Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Rumplestilskin

Who knew that in addition to super-fresh seafood, easy access to mountains and the ocean, and proximity to my family, our move would bring us to “the heart of the most fertile puppetry-producing region of the country.”?* And that proximity would make us neighbors to the best-kept secret in Boston, The Puppet Showcase Theatre?

Yesterday we took Charlotte to her first professional (i.e., non-birthday party) puppet show, in a theatre dedicated to nothing but puppets. We had no idea what to expect beyond a puppet-rendition of Rumplestilskin. We were all delighted by Dream Tale Puppets’ production of the tale, performed by two puppeteers and five tabletop puppets. A perfect 60-minutes long, the show captured Charlotte’s complete attention. She was delighted by the puppets and the story (a girl becomes a queen, just her speed). We thought the staging was terrific and the story well-told. Lots of good giggling was done by all.
Stay tuned to learn about how this performance inspired Charlotte’s activities for the rest of the day and this morning.

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Congenital Heart Defect Awareness Month

February was congenital heart defect (CHD) awareness month. Awareness campaigns, statistics, and information were everywhere. So, I decided not to write about heart defects in February.

Okay, I didn’t decide so much as not get around to it in time. But, never mind about that because in our little world, every day is CHD awareness day. I thought choosing a random day to write about it would have a bit more impact, make more sense in relating how CHD affects our lives.

We talk often about Charlotte being a gift, her results from surgery being exceptional, and the blessings we’ve experienced. That’s not just our perception. It’s the cold, hard fact.

Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. Truncus arteriosus is rare among these–latest CDC statistics, 0.72 live births in 10,000 have TA. That’s around 300 children each year. Consider that Prentice, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of how few children are born with this defect.*

A recent-ish study demonstrated that truncus arteriosus is one of the most expensive hospitalizations of any defect. An average neonatal stay is $192,781. Average hospital stay is around 21 days.* (Recall that Charlotte’s first stay was 49 days; she was above average even then!)

And, the final stat for tonight: 90% of newborns survive their first repair. The degree of complications after that surgery is hard to track, I think. It depends on how much damage the heart suffered prior to repair (for Charlotte, minimal, thank goodness), what other underlying medical issues are there, and (I think) each child’s individual constitution.

Those are the CDC stats, the numbers that parents seek out when they first hear those life-changing word, “The ultrasound shows…” After that other numbers take over, ventricular performance, pulse ox, weight, medicine dosages, food intake, months to next surgery, etc.

You’ve read our numbers for the past five years. So, I’ll end with our latest stats.

First, the one Charlotte would like reported–she lost ANOTHER tooth on Monday, bringing the grand total of lost tooth to five. Second, when we met Charlotte’s new pediatrician yesterday, we found out her latest “key” stats: Charlotte is 47 1/2 ” tall and weighs 46 pounds. She’s tall for her age and thin. (Duh, her tights fall down all day.)

Charlotte’s new pediatrician is in partnership with my high school friend who I have promised I will not again call “Danny” in the office. Old habits die hard! We loved meeting Dr. Mitchell. And we look forward to seeing if we agree with Dan that she is “the best doctor in the universe.” So far, so good!

*Data from CDC.gov and NMH.org