Do you remember those days – it seems so long ago – when we were told by GI doctors that Namine was not gaining weight, and that she’d have her g-tube until the third grade? They refused to back down on her g-tube feeds and just let her eat, convinced that her weight gain would happen by pumping formula into her and not by real food.
When Namine’s g-tube was placed, we were told that kids with g-tubes often fear or dislike food. They get used to receiving food in liquid form directly into their stomachs, and so they have a hard time adjusting to really eating food. But not Namine. Even before her jaw and palate procedures, she wanted to eat. She tried to eat, too, but solids and liquids alike always managed to get stuck in her cleft palate. It wasn’t a matter of if she would throw up, but when. But the palate closure fixed that, and afterward, her desire to eat was not in any way hampered by her multiple surgeries – or even by the g-tube itself.
The decision to feed Namine food more and g-tube feeds less was not doctor-sanctioned. GI had Namine on five – yes, you read that right – feeds a day, plus an overnight bolus. With that much liquid being pumped into her, it was a wonder if she could manage to eat anything at all; her stomach was so full, she’d just throw up. And not just the food, either; everything would come up.
I’m sure someone is going to scold me again for being anti-doctor. I’ve spoken out against doctors before, and I never expect the backlash that I invariably receive. Well, I expect it this time, and I’m prepared. But hear me out, crabby people, hear me out.
I’m not totally anti-doctor. Doctors, after all, saved Namine’s life – on more than just a few occasions. The trach, the g-tube, the two heart surgeries, the diaphragm plication, all of those add up. The life and the love of life Namine has, she owes (and we owe it also) to doctors. That said, sometimes a little rebellion is healthy. Sometimes you have to go against what the doctor says because your head says so, sometimes because your heart says so. Parents are instinctual creatures at their very heart; we know our child better than anyone (physiological knowledge notwithstanding, and I flip this particular bird to you, nameless dumbass doctor). We will fight tooth and nail for them to our very last breath.
Namine’s g-tube feeds were keeping her fed, true. But they were not helping her gain weight; they were not helping with her growth. So we decided something new – or at least new to Namine – more food. And guess what? Namine discovered that she not only liked food, she loved it. Sometimes we say that Namine’s love affair with food is really just catching up for missing all that deliciousness before.
Fast forward to today, and Namine is a phenomenal 27 pounds (give or take a pound or so). Now we’re being told that Namine is gaining weight too fast, and that she needs to lose weight. This from the same people that told us to feed her butter – I’m not even kidding – to make her gain weight. Yeah, we’re not comfortable with that extreme, either. Thankfully, Namine’s special needs doctor has taken more of a middle ground: he’s instructed us to keep a food journal for Namine, to monitor what she’s eating and how much. Once we have a good period of time, then perhaps we can examine what modifications need to be made to her diet.