Tube Feeding

Before I had my daughter, I didn't know anything about tube feeding and I suppose your average person wouldn't.

It turns out that she is unable to eat anything, or drink anything, by mouth.   That has always been the case, since she was born over nine years ago.

At first, she was fed by a naso-gastric tube, which we had to put up her nose and down the back of her throat up to five times a day as she kept pulling them out.   When she was seven months old, she had a gastrostomy fitted, which is a tube directly into her stomach, accessed by a tube from the outside.  You put the food in with a big syringe.

These days it has become a normality for us.   We get a monthly delivery of tubes and syringes and a new gastrostomy 'button' every three months or so.   

There have been times when we've run out of equipment before the next delivery is due and we have had to fight hard to get what we need and it is still tightly rationed.   I know these things are expensive, but it is the ONLY way we can feed our daughter!