Luke’s feeding

Luke’s throat lacks the strength and coordination to swallow properly, and his sucking muscles are very weak.  This combination of weakness creates a Bermuda line segment of sorts which makes bottle feeding particularly hazardous.  Because Luke’s throat does not function properly, there exists the possibility that he could aspirate any liquid traveling down his throat.

In order to avoid aspiration, we add thickener to Luke’s formula so it travels more slowly down his throat so he has time to swallow.  The thickened formula requires Luke to work harder to suck, thus exhausting him before he can finish his bottle.  Whatever formula he doesn’t finish by bottle, we feed him with the pump through the “g-tube” in his stomach.

When feeding Luke, I have a “three strikes” rule.  If he coughs or chokes three times, I stop the bottle feeding.  Each time he chokes, the danger increases that he may aspirate his formula, which could cause “aspiration pneumonia”.

Additionally, every time Luke chokes or cries, it weakens his throat muscles which results in his breathing to take on a wheezing or hoarse rough/gravel sound.  Luke usually recovers from the wheezing by the next day.

Finally, in addition to all the others, Luke has acid-reflux, which often manifests itself in spitting up, which can also result in aspiration pneumonia if he chokes on his own vomit.  Feeding him makes my soul very unsettled, but it’s something with which I will eventually become more comfortable and will not panic so easily.

5 thoughts on “Luke’s feeding

  1. Matt,
    This may have already been tried with Luke back when he was in NICU, but I thought that I might suggest a Haberman bottle. It looks like a cow’s teat, and requires very little sucking to achieve getting the milk, we used it in the very beginning with Reagan. You can email me privately if you have any questions.

  2. I remember these days well…. Karson struggled with feedings relentlessly. I thought we would never see the light at the end of the tunnel. The Haberman will be worth a shot…. I have some other suggestions, but want to save them for later… hoping we get to spend some time with you all on Christmas. I’m sure things are very overwhelming right now and hope ya’ll are getting into a routine. Hang in there… it will come. We had the G-tube for about 18 months.

  3. I totally understand your feelings about feeding! I actually hated feedings. Yeah, I think “hated” is the right word. You will become more comfortable with it, and one day it will be much easier to feed him!

  4. This was a very moving post, Matt. Thank you for sharing your journey. The photos and videos are wonderful, and I hope you will keep us posted. You and Mikki are awesome parents.

  5. Matt,
    I remember those days and feeding were my most dreaded. The only kind of bottle Ethan would eat out of his the NUK bottles, i don’t know why but they were easier for him. you might want to try out

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