The Down syndrome family

When I was about 8 months pregnant with Colin, we were at one of Kenneth's basketball games at a high school about 40 miles away. Out in the foyer area, a little boy was toddling around, just a little awkward on his feet. I couldn't tell how old he was. My "Down syndrome radar" wasn't very finely honed yet, but I guessed from his facial features that he might have that extra 21st chromosome. I watched him for a while, and tried to figure out who his mom was in the crowd of people. When I found her, I hesitantly approached her. "Hi! Your little boy is so cute! How old is he?" She told me he was 5. "Awww. He's really just adorable. Does he.... does he have.... Down syndrome?" I could tell she was a little taken aback, and she answered, rather suspicious and guarded, "Yes...." I breathed a sigh of relief and said, patting my belly, "Oh! Because this little boy I'm expecting has it, too!" Her expression and posture immediately changed and relaxed, and she said, "Oh! Congratulations!" And we chit-chatted, and she assured me that this journey I was about to embark on would be challenging, but it would change me for the better, if I allowed it to. We exchanged phone numbers, and as we went our separate ways, I marveled at the love I felt from her as she welcomed me into the Down syndrome family--this amazing club I'd never known I wanted to join.

I'd already experienced this warm acceptance in a couple online communities I found in those early, frightened days post-diagnosis. I'd gone searching for information, for support, for whatever I could get my hands on after we'd received a positive result from the amniocentesis. What I found were people sharing information, supporting and encouraging each other (supporting me! Was I ever needy!). My favorite resources at the time were the Down syndrome pregnancy support group on babycenter.com, as well as its partner, the babycenter.com Down syndrome group, where so many amazing moms of kids with Ds hang out. Here I found ladies who were either in the same boat I was--pregnant with a baby who was already diagnosed with Down syndrome, or who were "waiting it out" with higher odds due to bloodwork results or anatomical "markers" on ultrasounds--or women whose children with Down syndrome were already here. I still marvel at those amazing women, who check in almost daily to welcome frightened, worried women and offer support, encouragement, and all of the awesome information women in that situation often crave--especially reassurance that life doesn't end when a child with "a little something extra" joins a family. On the contrary--the insights that these wonderful ladies provided about life with their kids helped me to eventually look forward to Colin's birth with excitement and anticipation instead of dread and fear. From those 2 support groups, I was pointed to downsyndromepregnancy.org, which is an amazingly well-thought-out website, created by amazing moms of kids with Down syndrome, and reviewed by doctors--specialists in the field. I devoured their free e-book, which covered all of the topics I was anxious to learn more about, in a soothing, yet informative, way.

One of the other resources I've loved since being pregnant with Colin has been "mommy blogs"--blogs written by moms of kids with Ds of all ages, who chronicle their family's lives. These blogs, with their humor and poignant reflection, helped me get a glimpse into what life might be like with my little boy, and they helped me realize something huge: that my life would be so incredibly normal, in spite of what seemed like such a scary diagnosis at the time. Links to many of my favorite Ds mommy blogs can be found on the right-hand side of this page.

As amazing as life with Colin has been in this first year, as much as I adore him and want to eat him up daily, as much as he is my favorite part of this experience (obviously), the love I have for the Down syndrome FAMILY comes in at a close second. Because I have Colin, I was linked up with incredible people like my beloved Lexi, whose Abby is betrothed to Colin (I met her on babycenter, so it's sort of a matchmaking site, too, in a way), and so many other awesome moms who have now become my good friends. Seems like everyone I know in real life has a friend or a family member who has a child with Ds, and we've been connected with each other because of this bond. I've been linked to people on Facebook through people I know in real life--those people say, "Oh! You have a kid with Down syndrome? I'm sending you friend requests for 100 people you need to be friends with!" And those people have embraced me. We may have nothing at all in common other than each having a child with Down syndrome--we may differ in religion, political views, geography--but the bond created by that extra 21st chromosome is strong. During those times of uncertainty, of wondering what lies ahead for us with Colin, I look to those who started down this path before I did, and I see that in spite of the challenges that come with the territory (when has parenting ever NOT involved challenges?), these parents LOVE their kids, and are proud of them, and are tremendously grateful for the opportunity to parent them. And I realize that in parenting Colin, I find myself in very good company in this Ds family. So it's without hesitation that I'd say to others who are just embarking on this journey, "Congratulations! And welcome to the best club you never knew you wanted to join!"

Photogenic

When I was tucking Christian in the other night, I noticed he had a bonk under his eye, like the kind of bonk he might have gotten from playing in a really tall, skinny box with Carinne, and maybe I'd told them it wasn't a good idea to stand it up on one end and climb into it by standing on the back of the couch, but maybe they did it anyway, and maybe it had fallen over and he'd smacked his face on her shoulder. Or something. So I said, as I tucked him in, "Ooh, looks like you're getting a black eye, buddy." And he said, "I wanna see!" But I didn't want him to get out of bed, so I told him I'd just take a picture with my phone:

"Well, that one didn't really work. You were all squinty. Let's try again. This time, don't squish up your cheeks....."

"Oh. You still can't see the bonk, huh? OK, we'll try again. This time, maybe try and keep your eyes open wide and look up...."

This time he swore he could see it. Awesome. (I swear to you that he had a big red spot under his right eye. I wish I knew how my phone accentuates blemishes on MY face and doesn't pick up on Christian's eye bonk....)

And, just so I could capture what he looks like normally, I took another picture today. "Hey, Christian, smile!"

Ummm.... OK. Good enough, dude.

Meet the SS2000

I don't blog often, but when I do, it's about the most important stuff in our family's lives. Those things that I'm most passionate about, that make me all giddy inside. This is why today, I present to you a blog post about (dun dun da duhhhhh): The DeVilbiss Snot Sucker 2000. (It's actually the DeVilbiss Homecare Suction Unit. Not quite the same ring to it, right?) Here's a photo of it:

This blurry photo shows Colin making out with it. He loves it almost as much as I do.

(I took a video of it in action, but it was crap because I can't record a video on my phone AND pin down little flailing arms and hands that like to help AND keep a little head still, all at the same time. You'll just have to imagine the hum of the motor and the delicious slurping, sucking sounds.)

This device--slightly smaller than a car battery--has brought our family immense joy and satisfaction in our daily lives. And by "our family," I mean me, because I'm the mom, and you know what they say about when Mama's happy. The reason I have this wondrous apparatus is that a couple months ago, I told my pediatrician (I have a MAJOR doctor crush on the guy--he's just been so great to our family over the years) that it seemed like Colin's nose was ALWAYS congested, and that any congestion made it really hard for him to eat and sleep, because of his teeny-tiny little airways. I joked to him, "I want one of those wall-mounted suction things like they have in the NICU. Those things are so awesome!" He said, "OK, then. Let's get you one." I think he could tell that I really wanted to kiss him (and I definitely can't do that because I still need him to be our doctor. A restraining order might get in the way of our relationship), so he quickly added, "Well... not a wall-mounted one, but I can prescribe an electric one that will work almost as well." He (more likely, his lovely office staff ladies) called a local home health company and ordered one, and their delivery guy brought it that day. If I'd known how dramatically that guy's delivery would alter the course of my life, I'd have had balloons, flowers, and champagne waiting for him.... Or maybe tickets to a Monster Truck Rally.

Right after I got the SS2000, I did a science experiment with it, which basically just involved sucking out as much snot as I could from Colin's nose with the stupid bulb syringe (those things might work a whole lot better if the bulb part was about as big as a watermelon, so they could get some good suction behind them. But then they'd be a lot harder to pack in the diaper bag....), and then, when I'd gotten out as much as I possibly could with it, firing up the Snot Sucker 2000 and having at it. The results were stupendous! After that little experiment I left the bulb syringe out on the dresser just so I could sneer at it when I passed and make it feel bad for its pathetic inferiority. I sometimes even leave the SS2000 next to it so it will feel the full weight of its inadequacy and shame.

Don't feel bad for it. It has earned the shame and humiliation.

Here's a link to the newer model (the SS2001?), on amazon.com. They're about $170. I pay about $7 a month to rent one (not sure how much our insurance's portion is, but I don't care because they're evil jerks who deny payment on EVERYTHING)). I get to keep the Machine of Wonderment after 10 months, so I guess it's a rent-to-own set-up. The new model on Amazon says it's stationary, but I'm pretty sure it's portable like mine. I even got a handy carrying bag with my rental, plus an AC adapter to charge it in the car, for when you run errands or bring it with you on all your family vacations (unless your husband is unreasonable like Devin and tells you it's too big and not essential enough (blashphemer) to squeeze into the Suburban for family road trips. Next time I'm sneaking it in somewhere before he loads the car). Just to give you an idea of size, here's a photo of Colin and a Slinky in the bag. Bear in mind that Colin weighs just less than 16 pounds. The SS2000 weighs only about 6.

It's padded, too, for a softer landing when it tips over while you're taking pictures of your baby in it.

I've been trying to convince my friend Lexi to keep bugging her doctor for one of these suckers for her little Abby--Abby's pediatrician is a big jerk who apparently likes little girls to suffer needlessly, so she won't prescribe one. She tells Lexi every time she asks for a prescription that she just needs to toughen up and suck the snot out WITH HER OWN MOUTH. Well... she wants her to buy a Nosefrida, but I bet that's exactly what it feels like to use one of those things. I know, I know--there's a bypass/guard thing that doesn't allow actual contact of nasal secretions with the user's mouth, but how much suction can you really provide if you can't control your gag reflex while using it? Some people just can't handle stuff like that--like others can't handle hearing others chew, or, you know, whatever. Today, I found this article from a British website by Down's Syndrome Medical Interest Group (read it because it's cool, but just be forewarned that it mentions "nasal douches." I'm telling you now so you won't be drinking something while you read it. It HURTS to laugh drinks through your nose). It gives solid medical reasoning for the necessity of  keeping kids with Ds clear of nasal secretions to prevent sinus infections and even ear infections. I want to email this part to Lexi's mean doctor:

Basically the whole skeletal structure of the mid-face and of the throat area behind the mouth tends to be rather cramped so that drainage of normal mucous secretions is compromised. This leads to mucous pooling and stagnating in the nasal passageway and this provides a focus for infection. Once infection sets in yet more mucous is produced and a vicious circle results [....] People have in the past probably been too accepting of the problem, regarding it as an inevitable part of the syndrome. We think that health professionals and parents should now try to be a little more proactive in trying to relieve children of the more severe effects of persistent catarrh which often has a detrimental effect on their general health and well-being. Also, for those who are very congested, reduction of the level of congestion can improve night breathing problems and glue ear.

See, Lexi's doctor? There are other, much nicer doctors out there telling you that you need to quit being such a jerk and prescribe one, already!

I know I've heard lots of my Ds mom friends talk about their kids' persistent ear and sinus infections. Does reading this article change your life, because you realize that maybe "mechanical extraction" might reduce the occurrence of those 2 buggers? I know I personally got super-excited about it, because I've been feeling like having a heavy-duty snot sucker might be frivolous when there are kids around the world suffering from things a lot more major than not having a heavy-duty snot sucker. The info in this article helped me realize that our Snot Sucker 2000 is medically necessary equipment. I believe it's part of the reason we were able to keep Colin from being hospitalized when he had RSV last week (is this an exaggeration? I don't know--I don't have any medically trained staff reviewing my blog posts for accuracy. HOWEVER, the past 2 doctors I've seen have asked me if I have medical training because they were so impressed with my medical savvy. That, or they were hinting that I needed to shut up because they're the doctor, not me....).

So, my point is, ask your doctor about getting one of these sweet, sweet babies (just don't ask Lexi's doctor) if your kid's too young to blow their own nose (or even if they're not. I'd love to use it on my older kids, but they wake up every time they hear it turn on next to their beds. It's kind of noisy. And they're strong enough to fight me off. Oh--that brings me to another point: Colin cries and protests for about the first 10 seconds, and then he lies pretty still in defeat. I think he knows it'll make him feel better. Or possibly he just knows resistance is futile). Your life will be the better for it, I promise. There's nothing quite so satisfying as cleaning out the depths of your little one's nasal/sinus cavities so efficiently that they cough a little from the force of the suction (note--for those of you who might point out that maybe such strong suction could harm little noses--I have a tendency to exaggerate. This is one of those times. Colin's never had a nosebleed from the SS2000, and we use it about 4-5 times a day. We just always use a little saline solution first). (Also, just as a caveat, so you can't say I didn't warn you--the snot sucker's parts need to be cleaned periodically. Like, probably more than every 5 days, unless you don't mind the smell of poo every time you turn it on. Not sure what that's all about. Maybe all bodily secretions end up smelling like poo if they're left in a tube for 5 days.... Is that really too gross? Sorry. Anyway, all you do is take the removable parts off and soak them in bleachy water for about 15 minutes--or, fill a container with bleachy water and suction it into the collection canister--and then rinse them off.)

Pet Carrot

Remember the sad tale of our frogs who croaked? I held onto their tank and stashed it in the laundry room (I have a bit of a hoarding problem, which stems from an unnatural emotional attachment to objects. But it's mostly under control, because I do get rid of things when I, A: grow tired of them being in my way, or B: watch an epsiode of Hoarders and freak out that I'm heading that direction). Last week, one of the kids filled the tank with water and stuck a carrot inside (did your preschooler ever bring home a Ziploc bag of water with a baby carrot inside as a pet, and they were supposed to sprinkle pepper in the water to feed the carrot-fish?). It's been sitting on the kitchen counter for about 5 days, and I noticed that the water was getting murkier every day.

Finally today I decided to dump the water and the carrot. I figured the murkiness was caused by the carrot decomposing or something, you know? There was also a definite, putrid smell today, emanating from the tank. I noticed as I dumped the water into the kitchen sink that it was littered with lots and LOTS of decaying fragments of frog food. What the...? I had a quick flashback to Stephen King's Pet Sematary before realizing that Dash and Violet probably hadn't come back as undead, evil frogs. That's just crazy. No, one of the kids had been feeding the carrot frog food. So bizarre, right? Do you know how many times my kids willingly and without parental pressure fed the frogs in the 7+ years we had them? MAYBE 10 times. But apparently they fed a carrot daily.

So, my point in sharing this fascinating tale with you is that if you're looking for a low-maintenance, low-guilt-inducing pet, maybe look into the carrot option. You probably wouldn't even need a tank--a cup or bowl or Ziploc bag would be perfectly adequate. But keep the frog food hidden away, or you'll have a stinky mess.

The greatest birthday wish list

Quentin handed Devin his birthday wish list last night. It's the most specific wish list I've ever seen, and it's awesome. I took a picture of it with my phone, but it's pretty hard to see. (I tried it with my camera too, and it was just as bad. I may well be the worst photographer.) I'll transcribe it for you below.

It says:

Quentin's birthday wish list     
                                              Please get me any 2 or more of the following: [smiley face]
                                              
snowboard and size 3 snowboard boots
winter coat
Hero factory (not furno bike or Balk 3.0) <---{because he already has those}
Transformers Kree-o
bicycle
Ninjago fire temple
Skateboard helmet
King size Hershey's
Mad Libs (not Christmas Edition) <---{already has it}
Halo Mega Bloks
Moon phase calender 2012 {I'm shocked that he spelled calendar wrong. The kid never spells anything wrong. Ever}
Non-electric pencil sharpener
Pencils
Erasers
Lego Harry Potter Years 1-4 for Wii
MP4 player
Small copper sheet {no idea what he means by that. I intend to find out}

                                                                              Quentin's birthday cake favorites
                                                                                 Cheese cake
                                                                                 Peanut butter bars
                                                                                 Brownies
                                                                                 Pumpkin pie
                                                                                 Spice cake
                                                                                 Peach cobbler

It's cute, right? A little greedy, but we'll forgive him because of the tremendous help it is for me in getting him something he really wants.

Colin: A birth story, part 2

OK, so, where did we leave off? Oh yes, we'd just arrived at the hospital, and Devin was wheeling me to emergency OB in a wheelchair.


So, we get up there, and the nurse checks for dilation, and says I'm at a 4. A FOUR! After all that intensity, I was expecting her to say 9, not 4. I was so sorely disappointed, and I was even thinking that they might send me home. Seriously. Because, in my experience, a 4 is nothing. A 4 is what you are for a week before you're a 5 or 6, and then a 5 or 6 is what you are for a week or 2 before REAL labor starts. I think the nurse sensed my disappointment, because she said, "Oh, no, honey, don't worry--we're admitting you. Let's just take some blood first." Then she asked me if I was going to want an epidural. Hmmm.... out of our 6 babies, I've only had 2 epidurals--the first one was with Kenneth, and it was terrible, and scared me from having one for the next couple kids, and the 2nd one (with Carinne, 3 babies later) was so beautiful, at one point I asked the nurse to go find the anesthesiologist so I could kiss him. I would have, too, but I think she realized I really meant it, and didn't find him for me. Which ended up being just fine, because I was on such a happy cloud and drifted off to blissful sleep.... But then, with Christian, there had been no time for an epidural.... So, here I was, thinking, forget this. If it's been this intense and I'm only dilated to a 4, I'm not hanging around all drug-free to find out what dilating to a 9 feels like this time. No way--I'm gettin' an epidural. So I said, "Yes, please, hook me up with that epidural." And the anesthesiologist came in after a moment and said he'd give me my epidural, just as soon as my blood work came back, to make sure my platelet counts were OK. I wanted to choke him, take his instruments, and give myself the epidural. Or have Devin do it (because that's SO much more reasonable, right?). I was HURTING, he had the means to end the hurting, and he refused to do it till my stupid bloodwork came back? The nurses told me they were mad at him for being such a prick stickler for protocol. Apparently, there are other anesthesiologists who aren't such sticklers. Guess I got lucky....

Meanwhile, the nurses wheeled me to Labor and Delivery, where I was checked again (and, it definitely bears mentioning here that there were at least 7 other people--nurses- and doctors-in-training, I think--in that room, just beyond the foot of my bed, all there to catch the show. The U of U hospital is a teaching hospital, so there can be lots of observers, if you as the patient tell them it's OK with you. I think I've mentioned before that I have no modesty when it comes to stuff like this, so I probably told them to invite anyone they could find wandering around the halls to come have a look-see...). This time, I was at a 9. It had been approximately 20 minutes since the last time they'd checked me. That's 5 cm in 20 minutes. So, Dr. Anesthesiologist came in right about that time (did you ever watch that show "Scrubs"? You know the macho, jerky, jock surgeon?

Yeah, that's the guy.

He was my anesthesiologist. Right down to the obnoxious do-rag and the sleeveless scrubs. I may have just imagined the sleeveless scrubs part, though) and announced that my blood work was back, and he could now dazzle me with his impressive epidural skills, if I'd still like one. I asked, "How long does it take for an epidural to start working?" He told me about 15 minutes. I said, "Hmm. I'll have this baby out in five. You can take your epidural and shove it up your...." I'm embellishing. I didn't say the part about shoving the epidural. Very loudly. OK, fine, not at all. But I definitely thought it. So, I'd like to imagine he walked away, all dejected-like, shoulders drooping, ripping off his do-rag and chucking it on the floor in frustration at missing out on being included in our bill. 

The nurse then checked me again and announced that I was complete. One of the doctors present (though there were several, not one of them was my perinatologist, who was home sleeping, I think. Smart lady) told me I could start pushing with the next contraction. Problem was, I didn't have another contraction. They just pretty much quit. I told her as much, and she said, "That's OK--you don't need a contraction for pushing. Just push when you feel like it." Well, previous experience has taught me that the reason you push is that the contractions make you have an intense NEED to push, right? I didn't really feel that urgency, and I knew--also from previous experience--that pushing a baby out of one's body is one of those things that's in reality even more painful than what you imagine it'll be, so I wasn't in any real hurry....

I could tell all those people in the room were watching in anticipation for me to do my thing, though, so I gathered up my strength, pushed with all my might for 10 counts, took a breath, pushed for 10 more, and repeated that a couple more times. After about the 4th push--maybe 5 minutes later--I felt the contours of my little boy squiggling through, and the next thing I knew, he was on the bed in front of me, quite calm, and blinking. It was 5:30 a.m.--not quite 3 hours since that first hellish contraction.

I couldn't stop looking at our sweet baby. I felt at that moment like the heavens had opened, depositing this little being in front of me. He was so, so tiny--and breathtakingly perfect. I didn't know what I'd been expecting for the previous 4 months since finding out he had Down syndrome. We'd also been told he had clubfeet, which isn't something that occurs very often with DS, so I think I was expecting some other weird surprise that also doesn't usually come with it. I suppose I expected him to look like.... I don't know. A miniature Quasimodo, I guess. With all sorts of deformities that couldn't have shown up on all the ultrasound images we'd seen of him. But instead, he looked almost exactly like Kenneth did at birth--same nose, same round face, definitely same upper lip... I gasped. And then I cried. Happy, elated tears. I would have loved him no matter what he looked like, of course, but this was an amazing thing. He just looked like he belonged to us, just like all of our other kids. I'd built up THE SYNDROME in my imagination till it was this huge, out-of-control monster, completely dwarfing reality. And the reality was, this was a sweet, helpless little baby who needed his mama to love and protect him. And he was absolutely mine, and I completely adored him from the moment I laid eyes on him. It was amazing to see that he knew me, too--turning toward my voice when I talked. I wanted to hold him and kiss his sweet face and whisper, "Hi there. I'm your mama," and all the other silly little things I'd whispered to our other babies when we first met. But gloved hands swooped in and whisked him away, through the window into the NICU for observation and an echocardiogram.

 

Pretty soon, 2 of the doctors were mashing on my tummy, massaging it to work the placenta loose, and intermittently pulling on the cord. It wouldn't budge, and they kept massaging and tugging, and then I noticed them exchange worried glances. One of them suggested checking me again, which the other one did. The one checking me exclaimed something like, "What the...?" Apparently, my cervix had completely clamped shut around the cord. And part of the placenta had already come out, and the other part was still attached, so I was still really bleeding. A lot. I could feel it, but I guess I'd assumed it was maybe the left-over amniotic fluid. There was a lot of rushing around, and someone told us I needed a D&C to clear out the rest of the placenta so I'd stop bleeding. The jock anesthesiologist was called back, and started to explain to me what to do while he gave me the epidural, but then, I guess they decided there was no time for one. And then everything felt like it was going in slow-motion, and that Kate Bush song, "This Woman's Work," started playing in mind. They put one of those surgery caps on me, told Devin they were wheeling me to the OR, and off we went down the hall.

When we got to the OR, they asked me to lift my rear off the bed onto the operating table. As I did so, I felt a huge whoosh of blood. I plopped back down and looked--my feet had been out in front of me, with my legs kind of curved into a diamond shape, and that whole area was a giant puddle of blood, which completely covered both of my heels. I think I may have felt faint, and muttered something about my socks getting all bloody. I remember the sweet nurses telling me not to worry, that they'd give me some new socks, as they pulled my blood-soaked ones off my feet and chucked them in the garbage. Somehow I wound up on the operating table, and they gave me some crazy drugs in my IV, which I figured out when everything went from being real to being completely, utterly, confusingly insane. Glittering, pink Tetris blocks showed up in front of my face, and they kept building higher and higher, till they formed a wall. I could hear voices behind the wall, and knew I could see who was talking to me if I could just make it past that wall. They asked me questions, and I think I answered them. And the glittery Tetris wall turned from pink, to purple, to blue, but it stubbornly stayed right in front of my face. And it was so sparkly and pretty, I had a hard time not focusing on it, and kept forgetting to try to get to the other side of it. I felt all kinds of stabbing HURT coming from my abdomen, and I heard myself moan, and maybe someone comforting me from behind that dang wall. And, eventually, the wall vanished, and I felt myself being lifted back onto the hospital bed. I think when I got back to the delivery room, Devin was back in there from having been with Colin in the NICU. He says I asked the same questions over and over, about 6 different times each. I was apparently pretty impressed with the fact that I'd lost almost 2 liters of blood. Duuuuuude. He was also kind enough to take pictures of me coming out of anesthesia, mouth hanging open, eyes all stoner-like. Oh, the horror. If I weren't so dang self-conscious, I'd post them for entertainment purposes.

So, there you go. That's how our sweet Colin made his entrance. Our little boy, whose arrival into the world showed us that absolute perfection can inhabit a body with an extra chromosome and crooked feet.

Colin at 1 month old

photo by Sarah Bush

Our birth is but a sleep and a forgetting:

The Soul that rises with us, our life’s Star,

Hath had elsewhere its setting,

And cometh from afar:

Not in entire forgetfulness,

And not in utter nakedness,

But trailing clouds of glory do we come

From God, who is our home....

~William Wordsworth