Feeding Tube Awareness Week 2020 – Tuesday’s Topic: Nutrition

There are long-term consequences to malnutrition and being undernourished. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need to live.

Henry eats exclusively through his food button.  All his nutrition is received through his tube and without it he very likely would not be alive today.  So it goes without saying we are so thankful for his feeding tube.  But I won’t lie – we have moments where I feel completely overwhelmed.  Those moments are fewer and farther between than they used to be.

For Henry we (read “I”) chose to do a homemade blenderized diet.  When we first started all this I hated feeding him formula from a can.  It didn’t seem like “real” food to me.  That’s a judgement, I know that, and speaks more to my feelings of inadequacy than to the nutritional content of commercial tube feeding formulas.  I couldn’t even feed my own baby… and that really triggered me.  Perhaps if we’d had a diagnosis I would have felt differently, but that’s hypothetical and I try to stay away from “what if’s”.

We continued with homemade blended meals because it turned out that Henry has several food sensitivities that made typical commercial formulas not work for him.  It was a game changer when we started blending his meals.  It was almost 8.5 years ago and I still remember the difference clearly.  He went from meals that took at least 45 minutes, frequent vomiting and us walking on eggshells, to thriving, eating more and feeling better.  We still struggle with “what” and “how much”… but as Henry gets older and plays a more active role, we are working on a new dynamic.  Trusting and consent around his body are big ideas we are working with currently.

What I do know is that thanks to his feeding tube Henry eats WAY more nutritionally balanced meals than my other son (7 years old… processed meat & raw veggies please!).  Henry’s meals provide the nutrition he needs to thrive… and that’s all this mama can ask for!

 

 

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