Getting the g-tube was the single most important action we have taken to improve our daughter’s health. The second was switching her diet from commercial formula to whole foods blended to go through that tube.
Ok, so this is Thursday and we’re supposed to be talking about communication. But I wasn’t sure when else to post about homeblending during Tube Feeding Awareness Week, and the topic is oh-so-important.
Every morning, I fill the counter with nutritious foods. One day it could be grilled salmon saved from last night’s dinner, carrots and spinach and cherry tomatoes still dewy from the garden, homebaked whole grain bread bursting with seeds and grains, a juicy ripe peach, granola with raisins and cashews, yogurt, olive oil, a hard-boiled egg from our family’s chickens. The next it might be grilled steak and Chef salad and garden potatoes and…you get the idea. These are good things that make a body strong. They all whirl together in the Vitamix blender for 6 or 7 minutes and pour out as a day’s worth of high quality, fiber-rich meals.
Why do we do this? Why not simply pop open a can of commercial formula? After all, that takes only seconds and the cost is covered by Medicaid. No shopping, no preparation, no clean-up. You don’t even need a can opener. It’s scientifically balanced and has added fiber.
Well, to be honest, we did the commercial diet for several years. The formula we chose was a food-based formula made with beef and green beans and peas and peaches, all in an apple juice base. It helped our daughter grow and get stronger, but something was missing. Mothers have a primal urge to feed their children and mine was left unsatisfied. I longed to create nourishment for her. You dads probably scratch your heads over this one, but it’s just an instinctive thing we can’t help.
For several years we took a side trip down the Ketogenic Diet road to gain seizure control, and the g-tube was a tremendous blessing for that! My daughter would have undoubtedly refused to eat the diet by mouth even if she would have been able to, because she can’t stand oily textures. But the g-tube made that excursion possible.
During her time on the Keto diet, our formula maker switched its recipe to include Benefiber. Big problem for her. Why do manufacturers presume universal tolerance? When she tried going back on her formula, the Benefiber gave her excruciating cramping and gas. I dreaded trying those formulas whose ingredient labels read like the inventory of a chemistry lab. She’s a kid, not a laboratory beaker. Her digestive reaction to them was too impolite to talk about, so let’s just say we were left with no option but to blend food for her ourselves. We’ll leave it at that.
Inside, my excitement rivaled that of a child being told their family is going to Disneyworld. All those pent-up mother urges to feed my child real FOOD were being soothed with the possibility of being able to nurture with food again.
The leap wasn't scary. We started slowly, using the same ingredients she had tolerated well when her formula was a commercial food-based product. We bought jarred baby food that went smoothly down her g-tube until we saw how well she tolerated the foods. Gradually I added in new foods, one at a time, and we saw good benefits to her reflux and constipation and intestinal gas. I counted calories and balanced nutrients to make sure her diet was healthy (for a great free program to track all this, try this one here). Before long, we applied to Vitamix through their medical necessity program to get a super-blender for liquefying whole foods. That way we could give her fresh fruits and vegetables and grilled meats. We could actually afford the cost of her new diet by blending ourselves; jarred baby foods drive the food bill sky-high. That was nearly seven years ago and we haven’t looked back once.
We see good growth, with perfectly proportioned height and weight. Her muscle mass is good, given her limits to exercise, being non-ambulatory and unable to lift. I’m envious of her gorgeous hair and strong teeth. Reflux and constipation are well controlled now. She’s rarely sick and bounces back from illness quickly now. Her many doctors are always impressed at her general health and strong nutritional status.
Does blenderizing cost more than formula? Yes and no. Because we were paying nothing out of pocket for her formula before, and now we buy fresh ingredients for one more person, it does cost more from our family budget. But do you know how much insurance pays for a single can of formula? Multiply that times the 7 cans she would need over a day, and the cost for “medical” formula is exorbitant. Now, if it’s medically necessary, that’s one thing. But when it's just food that has been liquefied, then that is another thing entirely. Right now she needs a diet that is heavily mechanically altered, but she has no medical restrictions on what foods she can eat. I don’t feel right about having her food provided any more than I would for the rest of us oral eaters in the family. Especially when I can make her a week’s worth of meals for far less than a case of formula.
Does it take more preparation time than formula? Sure, but not much. I spend about 15-20 minutes each morning preparing her meals for the day. Included in that time is one spare meal for the freezer for use during travel or when I’m in too big a hurry to mix up a blend. That isn’t a huge time commitment.
Does it fulfill that mama-urge to feed? Absolutely! I get to orchestrate a whole medley of foods with strong nutritional value into just the right balance for her. Knowing that I can feed her foods that make her as strong as she can be feeds my soul too.
Meal preparation has moved back from the realm of the medical--popping open the top of a scientifically designed formula packed in a hermetically sealed can--to one of a mother’s expression of caring. The g-tube becomes simply another route to get food into the stomach.
The kids’ friends relate better to homeblended foods than to formula. The foods my daughter eats are familiar (ok, maybe broccoli and asparagus aren’t favorites, but the other kids know what they are! That’s more than I can say for “partially hydrolyzed whey protein”…). They’ve watched me throw a “peanut butter sandwich” in the blender to make her lunch…
two slices of whole grain super-bread,
a scoop of natural peanut butter, and
a hefty handful of frozen blackberries (in place of jam)
a container of yogurt for the complimentary protein
a handful of carrots because they just go so well with a pbj sandwich
The main difference between her lunch and theirs is the route it takes to get to her belly. Maybe she’s got lots in common after all…
Obviously, not every tube-fed child is a candidate for homeblended foods. There are plenty of medical issues that rule out this option. When that is the case, we count our blessings that we have the luxury of commercial formulas that can keep this child alive and healthy.
But when it is possible for children to take nourishment in its most natural, unprocessed form, that can be a gift. It’s something to think about… (and if you want a little extra food for thought, check out Barbara's post "You are What You Eat" found here). If you want to know more about blending foods at home for your tube-fed child, here are some resources:
Informational Books and Papers
Forums/listserves/Blogs
Please share the posts from this week's topic on tube feedings! It's so nice to see the support and encouragement floating around the Internet this week. Thanks for being a part of this.
Tube feeding posts of interest:
