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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Another blood draw
Remember those blood draws? Well, Namine had another one today, again to check her INR. They dropped her coumadin dose since last time, so here we are again.
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Despite the fear
Since Namine’s chest incision from her heart surgery is taking longer to close than originally anticipated, she had to keep it covered with gauze and some tape over the weekend. She was none too happy about it, either, especially because her skin is very sensitive to adhesives.
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Open letter to Rise Against
Tim McIlrath and Neil Hennessy, I want to thank you for the song “Swing Life Away.” It has been an anthem of sorts for both me and my daughter, Namine. She was born with several birth defects, some so severe that doctors informed us, prior to her birth, that she would probably not survive long…
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You can’t win them all
You can encourage kids to play together, but you can’t make them get along. Not everyone is willing to learn, to compromise, to share; not everyone is open to the idea that different is not bad.
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At the cardiology clinic
As you can see, Namine was super cheerful today. She knew what was in store – an x-ray, a blood draw, and then on to see the cardiologist – but nothing could sour her mood. No, not even the blood draw.
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Blood on the sheets
Every morning, before I leave for work, I move Namine from her bed to “the big bed” (her name for Jessica’s and my bed). This morning, as I picked her up, I noticed two things: blood on both her bed sheet and her nightgown.
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I blew Namine a kiss.
“I got it, Daddy. I’ll put it here, right next to my heart.”
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Trip to the hospital
Remember Namine’s hematoma on her chest from last night? Today Jessica took Namine to the hospital to get it checked out.
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Namine singing
A couple videos of Namine singing.
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Late-night scare
Last night, when I was getting Namine ready for bed, I noticed something: the scab over the incision on her chest was half gone. What’s more, she had a nickel-sized bruise. It hadn’t been there that morning, of that I was sure. We immediately got on the phone with the hospital’s special needs and cardiology…
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Homemade donuts
Don’t they look good? I donut know which one I liked best. (And I don’t apologize for the bad pun.) We won a little donut maker at the KidReach picnic, and yesterday Jessica and Namine made some.
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Pizza time
Ever since Namine’s physical therapist came over last week, she (Namine, not the PT) has been craving pizza. Normally this wouldn’t be an issue, since we all love to eat pizza. (Seriously, it’s probably our favorite food.) But Namine has been on a mandatory low-fat diet since the Fontan, and do you know how hard…