We had intermittently dallied with feeding tubes since birth, but it wasn't until Wriggles was very poorly in August 2012 aged 23 months old, that a permanent feeding tube became part of our lives. It was diagnosed that she aspirates, meanly that her swallow is effectively unsafe and so for now fluids cannot be given my mouth. She has been victim all too frequently of nasty chest infections; at one point we were hospitalised every other weekend, and so along with persistent reflux and an on going oral aversion meaning her oral nutritional intake is incredibly limited, it was both with regret and also relief that I took her home with a naso-gasteric tube and a date for a PEG insertion.
We now have a gastronomy and are slowly learning how to use it. Hopefully by having it fitted, it will give Wriggles more freedom and confidence to learn how to eat as right now she is getting 100% of her nutritional needs met by a mix of bolus and a 10-hour continuous night feed of nutritionally complete high calorie milk.
At a year old, we were due to go onto tube feeds which fell through...
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