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Life As A Tubie Mum - by Ruth


Ruth is a tubie mum to the wonderful Oliver-Zac! She answers questions about their life together below:

 

Mother and son sat together while mum is feeding him via a syringe into his mickey button

Can you tell us a bit about your background as a tubie parent:

My son was nearly 3 when he had his tube fitted due to low muscle tone throughout his whole body, including his mouth and also a few other diagnosis. Oliver-Zac was losing body weight fast and he couldn't take in many calories and the milk he was on wasn't suitable. He was then moved over onto a Mic-key button in march 2019. 
Boy with a mickey button looking to the right of the picture and laughing
What have been the positives of Oliver-Zac being tube fed?
The positives are that he is putting on weight and is really healthy. We also do a blended diet after failed attempts with previous prescribed formula milks. We blend good wholesome food up and put it down his tube. His weight remains good and he looks better for it and also has a lot more energy. 
What have been your biggest challenges day to day?
The biggest challenge I face as a tubie parent is feeding in public- which can sometimes be difficult. This is not due to people's understanding, but due to the fact it's harder to feed outdoors than in your own home and environment. My son is in a wheelchair for outdoors use to remains in the wheelchair for feeding. Straps can get in the way and clothing can also. Also, having to get things ready quickly, means that things like syringes, water and food need to be at arms length. 
Another challenge is that over granulation is a nightmare. We experienced this slightly at the start of our tube feeding journey. Safe to say it's gone and I hope it never comes back. We have a nice clean over granulation free gastrostomy site. 
If people around you could help in one simple way, what can they do?
If people could help around me it would be to be kind and not stare. It's just a different way of eating. Most of us eat via our mouths but some of us eat via a tube into our tummy. My tubie has 2 belly buttons 
❤
Do you have any self-help tips for new tubie parents?
My self help top tips would be to always make sure you keep up with your deliveries for buttons and syringes. Put it in your calendar which will remind you to call and place an order. 
Another tip would be to don't panic and worry. I did this in the early days and it would make me cry as I was so scared. My tubie was also scared so I would only feed him when he slept. This soon stopped and within a month or two he was used to it. 
If anyone is wanting to try the blended diet and needs help they can contact me directly via email at or instagram page tubie_mum