Tube Feeding

Mother of Lucas, Nicola kindly shares her tube feeding journey

We started on our tube feeding journey when Lucas was 6 months of age. He had been in hospital for best part of a month following severe reactions to first weaning. He needed to be elemental and on amino acid formula as my breast milk was making him very poorly despite a restricted diet. He had been tube fed whilst we were admitted as he would not touch neocate. It took his paediatrician a while to agree to him being discharged and just as long for me to come to accept it was the right thing. I was devastated about stopping breast feeding mainly as I knew it would mean Lucas would be tube fed. I had to learn how to do the feeds which was daunting as although I had watched them being responsible for it myself was another story. It took a further 2 days in hospital to be trained and to get Lucas tolerating a feeding schedule.


Going home was home suddenly felt like a hospital due to tube equipment and medication that he also came home on. That and my baby had a tube covering part of his face. But it was his lifeline, he needed it and I knew that. It was meant to be short term, 2 weeks to start so I expressed every feed and fed him 70mls (all he could tolerate) every 2-3 hours 24/7. It was exhausting but the aspirating and testing and gravity feeds and flushing became second nature. I learnt to do it whilst cradling him so he still got some closeness. He started to grow, the neocate started to do its job and his symptoms slowly started to settle.


Unfortunately he pulled the tube often, usually in the middle of the night just before a feed! That meant lots of trips to hospital to have it repassed which was distressing for him and hard to watch. He also reacted to many of the tapes so finding one that didn't make him sore and secured the tube was hard. Nevertheless we persevered but he was tube dependant and the reactions to the tapes, the constant pulling and the fact he wasn't swallowing foods once we started to wean meant an urgent referral for a PEG tube into his stomach. That news was like being hit by a beautiful boy was to be cut and have a semi permanent tube, he would scar and I had all sorts of worries about how he would feel about that in the future. But he needed it and again I knew that. He had the operation when he was 10 months; there were some difficulties but the practicalities of it were better than the ng - no testing, aspirating, no was easier in so many ways.


Unfortunately he developed an infection the evening it was put in and continued to suffer them. He would get very poorly and sore and was in hospital a lot. However we now know that a good amount of this was caused by him reacting to the tube and also still undiagnosed immune issues. He was changed to a gastrostomy button in December 2014 which has helped but he still suffers infections. 

I have a love hate relationship with his tube...without doubt tube feeding has saved him, helped him heal, allowed him to grow, to be nourished and hydrated. There are daily battles and it's hard but he needs it..and I know that. 

If you are reading this because your little one is facing a tube or had just been given one I would say don't wouldn't be put on the path if it wasn't absolutely necessary and you will adapt. It will become second nature to feed that way, you will learn how best to do it for your child and you can still have lovely cuddle feeds, they are just different. A lot of the time it isn't easy but I would say the changes you will see will get you through. When it's hard there are lots of us to support you, you just have to ask x

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