It's #FeedingTubeAwarenessWeek so as a Tubie Mum, I'm sharing some insights into our life with feeding tubes.

Boy, are you in for a treat!

TW: images of hospitalisation

There are many, many reasons why someone might need to use a tube to eat, from an accident or a short term illness, through to lifelong conditions and disabilities. A lot of these reasons are not visible.

#FeedingTubeAwarenessWeek

The reason for a feeding tube in our lives is that my kiddo was born unable to swallow. She still isn't able to (swallowing is a tricky thing to teach!), but she grows and thrives because of a feeding tube.

We knew a few months before she was born that kiddo had swallowing problems. It was confirmed when she emerged that she had a gap in her oesophagus. She got her first feeding tube 24 hours later.

http://www.tofs.org.uk 

The first tube was a TAT tube;
Transanastomotic Tube, straight into her mouth, across the new join in her foodpipe, and into her tummy. She was fed breastmilk in tiny amounts, by measuring it into a syringe and 'gravity feeding' (holding the open syringe higher than her mouth).

Once she had new nasal passages (that's another story), we were able to move on to a NasoGastric tube - up a nostril, down into her tummy. Terrible for grabby babies who think it's hilarious to pull the tube out.

A variation on this is an NJ tube (NasoJejunal) up the nose, straight through the stomach and ending in the small intestine. Great for some, was very traumatic for us. Feeding must be slow and continuous, as the small intestine can't digest like stomachs can, so requires a pump.

Our next type of feeding tube was a Monarch PEG tube. This is placed surgically into the stomach wall, with about 15cm of tube hanging out of your tummy to attach to syringes or giving sets (tubes that screw onto bags of milk/formula). Absolutely terrifying with a wriggly baby.

Kiddo wasn't gaining much weight because of severe reflux, so this was replaced (surgically) with a GJ tube: GastroJejunal. Again, a bit hanging out of the tummy, but this time a snazzy bit of kit with two ports, giving options to feed into tummy or feed into small intestine.

Looking after a kiddo with a tube and pump in tow 24/7 is crazy stressful. Especially when they start to move but can't carry the bag yet.

'Ports' are the ends of the tubes which can be unscrewed to administer feed or medicine. Kiddo was fed 20/24 hours through the J port for reasons already mentioned.
The tummy port was excellent for letting farts out.

Then quite by accident, after an emergency visit to the hospital, we came to have the MicKey button we currently use. Goes straight into the tummy through the stomach wall. She was only able to keep this because she had grown big enough to hold milk in her tummy.

MicKey buttons have a little water balloon which is filled with water once in the tummy, acting as an anchor. No dangly tube until we hook up to milk!
We change these ourselves every few months. Kiddo and I get pretty stressed out on those days.

These days, she can carry her milk and the pump that delivers it in a little rucksack. She is strong and developing well because she gets the nutrition she needs.
Thank you feeding tubes, and thank you NHS!!

#FeedingTubeAwarenessWeek