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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: 2007-01-14 01:09 am (UTC)no subject
Date: 2007-01-14 01:43 am (UTC)Hopefully little Nico will be able to come home soon.
no subject
Date: 2007-01-14 01:47 am (UTC)This is such a stressful time for you, between the undoubtedly overwhelming joy and the difficulty with this unexpected news, but you're in our thoughts, and so many others'. Please let us know if there's anything we can do - not easy across the distance - but still.
no subject
Date: 2007-01-14 01:53 am (UTC)no subject
Date: 2007-01-14 04:32 am (UTC)no subject
Date: 2007-01-14 04:33 am (UTC)Lessee, I already said "Happy Birthday" to NQP in Shannon's pre-hospital trip post (although I had to refer to him generically, not yet knowing of his name). Did I say "congratulations" there too? If not, then here. If so, then again here. If I recall correctly, I also said it to each and both of you before his entrance onto the big stage. So probably all that's left for the moment is to say:
I hope y'all know we* are here, there, or wherever for you three whenever. Love and all best to y'all.
__________________
* "we" being the entire clan Levy Haskell (a small and relatively new clan, but a happy and loving one which is pleased as punch to live in a community as full of beautiful, caring wonderfolk as ours)—Susan and Gavi both send their regards and love (although they won't send hugs at the moment, since they're both down with nasty cold-like things that they would never wish upon anyone, much less new parents and the l'il guy what entitled them to said honorific.
no subject
Date: 2007-01-14 05:49 am (UTC)no subject
Date: 2007-01-14 12:17 pm (UTC)B
no subject
Date: 2007-01-15 01:49 am (UTC)Congratulations
Date: 2007-01-15 04:32 pm (UTC)Please accept my hearty congratulations on the birth of your son. He is such a cutie!
My mother, the Orchids, in FF also sends her congrats and best wishes and has you and your family in her thoughts.
I look forward to hearing from you guys when you have the time.