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Blended Diet Feeding Tube

Starting A Blended Diet For G Tube Feeding & Easy Recipes

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My daughter Avery has been tube fed almost her entire life. She went from having an NG tube to a G tube, and this summer, I decided to start transitioning her onto a blended diet.

What Is A Blended Diet?

If you’re familiar with tube feeding, then you’re probably familiar with ready-made feed. It’s designed with tube feeding in mind, and from my experience, it doesn’t smell or taste very good. They also have a very intimidating looking ingredients list.

A blended diet is pretty much what is says on the tin. Real food, blended.

Is A Blended Diet Right For Me?

I made the decision to transition Avery onto a blended diet after lots of research, consulting with her medical professionals and gaining a lot of information and advice from her dietician. If you’re considering making the change – I would strongly suggest you do the same.

There was a few reasons I decided to make the change.

Avery has severe reflux. Giving her a blended diet means we can control and trial the foods we give to her. Of course, there are obvious foods that we can avoid like citrus fruits and tomatoes, but we can also observe to see if there are any other foods that she is more sensitive to and adjust.

The idea that she is having food instead of feeds is comfortable, it feels more like she is having meals. We can even blend whatever were having and involve her in our meal times.

I won’t lie, it’s probably not the easiest and most convenient option. I live in the UK, so Avery’s G tube feed was always supplied to us through the NHS, it’s ready made and ready to go.

With a blended diet, you need to buy the foods you will be blending – if course it shouldn’t make too much of a difference if you’re blending the meals you’re already making, but this isn’t always the case. Like I said, Avery has reflux – so there are a lot of foods that we eat that we would prefer to avoid for Avery. You then also need to prepare, cook and blend the food. It’s a bit of a process, especially if you chose to batch.

Another reason I chose to give Avery a blended diet is, well – the goal is to get her eating. With a blended diet she can taste her food. Giving her a few tastes of her blend before it goes down her g tube will help her associate tasting food with the feeling of fullness. I haven’t tested this theory yet, but it makes sense, and it’s definitely something we can build on.

The very beginning of our blended diet journey

Let’s Talk Blenders

The blender you chose can have an impact on the options and food you can include in a blended diet. There are affordable options, but you might find these just won’t blend everything, like ground beef for example. Food has to be really smooth to avoid blocking the tube (which we have done a few times – it’s all trial and error).

I invested in a Vitamix Explorian E310, and from what I can tell this is the entry level Vitamix, but it still has a hefty £399 price tag! I won’t lie I wept a little when I said goodbye to almost £400 for a blender – A BLENDER!

But, from the research I had done, the Vitamix seemed to be top dog, and capable of blending just about anything. I already had to restrict Avery’s diet because of Reflux, I didn’t want to have to restrict it any further.

You can find the blender we chose here – https://sovrn.co/19h2gc9

Calories And Volume

A lot of tubies can be volume sensitive – the good thing about the g tube feed is that its easy to figure out the calories, and Avery’s Compleat Paediatric was 1.2 calories per ml – so pretty calorie dense which meant we could get away with a lower volume.

This is something to think about if you’re considering a blended diet. Your blends need to be smooth and thin enough to pass through the g tube, and not all foods, particularly fruit and vegetables are high in calories, so sometimes it can be a little bit tricky to make sure you’re reaching your advised calorie requirement.

With that being said a lot of people like the blended diet as you can work with portion sized instead of calories. There are also low volume, high calorie foods that can be added to any blend, like peanut butter or olive oil.

Whether you chose calorie counting or portion sizes – you should always keep an eye on your weight gain/loss. Obviously this is more important in babies and children, Avery is only 18 months old and still growing, so it’s important for us to weigh her regularly to make sure she is getting enough nutrients to keep her healthy and growing – but these are all things you will have discussed with your medical professionals.

The reason I purchased the Vitamix – My batch cooking disaster

Starting A Blended Diet

If you or your tubie already eat some food orally, you’re at a great starting point, especially if they’ve explored a wide range of foods. Avery had only eaten small tastes of purees, and we hadn’t explored many allergens. So I started with simple blends of foods she had eaten orally that I knew she tolerated and likely wasn’t allergic to.  

For nil by mouth tubies – I’ve heard starting with a simple bone broth and adding from there is a good way to go.

From this point on I found the best way to move forward it to think of it as baby weaning. Simple foods at first, no added salts or sugars, and only introducing a new allergen every three days.

My Recipes

I’m not sure if I could call these recipes as such, but these are the blends I’m making now – Avery is still early in her blended diet journey. So our blends are easy and simple.

As Avery has reflux, you will notice I use some diary substitutes – she is not dairy free, but the fat in dairy can make reflux worse, like I said, it’s all trial and error.

We also add prune juice to some of Avery’s blends – this is purely because we like to use banana, it’s hearty and high in calories, but it can be constipating, so we use prune juice to help counteract that.

You can of course, adjust all of these recipes – but the basic consensus to remember is to include all food groups – protein, carbohydrates, fruit and vegetables, fibre and fats.

Banana, Baby Porridge, Peanut Butter & Prune Juice

This was our first blend – It’s high in calories, all food groups are there and it’s simple. Baby cereal is a great carbohydrate for first blends, especially if your tubie is little, it’s easy to blend and the baby porridge I use is oat free – peanut butter is an allergen, remember to only incorporate one allergen every three days.

Scrambled Egg, Avocado, Bread & Soya Milk

Bread, avocado, scrambled egg & soya milk

I found this to be a nice savoury option. I used brown bread and treated it as an allergen because of the wheat. Just remember when chilling or freezing blends with egg, meat or fish – you need to reheat it to 75 degrees Celsius to kill off any bacteria.

Chicken, Sweet Potato & Carrot

You can use any liquid to thin this one down, we just used soya milk as its what we keep for Avery’s blends. Chicken is a great source of protein and its high in calories. I did notice that I couldn’t get this blend smooth enough until I had purchased the Vitamix.

Blueberries, Coconut Yoghurt & Farley’s Rusks

Farley’s Rusks, coconut yoghurt & blueberries

I didn’t end up needing an additional liquid for this blend. I soaked the rusks in hot water turn them into a puree before adding to my blender. Blueberries are considered brain food and full of anti-oxidants.

You can see the general rule with all of these blends, they cover all food groups and they’re fairly simple foods with mild flavours.

Like I said you can switch up these recipes easily if you follow the general rule.

You can use a variety of fruit and vegetables, I tend to stick to ones that blend nicely and don’t have seeds, I tried using raspberries once and it resulted in an emergency tube change.

Cereals are a great source of carbohydrate and fibre – I have soaked Cheerios for blends, and I have used Weetabix. I haven’t tried oats yet as Avery once had a reaction to an oat-based baby lotion so were a little hesitant, but oats a very nutritious and a great food to use, just treat it as an allergen.

For proteins, you can explore meat, fish and eggs for savoury blends, and dairy is a great way to add protein to sweeter, breakfast-style blends.

I hope this helps. In case I didn’t get my point across throughout this blog post, please consult with your medical professionals and dietician before making this transition – blended diet may not be for everyone.

Categories
Special Needs Family Life

My Daughter’s Brain Injury

If you’re familiar with my website, my Youtube channel, or my brand in general, then you probably already know that my daughter, Avery has complex medical needs. 

Avery’s story is both a sad and a happy one. The strength and resilience of this tiny human still blows my mind. She is both unlucky and lucky, a tragedy and a miracle – and over the last year I’ve really been trying to keep my thoughts positive and focus on the latter of those statements. 

I’m going to add a TRIGGER WARNING here, because although I am focusing on just how incredible my daughter is, her story may be upsetting to some. So read on at your own discretion – if you are easily triggered by trauma, particularly involving an infant, perhaps one of my other blogs would be a better read. 

You’ve probably heard about babies born with oxygen deprivation, whether that be an already present condition, a labour complication or a premature birth – but this didn’t happen to Avery.

So how did Avery end up with a brain injury? You may ask.

Just minutes old

Avery was born healthy, after a very straightforward 6-hour labour and two pushes, she was in the world, beautifully pink, crying, with not one concern.

We spent three exhausting, incredible days as a completed little family in perfect, oblivious, bliss. 

I’m going to skip a little here, purely because my heart and mind are just not ready to relive how it all happened yet – but long story short, Avery survived a 40+ minute cardiac arrest.

That’s incredible right? I still can’t comprehend it, 40 minutes?! How is that even possible? Well it is, my amazing, strong three-day old baby girl did it.

What amount of damage can 40 minutes do?

It didn’t take a Doctor to tell me that Avery would have suffered some severe oxygen deprivation. After all, 40 minutes is a very long time – did I mention that my daughter is incredible?

A few days after Avery’s event, she had an MRI, which revealed that Avery had a severe brain injury. Her damage was mostly in the areas of her Cerebellum and Hippocampus. Was I shocked? No. Did that mean the news didn’t completely devastate me? Absolutely not. Was I still incredibly grateful that she was here and fighting? Heck, yes!

The day Avery graduated from PICU, also the day the bow became her trademark

How did this damage present in Avery?

We are still very early on in our journey, Avery is only now about to turn 17 months old, so we still have a lot to learn about Avery’s brain injury and how it will affect her in the future. 

The Cerebellum is responsible for motor skills, coordination, balance, posture… so in my non expertise, it pretty much sounds like that’s the majority of physical development, right?

When thinking of the hippocampus, my brain went back to what I had learnt from my Mum – she has a lot of knowledge about Alzheimer’s and Dementia from her job, so I immediately assumed Avery’s memory would be affected. 

Physically, it doesn’t take close observation to see that Avery’s diagnoses line up with her development – it’s slow, inchstones, not milestones.

I’ll be honest, I have absolutely no idea if Avery’s memory is affected. I’d like to think it isn’t. She remembers people, TV programmes, routines – I can tell that by the beaming smile she graces our presence with when she’s anticipating her favourite things. 

The Secondary Diagnoses

Avery’s primary diagnosis is Hypoxic Ischemic Encephalopathy (more commonly known as HIE) – for us non Doctor’s, it basically means a brain disorder caused by a lack of oxygen and blood flow. 

Most of her other conditions are all secondary to her HIE. She has Cerebral Palsy, what type I am still unsure of, I can only assume her neurologist wants to give her more time before we can be certain – what we do know is that she has spasticity (I hate that word but it is the correct medical term) in her arms. That means that her muscle tone is too high, causing her arms to be very stiff and tight. Her trunk and neck however, are the opposite. 

She was also diagnosed with Dystonia when she was six months old. Dystonia is a medical term for a range of movement disorders. Avery’s Dystonia causes her to have uncontrollable spasms.

She also has severe reflux, now this one we can’t be 100% certain that it was a direct result of her brain injury – she could have had it anyway. 

Avery is also g tube fed – this isn’t a condition as such – but is still a direct result of her brain injury. Motor function and coordination are all needed to eat and drink as well. I had no idea that so much went into it – which kept me incredibly deflated all the times I tried to get Avery back on the breast – turns out it’s a lot of hard work! 

Needless to say,

Avery is my daughter, not her disabilities.

It took me a really long time to really comprehend this point, guilt is a really tough pill to swallow. Avery has really helped guide me along the way – as she gets older, her character shows through, and man, doesn’t she have character!

Yes, she is disabled, there are things that she may never be able to do. 

Will she walk? We don’t know. 

Will she talk? We don’t know.

Will she ever be able to eat? Again, we don’t know.

The unknown is the single most hardest thing about this situation, but I found that when I stopped wondering what she will and won’t accomplish, and started solely enjoying her for who she is now, everything just felt so much more promising, and I found acceptance.

Avery will decide what she will do when she is ready, in the meantime, it’s my job as her Mummy to just love her and enjoy her for all of the incredible things about her right now.

Avery is an incredible, strong, happy little girl

And what can she do?

She can smile, she has the most beautiful smile that radiates joy to those around her. 

She can play, with a little help from us she’s found things that she finds enjoyment in. 

She can progress and develop, and she is (inchstones, remember!) Everyday, little by little, she is building strength and balance and coordination.

She can give and receive love – I don’t need her to be able to talk to know this without a doubt. 

She can experience the world around her, there’s absolutely no reason why she should ever miss out. We’re in a day and age now where disabilities are recognised, accepted and catered for. 

I could go on about all of the wonderful things about Avery and her special life, but I’m sure you get the point.

Avery’s brain injury does not define who she is, those sweet, amazing little things we discover about her each day are the things that matter. 

She is my superhero, the strongest, bravest little girl I will ever know.

Categories
Feeding Tube

NG Tube or G Tube: Which Is Right For My Child?

There are SO many reasons why a child or baby might need a helping hand with getting nutrition into their body. Brain injuries, premature birth, gastrointestinal issues….

The list goes on!

I am NOT a medical professional so I can only speak from my personal experience. My daughter, Avery suffered a hypoxic event at 3 days old, as a result she has Cerebral Palsy among other conditions. 

Her coordination took a massive hit, which includes the huge amount of skill it actually takes to eat, as much as we can take it for granted!

Which leads me to the topic of this blog.

If you’re more of a watcher and less of a reader, I have a YouTube video that covers all of the points in this blog and more.

What Do I Know?

If you’re reading this blog I imagine you’ve already got some idea of what an NG and a G Tube are. 

Avery has been tube fed almost her entire life, apart from the small stretch of time before her event when we were blissfully oblivious to what we would soon have to face. 

She had an NG tube from the PICU days up until April 2022 when she had her gastrostomy surgery for her new Mini Balloon Button to be placed.

Just before Avery’s gastrostomy surgery

What’s The Difference?

The name suggests (Naso-gastric), the NG tube is inserted through the nose and makes its way down to the stomach. The G Tube button is inserted directly through the surface of the abdomen into the stomach and is held in by a little water filled balloon.

There are other types of G Tube – But once again, I am not a medical professional, so I can only speak from experience, so I’ll be referring to the Mini Button.

Pros & Cons

They both have them.. and I could go on for hours about the challenges we’ve dealt with while adjusting to the tubes. But I’m sure you don’t want to see paragraph on paragraph of me droning on about all of our encounters – so I’ll try and keep it simple.

NG Tube

Temporary – The NG tube is usually what’s recommended when it’s only a temporary situation. It can be inserted and removed at home by whoever is trained to do it.

‘Simple’ Procedure – I say this subjectively because it’s not a pleasant experience to pass a new tube, but by simple, I mean it doesn’t take surgery. 

The risk – On its merry little way to the stomach the NG Tube passes a couple of very important organs – the lungs. The tube could potentially move to the lungs – you can imagine worst case scenario, but aside from that, it can cause chest infections. A chest infection in an already vulnerable child can lead to much nastier things.

PH Testing – Yes this is the only thing we had to prevent the previous risk, but it’s a tedious task. Especially since Avery was taking Omeprazole which made those little strips very difficult to read.

Reflux – We were told countless times by a certain medical professional that the NG tube shouldn’t affect reflux, but after doing our own research, low and behold – it does!

Discomfort – I don’t think this point needs much explaining, there’s a tube in the throat.

Appearance – Superficial I know, but obviously, the tube is inserted through the nose, which means it needs to be taped to the face. I can’t speak for Avery’s opinion but if it was me, I would most definitely feel self-conscious.

G Tube 

We use absorbent dressings to help control the granulation tissue

Low Profile – A G Tube can be easily hidden with clothing – The Mini Button in particular is very discreet is it’s just a small button on the surface of the skin. An extension set is then attached to the button for feeding.

Blended Diet – I’m only touching on this briefly as we’re not quite at this stage yet, but we will be! G Tubes are bigger in diameter since they don’t need to go down the nose. So there are more feed options, including real blended foods (Very much looking forward to this).

Surgery – Since this tube is inserted through the skin there is surgery involved. Definitely not a nice experience as a parent or for Avery – or so I assume since she was in too much pain to be held for 2 whole days.

Infection – This risk comes with any surgery. We’ve been battling infection ever since the surgery. I don’t want to scare you hear – Avery’s Tube is too big in length which is basically what caused the infection, and since we can’t change the tube until the 3 month recovery mark – antibiotics and dressings it is!

Fast Healing Time – This seems as though it should be a pro right? No, the stoma heals super fast, so if you have a curious child that manages to pull out their tube and you don’t notice in time – you’re basically back where you started.

What’s right for my child?

I can’t answer that for you, but I hope this post has helped you gain a bit of knowledge from a Mother’s perspective. 

For our family and Avery, I still think we’ve made the right choice – infections and all! 

It’s so nice to be able to see Avery’s hold face without tapes taking up the majority of her cheek, and she no longer screams when she gets put down on the floor in anticipation of the dreaded NG Tube change. 

The option of a blended diet was one of the biggest advantages for me, the idea that she can still be consuming real foods made at home. I’ll be sure to leave an update on how that goes when her stoma is fully healed. 

I hope you decide what’s best for your child and your family. But just remember when making your decision – fed is best, no matter the method!