Food through a tube

Family mealtimes are important to us, with Chops we did baby-led weaning, we offered a balanced diet in it’s natural form (no mush) and he chose what to eat and ate with his own hands in his own time. We went to lengths to ensure we were together for mealtimes, Paul adjusting the time he started and finished work to accommodate for this.

With Wiggles’ lack of swallow we knew this approach wasn’t going to be an option, we’d have to puree food for her to go down her tube. Ok, so that wasn’t how we’d like it to be, but that’s how it is.

However, I never realised that gastrostomy meant giving Wiggles artificial food. After talking to a few other mums in person and online, we came to the conclusion that we need to switch to a g-tube. Even without the video fluoroscope to tell us if Willow can swallow or not, she’s going to need tube feeding to some or all degrees and the g-tube is a better option.

So, I started to do a bit of research. I had no idea that today’s tube-feeding means giving artificial food, essentially a formula. Dieticians are no longer trained in advising on giving real food via the tube, neither are community nursing teams who help manage the feeding of children in their own homes. I was totally gobsmacked.

Well, that isn’t for us, I’ve fought to keep Wiggles on 100% expressed breastmilk, against the advice of the hospital dieticians, who have tried to push formula at every hurdle. We no longer have anything to do with them after several discussions about breastmilk in which they showed their lack of knowledge of both breastmilk composition and breastfed babies.

So here starts our journey into discovering how we feed our baby real food via the tube. She will be 6 months old next month and although I’m not about to start giving her mass quantities of food, breastmilk will continue to be her main source of nutrition, there’s clearly some research to be done!

The starting point has been talking to W’s TAC (team around child) team. They currently have no experience of this but will support us as best they can. They’ve recommended we talk to W’s pediatrician about it because the nurses think we’ll need a certain type of g-tube to accommodate feeding real food and that we’ll need to choose which hospital to have the gastrostomy done based in them being able to provide the correct type of tube as not all hospitals will.

We see W’s pediatrician next week but until then I’ll be continuing to find information on this and I’ve ordered the only book I could find on feeding real food via the tube, “Complete tubefeeding via the tube and blended diets“, written by a tubefeeder.

Yes, mealtimes will be different in our house but we want W to have at least some of what we have, whether she can taste it or not. As a mother I want to nourish my children and giving them artificial food is not on my agenda.

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