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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 02:59 pm (UTC)Please permit yourselves to feel whatever you feel, and don't think that you "should" feel this or that. And should you want it, remember that you do know people who have raised children with [insert preferred word here: challenges, disabilities, etc.], who would be happy to share their experiences, resources, and such, or just listen.
(no subject)
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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
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From:DS
Date: 2007-01-13 03:35 pm (UTC)There is an enormous amount of information on DS on the web. I suggest these two places to start.
This is what demonstrates our humanity.
B [NQP's godfather]
no subject
Date: 2007-01-13 03:44 pm (UTC)(no subject)
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Date: 2007-01-13 04:22 pm (UTC)(no subject)
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Date: 2007-01-13 05:10 pm (UTC)no subject
Date: 2007-01-13 05:14 pm (UTC)Congratulations to you and Christina, and happy birthday to Nicholas!
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Date: 2007-01-13 05:40 pm (UTC)no subject
Date: 2007-01-13 05:56 pm (UTC)Your last few months have been more than usually stressful (and even good stress is still stress) -- dissertation, pregnancy, moving, job-hunting, and now this. Be sure that you take some care of yourselves as well; it's easy for new parents to slip in that area, and your health could suffer if you do.
(no subject)
From:no subject
Date: 2007-01-13 06:08 pm (UTC)I'd read the link his godfather posted about DS, and am so relieved that he doesn't seem to have big heart problems. They mostly looked addressable, but avoiding the necessity is even better.
I am still going to send you those books, although I gather that sustained concentration may be difficult for the next few months.
Again, congratulations to all of you. I hope the two elder will be able to get some sleep.
P.
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From:jaundice
Date: 2007-01-13 06:13 pm (UTC)K. [I'm pretty sure nearly all babies get a little yellow after they are born]
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Date: 2007-01-13 06:19 pm (UTC)no subject
Date: 2007-01-13 06:22 pm (UTC)no subject
Date: 2007-01-13 06:38 pm (UTC)no subject
Date: 2007-01-13 06:46 pm (UTC)I remember well the "life in three hour bubbles" days. It's especially hard on Mom, who's doing the breastfeeding, so make sure to give her all the hugs and support you can!
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Date: 2007-01-13 07:40 pm (UTC)no subject
Date: 2007-01-13 08:14 pm (UTC)no subject
Date: 2007-01-13 08:21 pm (UTC)no subject
Date: 2007-01-13 08:28 pm (UTC)Their website is: http://www.dsamn.org/
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Date: 2007-01-13 09:17 pm (UTC)no subject
Date: 2007-01-13 09:26 pm (UTC)One of Richard's nephews has a Down's child, now 3 years old, who is doing wonderfully well. Last I heard he was a little behind the "normal" timeline on most of his milestones, but catching up with everything eventually. I spent a lot of time talking to his mom a Christmas before last, and was impressed by how much she was doing with him to stimulate his muscle tone and language abilities. I've gotta believe that had something to do with how well he's doing. I'm looking at a picture of their three kids right now, and his joyous grin just leaps off the paper.
Interesting about the Jewish tradition - I hadn't heard that. I know it's a cliche to say that Down's children are happy and loving, but as far as I can tell it's pretty much true.
Jeff in NYC
Date: 2007-01-13 09:50 pm (UTC)Enjoy your healthy baby.
FWIW, I have an autistic nephew, 4 yrs old. My brother+SIL have found numerous ways to get support, information, special schools, insurance coverage, and all the things associated with raising a special kid to take his place in the world.
Jeff Grossman
no subject
Date: 2007-01-13 10:03 pm (UTC)You guys are smart and so probably know this, but I think it's worth repeating: take care of yourselves (and each other), and it's okay to feel whatever you feel, you know? I imagine there's a whole lot of happy mixed with some sad and shock and anger and whatnot too and that's totally okay and normal. Okay, I probably really can't begin to imagine the emotions you guys have gone through over the last few days. Intense, I'm sure. You're great parents already and have a zillion people pulling for you guys (and, it appears, eager to meet Nico!).
Anyway. Yay! Baby! Woohoo!
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Date: 2007-01-13 10:45 pm (UTC)no subject
Date: 2007-01-13 11:59 pm (UTC)