Homeblended Foods for the G-tube

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
Homemade Blended Formula Handbook by Marsha Dunn Klein and Suzanne Evans Morris
New Visions informational articles by Suzanne Evans Morris

Forums/listserves/Blogs
You Start with a Tube blog (be sure to read this post on the pros, cons, and controversies)

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:




10 comments:

Aadhaar said...

Great post Rose-Marie, I loved your story. It still does not cease to amaze me the issues so many otherwise well-meaning medical professionals have with feeding actual food to people with g-tubes when they have no actual medical reason that contraindicates food. Good on you.

Rose-Marie said...

Thanks, Eric. It bewilders me as well that some medical professionals would prefer a chemical concoction for children (and adults!) who could benefit from real food. I scratch my head...

Actually, I left out a very special part of our story. We have been blessed with wonderful dieticians over the years who have been wholly supportive and enthusiastic over our daughter's blended meals (her improved health doesn't hurt her case!).

Our original dietician has been a very vocal proponent of blended meals for g-tubes in our region. She is the one who had us start with commercial formula made of real foods, trying to keep our daughter's nutrition as close to "natural" as possible. Our family had so much going on at that time that the can-popping, while distressing to my maternal instincts, did fill a practical need.

But down the road, when we switched to real foods, she was a marvelous advocate. I wish every family whose kids were eligible for a blended diet could work with such a supportive professional. We truly, truly have been blessed.

The MacDonald Family said...

Great post! Thanks for sharing - I love the Pbj sandwich! My little Annie is on tube feeds and my background is nutrition - I cringe every single time I open a can of her formula! The good thing is it's only supplemental, at night through a pump. She eats orally during the day. Do you do night feeds? If so does the food stay fresh through the night while the pump is on and does it stay mixed or does it eventually seperate? We used to give raw milk through the tube but it would seperate, the fat would float to the top and then it would clog and the pump would shut off. Thanks!

Rose-Marie said...

Thanks, Bridget. With your background and expertise, you would probably really find homeblending to be fulfilling.

Our daughter no longer takes overnight feedings. Quite a few homeblending families do feed through the night, though, and it works. In the summer, many place the feeding bag on ice to keep it fresh. Whether the food separates or not is a matter of experimenting. When we leave our blends in the fridge overnight, some mixes separate a little and others stay well mixed.

We had a similiar problem with milk fat on the keto diet (actually, our cream churned to butter at the pump wheel!), but now that our mixes include a variety of foods, we don't seem to have the same problem with fats rising.

It's certainly worth a try for Annie! The variety she gets with her food in the day probably meets her health needs, but it might give her an extra little boost to get the same quality of good nutrition overnight too.

Anonymous said...

I found your site by looking for pbj recipe for feeding tube , and I feel like I hit the jackpot !

I hope that you little girl is doing great. My heart goes out to you.

My husband had cancer of the larynx. Even though the cancer is gone he still cannot swallow and has a feeding tube. He was literally starving to death when were using products such a Ensure. I decided I try to blend my own fresh vegetable , meats and fruits. Within 2 weeks of doing this for him he started to gain weight and is still holding his weight at 159.
I cannot thank you enough for the information you have shared.
Will keep you , your daughter and family in my prayers.
MClem

Rose-Marie said...

Thank you so much, MClem! I'm delighted to hear your husband is enjoying some weight gain. I hope he continues to progress as he eats a wide variety of real foods.

Unless he has food intolerances that limit the things he can eat, the sky (and the blender) is pretty much the limit. Often I use a standard recipe as a template, swapping out a processed food for one that is more basic (ie: using raw fruit instead of jam, or a grilled pork chop instead of pork sausage). I also tend to use whole grain cereal or bread in place of pastas, since they tend to thicken up less than pasta for me.

Enjoy your blending adventure! Congratulations to your husband on his victory over cancer and to his new weight gain. That's great news!

God bless,
Rose-Marie

Anonymous said...

Dear Rose-Marie,

I want to first thank you for such an awesome, informative and uplifting story!

I am a nursing student assigned to create and demonstrate a teaching plan for g-tube home-care; which led me to your site. Thank you for sharing your experiences and helpful tips and suggestions.

I praise you & your husband for all your family has endured and for taking control of your daughters nutritional needs and feeding her fresh, healthy, 'normal' meals!

May God Bless you always!
Ande

Rose-Marie said...

Ande, I'm so glad you stumbled on this post. I hope there are things here to encourage you as you teach and support others. More and more doctors are beginning to see the benefits of whole, nutritious foods--whatever the route into the body!--as our kids come into their offices healthy. Good nutrition pretty much speaks for itself!

Blessings on you in your nursing career!
Rose-Marie

KarenS said...

This site was very helpful and enlightening. I am helping a friend with salivary cancer. He is now feeding through a tube as his cancer has made chewing and swallowing painful and difficult. I have been blending nutritious foods based on high alkaline and blood type. Non GMO, no chemicals, no artificial or other such nonsense the manufacturers put into the canned formulas. I wonder how does one prevent the separation issue. We do need for calories to include flax seed oil. Would a gelatin like agar help prevent separation? We avoid processed foods and cannot used anything corn or dairy based. Any ideas on what would be helpful. My heart goes out to all who have loved ones on feeding tubes and appreciate those who have shared their experiences.
KarenS

Rose-Marie said...

Karen, I'm glad you found the post to be helpful.

Your friend is so fortunate to have your support. Strong nutrition during treatment and recovery from cancer and other illnesses is so important too. A blended diet is a great way to accomplish this.

Knowing nothing about high alkaline diets myself, I don't know if my suggestions are useable or not. It is true that oils separate out from blends and that thickening the blends somewhat will help to keep it mixed. A small amount of agar might help but won't raise the calories. Cooked brown rice is a good thickener, though you have to be sparing or it can make a blend too thick for a feeding pump to handle. Avocado thickens and adds calories; again, it is one of those things that can make things quite thick. We use small amounts of oil, probably less than what you are using, and find that they stay emulsified in the blend pretty well. I run the Vitamix on high for 5-7 minutes for 4-meal batch (less for smaller ones). What separates out more often for me is water, but when I shake the container it mixes right back in.

I hope some of these things are allowed on the diet you are preparing. Good health to both you and your friend.

Rose-Marie