Pagan parenting, special needs style - one medically complex preschooler, one medically fragile toddler, lots of chaos.
Monday, February 6, 2012
Why a Feeding Tube
Today's topic: Why my child has the tube they have now
Both Acorn and Leaf had feeding tubes as tiny preemies because they were too young to coordinate suck-swallow-breathe the way full term babies do.
Acorn kept his tube due to oral aversions - anything near his mouth made him vomit. He was almost completely orally fed at one point, but developed those aversions as part being a preemie. He was intubated for 8 weeks, and had a feeding tube in his mouth after that until he got his trach because he needed the space in his nose for the CPAP and the nasal cannula. He also missed the suck-swallow-breathe window after his trach was put in. It took us until he was 2 1/2 to get him to eat enough orally to sustain and grow, and even now, we supplement with a limited amount of special high calorie formula to make up calories and nutrition he's not getting on his own.
Leaf has a feeding tube because her respiratory status was so marginal when she came home that she could not coordinate suck-swallow-breathe - she was breathing at 60 breaths a minute, and a child cannot drink that fast. She *was* partially orally fed before this hospitalization. She's now being fed through a "J" tube, which goes into her jejunum, the upper part of the intestine just below the stomach. This is because she was extra pukey because of a combination of meds that slowed her digestive system, meds that made her nauseated, existing reflux, and the risk of aspiration while she was very sick. Plus she was just a pukey kid to begin with. We are hopeful that we'll be able to work our way back to something resembling a normal feeding schedule soon, with more typical feeds going straight into her stomach, but it will take time.
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