Tuesday, July 17, 2012


Every morning, I wake William up at 7:30 to eat breakfast. I look forward to him opening his eyes and smiling at me, and spending the morning just the two of us.

Do you see the problem here?

I wake him up to eat.

People have asked me why we can't feed on demand, or why he can't breast feed.

Will cannot feed on demand because right now his need to sleep is higher than his need to eat. He needs more nutrition than the average baby, and is on a strict schedule. When he is awake before a meal time, it is clear that he is hungry. He will cry or fuss until the bottle hits his mouth. Unfortunately, if he is asleep, he does not wake up to eat. That part is up to us. We either have to wake him up, or gavage his whole meal while he sleeps. He often won't even wake up for the pre-meal diaper change. He needs the sleep because his heart is working double time.

In addition to this, he is not always able to stay awake to finish a whole bottle. Even if he is completely alert at the beginning, the work out he receives from eating knocks him out, often about halfway through his bottle.

This is partially why he is not able to breastfeed, as well. He simply does not have the energy to drink enough to sustain himself and gain weight. On top of that, the bottles he gets are fortified with extra calories to assist with the weight gain.

We have been working diligently on eating, and Will is doing so well. He had a few days where he was finishing all of his bottles, and we were going to be able to try taking out his feeding tube after a week of this. On day five, he started regressing. He went back to eating only 50-75% of his bottles.

I'll admit I was disappointed, but obviously William just isn't ready. He needs, and also deserves more time. We will give him all the time he needs. If he needs the tube until his second surgery provides relief to his heart,we will gladly continue the path we are on. Encouraging, but not pushing. He will get his tube out in his own good time. We will continue to be patient and do whatever it takes to help him thrive the way he has been.

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