Getting used to tube-feeding can be overwhelming. It's very clinical, involves a lot of kit and it doesn't gel easily with 'normal life'. As time passes however, you find things that work and problem solve your way through all manner of challenges. One year in, here is my list of top products to make your life that little easier.....
TUBE CARE AND ADAPTED CLOTHING
These have proven useful for protecting the skin around the peg and button site from leaking fluid, and also for preventing irritation from the tube moving around which has greatly decreased the amount of overgranulation we get. I really like the ones sold by G Tube Pads UK. They come with a cotton or bamboo backing using high quality fabrics and are really professionally made. They last and wash really well and they come in endless designs. There are other sellers too such as Hobbyhorse Lane which also come highly recommended although I've never used them myself. If you're going to use tubie pads then you'll need a small laundry bag to wash them in. I soak ours in a tuperware with Napisan until I'm ready to do a load of washing.
Tubie Clips, Belts and Covers
Businesses that sell Tubie Pads also tend to sell clips, belts and covers. The clips are great for taking the weight of a tube, which protects it from getting caught and also helped decrease overgranulation in our case.
Tubie belts can protect the site and tube whilst covers for tubing can help to decrease kinks and occlusions during overnight feeds and prevent inquisitive little hands from undoing ports and connections.
Comfizz make simple body wraps for protecting the tube site and tube and they are available FREE on prescription! You just take some measurements, print out the prescription form on their website, fill it in and take it to your GP!
These are great for holding coiled up ng tubes when they're not in use. Little Miss Muffet Babywear sell some exceptionally lovely ones with a handy clip for attaching to clothing.
A great new business founded by a tubie mum and selling adapted tops for tube feeding is Tubie Kids. They sell a lot of different designs and plain tops too. They are great quality and are getting good reviews so well worth checking out. Tubie Kids has also just started selling Tummy Tunnels which are iron-on patches that allow you to easily add an access hole through any item of clothing.
M&S and Dunnes also have ranges of clothes adapted for tube feeding. It's wonderful to see highstreet shops considering this in their range although I have found these larger shops have less inspiring options than the smaller sellers.
There are also many products and hacks for making day-to-day life easier. These are my favourites but if you have a practical problem then asking for solutions on a Facebook group such as our own TubieeGo Chat group usually gives you lots of solutions from people with lots of experience.....
We all hate delivery day and the first one can be a bit of a shock! Our delivery is smaller than most but it's still big enough to build a great fort! Where on earth do you put it all? My advice would be to split it up and to make it look as least clinical as possible - it's your home after all, not a hospital!
Put the majority 'away' - under beds, under the stairs, in the loft/garage, or if you have no space consider buying a watertight and lockable shed or patio box (you think I'm joking but this is actually a great and commonly used solution)! Then have what you need for a week or a few days somewhere accessible but not intruding on your life. Box-style storage furniture is ideal. The Kallax range from IKEA is popular but if IKEA isn't handy for you then Argos and B&Q sell similar ranges. Check out this storage area from a mum who has managed to make it both practical and attractive too!
Drying syringes can be a bit of a pain. The most popular drying rack seems to be the Munckin Delux. It can hold a lot of syringes and also folds flat (not that it won't ever be in use!)
When it comes to leaving the house I have found that a carabina is my best friend! I use it to secure my son's feed bag in the car, the buggy, to high chairs, to the shopping trolley - you get the idea! My Buggy Buddy sell some great options or you can get good strong ones from climbing shops.
And it goes without saying that you also shouldn't leave the house without your adapted TubieeGo rucksack for feeding on the go! The bag pictured is in our Toddler range and is adapted from a SKIP HOP bag.
BITS AND BOBS
ENFIT syringe caps
These are great for taking loaded syringes out with you. I use them for pre-loading flushes when we're out and about but I know that others use them for pre-loaded feeds in 60ml syringes and also medication (although I'd be cautious with that if there's any chance of not knowing which syringe is which). You can buy them (in large quantities) from The Living Centre
ENFIT bottle adaptors
I love bottle adaptors! Trying to get the last third of a sticky medicine into a syringe that doesn't quite reach to the bottom third of the bottle is frustrating! With one of these you simply fit the syringe onto the adaptor and then turn the bottle upside down to fill it. Much easier and no wasted medicine. I get a few from the chemist with each prescription but you can buy them online from The Living Centre and from this ebay seller Be aware that they come in different sizes so you need to measure the bottle you'll be using them for.
And that's it! I hope you've found my suggestions helpful. I'm sure that you will have lots of helpful products to share too, so if you do please leave a comment below or join the conversation on our social media channels.