Tuesday, December 6, 2011
Pet Carrot
Wednesday, November 16, 2011
The greatest birthday wish list
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
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
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?
Colin: A birth story, Part 1
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.
Wednesday, August 31, 2011
A tragic end...
Friday, July 1, 2011
My Little Sister. A Tribute
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:
Tuesday, May 24, 2011
Crooky feet repair
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:
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
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?
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
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
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!