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, October 31, 2009

Halloween

Oliver went Trick or Treating with Papa and Big Sissy. He slept in his stroller, while they walked up and down the street with our neighbors. He didn't, however, get to go to any of the parties to which we were invited. He finally got over his cold yesterday--after two weeks of coughing and crying, and I really don't want to go through that again. I enjoy my sleep. He's not going to church tomorrow, either. Maybe, I'll let him out of quarantine in another few years!!!

Wednesday, October 28, 2009

eating

Oliver ate like a man today: ham and bean soup for his mid-morning snack, part of my omelet for lunch, apple sauce for a snack and enchiladas for dinner. And he WANTED the food. He kept opening his mouth asking for more (well, except for the applesauce). I just need to feed the kid warm, salty, spicy food and he's happy. I think it helps that he's finally getting over his cold.

Monday, October 26, 2009

latent fear

Ashela asked if I worry about Oliver's heart bursting (paraphrase) when he cries really hard. I don't really, mainly because Oliver doesn't often do it. However, right now he's going on a week of a cold and I must admit I worry that the germs will get into his replacement parts and cause some sort of damage. I also worry that his lungs will wet down again and that will cause problems. I worry that he's not eating much, cause he doesn't have much in reserve. All worries courtesy of his funky heart.

Sunday, October 25, 2009

walking

Oliver's gotten a little braver today. He took 5 steps to mom a few times. He's also turned loose of one item of furniture to go get something else.

Wednesday, October 21, 2009

sleeping


We've started (and maybe successfully completed) sleep training Oliver. Up until now, we've held him while he fell asleep. He usually falls asleep fairly quickly and I enjoy dancing with him in my arms, so it hasn't been a big deal.

However, he's getting bigger AND he's had a cold. Taken together these things mean: he's cranky, having a hard time falling asleep, and heavy. It hurts my back to hold him while he squirms and coughs and grumps. So, two nights ago, we let him cry himself back to sleep when he woke up (for the 4th time) at 4:30 in the morning. He was so tired that he didn't cry very hard...and it only lasted 20 minutes or so. It did wake up big sissy (they share a room), but she just climbed into bed with us and waited him out. Last night, I put him down awake again. There was less fussing than the previous morning, and he fell asleep and stayed that way. Of course, we didn't, because he keeps coughing.

This morning, as soon as I put him horizontal in his bed for his nap, he started coughing, which woke him up. I calmed him down, strapped him in his bouncy seat, and left the darkened room. He played happily for a while and then it got quiet. He's currently fast asleep and not coughing as much. Yay for bouncy seats!

me like chocolate



Oliver tried his first mini Twix bar yesterday. He grabbed on with his teeth and wouldn't let go.

Monday, October 19, 2009

Wants to walk

Oliver hasn't wanted us to hold his hands and walk him around much lately as he likes to crawl and get things himself. However, he really likes to hold on to things (stools, chairs, etc.) and walk along behind them as he pushes them around. He especially likes his walker, happy to go back and forth across the playroom more times than we're willing to turn him around (He doesn't turn yet).


video

Friday, October 16, 2009

cranio-facial specialist


I waited, really I did. Back in, oh, June(?), the NP said that if Oliver's head shape hadn't "resolved" by 9 months, I could bring him back in...so I did, on his 10 month mark, because, well, his head is still slightly asymmetric (as are ours all). To me, the persistent assymetry meant that his head shape hadn't "resolved."

This time I saw the doc. He reiterated what I heard last time: "For mild to moderate flattening, children have the same outcome regardless of whether the parents simply reposition them or they get a helmet." But, he continued, that outcome is only a 60% reduction in the asymmetry. In other words, Oliver's head won't turn into a perfectly symmetrical noggin (rather, it may, but it also may not) no matter what I do.

I can live with that. What I didn't want to deal with was the case in which there was something more we could have done to correct his very mild flattening, but we didn't do it.

Friday, October 9, 2009

nope, nope, no...


...well, maybe, if you nibble my thighs.

Tuesday, October 6, 2009

Oliver likes...

...pizza (but I didn't get a picture). He grabbed onto the tiny triangle of crispy goodness and gummed it into mush.