I'm so very grateful to Melanie Dimmitt, for taking the time to contribute a guest post for my blog. In this post, Mel writes about her tube feeding experience with her son, Arlo. She also tells us about The Blend, a free magazine-style resource that she created for anyone interested in a blended diet for tube feeding. There are fantastic articles, beautiful photos, recipes and lots of helpful information. I wholehearted recommend it and congratulate Mel for bringing this incredible project to life. Melanie is a professional writer and has authored a book called Special: antidotes to the obsessions that come with a child’s disability. Thank you so much Melanie, for your contribution to the Natural Tube Feeding Blog! ~ Claire
Mel's Blended Diet Story
The purchasing of Weetbix and yoghurt would not normally be considered an illicit act. But on one dark night, as I rushed these items through the supermarket checkout, I felt positively criminal.
Six weeks earlier my five-year-old son, Arlo, had undergone surgery to place a feeding tube in his stomach. Prior to this, Arlo had been spoon-fed a variety of pureed meals - spaghetti bog, chicken casserole, vegie stew and, for breakfast every morning, Weetbix mashed up with his favourite “Boysenberry Twist” yoghurt.
Arlo has a physical disability which makes it hard for him to eat and drink. Supported by a team of speech and feeding therapists, he’d been hard at work, for years, building up his chew and swallow. Things appeared to be tracking along nicely until just before his fifth birthday, when a modified barium swallow x-ray revealed that he was ‘silently aspirating’ on every bite and sip.
The solution was simple but seemingly ruthless. Forevermore, Arlo was to be fed ‘nil by mouth’.
Two weeks later, we left the hospital with a newly inserted G-tube and a carton of commercial formula. Arlo’s regular diet of breakfast, lunch and dinner switched to six bottles of “nutritionally complete” liquid that would be pumped into his stomach. We plugged him in and hoped for the best, but before long, Arlo started suffering bad reflux and aspiration that was anything but silent.
After his second hospital admission in as many weeks, I asked Arlo’s medical team if we could try something I’d heard a little about - ‘blended feeds’ - where real food is blended and syringed through a tube.
“Eventually,” said Arlo’s paediatrician, feeding specialist and dietician in separate conversations. “But we need to get the formula right first.”
A further four weeks of girl-in-the-Exorcist-like reflux later, after helping Arlo cough, retch and splutter himself to sleep, I sped to the supermarket and bought his former breakfast combo of Weetbix and yoghurt. The next morning, I deposited this contraband directly into Arlo’s mouth and he enjoyed every forbidden spoonful of it. As I would later tell his very understanding paediatrician, we went rogue.
In the days that followed we took advice from a Facebook group of more seasoned tube-feeding parents and gave blended feeds a go. We prepared Arlo’s favourite purees and blended them a little thinner, so they could be syringed through his tube.
Once we told Arlo’s dietitian what we were doing, she relayed several calorie-rich blended recipes we could try. We found shelf-stable pouches of pre-blended food that meant we didn’t have to rev up the Vitamix before every meal. We found Canadian dietitian Claire Kariya and her blenderised tube-feeding cookbook, and mastered a few of her go-tos.
Arlo regained his colour and charisma and, in the 10 months since, has stacked on a bunch of much-needed weight. Now back to his sparkling self, with the added benefits of ample hydration and much less messy medicine administration, blended food is what’s right for Arlo. But I’m not here to trash-talk commercial formulas that work beautifully for countless people who are tube-fed. I’m also not endorsing going against medical advice.
What I want is for people and parents who are new to this space to be presented with all of the options - and to know that tube-feeding is different for everyone. Getting it right can take a bit of trial and error, and a lot of trusting your gut.
In the spirit of imparting this message I’ve made a free, magazine-style resource called The Blend that’s now available to read and download online.
The Blend shares stories, tips and recipes from parents, people and professionals in the tube-feeding space, along with a directory of useful products and articles exploring the practical and emotional sides of the transition to tube-feeding.
It’s a celebration of the diverse mix of tube-feeders out there. The people who are doing this thing in a way that works for them - whether that’s blending a Happy Meal for their kid at McDonald’s, pumping formula into their toddler overnight or training themselves off a tube and back to oral feeding.
I hope The Blend gives readers a glimpse of what this experience can look like, and takes some of the mystery and medicalisation away from this different - but no less worthy - way to thrive.
Written by: Melanie Dimmitt
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Check out Melanie's book 'Special'
Check out Melanie's magazine 'The Blend'