Hi, my names Suzi - mummy to Arthur who is 8 months old and has been NG tube fed and nil by mouth since the 18th of January 2019.
A nasogastric tube (NG tube) is a special tube that carries milk and medicine to the stomach through Arthur's nose.
From our personal experience, I would like to share with you some tips that would be helpful to new NG Tubie parents.
Never forget you cannot pack too much!! Always remember when your going out whether it be for an hour or all day to pack more than you need - this includes giving sets and bottles.
We have a bag for Arthur’s bits, which has all his essentials we may need to change, replace and maintain a clean and well presented NG tube.
Because your baby is tube feed that doesn’t mean it can’t look cute and tidy!!
Arthur's NG tube emergency kit includes the following:
-Spare ng tube
-5ml, 20ml and 60ml syringes
-Medical adhesive remover wipes
-Tegaderm (clear upper layer with teddy bears)
-Duoderm (protective under layer)
-Cavilon (barrier film)
It’s always good to switch cheeks when changing the tube to help prevent soreness and rashes. Tegaderm should be changed weekly but if your baby is anything like Arthur we can change his up to 3/4 times a week!!
Don’t get me wrong when I found out my son had to be nil by mouth and be solely tube fed it was hard to take as I wouldn’t be able to have the joys of weaning my baby but as time goes on it does get easier I promise.
At first both my husband and I refused to change his NG tube if it was pulled out which happened a lot at the start! We found ourselves visiting our local A&E or having home visits from the community nursing team constantly. It came to a point when we decided it would be a whole lot easier if we change his tube ourselves.
It's not a pleasant experience for both parents or child but it’s something that needs to be done so the earlier you learn the better!
It doesn’t get easier but in the long run it makes life a whole lot better than sitting in A&E for hours on end.
I wish you all the best in your tube feeding journey.
Arthur didn’t choose the Tubie life the Tubie life chose him!
You can follow Arthur's journey via his facebook page @arthur.mountain.9 or via his Instagram page @arthur.rosa.mountain