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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Home for the Fourth
After coming home from the hospital, we had planned on staying home since we figured that Namine would not be feeling up to going anywhere. We were wrong.
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Stronger with you
Namine is terrified of what hospital staff often call “pokes.” But she knows them for what they are: needles. Needles to give fluids or take blood away. But all they really do is bring pain, so much pain that they send a normally very well-behaved little girl into the most violent of tantrums. That’s not…
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Going home
After rounds this morning, Namine’s doctors decided to let her go home. The only thing that hasn’t come back is the blood culture, and that will be another forty-right hours. (They don’t believe anything will come back positive anyway; it was just another precaution.) So as soon as the nurse brings us the discharge papers,…
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Impromptu EKG
Namine’s sleeping heart rate keeps dropping into the fifties. This concerned the nurse, who brought in the floor doctor, who called cardiology, who ordered an EKG.
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Results of the cath
All things told, Namine’s heart catheterization went well. The doctors were able to see what they wanted to see, and we were able to go home by evening. But now we have complications to deal with.
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Conversation between Namine and her cookie
“Wait, put me down!” “No, I need to eat you.” “No, don’t eat me!” “I’m sorry, I have to.” *munch munch munch*
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Pre-Fontan evaluation
Namine had a heart catheterization in preparation for the Fontan.
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Father’s Day weekend
Father’s Day weekend Jon and I had the great pleasure of having Namine spend the day and night with us. We mostly stayed around the house, playing outside. She loves playing in her playhouse “cooking” us dinner, drawing with chalk, scooting up and down the ramp, and, of course, swinging! That girl could swing for…
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Aaand it’s gone.
Okay, it turns out that Namine is scheduled for the 2nd after all. le sigh
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Reschedules all up ins
When Namine’s heart catheterization was scheduled for July 2, it was only because that was the only opening. Even so, we’ve had plenty of experience with Children’s Hospital rescheduling us with hardly a moment’s notice. We were rightl to be apprehensive.
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Cath Before the Fontan
We’re trying to schedule Namine’s heart catheterization for the Fontan.
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Bicycle, bicycle!
Load up the Queen song, because we’re going to rock out! 🚲