He's still not doing very well taking a bottle, though. After being on the ventilator for 4 months and a feeding tube for close to 5, he's not used to this whole "feeding" thing. His sucking reflex is weak, his palate is high (from ventilator tubing), he often chokes on the milk, gets scared and cries, then doesn't want to have anything to do with it. I'm always nervous when that happens, knowing that aspirating is a real possibility for him.
His overall muscle weakness (from the AMC) is a factor too. It means that doing something as simple as taking a bottle, requires a lot of energy. And now that he is spending more time and energy working on oral feeds, it means his weight gain has slowed down. He's expending more energy on the "work of eating."
What a concept, right? The "work of eating." Don't I wish I could classify "eating" as "work!" Well, for him, it is. So, it's a tricky balance. We want him to eat on his own, but we also want him to GROW. Feed him through the G-tube, and he grows. But then he doesn't learn how to eat. Feed him through the bottle, and he doesn't grow. What can I do? I can't win.
And not to spend all my time complaining. He's doing great! He really is. He's come such a long way from where he was a couple months ago. Even just a few weeks ago! He's a miracle baby. And I'm thankful for the G-tube.
But, I would LOVE for him to go even further in this area. It would make life a lot easier on all of us. The way things are going now, I spend a good 6-8 hours a day on his feeds (between pumping, bottle feeding, g-tube feeding, cleaning his bottles, bags and the tubing for the g-tube pump). I can't do much else right now, but feed him.
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