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)

Thursday, November 25, 2010

bottles, part III

We just got rid of Oliver's nap bottle.  It happened yesterday, or rather, I accepted that it had already happened yesterday.  Oliver frequently falls asleep without his nap bottle when I push our morning errand run longer than I should.  So, on Wednesday, when Oliver ate a huge mid-morning snack (1/2 cup applesauce, 1 Yo Toddler yogurt, 1/2 cup rice and beans, 1 peppermint Joe Joe, and water) I decided to see how he did without the bottle.  He did fine, of course.  He just snuggled down with puppy, Fi-fi (his long neck, a.k.a. giraffe) and his blankies and drifted away.  He also ate a much bigger afternoon snack than usual. 

This sort of eating, I understand.  This is what my daughter did, too: nibble in the morning, huge mid-morning snack, nibble after nap, huge mid-afternoon snack, nibble at dinner, big before bed snack.  Although, I think we can push his mid-afternoon snack back a little bit and turn dinner into a "big" meal.

The last few days I've been feeling especially grateful that we made it home without a feeding tube--and that Oliver has grown.  He has his next cardiology appointment in a few weeks and I'm curious to see how much weight he's gained and how tall he's gotten...  (not so excited to hear about the other stuff, but, you know).

Monday, November 22, 2010

This close:

A few days ago, our whole family was supposed to fly cross country to visit relatives for Thanksgiving.  Then, the day before we were supposed to leave, Oliver's nose started dripping like a faucet.  He took a 30 minute nap because as soon as he lay down flat, he started coughing, woke himself up, and started crying. 
"Just give him some Benadryl," suggested a friend.
"There are no decongestants on the market that are safe for children that age," said the pharmacist.
"Decongestants can alter a person's heart rate and blood pressure, so you wouldn't want to give them to him anyway," said the pharmacist.

That night, Oliver went to sleep at 7, woke up at 8, woke up at 9, woke up at 10:45, woke up at 2, woke up at 2:15, woke up at 2:45. 

The next morning, after learning that one of the cousins we were going to visit was puking, we canceled our travel plans.

We were this close to going.  This close:
Oh, well.  Now we can catch up on all of those projects that we keep putting off. And, at my husband's request, we will be getting Thai takeout for Thanksgiving.

Tuesday, November 16, 2010

language...

...is now a way of life for Oliver.  He narrates his life and uses words to control his environment.
"Mama tent," he demanded today.
"In tent."
"Laugh dog in tent" (we have a toy dog that laughs)
"Poot in tent" (computer)
"dog out"
and then suddenly, "cows."
I was baffled, until I saw Evelyn's old cow jumper.
"Do you want to wear the cows?" I asked.
"Cows on."
And so he spent the next few hours prancing around in a very cute cow dress.
"Do you want the cows off?" I asked several times.
"No-no-no," head shake, "cows on."
Until finally, he decided, "Cows off."
and that, my friends, was that.

...
He's also started saying "thank you," and "cues me," But he only says "cuse me" when he "toots". 

Today, I spent some time in my office.  He rattled the nob a few times then lay down on the floor outside of the door and began calling under the crack, "Love Mama.  Love Mama."  How could I resist?

Wednesday, November 10, 2010

stories

This week, Oliver has started telling me stories.  Here is one....and my interpretation:

"La-la bump.  Hands wall."

Oliver told this story over and over again a few days ago.  Earlier in the day, my freind and her one-year-old daughter had come over to visit.  While they were visiting, Olivia began coloring on our chalkboard.  Oliver walked over, positioned himself next to her and gave her a big "bump" with his behind, causing her to fall on the floor--more stunned than anything else.  Oliver knows he is not supposed to bump kids, so I said, "Oliver, no bumping people.  Go put your hands on the wall."  He stood in time out with his hands on the kitchen wall for the next 90 seconds. 

Later that evening, he started telling me the story of his day.  It took a few repetitions for me to figure out what he was talking about since I'm not used to him describing things that happened earlier in the day.  Then, we started having a little dialogue:
"La la, bump" he said.
"Did you bump Olivia?" I asked
"huh," he agreed.
"And then what happened?" I asked
"Faww down."
"Did she fall down?" I asked. 
"huh"
"Oh no! What happened next?" I asked.
"Hands wall," he said.
"You had a timeout?  You had to put your hands on the wall?"
"huh." again. 
and then, "La la, bump," again.

We probably repeated that little dialogue 15 or 20 times before he got distracted by one of his diggers.