Charlie “You don’t have to be like the rest, you can just be like you”



Happy Feeding Tube Awareness Week 2021!!

Feeding Tube Awareness Week!!! February 8 - 12, 2021

www.feedingtubeawarenessweek.org

This week is a week to help educate about the positive benefits of feeding tubes, the medical reasons why tube feeding is necessary, and celebrate those use feeding tubes for life giving nutrition and hydration!!


This week also serves to educate the broader public about the medical reasons why children like Charlie are tube fed, the challenges we face, and day-to-day life with tube feeding.


Our Superhero Charlie supports a feeding tube and has had one since he was just 5 weeks old due to issues caused by Necrotising Enterocolitis. Charlie initially had an NG tube up until he was about 6 months old, this was then changed to a gastrostomy button and upon till most recently it had to be changed to a PEG-J Device. (seen in the above picture along with his Central Line for IV Nutrition)


We like many other families celebrate Feeding Tube Awareness Week to help raise awareness and share with others of how proud we are of our tubie warriors promoting the positive benefits of feeding tubes as life saving medical intervention.


Living With A Gastrostomy Feeding Device

A gastrostomy is a surgical opening through the abdomen into the stomach. A feeding device is inserted through this opening. This allows your child to be fed directly into their stomach, bypassing the mouth and throat. Although this has come with some complications over the years it has enabled us to give Charlie blended diet and overnight trophy feeds.


Charlie has ultra-short bowel syndrome and due to the damage caused by NEC we are unsure just how much his bowels absorb food. Therefore, by introducing trophy feeds we hope it encourages his bowels to adapt. Only time will tell!


Charlie also has a CVL (Central Venous Line) inserted in to his chest, this is used for bloods, medication & TPN (Total parenteral nutrition). TPN is intravenous nutrition that bypasses the gut ensuring Charlie’s body receives all the vital nutrients he needs to develop and grow.

We are so grateful for these tubes, that have helped Charlie grow & maintain his weight. We couldn’t be prouder of our little tubie warrior.


Children who are tube fed may not look “sick.”

There are hundreds of medical conditions that can require tube feeding and many aren’t things you can see. You can’t see how the body and different organs work. However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it may take a lot to keep our kids looking and feeling healthy.


Here are a few images of our little hero throughout his journey 💙




Let’s Remember FED IS BEST!

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#tubielife #tubiemummy #iloveatubie #tubefeedingawarnessweek #livinglifewithshortbowelsyndrome #shortbowelsurvivor #necsurvivor #theradfordfamilysurvivingnecrotizingenterocolits

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The Radford Family Surviving Necrotizing Enterocolitis is a family and life style blog designed and created by Claire Radford All rights reserved.  All content provided on our site is for informational purposes only. I am not a medical professional, nor do I claim to be. Always seek medical advice from a trained & licensed physician please see Terms & Conditions & Site Rules for further information.