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)

Wednesday, April 29, 2009

Monday, April 27, 2009

cardiology appointment, the fourth

Kevin took the little lover in for his workup today. He decided it was too stressful for all four of us to go. I must admit, two-and-a-half hours worth of appointments for Oliver did tax Evelyn's patience last time.

On with the update:

weight: 5.65 kg (12#7oz)
length: 61.5 cm
cardiac status: unchanged from the last visit
medications: unchanged from the last visit
next appointment: mid July...yup,that's right, Oliver gets a two-and-a-half month reprieve!!!!

Furthermore, Dr. W said we don't need to worry about germs and infections anymore as Oliver is so healthy. It will take some mental adjustment to get used to having a "healthy" baby. The doctor also said Oliver is good to travel. Before anyone gets their hopes up, let me warn you. Oliver may be good to travel, but I'm not sure Kevin and I feel up to flying with a four-year-old and a four-month-old. Baby steps, baby steps.

Oliver's prison


Big sister made this "prison" for little brother. She seems to enjoy playing with him in more and more interactive ways (read: moving him around, clapping his hands, making him tents, giving him enthusiastic hugs).

gratitude: Q

Q is for quiet moments with the people I love.

A few years ago, I realized that I much prefer one-on-one time to large gatherings. During the past few weeks, I've realized how much I value the undivided attention of my loved ones: my son, my daughter, my husband, other family and friends.

Friday, April 24, 2009

Wednesday, April 22, 2009

on track

A few weeks ago, a physical therapist and a child-development specialist from the Birth to Three program came to our home to evaluate Oliver. They came back last week. The verdict: Oliver does not qualify for their services. He's on track developmentally.

Tuesday, April 21, 2009

to watch

"To watch your critically ill son sleep fitfully in his hospital bed is nearly unbearable. But you do it, because not to watch is even worse." -Dana Jennings

Monday, April 20, 2009

four months old

I measured Oliver today. He's 60 cm long....that translates to ~23.5 inches....or as long as big sister was at two months. But, he's finally starting to plump up! Look at that round head.

I've become THAT mother

Today, Evelyn went to an indoor soccer class with our neighbor. I took Oliver along. While we watched big sister run around, a small one with obvious signs on an upper respiratory infection toddled over and grabbed Oliver's bottle by the nipple. "No," I said sternly with an inward cringe. As I took the bottle away, the little one reached for the toys hanging on Oliver's car seat. "No," I said again. "Do not touch."


...and then I whipped out the antibiotic hand sanitizer in my purse and wiped down the nipple and toys...

...all in full view of every other parent there.

Saturday, April 18, 2009

a boy

Before my twenty-week ultrasound, I really didn't want a boy. Really. Really. Really. I wanted my daughter to have a sister. We had all of the little girl things already. I wanted to raise another strong, assertive woman.

We learned Oliver's gender before the technician stared too long at his heart, before I realized something was wrong. When she said he was a boy, I turned to Kevin and said, "Oh well," or something like that. I must admit, I felt disappointed. Then, the technician took 30 minutes to try to see something, she never explained quite what. She kept poking me and calling Oliver a stubborn little boy for not turning over so she could see whatever it was that she was looking for. She poked me hard...really hard. Finally, Evelyn and Kevin had to leave. A four-year-old can only stand so much inactivity.

By the time the doctor came in, I knew something was wrong. When he gave his vague initial diagnosis, I must admit I felt a tiny sense of relief. I suddenly didn't mind that I was having a boy. The guilt of my disappointment lifted as my disappointment at his gender vanished.

From that moment, I never again wished he was other than who he is. He is my little man and he is perfect.

Tuesday, April 14, 2009

replacement part

Today, Oliver's home health nurse looked up his conduit size. During surgery, Oliver's doctor placed a 14 mm RV to PA homograft conduit. I know he debated between a 12 and 14 mm conduit. What this means, I don't know--I've got lots of guesses, though.

Little man:

-loves to talk to big sister.
-rolled over (from front to back) for the first time on 4/12.
-just finished oral antibiotics and antibiotic eyedrops for congestion and pink eye.
-weighs 11# 14 oz. (even though he lost weight last week when he was sick).
-does not like the wind in his face: he flinches and blows bubbles
video

Saturday, April 11, 2009

Happy Easter

what to do with a fussy baby

video

"I'm a boogie man.
With a boogie plan.
I like to dance!
Dance!"

Thursday, April 9, 2009

the truth will out

Monday night, while rocking Oliver, I watched House (a medical drama). As the plot unfolded, I started crying. I didn't stop until Wednesday. Kevin missed work and classes to take care of the kids. I just kept crying.

The odd thing was, I didn't feel guilty about crying or weak. It felt, somehow, necessary.

I tried to stop. I took a shower--and howled. I took a nap. When I got up, I took Oliver back from Kevin--and started sobbing. After vacuuming, I sat down to read Evelyn a book--and my eyes started watering.

I'd like to blame it on the decongestant and pain medications I'm taking. I'd like to say it was a fluke. But, I think I actually felt that sad and bewildered and overwhelmed. The video I watched on Saturday hurt me (see previous post). The TV show triggered that hurt and the hurt of the past few months to come gushing out. I let them do that to my baby.

Saturday, April 4, 2009

black boxes

Today, I attended a family education day at the Herma Heart Center. The presentations on family stress, exercise, and nutrition renewed my commitment to view Oliver as a baby first, to expect as much from him as I do from my daughter. His condition need not circumscribe his existence.

The presentation titled: "Behind Closed Doors," nearly shattered my resolution. The presenters gave a virtual tour of the operating room. It included still shots of babies during surgery-I'll spare you the details. Then, at the end of the presentation, they showed a four-minute video of open-heart surgery to repair a ventral-septal defect (VSD)...on a baby. I thought about leaving before they started, but reasoned that it couldn't be that bad. And, in an abstract, theoretical sense the video amazed me: such a tiny organ, such human skill, such precision. However, I never managed to escape the realization that those people had done that to my son, my son who likes to slobber on my shoulder, who nuzzles my arm as he falls asleep, whose hands have grown so fast.

I think I would have rather had the operating room remain a black box. You know, the kind of magical box that does amazing things by some unknown process, because seeing the insides of that box scared me.

gratitude: P

P is for prayer

Sometimes, when I don't know what to do, I say a prayer, and feel directed.
Sometimes, when I feel overwhelmed, I say a prayer, and feel comforted.
Sometimes, when I say a prayer, I feel a sense of purpose.
Sometimes, when I pray for strength, I receive a note from a friend or a call or a kiss from my daughter.

I choose to see these things as answers to my prayers.

Sometimes, when I pray for help, my life gets more complicated.
Sometimes, when I pray for peace, my daughter starts singing at the top of her lungs, the water softener starts gushing and the trees start tapping on my bedroom wall.
Sometimes, when I say a prayer, I feel empty afterward.
Sometimes, when I pray for my heart's desire, I am denied.

I choose to see these things as answers, as well.

Friday, April 3, 2009

small pleasures

Oliver's tear duct opened some time last week. Now, both of his big blue eyes look the same size. I won't miss scraping the crusty goo off of his eyelids multiple times a day. I won't miss wondering if he'll have a permanent squint or damage to his vision.

Wednesday, April 1, 2009

gratitude: N & O

N is for nine o'clock, when the kids are asleep.
O is for out-of-the-blue gestures of friendship and support.

Today, as he drove off to work, my husband handed me a package out of the car window. I didn't bother looking at it. I just stomped back to the house in a rage about life. A few hours later, I told big sister about the package. She loves packages. She insisted we get it and open it. It turned out to be full of goodies from my attached-at-the-hip friend from middle school.

Big sister squealed in delight as she snipped open the package. Her eyes gleamed when she saw the colorful bag. She danced into her room to put the fairy stickers on her wall and carried the stuffed animals around the rest of the day. She tried to figure out which animal was the prairie dog featured in one of the books. Her pleasure softened my mood. Thank you, lame duck, for making my "horrible, terrible, no good, very bad day," just a little bit better.

permission

"Your son is alive," I tell myself. "You should be happy. Blissfully pulled along by the gentle currents of motherhood."

And then I remember, I've never found motherhood gentle and I resist being pulled along by anything. I want to set my own course.

Now, big sister and little brother determine the course of my day, rob me of my personal space, and fill every moment with sticky hands, repeated demands, and messes.

I scream, silently, and sometimes out loud.

But, if I sit and really think about it: I don't wish I were a man. I do want to stay married. I am glad I get to mother my son and daughter. I don't regret any of the career decisions I've made.

The problem is, I don't always take the time to sit and really think about it. When big sister just threw rocks at the TV and little brother is yawlping and biting his fist and I can't reach big sister because there are so many toys on the floor and little brother is sliding out of the scrunched up blanket in which I'm carrying him and the phone is ringing and Kevin has just left to pursue his respectable, enjoyably challenging career...then I wish I were a man and I hate Kevin and I wish I'd stuck to my guns and never had kids. Then, big sister wouldn't have brought home the bug that's lodged in my throat for the past three weeks. She wouldn't still have a double ear infection (and hearing loss) after two months and three rounds of antibiotics. I would be able to plan further ahead than one month, because little brother's next surgery wouldn't be hanging over my head. I'd have joined the Peace Corps, moved to Germany, and travelled to Greece.

I think I've entered the phase of life referred to as "Rice and Salt" in Snow Flower and the Secret Fan. It includes no glamour, no silence, no personal space, no order, no predictability, and lots of work.