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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Mummy dogs
Tonight was supposed to be leftover night, but Namine had a different idea. She saw on Jessica’s phone a picture of mummy dogs – hot dogs wrapped up in crescent rolls like mummies. “We should have that!” she said.
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Missing you
It seems hard to believe it’s been six years since both Jessica’s dad and grandma passed away. Sometimes it seems so long ago, and sometimes like we lost them yesterday. But they’re not lost; we’ll see them again. But not yet.
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Namine loves music
Namine is singing You Are My Sunshine, playing air guitar, and head banging.
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Cooties to the nth degree
As we have found out firsthand, MRSA is no joke. Namine was in isolation the entire time she was in the hospital, and now the rules to follow at home are just as strict.
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Going home!
Just wanted to let everyone know that we’re headed home now. I’ll post more – and pictures of a very happy Namine – after we’re all settled in again.
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It’s hard with only two channels
Sometimes it’s a blessing in disguise to have such petty things to complain about.
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The road to recovery
Yesterday it was just me and Namine.
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Raising awareness for Pierre Robin Sequence
It’s been a while since I talked about anything other than staying in the hospital. We’ve been pretty busy, especially with the complications that have arisen from Namine’s heart surgery and all that entails.
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Going home soon
The plan for Namine is, as the doctors have outlined it, for Namine to go home on Monday (assuming she doesn’t come down with anything else over the weekend, that is). She will go home on vancomycin – the IV antibiotic – and will remain on it for at least another week, if not two.
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Breathing easy
It’s twenty past four in the morning, and I finally feel that Namine is sleeping easily enough for me to go to bed, too. She fell asleep easily enough, but her breathing has been ragged. I suspect she just hit REM.
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On the mend
This morning a doctor came to change the bandage on Namine’s chest. As you might imagine, she was not thrilled. But when it was done, she was happy it was gone.
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Good news
Namine’s surgeon just came out to tell us they’ve finished. They ended up only needing to use sutures, and not staples like the PA had originally told us. The sutures are interrupted, though, similar to how the staples would be, so that the wound can breathe a little and still heal from the inside out.…