Namine
Namine Olivia Eiche was born on July 15, 2008 with a double-inlet left ventricle heart defect; Pierre Robin sequence, a condition that resulted in a regressed jaw and a partial (U-shaped) cleft palate; caudal regression syndrome (also known as sacral agenesis), which damages the growth of the tailbone and legs, also giving her clubfoot; and scoliosis.
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My daughter, the dinosaur
Today Jessica, Namine, my mom, my dad, and I went to Discover the Dinosaurs, an exhibit at the State Fair Expo Center.
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Baskethead
Do you ever do something, and you don’t know why you did it? Yeah, me too. The apple does not fall far from the tree, either.
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A high-stress situation
I’m not a fan of surprising Namine with doctor visits. She knew that she had an appointment with her pediatrician this afternoon, but she didn’t know any details. She certainly didn’t know that she would be getting vaccinated, and I wasn’t about to tell her.
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Freedom to move
Tonight was the first night in – well, I don’t know how long – that Namine was able to move freely in the bathtub. To play in the bathtub. She’s been limited by either her chest incision or the line in her arm, forced to sit still for one reason or another. But no longer!…
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Bravery unmatched
I am happy to say that Namine’s PICC line is finally out. It was a fairly uneventful process, with one minor hiccup. Namine never ceases to amaze me.
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The old yiddish proverb
Man plans and God laughs. — Yiddish Proverb After text messages, phone calls, and more phone calls, we finally know what’s going on. Maybe.
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All aboard the disaster train
Jessica and I have spent a good portion of the evening – now, the morning – on the phone. It seems that our understanding that Namine’s last dose of vancomycin was this evening at 8:00 is incorrect. But even that is not for sure.
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Communication issues
In which Namine mispronounces a word.
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Cardiology and the PICC line
On Friday we went to see Namine’s cardiologist. On the agenda was the checkup and possible removal of the sutures in her chest incision, about which Namine was none too thrilled. Namine is often afraid of doctors and nurses on principle. But she’s often shown that when it gets down to the moment, she sheds…
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Namine’s quote of the day
Turtles have shells on their backs and their tummies. Because if their shell falls off, they become a hedgehog! Namine says the craziest stuff sometimes. I’m still not sure where that came from.
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A drawing of us
The big one is you, and I have an eye patch because I’m a pirate.
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Cutting it close
We’re only provided a short supply of vancoballs and saline. We rely on the VNA to deliver more on time, as Namine’s medication must be given to her every six hours, without fail. It’s scary when we get down to the wire.