What's for lunch?

I don't think too much about eating.  Just eat something I like when I'm hungry.  Doesn't work that way with my son, though.  He doesn't really eat, at least not in the traditional sense.  Eating, or not eating in his case, takes up a lot of our time and energy.

When I say he doesn't eat, that's not to say we don't feed him.  He just won't drink his bottles of fortified breast milk or eat the baby food, yogurt, or assorted baby crackers and cookies we give him.  So we have to feed him through his tube.  The tube, or button as it is called, goes directly into his stomach and is held in place by a little balloon filled with water.  And oh yeah, he can pull it out.  So we have to put it back in so his stomach contents don't come flowing out the hole in his abdomen, which has happened a couple times.

Here's the button:

Here's a feeding being poured into his stomach:

We're not entirely sure why he won't eat.  Our theory is that for months and months he had to work so hard to breathe that he was too tired.  Now, he can breathe easier, but he has to get so many calories to grow (because he burns so many breathing) that his stomach is nearly always full and he never really feels hungry.  He needs so many calories that we feed him continually with a pump overnight for six hours straight.

But despite all the food, he's growing very slowly.  He gains about 13 grams per day.  The doctors would like him to gain twice that.  He's so small for his age that you can't plot his growth on a growth chart because he isn't even on the chart.  The past couple weeks he's actually lost a few ounces.  (See previous post for details).

Growth is so important for him right now because he needs to grow healthy lung tissue to compensate for all the tissue that was forever destroyed by the high pressure ventilator he was on for so long.  He needs the percentage of healthy lungs to far outpace the percentage of damaged lungs.  And that happens by growing.  The lung experts have told he has a several year window in which the greatest growth will take place.  So if he gets sick or has feeding issues that impede that progress, he's losing valuable time that could have a lifelong impact on his respiratory capacity. 

So, since he won't eat or drink, we pretty much feed him exclusively through his tube.  Right now it is still breast milk fortified with extra calories and nutrients.  We soon will be switching to a more vitamin-rich formula called Compleat that's made from real food.  But the doctors want us to use this stuff called Pediasure, but we are uneasy giving him something with so much sugar and so many additives and preservatives.

We've instead been thinking of doing what's called a blenderized diet, or BD, for short.  This would mean that we'd put meats, vegetables, fruits, vitamins, minerals, and oils in a blender to create a sort of milkshake that we'd feed him through his tube.  It will be a lot of work; we'd need to find the right ratio of protein, carbs, fats, and other stuff to make sure his diet is nutritionally-balanced.  But we think it would be better for him than something that is made from chemicals in a lab.  And we've heard from other preemie parents that a more natural diet such as this can help reduce vomiting and reflux, which has been an ongoing problem we've been trying to address.

The doctors, at least the ones we've seen so far, aren't in favor of a BD.  They claim we should give him the artificial formula because of the consistency of the calories and the surety that he'll be getting the necessary vitamins and minerals.  We think they just don't trust most parents to put in the time necessary to ensure a healthy BD that will allow their kids to grow and thrive.  They clearly don't know us well enough.  So we are going to get a second opinion from a nutritionist who is open to the idea.

But for now we'll keep doing what we're doing and working on getting our little guy to explore the wonderful world of food.