untangling this thing we call life…

In the community of special needs and medicalised children, I often get asked about the way in which i feed Tom.  Tom has a complex and  mysterious difficulty with food.  He eats very few foods (really very few), and in tiny quantities.  Certainly not anywhere near enough to stay alive.  His problems started at three weeks old, and by 8 months we had to resort to tube feeding.  All the doctors and nurses were quite convinced that it was a temporary problem due to Noonan syndrome (many children with the syndrome have difficulty eating for the first year or two of life, though few of them need tube feeding).  So it was decided to use a naso-gastric tube (NG).  I cannot begin to describe the stress of dealing with an NG tube, nor the relief of being able to feed my baby just enough to keep him out of hospital.  Getting the thing down a nostril, past the gag reflex and into the stomach (not the lungs, that’s bad!) is quite stressful.  Now try doing that to an 8 month old who has sensory issues.  Stick the tube to his cheek (so choose the nostril on the side of the least damaged cheek), and try to get it done in double quick time, because even swaddling said baby in a tight towel, he WILL wriggle out.  Chances are, ten minutes later, he’ll have pulled it out and you need to start all over again.  Oh I’d forgotten the joy of vomiting so hard that the NG tube comes out of his mouth!!!  So one end poking out of the nostril, and the other end poking out of his mouth, the lot covered in vomit.  You just couldn’t get that past the censors for a horror film!

Tom with his button, kept cool, trendy and clean by Belly Buttons!

As scary as it was to make the decision to place a gastrostomy (surgery is involved to make a hole from the stomach to the skin), and as permanent as it made the tube feeding journey, it was the best things I could ever have hoped for.  Tom had an NG tube for a very long time.  These are menat to be temporary, but we had it for 8 months.  And although it involves no surgery (therefore no risky anaesthetic), whereas getting to a G button took two surgeries, the NG is actually far more risky to use.  It does get into the lungs regularly, however careful you are, and as any of you who have drowned know, liquid in lungs is bad news.  Food in there, even worse.  So… yay Gtube!

Luer lock syringe (Baxa, code H1560 female luer lock tip) and luer lock extension for Tom’s button

That takes care of the plastics.. basically.  A common problem with tubing is that the various syringes and attachments fall apart, usually in the middle of a feed and spray the world with less than pleasant gloop.  In the world on “normal” people, that is fould smelling, sticky formula.  In my world, it is often green or orange, smells of a strange smoothie, also sticky.  So… there is a really simple solution to this that noone ever tells you.  ALL extensions, syringes etc come with a version using what’s called a luer lock.  Essentially that a little screw.  Use those extensions, with the corresponding syringe, and no more explosions!

The biggest reason for this page is to explain how I make the mixture that I feed Tom via his tube.  When he was three, Tom became quite ill.  He was on what’s known as an elemental formula, in the thought that he must be allergic to… well everything.  That was thought to be the cause of the constant, violent vomiting.  When that elemental feed didn’t work, I asked the paediatrician if I could try things my way.  I wanted him to get a diet more in line with what a normal three year old would be eating.  The formulas that we’d tried had all been vile tasting, very fatty and pretty gruesome.  Mostly, they just weren’t working.  When your kid vomits at the very least once a day, more often two or three times a day, and we’re talking major projectile vomiting, something’s not right.

With the paediatrician’s blessing (that’s really, really important when you have a medically fragile child), I started by mixing some stage 1 baby food with milk – just to make it thin enough to go through the tube.  Four days later, the vomiting stopped… well almost.  He was vomiting maybe twice a week!

Tom needs a very calorie dense feed as he tolerates very little volume.  With a lot of searching online (thank you Internet!), I found a fantastic resource which gave me a tested formula put together by doctors to make a home made feed.  Take a look at this site:  kidswithtubes.org and specifically at the newsletter entitled “Nutrition for the tube-fed child”.  Lots of fantastic information, and the formula that gave me a starting point.

Before I go any further I need to mention hardware.  When I started blending Tom’s food, I used a standard blender.  It’s doable.  But your feed will require straining, and it will take a significant amount of work.  When you consider that Tom (who is tiny) requires 1 ltr of feed each day, you will realise that a standard blender is not going to be a time saver.  There are a few machines on the market that can do blended feed in such as way as to make it a truly manageable proposition.  Mine is a Vitamix and I have developed a strong sense of loyalty to this company.  They provide a medical discount for families who need a blender for this kind of reason, and their customer service is absolutely fantastic.

More to the point, I can put in all the ingredients for Tom’s feed (enough to last one and a half days for such a teeny boy), slip the switch, and it blends everything small enough to go through the tube and be managed by the feeding pump in a matter of minutes… less than ten.

For the purposes of thoroughness, all cereals I put into Tom’s feeds are uncooked, frozen veg go in there straight from the freezer and I do not chop anything at all.  Dump and blend!!

Now for the main course of this post… (oh yes, corny jokes and all!!).  As I said, I used the kidswithtubes formula as a starting point.  Over the years I have adapted it and use www.nutritiondata.com as a way of making sure that the nutritional balance of his feed is good.  It’s a great website that gives huge detail about any single food, but also allows you to create your own recipe with all the nutritional data you need to (hopefully) keep your dietician from having a stroke.  Dieticians HATE parents who make their own feed.  I have been told that things are slowly changing, but don’t hold your breath.

Tom’s feed – with mixed frozen veg and some spinach, soy mince and crackers

So… Tom’s feed:

3 cups whole milk

2 cups fruit juice

1/3 cup honey

2 tablespoons oil

1/2 cup soy mince, or 2 eggs, or a can of tuna/mackerel etc, or 3oz of meat (cooked)

1/2 cup oats, couscous.  When I make rice I cook 1/2 cup first.  At a push a handful of cream crackers take care of the carbs!

2 cups vegetables.  I do like a banana thrown in there sometimes, spinach gives a great green colour.  In a rush, the general frozen veg blend is lovely, and occasionally I use beetroot for a beautiful purple.  I do try to change the colour regularly, but in Tom’s case I have to keep the vitamin A veg to a minimum as he goes very yellow (that would be carrots, courgettes etc)

Blend in your wonderful Vitamix for about 5 minutes, pour into containers and you’re good to go into the fridge.  Don’t keep it past 48 hours.  This feed should give you just under 1 calorie per ml.

 

A little note on plastics.  Many professionals told me not to do this.  The reasons listed:

1. You cannot tell the nutritional value of the feed (see above, nutritiondata gives me more data than listed on commercial feed)

2. It’s not sterile!!!  No… nor is the food you put into your mouth.  The feed goes through a tube straight into the stomach and has no reason to touch the stoma in any way.  If it does, it’s no different to the small leakage that sometimes happens with formula – which by the time it’s hit the stomach doesn’t much care about sterility.

3. Cleanliness and hygiene can’t be guaranteed.  No. But if you’re worried about my ability to keep tubes etc clean, what feed I use won’t make any difference.  So long as I have the basic knowledge of food hygiene, and how long to keep this in the fridge ( not out of it etc), your concerns are meaningless.

4. You can’t hang it overnight, it’ll go off.  Not an unreasonable concern.  The feed is kept in an airtight bottle, so there are no contaminant.  Tom is fed by pump 8 hour a night.  In 6 years, he’s never had an upset tummy.

5. Plastics will degrade faster (cost, cost, cost).  Not true.  While using formula, I needed 2 extensions a week.  Now I use at most 2 a month.

6. The tubes and button will get blocked.  If the feed can go through the tube,it can by definition go through the button.  When pump feeding, the pump tubing is even narrower.  Occasionally I get a blockage in the pump tubing.  In 6 years, I have never blocked a button.  When on formula, the button did get blocked by a build up of fat that I just couldn’t shift – and the methods used to de-block were ridiculous – from pineapple juice, to coca coal, to a toothpick if desperate.

Dieticians have been trained to understand commercial feeds provided by pharmaceutical companies.  Thirty to forty years ago, they would have been using blended food.  But the emphasis was moved – partly for good reasons, because with fragile children it is scary to entrust their care to parents..  Partly for bad reasons – the companies make money only if the dieticians promote their feeds.  For them to accept blenderized feed is very difficult because it goes against everything they’ve been taught.  But I do think it’s very important when you have a tube fed child to listen to your instincts.  Making your own feed is more work than opening a bottle.  On the other hand, it gives you back the power of being a mother.  So much mothering is invested in feeding.  We nurture, that’s our job. And having a child who will not or cannot eat attacks something fundamental about that role.  As much as I resent having to make yet another batch of feed sometimes, I would never go back to opening a bag of a viscous fluid that only slightly resembles food.  In my case, this opinion is hugely backed by the fact that all the various formulae we tried resulted in massive, violent vomiting on a daily basis for Tom…

Whatever you decide, if it gives you peace of mind and your child is thriving, is the right decision for you.  If you give blenderized feeding a go, enjoy!  If not, just think of the green and purple stains I clear up on a fairly regular basis when some minor incident has happened 🙂


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