Willow’s Tube Feeding Story

Willow’s Tube Feeding Story

Feeding tube story … Hello everyone! My name is Willow. I am 14 months old, and I would like to share my feeding story with you all. I was born the day before my due date. I needed quite a lot of help, as my oxygen levels were low and I couldn’t maintain my body temperature. I was in a incubator on high flow oxygen, and I was fitted with a NG feeding tube before my mum and dad were allowed to see me on the ward. My stay on the ward was long! I was there 4 weeks before I was finally allowed home to be with my family and meet my siblings, as I was born in lockdown.

I returned home without my NG tube, but I soon ran into problems with my weight. I was losing lots of weight as I couldn’t feed properly. The milk was just building up in my mouth and I would either spit it out or choke. I didn’t know how to swallow! I was admitted back to hospital as I had lost too much weight, and it was discovered I have a unsafe swallow, and the NG tube was put back down. My mum and dad were told I was nil by mouth. And they had to do NG tube training to be able to feed me at home. It was stressful and scary for them, at first, but they soon got the hang of it!

As I grew, I soon realised the NG tube wad stuck to my face, and I found it fun to keep pulling it out! It wasn’t so fun having it put back down, though, and the decision was made that I needed to have a peg fitted (a feeding tube direct into my tummy) as it would be much safer for me, now I’ve found the use of my hands! I had my peg fitted a few days before my first birthday. Again, it was scary for my mum and dad and they had to train to feed me a different way. I was very sore, at first( but it soon settled down. My weight gain is still slow but I’m following my own growth chart!

My feeding journey has been a bumpy ride and I still have a long way to go. But there is hope that, when I’m older, I may be able to come of the peg and learn to eat and swallow like everyone else. I guess we will just have to wait and see if that happens but, for now, I’m growing and getting all the food and nutrients I need to thrive. And that’s the most important thing!

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