Wednesday, July 31, 2013

Feed me!

Maggie gets all of her nutrition through a gastrostomy tube. The tube is in her stomach and I just attach an extension and pour her medically prescribed food down it. Of course I wish it weren't that way. Eating and drinking is very important to us socially and tube feeding is not part of that. But we can keep her satiated and healthy, so the social thing is secondary. And, it is easy as pie, in all honesty.

The tube was placed the day Maggie was born because her physical anomalies made it impossible to get food into her any other way. There were several anomalies both above and below the stomach that were eventually repaired surgically. By the time they were repaired, though, Maggie was three months old. The natural ability to swallow had faded and she had to learn it. It is a complicated motor function and because of the Cerebral palsy, that we really didn't know about yet, she could never master swallowing.  So the tube stayed.

We tried for a long time to do regular feeds. She never could handle liquids, though she used to take small bits of baby food. She loved pureed fruits, but even then it was only a bite or two and she was overwhelmed by the sense of things in her mouth and exhausted by concentrating so hard to swallow.

(Note, swallowing is extremely difficult. We all do it naturally, but if you think about it, which Maggie had to do, it's very difficult. Try to swallow five times in a row and you will see what I mean.)

Maggie's tube is just a part of her. She still feels hungry and demands to be fed just like any other kid. It's just that both her way of eating and her demands are done a bit differently. Lately if her talker isn't attached she just pulls up her shirt to show me her tube when shes' hungry. It took me a while to realize what she was doing, but now it's just the norm. It's pretty hilarious.Here is a reenactment for you.

If her talker is attached she just uses that. Maggie eats the same thing every two hours. 5 to 6 ounces of Vivonex RTF (ready to feed). It does not resemble anything you or I would eat. Yet Maggie figured out very early to ask for the appropriate meal at the appropriate time. (breakfast, snack, lunch, snack, dinner, snack) That still blows me away. She just did it this morning. Actually she does it several times a day. She starts with simply demanding it and I make her say please. Then she starts nagging by adding mom mom mom mom. 

We are working on a "Thank you, that was delicious" sentence, but Maggie won't tell a lie. 



  1. How about, "Thank you, that was satisfying!"? That would not be a lie and would be polite!

  2. I find that fascinating, and I wonder what hunger does feel like to her when it's not attached to "taste" and "smell."


Hi Maggie loves your comments. It may take a while for the comment to post, but you will see it eventually.