Update

[lollardfish]

My 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.

Comments

[cakmpls.livejournal.com]

I don't know you two very well, but what I do know tells me that you have everything needed to be wonderful parents for Nicholas.

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.

[lollardfish.livejournal.com]

I don't know what our perferred word is yet. I've been stumbling over a lot of them.

[neogrammarian.livejournal.com]

The three of you have been much in my thoughts.

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

[minnehaha.livejournal.com]

I didn't know that about Berube. His blog has always been worth reading, and I was sad to see it end a few days ago.

If there's anything in particular of his we should read, please post links.

B

DS

[minnehaha.livejournal.com]

To friends of buttonlass, lollardfish, and baby Nicholas:

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]

[jmanna.livejournal.com]

I've been trying for an hour to think of something comforting or clever to say. I've failed. I have to say is you have a son. Congradulations! The rest is details you'll deal with day by day.

[lollardfish.livejournal.com]

Congratulations is, in fact, the right thing to say. Thanks. :)

[mizzlaurajean.livejournal.com]

I remember reading somewhere that DS babies can have a more difficult time regulating body temp.

[lollardfish.livejournal.com]

Yeah. We need to talk to a doctor and learn more.

[jbru.livejournal.com]

Welcome to fatherhood. Everyone I know who has started this adventure has said that it is the greatest and hardest thing they have ever done. The challenges are many but the rewards are greater than they can express. I expect your experience to be more of the same.

[brithistorian.livejournal.com]

The birth of a child is always a time of surprises, some wonderful, some less so. It sounds like you're doing a great job of coping with both sorts of surprises here.

Congratulations to you and Christina, and happy birthday to Nicholas!

[kalmn.livejournal.com]

congratulations! he's beautiful.

[starcat-jewel.livejournal.com]

I am happy for the birth of your son, and sorry that he has a medical problem.

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.

[neogrammarian.livejournal.com]

-Thank you- for this reminder for the 2 of them! (Usually I'm the one to say it!)

[pameladean]

Congratulations to all of you. I see that his nickname may be Nico, and I've been assuming that the I is pronounced in the continental way, like ee, but do correct me if I'm wrong. The pictures K posted were utterly adorable. I expect that you know what the MN on his blanket was all about, but it cracked me up, as if Minnesota had firmly claimed him on the spot: "I have forty-two native orchids and THIS KID."

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.

[minnehaha.livejournal.com]

"Nico" is pronounced with the long e sound, yes.

K. [although mom and dad are currently calling him Nicholas just as much]

jaundice

[minnehaha.livejournal.com]

I didn't think he looked more than a little yellow yesterday, and hope he hasn't gotten worrisomely worse on that.

K. [I'm pretty sure nearly all babies get a little yellow after they are born]

Re: jaundice

[zinzinzinnia.livejournal.com]

I actually was pleased to see that he looked really quite nice and pink -- and plump, too! Not even to mention the crazy fuzzy hair!! :)

I'd heard that most babies have at least minor bouts with jaundice, perhaps having to do with their own systems having to get kick-started after Mum taking care of so much body-regulation until that point, so I wouldn't be surprised.

I, too, posted already to Shannon, but now here:

Congratulations!

[pied-piper70.livejournal.com]

As I said on buttonlass's journal, I am very much looking forward to meeting Mr. Nicholas and welcoming him into the world...And to see you guys too and give you my congratulations and my support, if needed...You two are very blessed to be part of such a community of friends...

[saracura.livejournal.com]

Oh what a cute fuzzy baby you have there! The look of love on your face just beams out of the photo. Mega congradulations!

[madtruk.livejournal.com]

I love the pictures. I have some work things to sort out and some details to finish, but we'll be up as soon as we can. CONGRATULATIONS! Now we can swap diaper stories ;-).

[sleigh.livejournal.com]

Congratulations! The pictures K took were very sweet.

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!

[minnehaha.livejournal.com]

For the record, it was me who took the pictures with K's camera.

B

[jadiana.livejournal.com]

Congratulations to you both, and I'm sending good thoughts your way.

[bchbum-98.livejournal.com]

Congratulations! May parenthood be all you expected and more!

[msgillian.livejournal.com]

Congrats to both of you- Nico looks super cute! I look forward to seeing all three of you when you are up for it.

[msgillian.livejournal.com]

Oh and if you haven't hooked up with the Down's Syndrome Association of Minnesota, you should- they are amazing resource.

Their website is: http://www.dsamn.org/

[lollardfish.livejournal.com]

We will. We will ...

[haniaw.livejournal.com]

Congratulations on your beautiful new baby!!! The pictures from B&K are so adorable. I know that parenthood will be a little more challenging than either of you expected, but I am sure that you will meet those challenges with strength and grace and with lots of love and support from your friends and family. I wish you all the best.

[dreamshark.livejournal.com]

Congratulations and hugs to all of you! You've all been in my thoughts a lot. It's gotta be a shock, but it's wonderful to hear how quickly and completely you both bonded with your beautiful baby.

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

[(Anonymous)]

C o n g r a t u l a t i o n s !!!

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

[laurel]

Oh wow. Congratulations to all three of you!

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!

[musicmutt.livejournal.com]

Congratulations! No matter what, he's your little man and a welcome addition to the extended family.

[neugotik.livejournal.com]

Congratulations Daddy-o! The exciting new world of parenthood & a new life has opened up before you! Wow. That's awesome!