Mothering the (McKrola) Mob

Photogenic

2012-02-10T08:06:00.001-08:00

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

2012-02-09T12:36:00.000-08:00

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 (who's amazing, incredible, phenomenal, primo, prodigious, rad, remarkable, stupendous.... See how all those adjectives are in alphabetical order? I consulted an online thesaurus because all my brain could come up with was "awesome....." But seriously, I have a MAJOR doctor crush on the guy--he's just been so great to our family over the years. What was I saying before the thesaurus....? Oh yeah--) 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 (there's that word again)!" He said, "OK, then. Let's get you one." I think he could tell that I really wanted to kiss him (and I 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 EVERYTHING. They didn't deny payment on this, though, so there's still a little sliver of good in their hearts of darkness). I get to keep the Machine of Wonderment after 10 months, so I guess it's like 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 (blashpehemer) 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 a scant 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're prepared for all the snickering). 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 (I suggest reading this with your best British accent, for the greatest effect. If you're British, then obviously just use your normal voice):

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. That, or he 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, alternatively, fill a container with bleachy water and suction it into the collection canister; that method's definitely more fun--and then rinse them off.)

Pet Carrot

2011-12-06T12:47:00.001-08:00

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

2011-11-16T13:37:00.001-08:00

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

2011-09-07T21:56:00.000-07:00

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

Colin: A birth story, Part 1

2011-09-07T13:21:00.000-07:00

I don't know about you, but I love to read/hear birth stories--which is funny, right? Because there's really very little variation from one story to the next. The basic elements are like this: start contractions, go to the hospital (unless it's an induction, and then those 2 are reversed. And if it's a home birth, you just skip the hospital part altogether. And if you have the baby in the car on the way to the hospital, you'll still eventually wind up there), get an epidural or not, push the baby out. If you're having a c-section, you still end up in the hospital, and the baby still comes out. Point is, that baby's coming out, no matter what method is used. That's pretty much the point of birth. And, no matter what method is used, there will be pain, and there will be a baby. Those are the 2 invariables. But, still, humor me as I recount Colin's birth story....

It was a dark and stormy night, about 5 months ago.... Definitely dark, anyway.... And maybe snowy, too. It was a Wednesday, 5 days before I was scheduled to be induced. I'd never been induced before, and I'd only had 1 baby be born before my due date (that was Kenneth, who came a week before he was due. The others were, in order: 3 days after, 1 week after, 2 weeks after, and 3 days after). Point is, I wasn't expecting this baby to make his entrance before my induction date (which was 3 weeks before my due date, technically. The perinatologist wasn't going to mess around with waiting for labor to start on its own, since she'd been made aware that I'd shown up to my local hospital--5 minutes away from home--fully dilated and ready to push with the last baby, and Colin was to be delivered at the University of Utah hospital, an hour away from home, because a cardiologist had given us a 95% chance that he had a coarctation of the aorta, which would need repair within days of his birth at Primary Children's hospital, right next door. Also, she was mindful of the increased likelihood of the placenta breaking down prematurely, which is something that tends to happen in a good percentage of Down syndrome pregnancies, and results in increased chances for stillbirth. Remember all that?).

So, anyway, I was planning on buying his dresser and his car seat that weekend, and packing my hospital bag, so I'd be ready for the induction on Monday (procrastination usually never fails me). That day (the day of the night I'm telling you about, so Wednesday, day. Pay attention), some friends had brought me to lunch to celebrate my birthday, and I'd had a couple strong contractions while we ate--the kind that makes you stop what you're doing, close your eyes, and breathe slowly and deliberately. They got all wide-eyed and told me, "You're gonna have this baby today!" I laughed it off, since extended false labor is just part of my birthing experience. Walking around for a few weeks dilated to a 5 or 6 makes for a super-short labor, when the real thing eventually rolls around.... However, I'd been checked when I'd gone in for the version the week before, and I was only at a "big 1, small 2." That normally means nothing for me--BUT, I'm thinking that version may have had something to do with triggering real labor. Seriously, go read that blog post I linked to, if you haven't already. I'll wait right here while you do.... I don't often think of myself as being very awesome, but during that process, I was pretty amazing. Chances are pretty good that you'll come to the same conclusion.

OK, so, moving on.... I went about that day like I'd been doing every other day--basically just being big and pregnant and sore all over. And also, slightly grumpy, and definitely sloth-like in everything I did.

After we went to bed, I woke up a few times from strong contractions, but went right back to sleep afterwards, so that I almost didn't remember I'd had any. But THEN.... Oh, THEN, things completely changed. I woke up at 2:45 with the most intense contraction.... and it didn't ever seem to go away. It was big and powerful, and gave me the strongest urge to.... ahem.... go sit on the toilet. And this was a pumped-up contraction on steroids, and it never seemed to ease up, I'm telling you. But somehow, I made it from the bed to the toilet, and I sat there, waiting for this contraction to mellow the heck out so I could at least move, for the love of all that is good. I felt paralyzed on the toilet, and I started to feel very afraid that I'd get stuck there from the crippling pain, and that the baby would be born into the toilet, if this contraction wouldn't go the hell away (that's happened to people. Ever watch "I Didn't Know I Was Pregnant" on TLC? Also, yes, at this point, I was swearing in my mind a little). I found this graph online, which has nothing to do with contractions, but which adequately demonstrates what I'm trying to convey here (ignore the numbers and the "10-year yield," even though it did feel like the yield from this contraction would last a full 10 years, at least):

See how it goes up, then pretends to go back down, but then sneakily goes right back up again? Even higher than it was before? That's what this contraction did. It was the craziest thing, and I actually spent some moments contemplating how very crazy it was. But mostly, I just waited for a downward dip that was long enough to get me from the toilet back to the bed so I could wake up Devin and tell him we needed to go to the hospital. (In retrospect, that was super considerate of me. I could've just hollered, "I'm in labor! Help me got off this *#%& toilet!" But people were sleeping, and I didn't want to disturb anyone.) I eventually made it there, and fell onto the bed next to him: "Devin, I'm not sure, but I think I'm probably in labor. Like, real labor. I'm having a horrible contraction that won't go away." Without moving--not even his lips, I think--he mumbled, "Take some deep breaths." So I humored him and took a few deep breaths. The contraction stayed. Really. I mean it when I say that this was all one big contraction that never really went away--it just hovered and dipped and shot back up again. So I whispered, "That's not really working. I'm still contracting." Devin, in his annoyed voice, said, "Are you breathing? ...Deep breath in.... And deep breath out..." And those ellipses in there? That's where he snored a little. (In his defense, he's been around for all of my false-labor experiences, and some of them lasted up to 12 hours, and none of them, besides Kenneth, our oldest--the one who came a little early, remember?--ended in us driving to the hospital....) "Devin...." I said, cautiously (cautiously, because Asleep Devin is much less easygoing than Awake Devin), "We need to go to the hospital. But I can't get up, so I'm gonna need you to get me some clothes from on top of the dryer [laundry was another of those things I was planning on doing over the weekend]...." Devin responded with a snore. "Babe! Did you hear me?" "Yeah, hang on," he mumbled, and rolled out of bed and shuffled out of our room. A couple minutes later, he shuffled back in, empty-handed. "Babe, you forgot my clothes" (imagine that as being all breathy and a little panicky and angry and really drawn out, because my uterus was still a tight ball of intense pain and fury, and my back had joined the pain party, too)." "Oh.... Well, are you sure we need to go, or should we wait and see if it calms down?" It's a good thing humans haven't evolved to shoot lasers out our eyes (but wouldn't that be so awesome?), because Devin would've been charred right there where he stood. "No... [the ellipses here stand for me panting or groaning] I think... this is for real. It's so... intense, and it's just... not... letting up. Go get me... my X t-shirt... and my Y sweats, and I'll... call the hospital... and tell them... we're coming in." So he left again, with slightly more purpose, and when he came back (with my clothes this time, bless him), I was doubled up on the floor with the phone to my ear, trying to tell the emergency OB nurse at the U of U that what I had going on, no human had ever before experienced in the history of childbirth. Not really, but I think it was pretty clear to her that I meant business. She said, "Well, honey, you need to get to A hospital, even if it's not down here. Now get going! GET!" (or something to that effect). Devin helped dress me, but even in labor, women are just better than guys are at hooking a bra (and, seriously, unhooking them too, most likely.) He asked if I wanted him to pack anything, like a toothbrush. "No time... just grab... the camera." He helped me out to the car, and off we went into the night (oh, and Devin's awesome cousin Nicole was living with us at the time, so we didn't even have to wake anyone up in the middle of the night to come stay with the kids. Bonus!).

The contraction(s? Not really--I still think it was the same bugger contraction I'd been dealing with the whole time) was/were so intense, we weren't sure we'd make it an hour to the hospital, without stopping on the way to birth the baby. So, when we got to the intersection at the bottom of our neighborhood--where turning left takes you to our little hospital, and turning right takes you down the canyon to the U of U hospital--Devin turned to me and said, "What do you think? Should we try to make it to Salt Lake?" I pictured having the baby in Heber, and having him loaded onto the Life Flight helicopter immediately afterward, while I was stuck in Heber without him. That option was immensely displeasing. "No, just go for it. We can make it." I closed my eyes, and started intensely praying that labor would slow down just long enough to make it to the hospital. And, I'm telling you now, a little miracle occurred, and that's exactly what happened. Devin timed them at 5-7 minutes apart, the whole way down the canyon. I even started to wonder if this was another false-labor episode, and felt stupid for freaking out so much, when we may just end up being sent right back home by condescending nurses....

Fortunately for my pride, the contractions picked right back up again pretty much the moment we were in sight of the hospital. I'm not making that part up. It was wild. Devin loaded me into a wheelchair, and raced me through the halls to the emergency OB department.

And, that's where I'll end this portion of my account, mostly because I'm sure you're tired of reading about it by this point, and maybe you have laundry to do or a meal to make or grout to scrub. So, you go do that stuff, and I'll work on writing the next part, and we can meet up again right here....

A tragic end...

2011-08-31T11:03:00.000-07:00

Seven years ago, when my 3 oldest were little, and I was pregnant with my 4th, Kenneth and Camille won 2 African dwarf frogs at a carnival booth. This is what those look like:

They're teeny-tiny--they can fit on an adult finger (not that I ever tried that--God did not intend for slimy, squirmy animals to be handled by human hands)--and completely aquatic. The stuff I found online about these frogs said that their average lifespan is 2-3 years. Perfect, I thought. I can totally handle 2 years of these little things....

The kids named their frogs Dash and Violet, and swore their undying love and endless devotion to their care.... "undying" and "endless" meaning about 2 weeks, roughly translated to Adult English. I'm sure that at this point, a lot of mothers would have decided the frogs just weren't worth the effort, and Dash and Violet would've reached the big pond in the sky, by way of the toilet. But not me! I'm motivated almost entirely by avoidance of guilt--and flushing the frogs just seemed too, too cruel. So the frogs stayed. They were kept in a little tank with no filter, so their water needed to be changed weekly. If you've ever been to a swamp--where decay and perpetual wet create a most odoriferous environment--you may be able to appreciate to a very minor degree how very STANKY these frogs' water was. It was so horrific, in fact, that I was mostly incapable of avoiding violent, bone-shaking, bladder-busting vomiting when I changed their water during the first 5 nausea-filled months of each subsequent pregnancy (the kids took over the task--mostly--during this last pregnancy, thank goodness. I asked Devin to do it, and he delegated the task to them. I think Devin changed it MAYBE once in the past 7 years, always refusing the opportunity and stating that if he were in charge of the frogs, he'd choose flushing them over cleaning their stupid tank. Mmm-hmmm.... Classic male chore avoidance, is what that is). The stench of their used water had me contemplating finding them a new home (or, "finding them a new home," if you catch my meaning) every time I changed it. But, I was stubbornly committed to their well-being, and soldiered through. I also fed them and found people to care for them when we went on vacation.

I was frequently annoyed by those frogs' very existence, but I daresay I was also pretty devoted to them and intrigued by their aquatic frogginess. The kids and I enjoyed watching them do their thing, which was mostly darting around the tank and hiding under the rocks. Oh, and shedding their skins. The fact that they'd lived about 4 or 5 years longer than I'd expected was frustrating at times--because I sometimes felt ready for them to, well, croak, but then, I also felt like I was a pretty amazing caretaker if I could take a 2- to 3-year lifespan and stretch it out to SEVEN!

....But, well, OK, when they reached the 5-year mark, I went back online for some research because I was curious to know if they were the longest-living African Dwarf Frogs ever to have lived in captivity. Turns out their lifespan is more like 5-7 years. I see.... Makes sense, because how great of a caretaker was I, really, when I occasionally forgot to feed them for a day (or 2)? And also sometimes went 2 1/2 weeks without changing their nasty water (that's only happened during pregnancy, or with a new baby at home). When you can't even see the frogs for all the murkiness of their water, that's probably not super-healthy living conditions. Even if Devin liked to point out that the African ponds their ancestors lived in were most likely not clear, pristine waters.... But, still--they'd made it to the very upper limit of even the 5-7 year lifespan. And that's not nothing, let me tell you. I was excited to see how much longer they could defy the odds. They'd never had any of the weird sicknesses I'd read about online, and Dash had even lost a hand, Aron Ralston-style, when it apparently got pinned under one of the rocks--but survived to tell the tale, so to speak.

Last night, it was Quentin's turn to change their water. He successfully fished out all the rocks and washed them off, and caught the frogs in the little fish net. He plopped them into an Olive Garden kid's cup and asked for my help in dumping out the nasty tank water without letting the little rocks tumble out and down the kitchen sink drain (he'd learned from experience that when that happens, the little rocks get wedged under the garbage disposal blades, and Dad gets reeeeeally annoyed and lecture-y). In retrospect, I maybe should have stepped in at that point and transferred them to their usual mug--the one we always stick them in when we're changing their water. It's a big, wide-mouth soup mug, and it's universally recognized by all McKrolas as the frogs' tank-cleaning mug. But, I figured it wasn't that important, since we'd just clean out the tank right then and they'd be back in their home in a jiffy..... And that's where things started to go horribly, tragically awry. I've replayed the subsequent events over and over in my mind, and this is how it went down: Baby Colin woke up at that point, starving to DEATH, so I told Quentin to hang tight for a minute while I fed Colin. We could finish afterwards. But then, dinner needed to be made for the rest of us, so we put off the cleaning again. Dash and Violet were contentedly pooping and shedding skin in their Olive Garden cup, and several of the kids watched them for a little while--even asking, "Mom, why are they in THIS cup instead of the other one?" After dinner, I was downright done with kids being awake, so I sent them all to get ready for bed. Once they were in pj's, Devin called them back upstairs to FINISH CLEANING THIS KITCHEN! I was somewhere else, doing important things, I'm sure, and the frogs weren't at the forefront of my brain....

But THEN, when kids were all in bed and I had a free minute, I remembered the unfinished tank clean-up and headed to the kitchen. When I got there, everything had been cleaned up and the dishwasher was running--and the frogs' cup was nowhere to be seen. Oh, nooooo.... I went and asked Devin if he'd seen the Olive Garden cup that had been by the kitchen sink, because the frogs had been in there, and it was now gone. He gave me a look, and said, "No.... Do you think one of the kids dumped it by accident when they were loading the dishwasher?" Yeah, the thought had occurred to me.... I begged him to please go look in the sink for me, since finding and disposing of carcasses is totally the man's job. The dang kids had left the bigger pots and pans in the sink, soaking, instead of actually washing them like they're supposed to. Violet was floating at the top of one of the pots, and for a second, I felt relieved--she was in the water! They're aquatic frogs! Maybe she's OK! ....Nope, not OK. Big and bloated. And very much dead. The pot had been filled with HOT water, so she'd basically cooked in there. Oh, the horror! Devin set her aside and got the rest of the pans out of the sink, inspecting each one for Dash's carcass. He found it--down the drain, resting on the garbage-disposal blade. I couldn't take it. I started weeping. Over a FROG. A stupid, stinky frog that had lived 7 freaking years when I thought it'd live 2, tops.

I cried myself to sleep last night. Is that the most pathetic thing you've ever heard? I never thought I had that kind of love in my heart for those dang frogs. I do feel a big sense of loss, because I took care of those things! For 7 years! They were part of the family!

But, I think what hit me hardest in my despair is that it's not just the little frogs in our care who've died recently--remember our 9 little chickens who got devoured by some horrible beast that got into their coop? Because we'd never gotten around to fully securing all the openings with chicken wire? We were stewards over those chickens, and the 2 little frogs, and we FAILED them all. We are the worst stewards ever. The frogs dying, in my mind, is so heart-rending not only because they'd become such a normal part of our lives and family, but because their demise didn't have to be tragic and yucky. Their death could have been avoided if whoever carelessly dumped out that cup (without even noticing 2 frogs plunking out into the water) had slowed down. Paid more attention to what he/she was doing (no one has admitted responsibility, by the way. None of the kids did it, though they were all very quick to point the finger of blame at each other. So.... I'm supposed to believe... what, exactly? That the frogs jumped out of the cup, stuck it in the dishwasher to tidy up after themselves, and then plunged to their deaths in the sink? They were done living and made a suicide pact?).

That right there is the part that makes me the saddest. That, in spite of our recent, diligent efforts to motivate them for good, these kids are still stuck in this irritating pattern of irresponsibility and carelessness. I suppose it'll just take some more time to usher them from their (innate? learned?) delinquency to our ultimate goal of Responsible Contributors to Society. I'm sure we'll get there eventually--I already have noticed improvement in certain areas. I just hope there's no more loss of life or limb on our way to that destination....

My Little Sister. A Tribute

2011-07-01T16:36:00.000-07:00

Someone posted on their Facebook status that it's International Sisters Week this week (does that really exist, or is it just one of those crazy myths perpetuated through Facebook status updates, like the one about how Facebook is shutting down on such-and-such date? Or that they're starting to charge users a monthly fee? I couldn't find anything on snopes.com about Sisters Week). Even if it's not Sisters Week, I've decided I need to pay tribute to my one-and-only sister who has the honor of sharing my same blood. Although we're not blood sisters. I think I do have a couple of those from middle-school days, though. Maybe that's why I have dreams about people I don't know--because I'm dreaming my blood sisters' dreams....

Anyway--you know how I'm really awesome? I am. REALLY awesome. Well, pretty awesome, anyway. But definitely not even close to as awesome as my little sister, Céline. She's 2 years younger than I (that really is grammatically correct, I promise. Because you wouldn't say, "2 years younger than me am." That's just goofy. It's "2 years younger than I am," and then you drop the "am." I agree that it does sound a little pretentious. I don't make the rules, but, by golly, I follow them. And also enforce them as much as possible). She is superior to me in every conceivable way. I'm not even kidding you. She's like Melissa version 2.0. It's as though my parents created me, realized they could do a lot better, figured out all my glitches and bugs, hammered them out, and then produced her with a cleaned-up, souped-up gene cocktail.

Here's what she looks like:

Isn't she pretty? (That's her youngest, Zachary, sitting on her lap gnawing on her [stylish] purse strap. He's adorable, too, huh?) See how stylish and perfectly accessorized she is? How even Zachary's eyes and clothes coordinate with her ensemble? That's just how she rolls. She oozes--or maybe just exudes--classic style and grace. And, as further evidence of her awesomeness, look where she is. The cafeteria at IKEA. At least that's what it looks like to me. (I didn't take this picture. I e-mailed her and told her to send me a couple pictures, and she did. Sometimes she does what I tell her. But mostly I do what she tells me. She's a little intimidating.) I started salivating as soon as I saw the tell-tale IKEA signs in the background. Great style and selection at amazing prices tends to do that to me. Which reminds me--one of Céline's innumerable gifts is bargain-hunting. The girl knows how to SHOP! She finds the best deals on the most amazing things, from clothes and accessories to home décor. She re-purposes and embellishes and re-paints to take a thrift-store find from junky to fabulous. You should see her house! So, SO pretty--even down to the playroom in the basement. I wish I had pictures.... She has amazing vision, and every room in her house is fun and unique--and created entirely by her blood, sweat, and perfectly salted tears (interesting side note: she does have 2 faulty tear ducts, just in case you were wondering if she's entirely perfect. Oh, and she needs glasses or contacts to see clearly. That's one thing my parents didn't improve on--I've got 20/20 vision). Also, she sews. I sew, too, but she SEWS. She's really good at it, and the stuff she sews doesn't look AT ALL like one of her kids did it. She makes dresses and Halloween costumes and curtains. AND SHE FINISHES THEM--in contrast, I have about 523 projects in various stages of completion, but not one of them is finished.

So, anyway, here's a photo of her family:

Have you ever seen a more adorable family? No, you have not.

And check out this photo of just her cute kids:

Cute, cute, cute, and more cute.

So, pretty much our whole lives have played out like this: I take an interest in something and desire it to be one of my talents; Céline also takes an interest in it, and then completely dominates it. For real! That's how it was with track, dance, drama, choir... everything! Our entire childhood was a series of her passing me up in one thing after another. (She even outperformed me in puberty--blossoming earlier and..... more thoroughly than I ever did. [sorry to be so embarrassing, Céline] She's also 3 whole inches taller than I am. Bigger and better all the way around, I tell you!)

This pattern continued even after high school: I dreamed of doing a semester abroad during college, but was too chicken to go for it. Céline dreamed of doing it, and then actually made it happen--she spent a semester at BYU-Hawaii (that's considered "abroad," isn't it? You have to fly over an ocean to get there...). So cool! She was also a lifeguard at Seven Peaks. She got all tan and got to hang out with the equally tan boy lifeguards. I don't tan--I freckle. And I've never had a job as cool as saving lives. A paid job, saving strangers' lives, anyway (I've saved my own family from perilous situations before. Specific examples elude me for the moment, however...).

My point in all of this is...... Well, I suppose it's that, while I spent a lot of time and energy being insanely jealous of my little sister in my younger years, I've grown and matured and come to realize: "Don't be jealous. Use her superior talent to your own advantage. Mwahahaha!" But not like that, in an evil way--in a good, productive way. I can definitely copycat her decorating ideas, and definitely, definitely take her clothes-shopping with me. I suppose I really am old enough and mature enough and definitely wise enough to realize that my little sister being so crazy-talented at so many things is pretty incredible, without feeling jealous or resentful. I can just admire her skill. And I do. I stand in awe of her. She dreams and accomplishes so much. I truly admire her and every stinkin' skill she's developed and honed. She's the greatest daughter, wife, and mother, in addition to being the best little sister. I love that she has my back in any given situation and will either smack me back to reality, or gently comfort and encourage me--whichever I happen to need most. I'm honored and proud to be her big sister, and I'll gladly stand in her shadow any day (It's a pretty large shadow, too--did I mention she's 3 inches taller than I am?). Happy (real or fake) Sisters Week, Céline! I love you!

PS: I should point out that I do realize that I, too, have unique gifts and talents, that I shouldn't compare myself or my talents to my sister and hers, that our parents really do love us equally, etc. I'm just havin' fun.

Crooky feet repair

2011-05-24T08:51:00.000-07:00

Sometimes moms make their kids do unpleasant things for their own good; like eat their veggies. I do that. Except for beets. I'm still not convinced beets were intended by God for human consumption. As a natural dye or something, maybe. So, in addition to making my kids eat their veggies--and also bathe regularly--I'm forcing my helpless baby boy to have his clubfeet repaired. This is a gradual process, involving serial casting, a little surgery, another set of casts, and then--the culmination of so much awesomeness--the ugliest brace/boots & bar thingy, to be worn for about 3 years. If his little feet weren't corrected, it would be all kinds of terrible--he'd have to walk on the sides of his feet and become a cripple, basically. I'm not even making that up--that's what happens in third world countries. So, obviously, they need to be fixed.
Here's a picture of Shriners Hospital, Salt Lake City:

It's a lovely place, with huge, immaculate grounds. Also, it's in the Federal Heights neighborhood, which is so gorgeous I slow down to 15 mph through there so I can have a good look at all the amazing landscaping in the yards (even when I'm running late, which is all 3 times we've been there now).

According to parents around the country (and my friend Angela, who's a nurse there), the clubfoot clinic at Shriners Hospital is THE place to have clubfeet repaired. They're the best, Jerry, the BEST. And we just happen to have a Shriners Hospital right down the road, in Salt Lake City. It's only an hour away! People come from all the surrounding states to have orthopedic needs taken care of at this awesome hospital. Shriners is so great, with healing going on all over the place. But, because it is a hospital, there are also a whole bunch of sick and disabled kids there. It breaks my heart. I've seen so many kids confined to wheelchairs--which a lot of them will never get to leave. I met a 13-year-old boy from Colorado whose leg had been amputated when he was an infant and who now has a prosthetic leg (which doesn't keep him from playing basketball in the Paralympics! So cool!). And a beautiful 16-month-old baby girl who can't sit up or hold her head up or push up on all fours or stand or crawl or walk, and the doctors are stumped--they've done MRIs and genetic testing and a bunch of other tests and still don't know what's going on with her. And a lady with a sweet little boy with some kind of chromosome deletion, which causes a whole laundry list of problems. (And get this, she's trying to adopt him for her very own! So sweet.) Each time I've been there I count my blessings that it's just my little boy's feet that are involved, and that they can be fixed.

Colin's little crooky feet. I think they're adorable, albeit not super useful in a number of ways. They were so perfect for cradling his little bum when he slept, though!

So, obviously, in relation to a lot of the BIG stuff going on at Shriners, Colin's clubfoot treatment is dang minor. I still don't like it, though. Don't like it one bit. Hate it, actually..... but then I'm also such a sucker for medical procedures, I thought I'd document the process.

Colin and I go down every Monday morning (every week for about 5-6 weeks. His 3rd set was done yesterday), which is when they hold the clubfoot clinic. While he's still asleep, I switch his oxygen tanks over from the big one on wheels to the little one in the striking shoulder bag (black, so it goes with any outfit. Especially my sweats!), then stick him in his car seat--jammies and loaded pee diaper and all--and we're on our way. I cry, off and on, the whole way down the canyon, picturing him snoozing away peacefully in his car seat behind me. He has no idea he's even out of his bed, I imagine, let alone heading down to his very least favorite part of the week (ranking even below waking up hungry AND the changing of the super-sticky nasal cannula tape on his cheeks--OUCH!)

When we get to the hospital and check in, we sit in the waiting area and I visit with the other clubfoot parents who are there with their little ones. It's nice to have other people who are going through the same thing--misery loves company and all that, right? We compare notes and give each other encouragement for today's casting. We feel super jealous of the mom whose baby is getting his final casts. We smile and tell her good luck and that we're happy for her, and inside, we seethe with envy.

Colin and I get called back to a room, where the nurse cuts the casts off with this hand-held circular saw. It frightens me, even though it doesn't spin like a Skilsaw; it vibrates (forgive me if this is just so obvious--hard as it may be to imagine, this is my very first experience with casts. But we just got a trampoline, so maybe this is just a preview). Last week the nurse showed me how safe it is by touching it to his fingers. What would you expect to happen after that little demonstration? He cut my baby with it, obviously! Nicked his leg. There was blood, and Colin screamed, and I cried. This almost never happens, I'm told.

Here's a different nurse, cutting his casts off yesterday. She didn't cut him. Bless her!

They cut up one side and down the other. It's loud, and they told me I could cover his ears so he won't be scared. He flinches a little when they turn the saw on and start cutting, but he doesn't cry. He's unbelievably patient, this kid.

Then, they crack the casts open with a splitter-opener thing. It sounds really cool, like cracking into a lobster, sort of:

At this point I'm getting pretty excited, because I get to see his little feet and legs for awhile!

The photographer guy comes and snaps a few photos of his feet so they can document the progress (they told me I could get copies when we're all done, but I took a few pictures last week anyhow). He takes a few--a couple laying on his tummy and a couple on his back. This is before the very first set of casts:

What are those little chicken legs for, if not for nibbling? Right?

So, after the casts are off and they remind me not to handle his legs too much or too roughly because they're super-sensitive from not being exposed to the air all week or something, we head to the casting room, where they let you bathe your baby before the casting! In a baby tub in the sink! Oh, the joy!

Here's little Colin, getting ready for his bath. He doesn't quite know what to do with his legs. He actually keeps them really straight most of the time, I think because they're bent when they're casted, and he likes how it feels to straighten them out. That's why I would do it, anyway.

The joy of taking a real bath:

(The color on this is so weird. Not sure what I did wrong...)
Well, joy for me, anyway. Colin wasn't so sure he liked it all that much. PS: It's really hard to record video on the iPhone and keep a baby from drowning in a tub, all at the same time. And also, cover up his private bits. I couldn't find the waschcloths yesterday to serve that purpose.

I wish I could linger at the bath area for a long while, but others behind me are waiting, so I get moved on to the casting table area.

Here, the orthopedic people have created as relaxing an atmosphere as possible. There's Bob Marley playing on a boom box, and the doctors and nurses pass around a joint. (Only kidding about the joint. But I love Bob Marley, and now Colin will probably hate him because reggae will forever = extreme discomfort in his sub-conscience.)

For the casting, they use this fluffy bandage wrap first--as an illusion of comfort and softness, is what I figure. They hold Colin's foot in the correct position--pulling it a little farther out each week to gradually stretch and lengthen the tight, too-short ligaments that pull his foot inward. And they wrap that fluffy bandage WAAAY tighter than can possibly be comfortable. Then they do the plaster part. They use really warm water, and I hope that it feels like a luxurious, warm mud wrap. This is your weekly spa treatment, little buddy. Colin sucks, sucks, sucks really hard on his binkie, closes his eyes tight, and tries to find his happy place.

His eyes are open in this photo, obviously. Usually, I'm right by his head, holding both hands to his chest. He nuzzles his head into me and tries to forget what's going on with his legs. He's such a sweet boy (the doctor told me yesterday he's her favorite patient. I'm sure she says that to all the moms, but I'm going to pretend he's her only)! They cast all the way to his groin, which makes for great messes when he has a forceful, abundant bowel movement....

Here he is, all done and ready to go home! The plaster takes several hours to dry completely. In the meantime, it draws like chalk all over everything the casts come into contact with, and bits flake off all over, especially inside his diaper somehow. Such a mess!

I wonder, if they made the casts flesh-colored, would it still be so sad...?
Oh, and see the little #1s on the casts? The photographer guy writes those on them and snaps a couple more pictures. My big kids sign their names (and the kitty's) on them when they get home from school.

So, there you have it. He gets 5-6 sets of weekly casts. With the 1st set, his toes were still slightly turned in, and then they gradually turn them out, with each new set, till, with the last set, his toes will be turned out like a ballet dancer's, or a duck or something. Here's a picture of the Ponseti casting sequence, which is the gold standard used in clubfoot correction:

After the casts, the Achilles tenotomy (where they cut the too-tight Achilles tendon, which makes the foot point down. If they left it alone, I guess he'd wind up walking on his tiptoes, maybe?), then one set of casts after that (which flexes the foot, and which they leave on for 3-4 weeks. The ends of the Achilles tendon grow back together, "like a salamander tail," as someone explained to me. Crazy, huh?), and finally, the boots-and-bar brace till he's about 3 years old. At the end, he will have "a functional foot. Not a perfect foot, but it'll be functional." This is what an orthopedic surgeon told me in a consultation in the NICU. Can you imagine how excited that glowing promise made me? The rapturous stirrings in my breast? It's the foot every mother dreams of for her children: the functional foot!

But, in all seriousness, it's pretty incredible that they can take little crooked, deformed feet, and fix them right up so that one day my little boy can run and jump and play. I realize that these couple months of casting are less than a blip on the radar of Colin's life. And even the 3 years of wearing the braces will be just barely a blip, right? I can handle less than a blip and barely a blip, no problem!

Sister Taylor's blanket

2011-05-17T12:00:00.000-07:00

Seven weeks ago tomorrow I gave birth to our 6th baby. We'd found out that he had Down syndrome at about 17 weeks' gestation, with an amnio. That started me down a dark, terrifying spiral. My imagination, all bloated up with crazy pregnancy hormones, went wild imagining how truly horrible having a chromosomally abnormal child would most certainly be. It didn't matter how many people told me it'd all be fine, that I'd love this little boy and that he'd bring me immeasurable joy--even people who had their own children with Down syndrome. Didn't matter. This baby was defective, and I couldn't possibly handle raising him. There were a number of dark moments where I wished and prayed for a miscarriage, because I thought it'd be easier to have a little angel baby in heaven waiting for me than it would be to have him here in his "imperfect" state. I wallowed in dark, miserable self-pity. I felt like I'd never be happy again. My misery painted everything in my life, till I couldn't see things as they really were anymore. It was so very, very ugly. I'm not proud to admit all of this, not one bit. It's pretty shameful, I know. But then, I've never been one to NOT over-dramatize a situation.

So, anyway, one morning soon after we'd received the amnio results, after a terrible night crying myself to sleep and begging God to just take it all away, a sweet friend, Mary Taylor, knocked on the door. She had a beautiful white blanket she'd made, and a card to go with it. She told me, with tears in her eyes, to read what she'd written about this little white blanket and gave me a hug. The message she'd written was so sweet. It seems that she'd prayed for an opportunity to serve someone in some way, and she'd felt impressed to make a baby blanket. So she bought the fabric and began making it, not knowing who it would be for. She didn't complete it right away, and put it back on the shelf to finish sometime later. There it sat for a few months, until one day she felt like she needed to take it down and finish it. She finished it up and tied it with a pretty ribbon and stuck it back on the shelf, still not knowing who it was for. Soon afterward, her husband (our bishop) told her that our family had just recently found out that our baby would be born with Down syndrome. It hit her--the blanket was for us! She showed up on my doorstep holding it. I answered the door, all swollen-eyed and exhausted from so much crying. When she told me the story about making the blanket, and knowing it was for me, I started to cry again. Here I'd spent the night before feeling so devastatingly sorry for myself and begging God for relief--including taking this "defective" baby from me--and she showed up in the morning with a blanket she'd made for him? It was too much to handle. It was such a clear, distinct sign to me that this baby was meant to be here, that his life would be meaningful and perfect and so worth it.

I still had a lot of pain and worry throughout my pregnancy, where I forgot this sweet message I'd received and returned to my feeling of doubt, worry, and fear, but so many times I was able to pull out that little blanket and snuggle it close and remember that a loving Heavenly Father had promised me that this baby would be a special gift. Now that my sweet little boy is here, I still have moments of worrying about his future. And now I have him--my sweet, perfect little boy--as a reminder of God's promise. Perfect, even with his baby acne and oxygen tank and big, clunky casts and beautiful slanted eyes. When I start to feel anxiety about him or his future, I hold him so close to me and breathe his sweet, milky baby smell, and feel God's love for me--and for him--so deep and real and comforting. And I know, no matter what happens in his life, this little boy is so, so worth it.

Future player?

2011-04-11T17:36:00.000-07:00

Yesterday while helping one of my kids clean his room, I came across a top-secret journal, but because I have no scruples or respect for my kids' privacy, I'm sharing something I found in it with you. It's too funny not to share.

On one side of a page was a heart with [my kid] + [cute girl in his class]--see? Maybe I'm not completely heartless if I don't divulge names--written on it. On the other was a detailed, 4-step plan of action:

Plan A: Get close to [cute girl] and kiss her. FAIL

Plan B: Tell her to close her eyes and kiss her. FAIL

Plan C: Tell her to come really close to you, then kiss her. FAIL

Plan D: Pretend to tell her a secret, then kiss her. IN PROGRESS

News from the NICU

2011-04-08T09:08:00.000-07:00

Last night was so incredibly discouraging. I'd fought pretty much all day (nicely) with the nurse practitioners, who insisted they'd NEVER let our baby out of the hospital with an NG tube. So then I demanded (nicely again) that they take the NG tube out and let the boy prove himself. His nursing and bottle-feeding sessions were vigorous but short-lived--he zonked out really quickly and was impossible to wake up to keep eating. I still maintained that he'd do better at home--that he's not sick and just needs some time to figure things out. I pleaded with them to let me take him home, promising that I'd get a home health care nurse, or take him to the pediatrician for weekly weigh-ins. Not good enough for the NICU Nazis. So then I tried asking them to let him come home with the NG tube, if need be. My pediatrician had already told the attending that he'd be willing to help with that. Absolutely not--apparently the attending physician who's on this week has only sent ONE baby home with a tube, and my baby's supposedly a terrible candidate for one because of his low tone. (Can I just insert here that with as many times as they reminded me my son has Down syndrome, so his needs are different than a "normal" baby's, I wanted to scream? I'm well aware of ALL the different things that come with Down syndrome--I've been researching and studying and talking to tons of other moms for months and months. I'm not going into this blindly.)
My baby's nurse that day was such a grouch! She saw me crying in my chair and told me all kinds of super-unhelpful, non-uplifting things--"Look how his saturation levels are dropping (even though I'd been told by several nurse practitioners that the pulse oximeter is notoriously unreliable when the baby's moving, or the plug isn't on a flat surface).... You need the blow-by (oxygen mask). You know, most babies here have the nasal cannula for oxygen. None of this business with the head box or blow-by. No need to mess with those things." When I told her the head box was mostly for humidity because his nose gets really stuffy, and that they took him off the nasal cannula days ago because his oxygen saturations were consistently too high with it on, she said, "Oh, really?" sarcastically, and shook her head... And here's more from our own Nurse Ratched: "He only nursed for a few minutes, huh? So we probably don't even need to weigh him again" (again, voice dripping with contempt, or sarcasm, or something negative). Then she asked if we could finish his feed with the tube, which is when I basically begged to have the tube taken out. She went and asked the nurse practitioner for permission, and then came back and said, "You want the tube out? Here you go," and roughly wiped his little face with adhesive remover while tugging on the tape. She had been told by the nurse practitioner to wait till he'd digested his last feeding so he wouldn't spit up, but she did it immediately. I SWEAR the feeling I got from her was total spite. Then, as I was sitting in my chair crying after a disappointing discussion with the nurse practitioner, she said, "You know, you COULD sign him out of here AMA if you're so anxious to get him home. But then the hospital would sue you and come after you for all the money you owe them for his stay here. I can guarantee your insurance wouldn't cover anything if you did that. But, it's an option you might not have thought of." I heard her complain about one of the babies in her charge to one of the other nurses. That just cemented in my mind that she was either having a REALLY bad day, or she should maybe look into another profession. She is NOT my favorite nurse, and I'm praying she's not on today....
So, anyway, during and after his last feeding of the day before I came home, his oxygen saturations dropped to the high 50s a number of times, he stopped breathing at least 5 times (apnea), and he had 2 "A & Bs"--oxygen sats dropped AND heart rate dropped to the low 70s. SCARY! I had requested that he be allowed to sleep as long as he wanted between feedings during the night instead of being woken up every 3 hours (who wants to start THAT schedule before he comes home, right? And also, then he could be well-rested for daytime feedings), and the (nice, sweet, compassionate) night nurse said the longest they'd let him go would be 5 hours between feedings, but she'd let him go that long. She told me he hadn't had many wet diapers, that he'd lost weight since yesterday, that he'd needed oxygen through the night before as he slept, and that those things combined with last night's "episodes" were his signals that he was still too weak for oral feedings (all of this was said with empathy and kindness, I should add. She apologized for bringing up that possibility, and said she was just trying to prepare me in case they needed to place the NG tube again.). She said she'd try her best with the bottle-feeding on demand through the night.
I left the hospital scared and sobered and so, so upset. Another month of leaving the big kids to go practice feeding the littlest one loomed ahead, and I felt completely deflated.
Fast-forward to this morning, when the phone rang. The caller ID showed it was the hospital, and my stomach lurched. What bad news were they calling with? It was today's nurse practitioner. "Mrs. McKrola, let's get this boy out of here." WHAT?!?! Not even CLOSE to what I was expecting to hear! I was too shocked to ask what brought about this drastic change of heart. She told me to bring his car seat today to see if he'd pass the car seat test, and then we could consider discharging him sometime tomorrow (IF he does well today)! She said they'd teach me how to place the NG tube and check for placement, and he could come home with oxygen, too (for sleeping and eating). I told her I wasn't expecting any of this, considering what a tough time we'd had yesterday. She said those were all feeding-related episodes, and since I'll be with him as he eats, it would be fine.
Isn't it incredible how quickly things can change (it's quite possible that my constant praying all day yesterday had something to do with it, don't you think?)? I'm off to the hospital to hang out with the little dude. I have so many questions. The answers don't really matter too much, as long as I can bring my boy home, but I'm still curious.... Does this mean he did great during the nighttime and morning feedings? Did they finally get to chat with their lawyers to see what their liability would be, and what waivers they needed me to sign?
PS: I just want to add that I'm not a total crazy person and won't insist on bringing him home if he doesn't seem ready.

NICU black hole

2011-04-07T08:21:00.000-07:00

Our little boy is SO ready to come home from the NICU! He's completely off oxygen, his jaundice is pretty much gone (bilirubin levels are veeeery close to normal--nothing even close to requiring phototherapy), his blood counts are all normal, he's back up to birthweight (actually one ounce over--5 lbs. 10 oz.), he's got no more IVs in his hands, and he's maintaining his body temperature on his own.

The reason he was admitted to the NICU in the first place was for his suspected heart defect. They've ruled that out (yippee!!!), so what's the deal? Why is he still in there??? Devin and I asked the charge nurse practitioner a couple nights ago why he was still there, since he seems like he may just be the healthiest baby in there, even with his extra chromosome ("genetic enhancement"). She agreed with that, but said he needs to be able to take 100% of his feedings orally before they'll remove the NG tube (the feeding tube in his nose) and send him home. I've tried nursing him about 4-5 times a day for the past few days (he's on an every-3-hours schedule), and he IS really sleepy and hard to wake up before and during, but he's so good at it once he gets going.

Apparently the only reason he's got the NG tube is that babies with Down syndrome have low tone and can't handle nursing or bottle-feeding very well--it tires the poor little things out and they'll develop an oral aversion if they're "forced" to keep trying. Huh! Well, this baby with Down syndrome has a very powerful suck (yowch!), and he's got the suck/breathe/swallow pattern down pretty dang well. It's SO INCREDIBLY FRUSTRATING being told that he can't do something when he's proven time and time again that he can! They automatically give him a tube feeding unless I'm there and ask them to please let me try nursing him first, or Devin's with me and tells them to step away from the feed tube and give him a chance to nurse or take a bottle. If he wakes up on his own, they feed him a bottle (which is actually fine with me--even though I'm stubbornly dead-set on nursing him--because he's awesome at downing a bottle, and if that gets him out of there faster, I'm all for it, even if we have to learn how to nurse once he's home). It IS true, from what I've heard and read from other moms of babies with DS, that they do tend to be sleepier, in general, than other babies. So, it might take a little more effort to get him to wake up for a feeding, but it's worth the effort to try. Sticking a syringe of milk in a feeding pump and pushing a button to get it going is a heckuva lot easier than working with him for almost an hour to get and keep him awake and help him take a whole bottle. It's all about convenience, in my opinion.

So, here's the analysis of the black hole that is our NICU stay:

--goal is that baby takes 100% of feeds orally --baby is automatically given tube feed unless he a) wakes up on his own at the exact time of his feeding, b) Devin or I aren't there, or c) takes too long with nursing or taking a bottle when we are there.

Do you see how mind-blowingly ridiculous this is??? They want him to eat, but they hardly give him a chance to try! If we were to wait for him to take all of his feedings orally using their method, he could be in there for over a month! One of the nurse practitioners told us that they could send him home with the NG tube--that they'd show us how to insert one and check for correct placement--so he could go home sooner. And the very next day, a different nurse practitioner told us she was sorry, that that was something they couldn't do. ARRGH! I just know that if I could bring this boy home, we could work all the livelong day on nursing, since I wouldn't be wasting hours driving to and from the hospital twice a day and trying to split my time between home and the &$*#@ hospital, and he'd rock it! The NG tube is completely unnecessary!

My friend Lexi suggested that I get a pediatrician to evaluate him. I wasn't sure how to go about finding one that would do that, so last night I called my regular pediatrician and explained what was going on and asked him for any advice or names of docs who could go check our baby out. When I was done telling him the whole tale, he was almost as irritated as I've been, and said he'd call the NICU's attending physician and see if we can't get our baby busted out of his jail. So, this morning I called the NICU first and asked if my doc had talked to the attending yet, and he had, but they wouldn't tell me what had been decided. Then I called my doc, who told me he'd reassured the attending that he'd be willing to monitor our baby for weight gain weekly if needed, and even assist in managing the NG tube, if necessary.

So, now we wait. The attending physician still needed to do rounds with the NICU staff, where they discuss all the babies' issues, so I won't know till later what's been decided. Meanwhile, I'm going to assume he's coming home TODAY, and bringing a car seat to the hospital with me. He still needs to pass the "car seat test" (he has to show he can hold his head up while seated in it, without his head falling forward, potentially blocking his airway). Now that I think of it, this may actually be a challenge.... Because of his low muscle tone (courtesy of the Down syndrome), he's really, really "floppy" like a rag doll. So, this is what I'll fervently be praying for today--that the attending physician signs his discharge papers, and our boy passes the car seat test. Wish us luck!

Awesome news!

2011-04-03T21:03:00.000-07:00

Devin and I got to spend almost 6 hours with our baby boy today. It was so nice! He's able to be off the oxygen for much longer periods of time, so we just held and held him. His oxygen saturation still drops really low if his airway is in any way bent or twisted (like his chin is down or his head is turned a little too far), or if he's in a deep sleep. I got to try nursing him again. He's pretty bad at it so far, but I'd say there's hope for him yet. He just wears out so easily and can't quite figure out the mechanics of it all. He's still right at 5 lbs. 5 oz., so he hasn't lost any weight since yesterday. Way to go, buddy!

The highlight of our visit, besides all the snuggling, was the visit from the neonatal nurse practitioner who's in charge of his care. She told us he's getting closer to coming home! Yee-haw! The past 4 days have felt like such a long time. She said she can't hear a heart murmur anymore today, which means--cross your fingers--his ductus arteriosus is probably closed, and there probably isn't a coarctation of the aorta! The ductus is the part that "hooks into" the aorta, which is open in utero but closes up within a week after birth. If there were a coarctation, then the baby would get sick in a hurry once the ductus closed up--blue lower extremities and other stuff. She said if he's still doing OK in about 3 days, we can be sure that's not what we're dealing with, which means NO HEART SURGERY!!! I can't begin to tell you the intense relief that news brought us! We went from being told there was a 95% chance he had a coarct while in utero (from 3 distinct signs the cardiologist had seen on the fetal echocardiogram) to now thinking his little ticker's just fine! It could just be major luck, but I'm gonna guess all the prayers that have been offered in behalf of our little boy may just have something to do with it, maybe. So, anyway, looks like our baby needs to be able to be off the oxygen all the time, take most of his feedings from nursing, and have his bilirubin levels stay low enough to not need the bili lights (he's a little jaundiced), to be able to come home. None of this is a very big deal, is it, when compared to heart surgery? NOPE! He could be home by next week! (They might even consider sending him home with the nasogastric tube in, and train us on how to do gavage feedings to supplement the nursing.)We're hoping for sooner, of course. I mean, I'd be a little scared to bring him home right now, because he still feels so fragile, but driving back and forth to Salt Lake (about an hour each way) is already really old. And leaving the big kids at home when I go down there, and leaving him down there when I come home--I hate it! I don't know how people do it who have babies in the NICU for months! I just want things to go back to normal--or at least start our new normal with a special little baby in the house.

I've had several people ask how I'm doing with all of this. I haven't really thought about that a lot, except that there's no time during the day or night when I'm not completely and utterly exhausted. I thought maybe having a quick labor and delivery would mean I wouldn't feel like I was hit by a bus--no such luck! Being exhausted and having surging hormones and worrying non-stop about our baby's health and heart--and then being told I can maybe stop worrying about his heart--and feeling like I can't handle splitting myself between 2 places for even one more day and all the other stuff that's going on inside my brain (including seeing Devin's clothes laid out for an early meeting in the morning, which means I have to get 5 kids up and ready and out the door to school by myself in the morning--a daunting task on a normal day, for sure, but when I'm this tired, it feels totally impossible. So I went and crumpled onto our bed and sobbed when I saw those clothes sitting there, and Devin took pity on me and said maybe he could skip the meeting. Yes, please. Can't dads take a couple weeks off work after a baby's born to help the mom not lose her mind?). So, yeah, all these thoughts lead to some distress. I still try and count my blessings, and remember that this is by far NOT the toughest thing I could be asked to deal with. You know, trying to keep perspective and everything. I'm so tremendously grateful for my parents helping so much, and also Nicole, and friends and neighbors and family visiting and bringing us tons of awesome food and people continuously sending good wishes and letting us know they're thinking about and praying for us. I don't know how I'd handle the emotions if it weren't for all the support--I'd feel alone and let depression take over, I'm sure of it. But, still, the fatigue makes everything feel SO HUGE! I just want to go to sleep for a few days. Actually, with that in mind, I'm headed to bed ASIP--As Soon as I've Pumped. Moooo!

Enjoy a couple photos of some daddy/son bonding time. Good night!

When Mommy's exhausted, Daddy takes a nap. Babies are better than sleeping pills!

Daddy trying to wake the boy up for a feeding.

PS: Still no name. You'd understand if you heard some of the suggestions Devin throws out. UGH! Caboose? Quaidius? I can't even remember half of the ridiculous names he's come up with.

New baby update--skipping birth story for now....

2011-03-31T18:21:00.000-07:00

I love birth stories--both telling them and hearing or reading them, so I'd like to tell our new baby's story. It's a pretty good one (they all are, aren't they?). But for now, I'd like to update my friends and family on what's going on with our little mister, since I've had a lot of requests for info. He's still in the NICU, and he's kinda rocking it... kinda. I mean, compared to so many of those tiny, sick little babies with hands and feet the size of Carinne's baby dolls', he's totally rockin' it! The NICU is a scary, amazing, miraculous place!

Here he is earlier today. That nasal cannula up his nose--besides bugging the crud out of him--wasn't doing much for him. It pumped dry oxygen into his swollen nose, and that wasn't helping things very much. So, they switched him to....

...A "head box." So tonight our little boy looks like this (I totally ruined the nurse's amazingly tight swaddling so you could see his size and crooky feet. I did an OK job fixing it afterwards):

He's had a hard time breathing, and they're not sure what the main cause is (well, the nurses I quizzed weren't. I forgot to ask his nurse practitioner). He's got congestion in his lungs (which could just be leftover from birth. But his white blood cell count yesterday was 25,000 when it should be 10,000, which means some kind of infection, so they started him on a couple antibiotics), and he's had the aforementioned really stuffy nose. Part of that may just be that he has smaller nasal passages, and so when they're inflamed, they're even smaller. All I know is that yesterday and this morning, his breaths were really fast and gaspy and shallow, and his stomach and throat retracted when he breathed. Since they started him on the meds and his "oxygen bar/steam room" he's done much better. (See that misty plastic igloo over his head? That's the head box, and it pumps moist, oxygenated air for him to breathe. It's warm and steamy and he loves it. My cute SIL Sarah says it probably feels like Hawaii. Heehee!) So, goal #1 is: get him breathing well on his own--no head box, no nasal cannula.

Also, do you see the tiny little blue cuff thing wrapped around his foot? That measures the oxygen saturation of his blood (pulse ox). If he can keep the pulse ox of his feet equal to the pulse ox of his hands (and also the blood pressure in his arms and legs equal), then it means his heart defect isn't as serious as we thought, and he can maybe skip surgery!!! That's goal #2. (Well, really that's goal #1, obviously, but maybe we're doing these in no particular order. I'm not re-typing this).

See how tiny he is compared to my giant, elephant, swollen hands (I know, elephants don't have hands. But they're huge, see? And so are my hands.)? He's huge compared to some of the babies around him, but still, he needs to gain some weight. That's goal #3. This part he's doing so great on. He's still below birth weight, but not significantly. He's only down about 4 ounces! That's NOTHING! If he keeps this up, he'll check this one off in no time! I'm not sure what he needs to weigh before they'll let him out. He's at 5 lbs. 5 oz tonight. I know there are babies who go home weighing way less than this, so maybe the actual weight isn't the goal--it's the continued maintaining and gaining...? I think so....

Do you see the tape on his chin, and the tiny little tube it's holding in his mouth? That's his feeding tube. He gets formula (with small amounts of whatever colostrum I can pump) in that tube, which leads straight to his stomach. HE HATES THAT THING! If his hands are free, he yanks at it. They've used 3 different types of tape to keep it stuck there, and the nurses swaddle his hands tightly so he can't grab at it. This newest tape is really, really sticky, so too bad for him--it's staying put! (Tomorrow he may be upgraded to a nasogastric [NG] tube, but only if his little swollen nose can handle it. They may decide that having unobstructed breathing is more important than letting him practice nursing, explained below:)

I don't have a photo for this next part, but I think you may thank me.... Tonight, the awesome nurse let me have some skin-to-skin holding time with him (this is big, because earlier they wouldn't let me hold him, because when I'd tried before, all of his alarms went crazy. He couldn't handle the stimulation with everything else he had going on--especially the breathing issues), and let him practice sucking. He has a pretty good sucking reflex! This is a big deal (especially for a baby with Down syndrome, since they often lack the muscle tone to achieve a good latch)! Of course, this is only one part of the whole suck-breathe-swallow routine he needs to master to be a successful eater. (So aren't you glad you didn't have to see fleshy photos of fleshy me?)

So, all of this is to tell you about goal #4: he needs to be able to take 75% of his feeds by nursing (or bottles, if we choose that route. I don't think I will, unless he just has way too hard of a time. Apparently there are occupational therapists in the NICU who can help me help him be a good nurser, so I'm definitely going to be consulting with them!). If he can take the majority of his feeds from breast or bottle, without choking or aspirating, they'll check this goal off his list.

I think there's a goal #5 that I'm forgetting.... If I remember it I'll update.... *UPDATE: I remembered just now! He needs to be able to keep his respirations down around 50 (so he's not gasping), without the oxygen. Also, his pulse ox drops WAAAAY down when he falls asleep, so he needs to be able to maintain it when he's awake AND asleep. These are both part of the whole breathing goal--#2 or something up there....

I'm off to pump another few milliliters of colostrum (I'm betting my milk will come in tonight. I remember all too well how painful that is, and I'm just a little fearful....), and then take a quick shower, so I can hurry to bed, where I'll sleep fitfully, in short bursts, being awakened all-too-frequently by my snoring or nurses taking vital signs or doctors asking lists of questions I'm way too incoherent to understand or respond to or phlebotomists coming to draw blood. I get to check out tomorrow, which is a relief in a way, but I still haven't figured out the whole routine for when I get home--how to balance time I need/want to spend at home with my other sweeties, and time I need/want to spend with my new sweetie. I'm sure I'll be picking the brains of my friends who've done this before. I'm too illogical and emotional to make sound, practical decisions right now. I'm just grateful I have family and friends who are so absolutely wonderful in their willingness to help!!! And for all of our friends who send their kind, supportive thoughts and prayers daily! What a giant blessing!

So, as a happy, parting gesture, I wanted to post a video of our little guy in action, but I remembered that Devin took the camcorder home with him to show the kids video of their little brother awake and moving around. I'll have to post it another time.

He is such a wonderful boy! When he was awake a couple times today, he tried to find out where my voice was coming from (and also Devin's and my SIL Sarah's). He's fighting hard for stuff, and he gets constantly poked and prodded and messed with, but all of his nurses have told me what a sweet baby he is--he very rarely cries (do you think this'll last when we get him home? A girl can hope, I guess....). I'm so in love with him already, and so fiercely protective of him. He's awesome! I really do feel so blessed to have him!

My version of events

2011-03-24T14:26:00.000-07:00

Our baby K-sound (as my SIL Michelle dubbed him) was breech till today. I was adamantly opposed to his breech-ness, because I wanted to avoid a c-section. Something about scalpels slicing into my skin and entrails frightens me a little (and mostly I wanted to avoid the recovery afterwards, because of all this baby's issues. I didn't want my own issues getting in the way, you know?). We were treated to an external cephalic version (ECV) this morning, and because I'm a total nut for medical procedures, I've got to document this one.

I'd half-heartedly tried to get him to flip during the past couple weeks using various methods I found online, but since they mostly involved hanging out partially upside-down, so that my lungs and stomach were squished by fluid and baby, I was less than diligent about continuing any of them. I found a couple videos online of an ECV being done, and the women having the procedure seemed like it was no big deal, like this one: http://www.youtube.com/watch?v=6AM6wDwTjmc. She seems so placid--no grimacing, flinching, crying out in agony. So I thought, after watching her, that maybe it'd be a little like a rigorous massage, and I wasn't all that nervous going in today.

Yeah, it's not like that. That woman's either doped up on painkillers, or she's a psycho who enjoys pain, or the doctor's just not pushing very hard. I should've known something was up when almost every medical staff member who came into my room told me to relax about it. Well, I WAS relaxed, till they all started talking like that. So here's how my version went down:

First of all, I had Devin and Christian (the 3-year-old) with me. Christian should've stayed with someone, but I didn't realize it'd take as long as it did. I was thinking 2 hours, tops, and he's come with me to lots of appointments and done great, especially since I started bringing the Backpack of Fun with me. Still, even though Devin was there for emotional support for me, he wound up keeping Christian entertained a lot of the time. It took over 3 1/2 hours. Take it from me, if you ever have to have a version done, find someone for the little kid(s) to hang out with. I wound up squeezing a nurse's hand instead of Devin's, since he was keeping Christian distracted. Hers was tons daintier, too, and I may actually have inflicted a little damage....

I'd been thinking it'd go something like this: bare belly, ultrasound to check position, shove baby up and over, monitor his heart rate, go grab a burger at Red Robin. Nope. Not exactly. When we got there, I was asked to strip and don an airy hospital gown. Anytime one of those gowns is involved, you know you're in for some good times. Then they checked me in as an inpatient, got an IV going, and took some blood (all of this in case something scary happened and baby K-sound needed to be taken by emergency). This was starting to feel like a little bit bigger deal than I'd anticipated. They explained the procedure, I signed some consent forms, and a resident came and checked baby's position with an ultrasound, and a nursing student came and watched everything and listened to my lungs and checked my reflexes and junk. When you go to a teaching hospital, you get lots more involvement and observing from seemingly random people than you would elsewhere. Fine by me. I'm no prude.

I signed some more forms, and then waited. For quite a while, actually. I got to listen to and watch baby's heartbeat, and watch the strength of contractions, on the monitor next to me. Devin took Christian for a little walk because I was afraid he was getting antsy (Christian, not necessarily Devin), and I wanted to avoid a meltdown in the middle of the procedure (from either one of them). As they were roaming, I got some Fentanyl (a painkiller similar to, but more potent than, morphine. AH-HA! I figured that explained the psycho lady's calmness during her version. I asked for the smallest dose, because I'm particularly sensitive to pain killers) in my IV, and a shot of terbutaline in the arm (to relax the uterus so it wouldn't contract while they were smashing on it).

Just about the time the Fentanyl took effect (which I knew had happened as soon as I felt like I was floating and nothing was real anymore) an audience of scrubs-clad people filed into the room. A nurse, an ER doc whose aspiration is apparently obstetrics, a resident, a fellow, a nursing student, and an OB. One of them did another ultrasound, and they discussed things amongst themselves, and I'm pretty sure I cracked a couple jokes, because that's what I do when I'm hopped up on stuff, or when I'm nervous or in pain. I still felt nervous, too, in spite of the drugs. But it was a good nervous, a happy nervous, and a funny nervous.

So then when they figured out their plan of action--which included lubing my belly up with gel--they told me they were going to start shoving on me so hard I'd feel like my skin was tearing and probably all my ligaments and other abdominal tissues, too. Actually, they should have told me that so I'd be ready for what was coming, but all they said was that I'd be feeling some pressure and some pain. Quite frankly, it hurt like the fiery depths of hell. These 2 female doctors were small, and yet surprisingly strong (is there a strength-training program specifically designed for physicians, I wonder?). They put their hands around the baby and pushed till their arms shook from the effort, never slackening or releasing, so baby wouldn't slip out of their grasp. Apparently, I did super awesome--I know because that's what they told me. I don't remember swearing or kicking anyone or even drawing my breath in sharply. I know I cracked a couple more jokes, though, very quietly and with my eyes closed, so that was Devin's clue that I was in mega-pain. Oh, I should probably write an "I'm sorry" note to the sweet nurse who offered to let me squeeze her hand. As I said, she was dainty, and I squeezed hard. All of the effort I put into keeping my tummy relaxed I diverted into squeezing her poor little hand.

So after they quit pushing and I quit seeing stars, they did another ultrasound to check the little mister's position. After all that, his head was smack-dab in the middle of my belly. What the...? They all seemed very amused by his antics, but me, I knew this only meant they'd have to shove and brutalize some more. Apparently he was all in a ball. So they decided they'd try turning him the other direction, but no matter how hard they shoved that way, he wouldn't budge. Back to the drawing board... OK, let's try one more time turning him the first way, and this time, we'll give it all we've got. What? You mean you've got more brute force in reserve??? Alright, I guess let's just go for it. (They actually asked me if I was ready. I don't remember saying yes.) So again they pushed, again I focused on the hand-squeezing and tummy relaxing, and again I saw stars all around. I don't think I cracked any jokes this time, though. I just focused on those stars and the hand-crushing. They told me over and over again how great I was doing, and I wanted to ask how they figured that--do other women make primal, guttural noises or scream or something? And if they do, do the nurses tell them they're doing crappy and to get a grip? Maybe they'll use me as an example to the loud, wussier women who come after me--"I don't see why you're making such a fuss. This lady was in here the other day for the same thing, and all she did was close her eyes and crack jokes."

So, eventually, they felt like he was head-down, and another peek with the ultrasound machine confirmed he was. Hooray! So they monitored his heart rate for about 30 minutes (with me sitting up to encourage him to stay head-down) to make sure he'd tolerated it all well, and the Fentanyl wore off, and my round ligaments hurt like a mother for about 15-20 minutes--which they would, I suppose, after being torn to shreds like they were. And then, when they were satisfied he was doing OK, I got to ditch the gown, get dressed, and be released to Red Robin for that burger I'd been craving (oh, I forgot to mention I'd been fasting since 8:00 the night before). So far, no bruises have appeared. If I develop some gnarly ones, I'll be sure and post a picture! Ha! So, actually, this procedure (for anyone who might one day be facing one) was extremely uncomfortable and even hellishly painful, but in all, the suffering only lasted a total of about 15 minutes. Totally doable!

The next step is a non-stress test on Monday (like I've been having for weeks), and a routine visit next Thursday with my high-risk OB (followed by another NST), and then an induction is scheduled for 7:30 am Monday, April 4th! That's 11 days from now! I need to figure out what to do with my other kids. And buy a car seat. And all kinds of other stuff I've been putting off.... I'm just gonna hope and pray this little boy keeps his head down till then (they told me there's only a 3-5% chance he'll revert to the breech position. He does like to defy odds, but maybe this time....)

The flip side of the coin

2011-03-12T11:51:00.000-08:00

My friend Lexi (you know, the one who is wise and amazing and has a boy with autism and a little girl with Down syndrome, and who I'd say is my soul sister if that weren't so totally cheesy?) had this great blog post about perspective, and now it's gone, so I can't link to it so you can read for yourself just how great it was. But it was really, really good, take my word for it, and I've been thinking about it a lot over the past couple days. It's been in the back of my head as I've been throwing myself this extravagant pity party. She wrote it after her little girl came home from the hospital for the 2nd time because of pneumonia, and after the earthquake and tsunami that ravaged Japan, and after finding out her friend's little girl has a mass in her stomach that may or may not be cancerous. And it was so, so impressive that she could see past her pain and stress and worry and see those people around her who were suffering.

I just got home from a funeral. It was my friend's little boy who passed away. He was almost 6 months old, and he died in his sleep, in the middle of the day, after she put him down for a nap. He had fought valiantly through 2 months in the NICU after being born 10 weeks early at 2 lbs. 12 oz., and had been home almost 4 months. As a mom, I can't think of anything more devastating than having to bury one of my children. When the 4 pallbearers walked into the chapel carrying that little miniature coffin, it was so heart-rending--it literally took my breath away for a few seconds and made me weak in the knees and my body tremble. And the poor mommy looked like she hadn't stopped grieving and crying since Monday, when he passed away. (And I wanted so desperately to take all that aching pain away.) We came home after the funeral, and of course, the family went on to the cemetery to lay his little body in the grave. I can only imagine the heartbreak of this poor mommy as her little boy's body, which she'd held and kissed and rocked and loved for such a short time--and yet so fiercely because he was almost taken from her right after his birth and she wasn't going to let him go that easily--is separated from her for the rest of this life. I'm sure that for now at least, even the knowledge that she'll get to hold him again is minimal comfort when her arms ache for his warm little body to snuggle right now, and tomorrow, and next week.

Last week, one of my good friends rushed from her home in Idaho to central Oregon to be with her family as her brother died in a hospice room. He was about 30 years old, and left behind 3 little kids and a sweet wife. He'd had melanoma a few years ago, which had gone into remission, only to resurface as a tumor somewhere else, and that cancer spread so horribly rapidly and took over his whole body in just a few months. His suffering was terrible, and he's now thankfully been released from all his pain, but still--his wife is now a widow, and his little kids have no daddy.

Why do I share these 2 terribly gut-wrenching stories? Because I know that what I'm dealing with and fretting over with this baby I'm carrying really is so very, very small in comparison to so many tougher things in life, and I've lost perspective. It's like crying over a hangnail when the person next to you has no arm. Or something (this makes sense in my head). And the hangnail hurts and you don't have nail clippers to cut it off, and you obsess about it and it snags on your clothes and other things, and it's always right there, driving you crazy no matter what else you happen to be doing. But, still, it's only just a hangnail, and that person next to you has no arm. And you look at them and realize that even with your painful hangnail, you can do lots of things like play with your kids and fold laundry and make the bed. It might be annoying, but you have both your hands to do the things you need and want to do. And that poor person next to you with no arm is, well, basically just much worse off than you are. So you're maybe crying about the stupid hangnail bugging you (haven't you ever cried about a hangnail? Let's pretend you have), and through your tears you look over and glimpse that person missing an arm and realize how foolish your tears are over something so insignificant. And you remember your blessings and feel so grateful.... But, still, maybe when you haven't seen that armless person in a while, you forget and start feeling sorry for yourself again about your dang hangnail.... But hopefully you're smarter than that and remember that your life is so good and you have a great family and wonderful friends and access to wonderful truths contained in scriptures, and a personal relationship with a God who really does love you and won't leave you alone, ever, (and this is where the hangnail analogy falls flat on its face because it's so shallow), and because of all these wonderful parts of your life, you can have the strength to make it through whatever comes your way. Not to mention that you really don't have to look very far to see someone whose life sucks a WHOLE lot worse than yours does. That's all a part of perspective, and I'm so glad Lexi reminded me of it.

I feel a gloomy, self-pitying post coming on....

2011-03-11T15:12:00.000-08:00

I just got off the phone with one of the hospitals I went to during this pregnancy--again. Seems we owe them several hundred bucks, and our account is overdue, and they're about to send us to collections, but wanted to give us one more opportunity to pay our bill before it reflects negatively on our credit. This is a bill I've been working on for months, getting pre-authorizations and appeal letters from doctors. Of course, the part I've been working on--the genetic testing (amnio)we received--is only one part of the whole bill. I guess I should feel happy that we no longer owe $3500 and are now down into the 3 digits instead, but I'm not one bit happy. I'm ticked off. The part that we still owe (besides our co-pay) is for the genetic counseling we received after the level 2 ultrasound, and before the amnio. It all happened so fast that day--we saw a couple of "soft markers" on the ultrasound, and were told that the only way to know for sure whether our baby had a chromosomal abnormality was to do the amnio. We said we'd like the amnio, and when should we come back for that? The doc told us she could do it right then, but that she was going to send in a genetic counselor to talk with us first, to prepare us for what we may discover. The counselor took a detailed family history of everything physically and emotionally and cognitively wrong with any of our family members (and I swear I could hear her thoughts as she wrote things down--"And you keep having more kids because....?" I bet that was a real puzzler for her, considering our family's... unique gene pool. And I felt compelled to explain to her that this baby was a little whoopsie surprise). And she left and we had the amnio. Well, the lady on the phone today told me that most insurances don't cover genetic counseling. My thought was, "Well, if that's pretty common knowledge, then wouldn't that have been a great tidbit of information to share with us before sending the genetic counselor in?" Stupid hospitals. Stupid insurances. So I pulled out the only tool I've got in my arsenal these days--tears. I actually didn't do it on purpose, but I broke down crying. Here I'd just spent almost 2 hours on the phone with our new hospital (where we'll deliver) and our insurance, trying to figure out what will be covered and what needs pre-authorization, and getting CPT codes from one to give to the other. Do you cover this hospital? What about this procedure? What about this one? And heart surgery? And a NICU stay? Do I need pre-auth for that? Oh, I need to call the hospital and get a CPT code first? OK, I'll call you right back.... I was feeling like I was being so on top of things and proactive and responsible, and just when I'd cleared all that up, I get the call from the other hospital about my delinquent bill. Aaaaand, I went right back to feeling like a clueless loser.

The reason this feels like such a big deal to me is that, really, this baby so far has been not a whole lot more to me but 5 months of constant puking, overlapped by 5 months of worrying about diagnoses and bad news and more bad news and doctor visits and tests and more doctor visits and then more bad news and pain everywhere and dealing with insurance companies and worrying some more about surgery and wires and isolettes and when and where do we start the clubfoot treatment if he's at this hospital for his heart surgery, instead of the other, free hospital where I had treatment set up, and oh yeah, he's breech and I may need a c-section (which isn't such a big deal, but come on--we've got so much other crap going on with this kid, couldn't we at least skip one surgical procedure?). And my mind always, ALWAYS flashes forward to what other issues will crop up because of the Down syndrome once he's here. Feeding, breathing, gross motor, fine motor, immune deficiencies, bowel problems, leukemia? In contrast, what have I worried about with my other babies? What colors to do their room in? How they'd fit in with the other kids? How overdue they'd be? And I know that this baby will be a huge blessing in some miraculous, beautiful way that I just don't understand right now, because lots of people have told me that it would be that way, and I trust them. But I don't get it yet. So far, he's just thumps and bumps in my belly and a blurry image on a screen and a heartbeat I get to hear at least twice a week and a diagnosis or two and several pending procedures. Oh, and looming, friggin' gigantic hospital and doctor bills.

The suckiest part of all this worrying (well, there are a couple suckiest parts) is that I'm so wrapped up in worrying about stuff I can't change that I obsess and research and forget how to enjoy great stuff around me. I have 2 sisters-in-law who are expecting babies a few months after my baby's due. That should be so fun and exciting, right? In fact, we were pregnant together when I was expecting Christian, and it was so fun. We took belly pictures together and stuff. But what do I do this time? I cry when I'm around them and they're talking about baby stuff. I picture their babies next to mine in a year or so, and their babies are doing all the stuff my baby can't do because of his delays. And my baby will be getting all kinds of awesome therapy from the 3 types of Early Intervention therapists who'll come to our house and work with him and teach me how to work with him. And he'll still be way behind, even with all of his hard work and their hard work and mine. And their babies will just learn that stuff, because they'll try it and they're at the right developmental age for it. And so I'm a horrible, horrible sister-in-law who can't be happy for her family members who are excited about adding to their own families. They're talking about accessories they're buying and stuff they're making and diapers they're stockpiling, and I haven't even bought a single thing or pulled out a single onesie from the storage bin, all because I've been so afraid since hearing those 2 words in the doctor's office--Down syndrome--and making the terribly ill-conceived decision to research stillbirth rates.

I don't like being stuck in this gloomy, self-pitying place. I want to be excited that there's a new little spirit joining our family who'll bring us joy I can't conceive of. And sometimes I actually am. I get glimpses of peace and comfort, but only when I allow myself to, when I shut off the worry roiling in my mind. I read stories of other parents who've started along this journey before me, and I think maybe it won't be so bad. Maybe it'll actually be really, really good. But before I can join them on this journey, I have to get past the scheduled external cephalic version (where the doc will attempt to physically force our baby to tuck and roll into the vertex--head-down--position in my pelvis). And then the scheduled induction if that works. And then maybe I'll get the chance to hold him and kiss him for a minute before he's whisked away for echocardiograms and tests and his own little isolette in the NICU. And I'll get to hold him and feed him and snuggle him in there sometimes before a surgeon cuts him open and cuts into his tiny little heart and stitches the broken parts back together. And I'll continue to worry for a while, because even though the surgeon will have done this procedure hundreds of times before on babies just as tiny and fragile as mine will be, it'll be the first time I will have handed over my own little infant to a team of gowned and masked surgical team members and trusted them to return him to me safe and alive, and I will have a hard time pushing the fear out of my brain that there are always risks involved in surgeries like his. And my friend Lexi promised me just the other day that somehow I'll be able to handle it, and even be strong through it. And the angels who will have accompanied this sweet baby to earth will attend to me while I wait for him to recover. Only the way she told me was so much more eloquent and lovely and believable. And I do believe her, because she's already been through the wringer with her own special little spirit who came to her in a body affected by Down syndrome.

But I'm not there yet. Right now, I'm stuck in this place of worry and wondering about things I can't see yet. And I know that there are people in this world who are worried about things much more serious and difficult than this, but I can't shut off the worry. I can count my blessings, which are so plentiful, but when I'm done counting, I always go back to the worry. Maybe because it's become familiar territory, and we as humans tend to stick with the familiar. I suppose it's a great thing that I only have a few more weeks of this worrying to do before I'm thrust into the reality of it all. I'd better start getting things ready for this little boy.... Maybe that'll make it feel more real, and I can start moving into the part where I feel peace and comfort. It's worth a shot, right?

3-year-old cuteness

2011-02-19T11:44:00.000-08:00

I've said it before, but I'll say it again: 3-year-olds should stay 3 for a couple years, at least. Everything they do (except maybe the major tantrums) makes me want to chew on them a little, from all their yumminess.

The stuff 3-year-olds do is so awesome. They learn how to talk really well and can carry on interesting conversations about a wide variety of topics--both real and imaginary. They build and create cool things out of stuff they should and shouldn't (i.e., Legos or all the blankets and pillows in the house). And they learn how to draw people. Christian drew this family portrait at Joy School yesterday:

I love everything about this drawing. The legs coming directly from the heads in true 3-year-old fashion. The Amazon proportions of Mom and Dad, indicating our true supremacy as family rulers. The name he gave the new baby--need we even continue our search? The way he tried to write his name, and Quentin's (see the "Q" up to the right of Quentin's head?). The curly hair for the girls and the bald heads for the boys. The fact that Dad is driving a car.

Love, love, love this!

And here's the little artist, after yesterday's dramatic experience getting his stitches cut out of his infected wound. Grrrr. His still-slightly-gaping wound is pathetically being held together with steri-strips, and the steri-strips are held on with "brown glue," a foul-smelling adhesive apparently made of wood rosin or something equally offensive....

And yet, check out that cheesy grin! Yummy!

Different note, different tone

2011-02-18T08:11:00.000-08:00

I got another note from a child this morning. It's from my 9-year-old, Quentin.

Here it is:

In case you can't read it, it says, "Dear Mom and Dad [with "Dear" added as an afterthought], Went to school early. Mom, br [crossed out] make me a lunch and bring it 2 me ASAP." He started to write bring a lunch, see, and then decided to specify that I needed to first make it. He's all about avoiding confusion with his demands.

I'm thinking of approaching this in one of two ways: a) either not make the lunch and tell him he didn't sign it so I didn't know who it was from, OR b) not make the lunch and tell him he doesn't pay me enough for that kind of service. Tough call....
(PS: It's his day to go out to lunch with Dad anyway, so don't feel too bad for him that he has such a mean mom!)

Sometimes you just can't sell 'em to the gypsies....

2011-02-17T08:57:00.000-08:00

....or to the circus, no matter how much you've threatened to do just that in the past 3 days alone.

I was feeling so gross last night (it's the pneumonia or the pleurisy or the bronchitis), and didn't even feel like I had the strength to get up off the couch, so my kids were fending for themselves (Devin had 3 meetings and a Scout Court of Honor). Camille, the One of the Major Attitude, was in my room, and I assumed she was watching some junk on TV. I didn't care like I should because, as I said, I felt gross and had no energy. When Devin came home much later and went to our room, he came back out and said, "Did you see what Camille did in here?" Oh, no, I thought. What food did she smuggle in there this time? Could it be worse than the graham crackers and Nutella from last week? On my bed? "No," I said. "What'd she do this time?" And he handed me this note:

Can you read what it says? "Dear Mommy, When you told me you weren't feeling so good I thought of all the nice things you do for me. I decided it might help if I did all the laundry. I [heart] U. Love, Camille." I cried, and then I went and kissed her face as she slept.
So, you see, I can't sell her now. Amazing how one sweet act from a kid erases hundreds of their rotten ones from the recent past.

PS: Now that I know how well she can fold laundry, I should probably take full advantage of that knowledge, huh? No use in not exploiting your kids' abilities, I always say.

I'm a grouch

2011-02-16T15:04:00.001-08:00

What a perfect title for my return to blogging. I've decided I need to return to blogging, since that's the thing to do when you're a part of the Down syndrome community, and my main goal in life is to fit in. I'd like to chronicle our journey into this strange new land, and what better place to start than before our little guy joins us? So here we go....

Yes, I'm a grouch. There's always been some grouchiness lurking inside me (ask my younger sister who had to share a room with me for years and years, or my parents who put up with my teenage angst, or my hubby, who's tolerated my mood swings with good humor and patience for the past 16 1/2 years) but usually I can keep it suppressed and put on a happy face. I always think of what my funeral will be like. I want whoever eulogizes me to talk about what a sweet, kind, happy person I was and not have the members of the congregation looking around at each other, with quizzical looks and snickers under their breath--"Whatever," they'd be thinking. "Melissa was a judgmental, opinionated, cranky JERK." Basically, I need to master this most recent infection with grouchiness before it's too late and this scenario comes true. So, how 'bout if I psychoanalyze myself? Seems like a perfectly reasonable thing for an amateur to do.
So I'm 7 + months pregnant with our 6th baby, which means my body's been torn apart 5 times before. Granted, that's not as many times as some people, but Michelle Duggar is completely NUTS. Every joint, ligament, and tendon in my entire body hurts (except maybe my elbows), and I move and sound like a geriatric penguin. I can't sleep for more than a few hours at a time because of the discomfort, and a pillow between my legs and Tylenol just barely make the pain more bearable. I love being pregnant, because it's such a miracle that there's a little person growing inside me, but I also just want to feel like myself again, and I know the only way to accomplish this is to get this little sucker out (and then pursue 1 or 2 surgical interventions to be absolutely certain this never happens again).

HOWEVER, no matter how awesome it'll be to be done with the pain and discomfort of pregnancy, I'm scared witless of this baby coming out. I'm sure he'll be sweet and smell yummy and I'll love him, but he's also coming with an extra 21st chromosome in every cell in his body. Here's why that scares me: anything can go wrong with this boy. Most people, when they think of Down syndrome, only consider cognitive impairment and typical physical characteristics they've seen in the person or people they've known with Ds (and, apparently, everyone in the WORLD has a niece, nephew, old neighbor, or best friend's child who has/had Ds. Everyone but me, that is). But get this, because our baby has Down syndrome (Ds or T21), he's also automatically at dramatically higher risk for a laundry list of problems: infantile spasms, heart problems, cervical spine instability, vision and hearing problems, chronic ear infections, obesity, gastrointestinal conditions, 2 different types of leukemia and testicular cancer, celiac disease, Hirchsprung's disease, impaired immune system, hypotonia (low muscle tone, often resulting in feeding issues), hypothyroidism, respiratory disorders, sleep apnea, chronic constipation, diabetes, seizure disorders, autism spectrum disorders, attention deficit disorders, depression, stereotypical movement disorders, dementia and early-onset Alzheimer's, and I think that just about covers it. Of course, the doctors will reassure you that kids with Ds only develop one or 2 handfuls of these various things, but the thing for me is, which ones? Do you spend your time nervously watching for one of them to surface? I already know from talking to other moms with kids with Ds that the first year or two of their lives are spent taking them to appointments with various specialists: neurologists, cardiologists, otolaryngologists, endocrinologists, and so on--all just to check for (and hopefully, rule out) a lot of these various conditions. Also, they get early intervention therapy (which we're blessed enough to be able to receive in our home)--speech, occupational, and physical therapists come each week to help these little guys achieve their highest potential, for the FIRST 3 YEARS. They teach you skills that you then work on with your little person. Awesome, huh? Of course, from what I've gathered, little ones with Ds still achieve developmental milestones quite a bit later than their "typical" peers, even with all the therapy (I'm guessing it'd be even later without the therapy). Here's a chart that shows the typical age kids with Ds reach different milestones: http://http//www.down-syndrome.org/information/development/early/?page=7. If you don't actually go read it, I'll just tell you some of the numbers I've gotten from other moms: neck control (supporting weight of own head) at about 6 months, potty-training at around 4 or 5 years, walking at around 2 years, crawling at about 18 months, sitting up at around 1 year. So, even though I'm going into this knowing that he eventually WILL achieve all the milestones other kids will, I'm pretty nervous--I think just having had 5 kids before him will make it hard for me to not get discouraged when he's not doing things when it feels like he should be.

Another thing I worry about is breastfeeding. I've heard that these babies, with their low muscle tone, small mouth and large tongue, and "defective" suck/breathe/swallow patterns (which often causes aspiration of liquid into the lungs), are often much more difficult to nurse than a typical baby. It's really important to me to nurse him, though, because it'll apparently be good for his speech later on, and the antibodies he gets from breastmilk will help his wimpy immune system, and the DHA in the breastmilk will help with his brain development. So, I'm thinking I'll be pretty stubborn with the nursing, but I'm anticipating a possibly stressful experience with it....

Also, the risk for stillbirth is many times higher in a Down syndrome pregnancy than with others, because the placenta is a product of the baby and therefore has the extra chromosome through all of ITS cells, too. This can lead to it deteriorating and failing like an old placenta much earlier than the normal 40 + weeks. I'm so in tune with this baby's movements, and am hyper-aware of both the amount of movement, as well as the frequency, throughout my busy days. I get a little panicky when he's not moving as much or as strongly as he should. Fortunately, the medical community is aware of this risk, and so they have guidelines in place for increased monitoring of the pregnancy--now that I'm at 32 weeks, I get to have bi-weekly non-stress tests at the hospital and increased ultrasounds to monitor his growth and placental function. That helps me feel a little better, although I'd prefer to have my own ultrasound machine or, at the very least, a Doppler, to monitor his heartrate all through the day.

So, there you go. That's what I think is making me grouchy. I'm pregnant and hormonal and sore and scared and nervous and sleep-deprived and worn-out from worrying so much. I know one of the things I keep hearing from the moms I've "met" on my favorite online Down syndrome board--it's on BabyCenter--is that arriving on "the other side" of a Down syndrome pregnancy is so sweet and beautiful that the worries and concerns take a back seat to the blessings. I'm banking on that with everything I can spare. But, from this side, it's still unknown territory for me, and I don't do too well with the unknown. In fact, it terrifies me. I feel like I've got this "fight-or-flight" reflex turned on high pretty much all the time, so I'm always on the verge of a meltdown or blow-up. I'm not much fun to be around, and I like being fun to be around! I keep reminding myself that there are MUCH worse things that could happen in this life, so this is pretty small potatoes compared to some of the biggies out there, but I can't quite silence the worry gnawing at my brain. I feel like I've achieved a major breakthrough over the past few months, though--I'm excited to meet this little boy. Scared and worried, yes, but I have every confidence that I'll love him with every fiber of my being. I already do, as much as that's possible without actually getting to hold him and sniff his head and kiss his neck.
So how should this post end? I'm not sure. Probably with a joke, since that's my favorite way of coping with stress and anxiety (second only to hollering or crying). So here's a joke from my 9-year-old (it's potty humor, which I absolutely do not condone, at least not outrightly): "Have you seen the movie 'Constipated?' No? That's because it never came out." Hahahahahaha! Ba-dum-bum.

Slurp!

2008-12-29T23:42:00.001-08:00

We took the kids ice skating tonight at the outdoor rink in Midway (about 10 minutes away). We had a really fun time, although my back and arms are SORE from bending over to help Carinne for such a long time! Some of the kids protested before we went, lamenting that ice skating would be SOOO boring. But everyone had a fantastic time, and, of course, didn't want to leave to come home!

On our way home, Christian was doing this "slurp, AHHH!" noise in the car, and Camille joked, "Christian's drinking air!" We all giggled, and then she exclaimed, "He's not drinking air; he's drinking the snow off his boot!" I looked back there, and sure enough, the little monkey had pulled off his boot and was sucking the (dirty) snow off the bottom of his boot! Ewwww! What a disturbingly resourceful little guy! I grabbed the boot and we got him a big drink of clean (!) water the moment we got home. Too funny!

The perfect place to stash evidence?

2008-12-12T12:53:00.000-08:00

Remember that cute little girl from the post just prior to this one? Well, that same Little Miss Cuteness, who is almost always sweet and perfect, occasionally gets into trouble. She is a kid, after all. Thanks to that doll-faced cherub, I've got another great item to add to my list of yucky household discoveries: today I found a pair of her very damp, peed-in pants and panties in the overflowing laundry basket of clean (well, not anymore!) clothes. Carincess, as we've taken to calling her, had very carefully hidden them under several layers, and everything around them is now infused with the stanky essence of urine. They'd been steeping for over 12 hours, so the odor is not exactly subtle. I'm wondering what my big kids had to grab out of there this morning, since I haven't folded laundry for a few days and their drawers are empty of several necessities, such as socks and underwear....

Well, I guess I have just been sitting around, filing my nails and reading juicy romance novels in the bubble bath, all the while wondering what I could possibly find to do to fill my empty day. Now I get to go rewash 2 days' worth of clothes. Hooray!

A glimpse into Carinne's little world

2008-12-10T08:05:00.000-08:00

Carinne just turned 4 on Sunday. As you may know, four-year-olds love to talk. They tell all kinds of stories and make endless observations about the world around them. I love it! Yesterday, a couple of Carinne's observations had me laughing so hard, I just had to write them down.

Let me preface this first story with a little background. My parents had to put down their geriatric dog, Nikki, a few months ago. She had become mean and ornery, but she was a dog, so Carinne automatically adored her. She still misses her and often comments when we're at their house, "Nikki's not here. She died." So yesterday, we were at their house getting Legos for Kenneth's class project, and Carinne found a rectangular rabbit pelt in the closet (not sure where it came from, but I remember using it as a Barbie rug--those were the days before Barbie adopted her current, P.C. anti-fur stance). She hoisted it in the air, and with her eyes wide with excitement, exclaimed, "Mommy! Look! A PIECE OF NIKKI!!!" She was so excited my parents had kept a memento!

The second story takes place a little later, when I took her to the doctor for her annual check-up. Our doctor's office is upstairs from a physical therapy office. As we came down the stairs, she saw a wheelchair parked next to the P.T. office. She went to examine it and said, "Mommy, what's this? Is this for the lazy people?" I kind of chuckled and thought that was kind of a strange way to think about wheelchair-bound people. I was glad for this little teaching moment, and explained that people who use wheelchairs aren't lazy, but maybe their legs don't work very well. That night I was telling Devin about what she'd said, and he wondered, "Is it because she's been watching WALL-E?" Maybe I was overly tired and more than a little slap-happy, but I started laughing so hard I cried and had to run to the bathroom (5 pregnancies haven't exactly strengthened my bladder). If you haven't seen WALL-E yet, it takes place in the future on a starship where all the people are obese because they no longer walk--they just ride around in these hoverchairs, which look a lot like--you guessed it--wheelchairs! I'm sure this image completely overshadows what I told her in our tender little teaching moment, and wheelchairs will continue to represent morbidly obese, lazy people for quite a while in her little brain.

____________________________

*Just as a side note: I was sitting with a group of young-ish (around my age--I'm still young-ish, right?) moms at our Relief Society Christmas dinner last night and shared these stories. I knew they were an I-guess-you-had-to-be-there kind of story, but, for some reason, I could NOT for the life of me even get to the punch line because I was laughing so hard. I was gasping for air and just hopelessly hysterical. I'm sure all those poor ladies thought I was high on something, and at a church function, no less! What the Helsinki? What makes a person laugh like a mental patient at something so mildly amusing? I'm a little embarrassed. I think sleep deprivation is really getting to me...

What's all this cold white stuff?

2008-11-05T09:33:00.001-08:00

I'm pretty sure Christian doesn't remember snow from last year (actually, last year's snow didn't melt away till about 4-5 months ago). We got about 6 inches during the night, and when he saw it from the window, he just had to go check it out:

Poor little guy! What kind of mother lets her kid walk outside barefoot in the snow?!?!

Here he is after we got some boots and a coat on:

I think it's so cute how intrigued he was with all that snow on the ground! He was totally fascinated!

Items found behind the washer today

2008-10-28T10:51:00.001-07:00

Retrieved:

1 boy's undershirt

1 pair boxer briefs

1 sock

1 pair boy's briefs

1 pair boy's shorts

Retrieval methods attempted:

Mop handle

Mop head

Hanger

Hand (while lying on stomach)

Hand (while lying on side)

And finally, leg dangled into abyss behind washer with toes used as pincers. Success!

Amount of time elapsed during this exercise:

20 minutes (which I will never get back)

Items still remaining behind washer which will undoubtedly remain there until the day we move:

2 owner's manuals

1 dryer sheet

1 fabric softener bottle lid

3 dust bunnies, which I'm sure will rapidly reproduce, as bunnies will tend to do

Snaggletooth

2008-10-22T22:16:00.000-07:00

Quentin had been home from school the other day for at least an hour when I finally caught a glimpse of the inside of his mouth (yes, I'm aware that type of inattentive parenting won't win me any Mother of the Year awards. But, in my defense, the sweet child mumbles and keeps his head down a LOT. So cut me some slack, wouldja?) I grabbed his little head--not by the hair, although it is growing back nicely, thank you for asking--and ordered him to show me his teeth, now! He complied, and that's when I noticed it--a brand-new gap in his top teeth! He pulled his tooth out by himself at school. How cute can a person get!?

I love it when they lose their front teeth on top! What a cute smile! Now I want him to lose the one next to it so he can sing "All I Want For Christmas Is My Two Front Teeth."

Hide and seek, toddler-style

2008-10-22T09:12:00.000-07:00

I've been noticing lately that random household objects have been mysteriously disappearing. It didn't take long for my astute (ha ha) mind to connect this phenomenon with Christian's newfound obsession with "relocating" items to the toilet or garbage. The other day, I went to throw something away, and this is what I saw when the lid opened:

See if you can find all 10 utensils in this photo. You get a bonus for disregarding the 3 very sharp steak knives and not reporting me immediately to Child Protective Services.

I promptly located the little suspect and brought him in for questioning. He caved early in the interrogation, and confessed to the dirty deed. Here he is demonstrating his technique:

Not the face of someone experiencing the least bit of remorse, in my opinion.

At least the cutlery was at the top of the garbage can as opposed to the bottom of the toilet, which is where I found a magnetic dart the day before. Someone (I'm not mentioning names even though I really want to) had peed and THEN told me about the need for retrieval. I was not amused.

Oh, the humanity...

2008-09-07T12:27:00.000-07:00

All right, everyone, listen up. I haven't posted in a while. There's just something about having 5 kids home for the summer that puts a major crimp in my blogging-world style. Three of those kids have been back in school for 3 weeks, and yet, here sits my poor blog, abandoned and alone.

And so it may have continued to sit, had not recent incidents in our otherwise placid, uneventful lives nudged me back to the computer keyboard to document a most unfortunate occurrence. Of course, I'm talking about... a haircut! An ugly, defacing haircut, the kind of haircut dreaded by self-respecting mothers and given by and for children! Sometimes other children's heads are the target of the ill-wielded shears, but, more often, calamity falls upon their very own monstrous heads. Such was the case in our home last night. I sincerely apologize to any of our dear neighbors whose windows may have been shattered by my ear-piercing shrieks. Once you've seen the results of my middle son's encounter with the clippers, either here in photos, or up close and personal, you will surely, dear family and friends, confirm the necessity of such deafening screams.

And so, without further explanation, I present to you... Quentin's Reverse Mohawk:

Oh, yes, little clipper monster, hide your face in shame.

Actually, it'd be better if he were ashamed, instead of proud! Because, let me tell you, he was really angry with me when I informed him that I would now have to cut the rest of his hair to match the jagged furrow he'd created. "No, Mom! It'll look DUMB!" Yes, he actually said those words. Add to that my usually reasonable husband, who agreed that this kooky kid should leave his hair the way it was, and you can feel my pain. But, fortunately, my family subscribes to the "When Mama ain't happy, ain't nobody happy" credo, and the kid got a haircut.

We both cried during that memorable haircut, my offspring and I--I at the loss of his shiny locks and disturbing parade of irrepressible mental images (boot camp, concentration camp, neo-Nazi hate rallies...); he at the untimely loss of such a cool 'do. Yes, I repressed his self-expression and imposed on him my version of normal and acceptable, but, come on, wouldn't you have done the same?!?! He's six! Totally incapable of making any decision more important than what to eat for breakfast! Back me up here, people!

And so, this morning, my darling Q-ball (I never thought that nickname would be so aptly suited to him) headed to church looking like this:

Thank goodness hair grows rather quickly (about half an inch a month, according to howstuffworks.com and various other websites I checked out last night), so this episode will be only a(n unpleasant) memory in about 4 weeks....

Say cheese...

2008-05-20T08:58:00.000-07:00

I've got lots of candid shots of my kids, but not very many more formal, posed pictures of all of them together. And so, it's time for me to get out the camera, dress all the kids up, pose them somewhere nice and green in the yard, and attempt to take their picture. I don't mean to be melodramatic, but this prospect has me all nervous and just a little scared.

I used to get their picture taken in a studio, but it's gotten to be too much of an ordeal. First, you have to pick a time to go when it's not anyone's nap time, then you have to get them all dressed and make sure they don't soil their clothes, then you have to do their hair all cute and not let them mess it up, and then you have to drive at least 30 minutes away to the nearest studio (that I can afford). Do you know what can happen during those 30 minutes? Well, a lot, apparently. Then, when you finally get into the studio, you have to get all the kids to look at the camera, smile, keep fingers out of their own and each other's facial orifices, and be still--all at the same time. Those poor little photographers are completely wiped out by the end of the session and get a weird, crazed look in their eyes and a whole-body twitch. I'm sure they're seriously rethinking their career choice or thanking heaven above they're only doing this till they graduate from college.

I have a very talented sister-in-law (Sarah, I'm talking about you) who is a great photographer. I've considered asking her to take their picture, but I treasure her too much to risk losing her friendship over this.

And so, I'm left with only one other option: taking their portrait myself. I'm planning on doing it this Sunday after church. That way, they're already dressed and their hair is already done. I'm writing about it now because I need some time to get psyched up for it.

I'll post the results of our photo shoot next week, but for now, please enjoy this lovely photographic progression of shots taken for Father's Day last year.

Selective independence

2008-05-17T14:03:00.000-07:00

One frequent struggle I have encountered in my parenting endeavors is children who whine, "But I can't dooooo it!" when asked to accomplish a task around the house. Now, mind you, I'm not asking them to change the oil in the car or re-wire the house.
It's just astounding to me that the following exchange can occur:
Me: "What're you doin'?"
Child: "Oh, just makin' myself a Monte Cristo sandwich with a side salad of mixed greens and fresh crudites."
Me: "That's great! When you're done, how 'bout we go clean up the playroom together?"
Child: "But I can't doooo it!"
Of course, the preceding example is an exaggeration, but only a slight one.
Where's my Michelle Duggar handbook? I need to figure out how that woman gets her kids to do their chores (without yelling, spanking, or threatening bodily harm).

You can't tear the pages out of a blog, can you?

2008-05-16T21:59:00.000-07:00

So I've jumped on the blogging bandwagon. I'm not really sure how the blogging world works, and I don't necessarily have anything particularly novel or interesting to say, but I figure maybe this will get me to keep some sort of journal. So even if no one else ever reads anything I write, it's just fine, because at least I can print out the things that I blog about and save them for my posterity. Heaven knows how little this poor, deprived posterity presently has to read from me...

I've never been a diligent journal-keeper, with maybe one exception. When I was about 12 and living in France, I received a little diary (with a lock and key! Like, how totally fresh is that?) as a birthday gift. I wrote regularly in that little book. It was a great record of the friends I had and all the great trips we took all over Europe. Totally worth keeping, right? Well, one of my dear children found this cute, little book, and thought it would be great for his/her own use. The only thing keeping the book from being absolutely, completely perfect was the writing on a few of the pages. "Not really a problem," I imagine this child thinking. "I'll just remove those few pages, and this book will be as good as new!" I'm sure my reaction upon finding the pages--each in about 3-4 pieces (kids don't have the manual dexterity needed to cleanly rip pages out of a book, don'tcha know)--can be justified.

Why, oh why couldn't this beloved child have chosen my other journal, the one from high school, to hijack? The few entries I did make in the journal of my adolescence are embarrassing, hyper-emotional drivel, and the only reason I haven't burned it is the deeply-rooted belief that YOU MUST PRESERVE YOUR HISTORY--all that "turning the hearts of the children to their fathers" business we learn in Sunday School. But, come on, really, do my kids and grandkids really need to read the really bad poetry I composed as an awkward, angst-driven teen? I swear the only time I ever wrote in that journal was when I was oh-so-depressed. Does that melodrama really need to be preserved for generations to come? I think not. Then again, maybe my posterity would be grateful to me for giving them a good laugh ("Great-Granny was kind of a dork, wasn't she?").

So, anyway, I hope I can write at least a few things worth reading. And if I manage that, hopefully none of my kids will figure out how to delete them!