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lollardfishMy son, Nicholas Quillen Perry, was born on Thursday (1/11) at 8:21 P.M. after 16 hours of labor. Shannon's water broke at 3:45 AM and we'd been in the hospital since 4:45 or so. It was a very difficult labor and birth because Nicholas was facing up most of the time, although he rotated at the last possible second and emerged face down. He was 7 lb 13 oz.
He has Downs Syndrome. This was a surprise to Shannon and me. No testing had hinted at the possibility, but I guess it's always possible. About 1 in 800 babies have it, worldwide (a staggeringly high rate of occurance) and doctors really have little understanding of the risk factors. It involves a genetic mutation (an extra chromosome) immediately upon conception, but does not usually seem to be passed down genetically. It just happens, and it's happened.
The good news - his heart, the biggest threat to DS kids, is very strong and undamaged so far as we know. His limbs are also strong, and DS babies often have trouble with early muscle tone. He started breast feeding successfully about 24 hours after being born, and DS kids have small mouths and big tongues, so that too could be a problem. So it looks like we're pretty lucky there. He's big, strong, and sweet.
He had trouble getting enough oxygen when he was born, so he's being kept in a special care nursery in Abbot Northwestern, and we're in a room in floor below. His breathing is good now, but his temperature is low (36.3 where it should be 36.5 centigrade, or a bit higher), so he may have to go back from a bassinet to an incubator in a few hours. It's not clear to me whether these problems related to Downs, the very hard labor, or something else. Before we can take him home he needs to be able to eat (mostly he can), excrete (again, good), get through jaundice (still an issue), breathe (good), and stay warm. It'll probably be a week, although we'll probably be released today.
Because Nicholas took to breast feeding so quickly, an unexpected delight, we're not going to get much rest. We're on an every-three hour schedule (1:00, 4:00, 7:00, 10:00) that means we take too-sort naps, then head to the nursery to try and feed. When he's awake, he does great. When they've been poking him with needles for one reason or another, he shuts down and sleeps hard, and refuses to wake and eat. During labor, life narrowed to the moments from contraction to contraction. Now life exists in little three-hour bubbles.
What the future holds is hard to know. Downs is a strange condition. DS people are often the happiest people in the world, so happy that some Jewish traditions (my mother tells me) hold that they are especially touched by the divine. It's, usually, a condition that leads to healthy, happy, lives. How he develops intellectually and physically is impossible to know now; it will take many, many, years. Shannon and I are doing ok - the shock was incredible, and too quickly convulsed against the joy of seeing our son born. There's a little grieving involved, but we so love this new person that the positive emotions are mostly coming through - just with little lumps in the throat from time to time, like while I am writing this.
Right now, though, we're like any new parents. Eating, sleeping, feeding - that's our world.
We're taking visitors very slow, but will call people bit by bit. We appreciate all the support we're getting, more than you can know.
He has Downs Syndrome. This was a surprise to Shannon and me. No testing had hinted at the possibility, but I guess it's always possible. About 1 in 800 babies have it, worldwide (a staggeringly high rate of occurance) and doctors really have little understanding of the risk factors. It involves a genetic mutation (an extra chromosome) immediately upon conception, but does not usually seem to be passed down genetically. It just happens, and it's happened.
The good news - his heart, the biggest threat to DS kids, is very strong and undamaged so far as we know. His limbs are also strong, and DS babies often have trouble with early muscle tone. He started breast feeding successfully about 24 hours after being born, and DS kids have small mouths and big tongues, so that too could be a problem. So it looks like we're pretty lucky there. He's big, strong, and sweet.
He had trouble getting enough oxygen when he was born, so he's being kept in a special care nursery in Abbot Northwestern, and we're in a room in floor below. His breathing is good now, but his temperature is low (36.3 where it should be 36.5 centigrade, or a bit higher), so he may have to go back from a bassinet to an incubator in a few hours. It's not clear to me whether these problems related to Downs, the very hard labor, or something else. Before we can take him home he needs to be able to eat (mostly he can), excrete (again, good), get through jaundice (still an issue), breathe (good), and stay warm. It'll probably be a week, although we'll probably be released today.
Because Nicholas took to breast feeding so quickly, an unexpected delight, we're not going to get much rest. We're on an every-three hour schedule (1:00, 4:00, 7:00, 10:00) that means we take too-sort naps, then head to the nursery to try and feed. When he's awake, he does great. When they've been poking him with needles for one reason or another, he shuts down and sleeps hard, and refuses to wake and eat. During labor, life narrowed to the moments from contraction to contraction. Now life exists in little three-hour bubbles.
What the future holds is hard to know. Downs is a strange condition. DS people are often the happiest people in the world, so happy that some Jewish traditions (my mother tells me) hold that they are especially touched by the divine. It's, usually, a condition that leads to healthy, happy, lives. How he develops intellectually and physically is impossible to know now; it will take many, many, years. Shannon and I are doing ok - the shock was incredible, and too quickly convulsed against the joy of seeing our son born. There's a little grieving involved, but we so love this new person that the positive emotions are mostly coming through - just with little lumps in the throat from time to time, like while I am writing this.
Right now, though, we're like any new parents. Eating, sleeping, feeding - that's our world.
We're taking visitors very slow, but will call people bit by bit. We appreciate all the support we're getting, more than you can know.
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no subject
Date: 2007-01-13 03:09 pm (UTC)When you're ready (and out of the 3hr bubble), you might look for http://www.michaelberube.com/ some of Berube's work, if you're not already familiar. He's an Eng prof at Penn State, and a hugely erudite, cultured man, who loves his family deeply- and has worked, talked, and written with and about Downs since his youngest son was born.
Of course, if there's any way I can offer support, or better offer support (like shutting the hell up & butting out!), please let me know.
*strength*
Michael Berube
Date: 2007-01-13 04:50 pm (UTC)If there's anything in particular of his we should read, please post links.
B
Re: Michael Berube
Date: 2007-01-13 11:57 pm (UTC)Re: Michael Berube
Date: 2007-01-14 12:06 am (UTC)I've been wading through descriptions of various books on the Internet. Do you want me to order you copies of the ones I think -- based on the little research I've done -- are worth reading?
B
Re: Michael Berube
Date: 2007-01-14 12:14 am (UTC)Um, I really don't know. I'm going to read a lot before the next three months are out, but ... order things you might want to read, at least a little? Don't order too much?
We're going to get TONS of literature, free videos, books, and such. It's one of the things that the various non-profits provide.
Re: Michael Berube
Date: 2007-01-14 12:18 am (UTC)There are a couple that I think are worthwhile.
B
Re: Michael Berube
Date: 2007-01-14 12:19 am (UTC)B
Re: Michael Berube
Date: 2007-01-14 06:00 am (UTC)Re: Michael Berube
Date: 2007-01-14 12:11 pm (UTC)Damn hippies.
B
Re: Michael Berube
Date: 2007-01-14 09:13 pm (UTC)Re: Michael Berube
Date: 2007-01-14 09:17 pm (UTC)I ordered some stroopwaffels for you.
B
Re: Michael Berube
Date: 2007-01-14 03:42 pm (UTC)Re: Michael Berube
Date: 2007-01-14 04:18 pm (UTC)B
no subject
Date: 2007-01-13 05:10 pm (UTC)no subject
Date: 2007-01-13 07:28 pm (UTC)I'll probably order a small stack from Amazon once I find a trustworthy review site for them.
B