Wednesday, April 27, 2005

Arrival of the Tsar

Journal Entry, September 2003

Niko is the most beautiful boy ever born. He's oohing and aahing over the wonders of this life. He's entranced by thing that we take for granted, like his own hands. They must be delicious.

He scared us to death when he was born-- bright red and very angry, always screaming and trembling his "fists of rage". Most babies cry-- he was absolutely livid! Turned out his hematocrit level was so high , 77, that when they drew blood out of his arm, it was thick like maple syrup and strung from his arm to the needle. With so many red blood cells, his immature liver couldn't break them down, and he developed severe jaundice. They had him in an incubator for phototherapy for FIVE days before we could leave the hospital, and then another four days at home. Nine days of not being able to hold my baby except during feedings. Except, of course, that one brief moment where I slipped him out of the lights and danced with him to David Bowie's "Magic Dance." Three forbidden minutes of smiling, laughing, and twirling, NO WIRES. NO LIGHTS. That will always be our song. Every day we thought would be the last day...a new bloodtest on my little one, both soles of his feet pricked raw, and a new heartbreak every time they said he'd lost more weight, or his bilirubin level had spiked again. It was awful. I actually began to tear up when they called with the bad news the last few days.

I don't remember if I told you that the tests showed that Babe was at a higher risk for Downs Syndrome. He had a chance of 120 out of 1100. Well, while in the hospital, the nurse noticed that Niko's hands had a completely horizontal crease in them, a symptom of Downs. That, couple with his heart murmur (common in infants) and the high HCT, gave them cause for concern, and the next thing I know I'm giving them the okay to count his chromosomes. He was beautiful, and looked normal, but there are different levels of severity. A month later, his tests come back completely normal. A series of coincidences. The crease is called a simian crease, and appears to be hereditary. Luke's brother has one. "Gosh, I'm so sorry!" He said, looking down at his hands. "I thought everybody's hands looked like these!"

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