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August 14th, 2013, 04:51 PM
Mega Super Mommy
Join Date: Sep 2010
Location: Cincinnati, OH
Okay, the doctor took another look at his test from yesterday. He confirmed that everything looked normal.
After a long talk with the GI RN about his feeds, his reactions, what happens, and how we feel about it she came to the conclusion that it is all a sensory thing. That ALL of Rowan's issues are a sensory thing. He doesn't like how it feels to eat. Literally. He doesn't like how it feels in his mouth, going down his throat, and sitting in his stomach. A full, satisfactory feed is frightening and upsetting for him.
Because even with the fortified feeds he is not getting the amount of calories he should be getting they are ordering an electronic pump for him. Whatever he doesn't eat out of a bottle in 15-20 minutes gets put into a bag and then metered out by the pump over X amount of time. The RN will be calling us tomorrow with the new amount and time spread. We believe it will be every 4 hours now with 4.5 ounces, with the feed duration lasting 1.5 hours.
I'm glad we're trying out a new solution but, as ever, I'm incredibly mad. It seems that every step we take on this journey is taking us away from being able to bond. So much of our time is being spent getting food into this kid that we can never just kick back and relax and enjoy him. Ever. And now a ****** robot is needed to feed my kid! I know it's nothing we're doing or I have done but I honestly feel like a complete and miserable failure. I cannot feed my kid.
If this does not work then they will consider either putting in a new tube that will bypass the stomach completely or will do surgery and put one in his small intestine. That way he will never feel the feeds. I have no idea what that would mean for future eating habits.
'Scuse the bad typing, please. 'Breast is Best' but not when browsing the internet!
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