

While I've been gone, papa has stopped tracking every cc Oliver drinks. I've wanted to stop. I just haven't been able to-I'm in the habit. With only one person doing all of the feeding, however, it isn't necessary to keep a written record of how much the little boy drank and when. Kevin will know if it's been 1 hour or 4 since little boy last ate.

Kevin has also challenged Oliver with more of the frozen breast milk. Apparently its not a big hit. Oliver ate 10 ccs then spit it all out and refused to drink any more until Kevin gave him straight formula. Then the little man downed nearly 120 ccs.

Friday, May 15, 2009

5 months

I decided to take Oliver in for a weight check today. He hasn't been eating as much as he was a few weeks ago (Sad that I know exactly how much he's eaten every day since the 21st of January. I even have a graph).

At five months, Oliver weighs 5.855 kg (12 # 14.4 oz ).
I measured him yesterday, and he is 62.2 cm (24.5 in) long.

I found a website that will plot a baby's weight or length on the CDC's growth charts (Just the sort of thing I love). Now, I don't have to call the nutritionist to find out if Oliver is "falling off his growth curve".

gratitude: S

video

S is for smiles and spit bubbles and squealing like a pterodactyl!

Wednesday, May 13, 2009

gratitude: R



R is for realizations

Today, while dancing Oliver down from his not-the-medicine-again indignation, I had a stunning realization. Someday, I will dance with him at his wedding, and his feet will touch the ground, and his arms will wrap all the way around me.

Sunday, May 10, 2009

baby blessing

Today, my husband held Oliver in his arms, and, in front of our congregation, blessed him. Kevin says Oliver just watched him. He didn't fuss. He just stared.

In my faith, baby blessings are typically given soon after birth. I think of them as a way of welcoming the little one into the congregation. It felt good to introduce the little lover to so many people who have held him in their hearts and in their prayers for so long, already.

Saturday, May 9, 2009

Monday, May 4, 2009

favorite expression


Yeah, yeah, I know, baby smiles are cute. But, Kevin and I LOVE Oliver's little pouty face. It gets even more adorable when he starts his little wrah-wrah cry. This is the face he makes when he's waking up and realizes that he's hungry.

milky, milky, III


Here's the final stash -- deep frozen and waiting to be donated...or fed to the little boy. We'll give him one more chance to drink it up before we ship it out to the Mother's Milk Bank in Denver, CO. For reference, the freezer is ~4.5 feet high and each container holds between 2 and 5 oz of milk. The purple squiggles hide the hospital ID tags I put on each container.

Sunday, May 3, 2009

Movie

On Friday, my husband and I watched Seven Pounds. The female lead has a congenital heart defect and is in congestive heart failure, or as they say in the movie "congenital heart failure." I'm not sure whether or not I liked it. It was a bit intense to watch this depiction of a woman waiting for a new heart...especially as one of the babies who had open-heart surgery at the same time as Oliver is still in the hospital. Some time this week, his family will learn if he is a candidate for the second stage of his heart repair or if he will need a new heart of his own.

People have commented to me on how miraculous it is that doctors can repair or even replace hearts. I'm awed by the process and admire the doctor's skill and knowledge, skill acquired over decades and knowledge compiled over lifetimes. Yet, I balk at the word miracle. Miracles to me connote light and joy, not knives and blood and pain.

Saturday, May 2, 2009

second opinion


Big sister decided Oliver needed his second surgery a bit earlier than we anticipated.

Friday, May 1, 2009

start from where I am

I can't remember the context, but a few days ago, I had an epiphany. It took a few days before I realized I'd said something profoundly important.

Let me provide some background. I'm an internally motivated person. I do things for me, not for other people. For example, I wanted to be on the high school swim team. So, for a few months before the season started, I practiced, by myself, at the Y. After the season started, I practiced with the team. I swam my fastest times at the beginning of the season. I had practiced best by myself.

As I consider what I want, I frequently make lists, form goals, and chart my progress using spreadsheets. So, I have no problem with knowing where I want to go.

The problem comes in bridging the gap between where I want to go and where I am.

For example, when Oliver was in the hospital, I wanted him to come home. I started most days with the hope that that day he'd make progress towards going home. Those days, I returned to the Ronald McDonald House frustrated. The distance between home and where he was usually seemed so vast. However, some days, I concentrated on the progress he'd made from the day or the week before. Those days, I did not become so frustrated. I could see that he had improved.
I was starting from where he was.

I need to do that again.
*On days when Oliver doesn't eat well, I need to remember how much more he's eating now than when we brought him home, instead of focusing on how much less he's eaten than I wanted him to.
*On days when I get frustrated that I can't run as far as I want, I need to remember that only four months ago, I needed a wheelchair to cover a mile.
*On days when I loose my temper with my children, I need to remember that I've never done this before, and neither have they.
*On days when Oliver's care and future medical needs overwhelm me, I need to focus on the fact that he is home, now.

I need to know where I'm going, yes. But, more importantly, I need to start from where I am.