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Tuesday, December 6, 2011

Pet Carrot

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

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

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

Wednesday, November 16, 2011

The greatest birthday wish list

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


It says:

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

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

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

Wednesday, September 7, 2011

Colin: A birth story, part 2

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


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

Meanwhile, the nurses wheeled me to Labor and Delivery, where I was checked again (and, it definitely bears mentioning here that there were at least 7 other people--nurses- and doctors-in-training, I think--in that room, just beyond the foot of my bed, all there to catch the show. The U of U hospital is a teaching hospital, so there can be lots of observers, if you as the patient tell them it's OK with you. I think I've mentioned before that I have no modesty when it comes to stuff like this, so I probably told them to invite anyone they could find wandering around the halls to come have a look-see...). This time, I was at a 9. It had been approximately 20 minutes since the last time they'd checked me. That's 5 cm in 20 minutes. So, Dr. Anesthesiologist came in right about that time (did you ever watch that show "Scrubs"? You know the macho, jerky, jock surgeon?
Yeah, that's the guy.
He was my anesthesiologist. Right down to the obnoxious do-rag and the sleeveless scrubs. I may have just imagined the sleeveless scrubs part, though) and announced that my blood work was back, and he could now dazzle me with his impressive epidural skills, if I'd still like one. I asked, "How long does it take for an epidural to start working?" He told me about 15 minutes. I said, "Hmm. I'll have this baby out in five. You can take your epidural and shove it up your...." I'm embellishing. I didn't say the part about shoving the epidural. Very loudly. OK, fine, not at all. But I definitely thought it. So, I'd like to imagine he walked away, all dejected-like, shoulders drooping, ripping off his do-rag and chucking it on the floor in frustration at missing out on being included in our bill. 

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

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

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

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

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

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

Colin at 1 month old
photo by Sarah Bush

Our birth is but a sleep and a forgetting:
The Soul that rises with us, our life’s Star,
Hath had elsewhere its setting,
And cometh from afar:
Not in entire forgetfulness,
And not in utter nakedness,
But trailing clouds of glory do we come
From God, who is our home....
~William Wordsworth

Colin: A birth story, Part 1

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....

Wednesday, August 31, 2011

A tragic end...

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.... 

Friday, July 1, 2011

My Little Sister. A Tribute

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.

Tuesday, May 24, 2011

Crooky feet repair

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--a LOVELY 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 physically disabled, 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!

Tuesday, May 17, 2011

Sister Taylor's blanket

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 picturing 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. In my wild imaginings, 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 so much 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 where I'd cried myself to sleep (and asked God more than once to please just take this little soul back to Heaven with Him), a sweet friend, Mary, knocked on the door. She left me 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, gave me a hug, and left. The message she'd written was one of the sweetest things I've ever received. It seems that she'd prayed for an opportunity to serve someone in some way, and in answer to this prayer, she'd felt strongly impressed to make a baby blanket. So she bought some fabric and began making it, not knowing who it would be for. Because she had no one in mind as a recipient for it, she didn't complete it right away, and tucked it away on a shelf to finish sometime later. There it sat for a few months, until one day she felt very strongly that 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 the next morning, gift bag in hand. 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 just too much. It was such a clear, distinct message 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 worry throughout the rest of my pregnancy, where I momentarily forgot this sweet message I'd received and returned to my feelings 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.

Monday, April 11, 2011

Future player?

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

Friday, April 8, 2011

News from the NICU

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.

Thursday, April 7, 2011

NICU black hole

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!