Perspectives Series: Louise and Oliver

Perspectives: Louise and Oliver

 In our perspectives series we hear from other people and their experiences of the blended diet. Everybody has a followed a different path, by sharing their unique story we all gain a new perspective and probably learn a few things along the way. We are all part of an incredible community of which we are very proud to be part of and we always love hearing from others, and we hope you do too.

Tell us a little about yourself and your tubie?

Hello, I'm Louise & I’m a Mum of 4. My youngest son Oliver is 8 years old. Oliver's life so far has been complicated to say the least! Oliver is autistic & he was also born with a rare chromosome deletion (6q26q27 deletion syndrome) & a whole range of complex health needs & hidden disabilities. He keeps us on our toes, but he is such an incredible little boy with the most amazing smile. He has a love of singing & of sports & he doesn’t let his disabilities or his limitations define him or get in the way of him doing what he wants to do. 

From the moment Oliver was born we noticed problems with his feeding. He wouldn’t take much formula, he was very particular about what bottles he used, he aspirated on feeds & he developed lots of chest infections. He also had reflux resulting in lots of vomiting after feeds. He was given various medications & thickened fluids which he didn’t take to. We also tried early weaning (under specialist instruction) which was also a huge challenge. Oliver began to show a lot of sensory preferences with food & continued to only eat very small amounts and very particular foods. He never seemed to show that he was hungry & he often refused his meals. He got poorly a lot & required a lot of hospital admissions for IV fluids.

By the age of 2 his weight had dropped significantly & it was at this point it was agreed that he needed a feeding tube in order to thrive. In 2016 he had the surgery to have a gastrostomy (peg tube) fitted. In 2017 that was changed to a mic-key button.  

What started you on the blended journey and how long have you been doing it?

Despite trying a whole range of formulas & supplements via the tube, Oliver still really suffered with his reflux & had issues with volume meaning he could only tolerate small feeds. His nausea & vomiting continued too but he wasn’t a suitable candidate for surgery for the reflux.

He was later found to have cows milk protein allergy, soya allergy & poor volume tolerance /  poor tolerance of the formula feeds. 

We tried multiple milk free & hypoallergenic formulas, medications & supplements but nothing made a difference. He continued to only tolerate very small volumes of formula even via tube and he only grazed on a very limited range of foods orally meaning he still wasn’t gaining much weight. The gastro team said that he would likely need a GJ tube (to let his tummy rest & slowly feed formula directly into his bowel) but his dad and I wanted to try whatever we could to avoid more surgery & wanted the GJ tube to be a last resort. 

In 2020, after a lot of research, we made the decision to start him on a natural blended diet & it’s the best decision we ever made!

We started off really slowly (in case he had any other unknown allergies) but we're now at a point where we can give him a wide range of family meals (high calorie but low volume). It’s a constant learning curve - but we love experimenting with different meals!!! 

What impact did the blended diet do for you and your tubie? 

The impact of starting a blended diet has been life changing for us. Oliver’s reflux is much more settled, he’s no longer in discomfort & the vomiting is minimal. His stools are much better too. He’s healthier in himself & he’s got more  energy. He had blood tests done recently & all of his nutritional bloods came back within normal range too which is just incredible. He’s also gaining weight - it’s slow but it’s steady! 

Is there anything you know now that you wished had known then?

Looking back - I wish I’d known about blended diet sooner. If I had, then I’d definitely have begun it much earlier! I wish that there had been more information readily available then we could have gone down this path when Oliver was younger. We have had several dietitians over the years and none of them ever mentioned blended diet. When I did approach the subject they made out like it was dangerous & frowned upon the idea. I really wish I’d been strong enough to follow my gut and start it sooner. Luckily we now have an amazing dietitian who is very pro-BD and very supportive of it. 

Biggest or funniest blended mishap (if you don’t have one I am very envious, our walls and ceilings have a lot of stories to tell)!

If your walls, ceilings, furniture & clothes haven’t been splattered by a blended meal then you’re definitely not part of the BD club (or you’re very lucky)!! I’ve lost count of the amount of times I’ve forgotten to clamp the tube, not connected it properly, or even dropped a blend on myself! It’s usually the sinister coloured blends too & they usually end up in my hair!

Favourite blended meal or favourite ingredients

I know a lot of people batch blend but my personal preference is to make the feeds up fresh - due to Oliver’s volume intolerance I like to make small meals and fortify them with extra calories using things like nuts, seeds, avocado oil, tahini, peanut butter. I love the fact that I can feed him anything - it so lovely seeing him be able to join in with things like Christmas dinner which he wouldn’t have ordinarily done. It’s an amazing feeling knowing that I can give him so many fresh ingredients & foods that my other children would have been very reluctant to try. 

Any blending top tips or hacks

My top tips would be to seek advice off other BD families & websites like Wilbo’s blends as the information is invaluable. 

Also ask your dietitian for a wider extension tube as this makes it easier for feeding blends. It’s also a good idea to ask them to calculate your child’s nutritional requirements for things like calories & protein intake too. 

What made you first use Wilbo’s Blends?

I initially won some wilbos blends in a social media competition & after trying them once I was sold!! I’m now a returning customer! They are so valuable for days out, hospital stays and those days when you just want a quick, hassle free meal. They’re a life saver at times & I’m excited about the new meals being released in the future.

Who would you invite to your Blended Dinner party and what’s on the menu (blended or not)?

I’d invite the whole of the Instagram SEND /  BD community for a dinner party as the support on there has been phenomenal. A large scale roast dinner with all the trimmings would be amazing!! 

Finally what tip would you give to somebody starting the blended diet journey now.

Just breathe… it’s easy to get consumed with worry about every little detail & it’s easy to worry yourself sick about whether or not you’re including the right ingredients & meeting your child’s dietary needs. It’s also easy to overthink & overcomplicate things (I’ve been there many a time!) 

If we are feeding a child orally we don’t  put this much stress on ourselves so why should tube feeding be any different? I know some people need specific diets for medical reasons but I’d say don’t panic and seek out as much support as you can. It’s all a big learning curve & it’s a really exciting journey to be on.