Week 239: 800 liters

This week marks two full years since Lemon had his G-tube placed. I vividly remember giving him a bath on the night before his surgery, looking at him, and thinking, "This is the last time I will wash this perfect little body before it has a weird hole where there shouldn't be one." Aside from that one memory, I barely remember him without the tube anymore, it's as if he's always had it.

It's hard to believe that when he had the tube placed, he was just 25.4 lb, or 6th percentile for his age. Now, he's 41 lb, and in the 70th percentile. He's also grown 7.5 inches in height in that time, going from the 30th percentile to the 70th. So, was it the right decision for him? Yes. I didn't like it at all at the time. Not at all. I wanted desperately for him to be as "normal" as possible. I wanted him to be able to eat and flourish like any other kid. I didn't want him to have anything that would make him visibly different. That obviously was not in the cards.

I remember reading somewhere when he was a baby that even if kids are picky eaters, they won't starve themselves to death. I believe that is almost correct, in that MOST or even NEARLY ALL kids won't starve themselves to death. Mine would have, without a doubt. Part of that is the fact that the deck was stacked against him in a way that he could not possibly understand. What two-year-old has to consume somewhere between 1500-2000 calories just to stay alive? There is no way evolution could have prepared his brain for that concept. And, he was sick all the time, so who can fault him for not wanting to eat, really?

One thing I had not anticipated two years ago is how dependent we would still be on the tube now. I guess I thought that we'd use the tube to supplement whatever he ate by mouth during the day, and use it to give medicines and whatnot. And that without the pressure to eat so many calories, that he would just come around and start eating on his own. Hah. Part of me thinks that having the tube to fall back on enables him to continue being so averse to eating orally. Surely if he felt hungrier he would eat more. On the other hand, I know that he has been hungry before, and that in no way has that been enough incentive to get him to eat. 

So here we are. We have a tall, well-nourished boy who is bursting with energy and intelligence. I try not to let the fact that he is literally comprised of maltodextrin, sodium caseinate, and soybean oil bother me too much. I still live in hope that some day he will learn to love to eat. When we started food school, I set as my goal that I would like him to eat enough calories by mouth every day that we could stop doing a bolus feed in the mornings. In other words, I would like to have confidence that my nearly 5-year-old child would eat a measly 150 calories by mouth every day. We're not there. I don't even see a clear path to being there, but then again we've been in lots of places on this journey where the path forward has not been obvious.

That seems typical of parenting generally, in a way. You face what seems like an insurmountable hurdle. Will they ever poop in a toilet? Will they ever sleep through the night? Will they ever learn to read? You make numerous and valiant attempts to move forward. And, ultimately, at some point, a small miracle occurs, the kid does whatever it is, and on you go towards the next hurdle. I try to be patient. I try to be supportive. I try not to think about when it might be that I will get an uninterrupted night's sleep in my own home. And I remember how grateful I am that we are stuck here instead of somewhere else.