Tuesday, June 16, 2009

Grow Little Grow Worm, Grow!*

Connor's been doing some major growing around here!

As you all probably know, Connor is a really little guy. And when I say really little, I mean little as in "he fell off the bottom of the growth chart when he was two months old and hasn't been back since" little. Disregarding the whole heart-defects-and-missing-kidney-and-taking-blood-thinners-and-poor-muscle-control thing, I would be destined to suffer disappointment if I had dreams of him pursuing a professional basketball career. I mean, up until about three months ago, my cat outweighed him. Granted, Loki is a pretty big cat, but that's still kind of ridiculous.

At any rate, I'm not sure how it happened that I managed to give birth to a child who can literally sit around all day eating and still not gain any weight, whereas I can merely glance at a bowl of ice cream and it flings itself across space and gloms directly onto my hips. Connor has been this way since the very beginning. When the little guy was born, he weighed 5 lbs, 14 oz, and when we brought him home almost six weeks later, he weighed exactly 5 lbs, 8 oz. During his hospital stay he dipped as low as 5 pounds even. Granted, he was on a diet for three weeks of nothing but IV fluid and TPN Lipids, but he didn't ever catch up once he switched to more substantial fare; he wore 12 month clothing from the time he hit 18 months old until he was two and a half for goodness sake. As to why exactly he's so small: maybe a crazy metabolism or some issue with pulling nutrients out of his food-- who knows?

One of the big reasons we got the g-tube was that in the past few months while Connor was still gaining weight at his usual plodding rate, he'd sped up a bit on how quickly he was growing upward, so his length-for-weight proportion (the only growth chart he's ever been on barring his first two months of life) was slowly edging towards the ominous blank space below the 1st percentile line. I don't care how tall he is or how much he weighs, but I do want him to be proportionate. Not only did this imbalance make it impossible to shop for shirts (all the ones long enough for him made it look like we dressed him in brightly patterned cloth sacks) but he was starting to take on a bizarre appearance undressed as well-- his round pinchable cheeks and chubby legs and arms are part of his genetic condition, so he loses fat there last. Picture the torso of one of the kids in those brochures about starving children in Africa meshed with a Pillsbury Dough Boy head, arms, and legs. Yeesh.

At any rate, Connor's g-tube has allowed us to put him on a diet with an insane amount of calories for a three year old of his activity level without me having to spend every waking moment feeding him. It's taken a lot of the stress out of getting him to eat, too; I know that if he doesn't finish every meal it's okay, as we can make up the lost nutrition through the tube at night. He's on a 1300 calorie diet. A typical running, jumping, hyperactive three year old needs between 1000-1400 calories. A kid as sedentary as Connor? That's a pretty crazy amount of food. At any rate, now we're finally starting to see some results!

We drove down to our hospital for a weigh-in today, and Connor tipped the scales at exactly 25 pounds. That means that in the past 48 days he's gained a pound and a half! Now that might not sound like much, but keep in mind that his typical rate for the last year or so has been only 5 grams a day. There are a little over 453 grams in a pound. That means that in the past, it would have taken him about four and a half months to gain the same amount of weight! This represents a huge increase in his rate of growth. He's also grown an inch and a half in that same amount of time, and is measuring a still-tiny-but-more-respectable 2 ft, 10 inches tall. He's pushed his length-for-weight percentile back up from the 4th percentile to somewhere around the 12th percentile, and he's now hovering just below the bottom line on the weight-for-age chart. In the next couple of weeks, he might just make it back up on those lines for the first time in well over two years.

I'm so relieved that his crazy high calorie, high fat diet is paying off! Now we just have make sure we don't overshoot and turn him into a butterball.

Grow Connor Grow!


*To the maybe two other people out there reading this who are also Lilla Cayley Robinson or Mills Brothers fans or at least know who they are: my apologies for the bad title. I couldn't resist. Also, I would like to state for the record that Connor has turned on both the AC and the DC. Um, yeah. Sorry.


Sweet Lorraine said...

[raises hand] I'm one of the two, obviously. All is forgiven. I echo your desires for Connor to grow, little grow-worm, in a similarly corny fashion.

Julia O'C said...

I *thought* he looked like he'd grown!! What great news. Keep it up, Connor!

J. said...

well I make 3 and then there are the lurkers... grow on Mr. C.

Renate said...

Lurker here, so I make four. Glad Connor is growing! I have a granddaughter with Prader-Willi, who is on growth hormones and has a myriad of physical problems, so I can emphasize somewhat with your situation.

Anonymous said...

I know that the G-tube decision is a difficult one...not one I've had to consider. Certainly, it sounds like you guys made the right one.

Love your descriptions!

Connor's Mom said...

Hey! Guess I'm not the only fan of Big Band music out there!

MFA Mama said...

Aren't g-tubes fabulous that way? My littlest guy has one and it's been a lifesaver (for him) and a sanity-saver (for me) BIG time. We've resigned ourselves over here to maybe never tasting the glory of greater-than-3rd-percentile-height but height-to-weight we are quite robust, thank-you-very-much. At nearly four my guy still has his baby creases (um yeah..."syndrome-y," as our geneticist puts it) and lucious chubby cheeks, and this is a kid who took until he was six months old to hit nine pounds in weight (full-term and seven pounds at birth, mind you). Before we figured out that he needs an elemental diet he was literally starving on an OBSCENE number of calories, and is still on many more than the average kid his size needs, but not having to fight with him over oral intake is priceless (he will take in perhaps a tablespoon of liquid and three bites of food per day by mouth left to his own devices and the tube lets that be a FUN thing rather than a battle). It's also pretty awesome when he needs something like liquid Zantac or cough syrup that is BEYOND nasty, and he had the rotovirus that put his older brother in the hospital but thanks to a steady flow of Pedialyte from his pump weathered it nicely at home. We heart g-tubes here!

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