Bye Bye Bottle!

Well, folks, as of today Connor is officially off the bottle.

Yes, I have a child who is three years old and still uses a bottle. He doesn't chew, and he has trouble swallowing, so a bottle was the only way we could get enough nutrition down him before the g-tube placement to keep him from starving. There he is at around four months old, eating for his Daddy. It's apparently a very serious business.

The crazy thing is that I never intended to have him on a bottle in the first place. The original plan, way back in the naive early stages of my pregnancy, was for me to breastfeed for the first year and then switch him directly to a cup. Even after we found out (at about week twenty) that Connor would have multiple medical issues, I still thought that I'd be able to breastfeed. After all, it was the natural thing, right? Surely it couldn't be that hard.

Then Connor was born. And for the first month of life, due to intestinal malrotation he didn't take anything by mouth at all. He spent the next month with an NG tube, and after that he needed so many extra calories that my milk alone wasn't going to sustain him. So much for breastfeeding.

I pumped every four hours around the clock. For six months, I did this. I had one of those loud beeping alarms I'd set, and every four hours, when it went off, I'd hook myself up to what I called my "Madonna Bra" (You know the one I'm talking about) and spend the next half an hour watching trashy late-night shows on my parent's television. It got to where I didn't let down to Connor crying-- I let down to that alarm clock, elevators sounding the floors, trucks backing up, fire alarms . . . you get the idea. I never had much of a supply, and our move cross-country when Connor hit six months old killed it entirely; I dropped down to using the machine only at night for the duration of our trip when I discovered to my horror that if I pumped while sitting in the passenger seat no matter how I arranged blankets, sweaters, etc I gave every trucker passing us on the highway a perfect view of the proceedings. I've never been honked at so much in my life. At any rate, by the time we reached the Pacific Northwest and I tried to resume my former schedule it was too late and my supply had dried up.

Now that you know way, way more information than you ever wanted to know about my boobs, back to the present. One of the reasons that we had the g-tube placed was that we wanted to start trying to work Connor down off the bottle and on to a cup, but we needed a safety valve to make sure he was still getting all of the nutrition he needed. There was also the fact that every time he gets sick or stressed, he refuses to eat. Like right now, for example. For the past four days, Connor has completely refused to take any liquid by mouth. I suspect this is yet another reaction to Jer being deployed; he shakes his head no when I offer it to him and says "Daddy," which I assume means that he'll drink again when Daddy gets home. He's staging his own little hunger strike in protest of the current situation. Maybe he's been surreptitiously been reading up on Gandhi when I think he's napping.

He'll take a few bites of pureed food, and maybe a couple of sips from a cup, but he's totally rejecting the bottle. Before we had the g-tube, this kind of behavior usually resulted in me becoming increasingly frantic in trying to get food to pass my son's clamped lips, a trip to the hospital for fluids after a couple of days, and him losing nearly all of the precious weight he'd gained over the few months prior. The g-tube has taken nearly all of the stress and danger out of the situation. He doesn't want the bottle? Fine.

Since we're trying to wean him off of the bottle anyway, there seems little point in trying to get him to drink from it again just so we can slowly transition him to the cup. So Connor's speech therapist and I talked it over today and decided to quit the bottle cold turkey. This means that most of his nutrition will probably be coming through a g-tube while he slowly, slowly learns to drink more than an ounce at one sitting out of a cup, but at least his teeth will be safe from bottle rot. It also means that I should probably talk with our nutritionist about making my own enteral formula, as I really don't care for the stuff I have to put down his tube at night (do you know just how much of that formula is made out of corn? A whole lot, that's how much) so I'd rather not make it his whole diet if I can help it. At any rate, we'll see how things go.

Not really sorry to bid the bottle goodbye, though.

~Jess

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!

~Jess

*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.

To Market!

Today was a pretty busy day!

Jer didn't have physical training this morning, so we got to sleep in this morning until almost 7:00 am-- whoo hoo! After a week of getting up at five in the morning, seven seems like a real luxury. It's all in your perspective, I guess.

Anyway, usually when we get up at five we put Connor into the car with as little fuss as possible-- in his pajamas, with no shoes, hair combing, etc. This is so that hopefully he'll just sleep in the car and then go back to bed when we get back home. It usually works pretty well. Unfortunately I forgot to tell Jer this morning that we wouldn't be coming immediately back to the house, so when I asked him to put Connor in the car, he did so in the usual fashion-- in his pajamas, sans shoes, hearing aids, and attention to personal hygiene. I didn't discover this until I glanced into the rear view mirror several minutes down the road. Whoops

I had an hour in between the time I dropped Jer off at work and the time I had to be at a ceremony honoring one of our close friends, so I rushed over to Target and bought a comb, a toothbrush, toothpaste, a pair of socks and some shoes. I slapped Connor's emergency extra outfit on him(I carry one in the car at all times-- a habit from Connor's days of horrendous reflux), brushed his teeth, ran a quick comb through his hair, and then we were off to the ceremony.

From there we took care of a few errands-- the farmer's market for flowers, cherries, honey and bacon, the food coop for cream and onions, and the farm for our first weekly pick-up from our CSA (this one included lettuce, mustard greens, beets, rhubarb, asparagus, and garlic scapes). Then Connor and I picked up Jer and we headed back for our first night out courtesy of our new respite care worker.

Remember how I wrote that whiny post about not being able to pick a respite care worker because none of them really stuck out as perfect? Well, we held our last interview a couple of days later and found our Mary Poppins-- a medical massage therapist and former nursing assistant who is just plain awesome. Connor has connected pretty well with her, and she and I get along really, really well, so it was pretty exciting to have a chance to spend the night out on the town and leave Connor in her more-than-capable hands. Jer and I got ice cream, went to see a movie (Up-- and for Pete's sake, go see it, as it's wonderful), and then ate at a great Greek restaurant afterwards. Connor apparently was pretty good for her, and he even ate a few bites of food for her, which he won't do unless he's pretty comfortable with someone.

We're looking forward to our next date on Sunday. I could get really used to this!

~Jess

Grow Connor Grow!

All right, I'm pretty sure the kiddo is going through a growth spurt. I should have recognized the signs-- he's had a couple before, and they usually start with him waking up in the middle of the night convinced he's starving.

My child, who it's usually a struggle to get any food into at all, had somewhere around 1800 calories today. This is a ridiculous amount of food for a kid his size, but since he's not exactly in danger of becoming overweight any time soon, I rolled with it. Any little extra fat pads we can squeeze onto those skinny thighs in between the times that he goes on hunger strike are great. I mean, the kid is almost three and he weighs a grand total of 22 pounds. I think sumo wrestler is not going to be a good career choice for him.

Other than being ravenous, he was pretty quiet and rather grumpy most of the day-- which was pretty much the mood I was in too. I like my sleep. He lasted longer than I thought he would, though-- the grand meltdown in which Connor announced that he had Had Enough occurred at about 4:30 in the afternoon, after he'd fallen asleep in the car and I had to wake him up to take him inside. I fed him his dinner and he was conked out by 5:30. Bliss.

I then took a ridiculously long bubble bath, had a cup of tea, read for a little bit, and turned out the light at the pitifully early hour of 7:30, only to be awakened at 8:30 by what sounded like an air raid siren going off in Connor's room. Connor was Not Pleased, and he was using every square inch of his lung capacity to tell me so.

Guess what he wanted?

~Jess