#TUBESDAYTEN

This article shares Nicola and Avery’s experience of tube feeding under their individual care plan given by a healthcare professional. Please do not change a care plan without speaking to a dietitian. All views expressed belong to Nicola and Avery, and do not necessarily reflect those of Talking Tube Feeding.

Can you tell us about your child’s tube feeding routine? 

Avery has three feeds a day through her Freka PEG, as well as her fluids. She’s been tube fed for both medical and nutritional reasons because of her autism, PDA, ARFID, and pica.

Avery is due to have it replaced soon, and we’ll be sticking with the same Freka PEG because it’s what works best for her. Avery’s always on the go and very sensory seeking, so being able to feed through her backpack and pump means she can still do everything she loves without her feeds getting in the way. 

How long has your child been tube fed? 

She’s been tube fed for two years now. 

What do you wish more people understood about tube feeding? 

That it’s not sad or something to feel sorry for. For Avery, it’s given her the chance to live, grow, and do everything she loves. It’s not a last resort - it’s what she needs to be healthy and happy. 

What’s one thing you hope to achieve this year - for your child or for your family? 

After two really hard years of fighting, Avery finally has a place at a specialist school! She starts this September, just before her 7th birthday. Twenty-eight schools were asked, and only one could meet her needs. It’s been such a battle, but we got there. Now I just want her to settle in, feel safe, and enjoy going to school. 

Can you share a decision you’ve made as a carer that’s made you feel empowered? 

Definitely sticking with the Freka PEG. Lots of people swap to a button, but we knew it wasn’t right for Avery with how active and sensory seeking she is. Listening to our instincts and standing firm made me feel really strong. 

Do you have any hobbies that help boost your mental health and wellbeing? 

I love going outside with Avery and taking photos of our little adventures. It really lifts me. I also share bits of our journey on Avery’s Instagram page, @amazing_averybay_autismandpda, which has helped me meet so many lovely people. 

How do you celebrate the small wins or milestones with your child? 

We celebrate in a way that suits Avery - calm and simple. Sometimes it’s extra time doing something she enjoys, other times just having her engage with us means the world. Every little win matters so much to us. 

Who or what has supported you most throughout your child’s tube feeding journey? 

Other parents and carers, especially those who understand what it’s like. And the professionals who’ve actually taken the time to listen - they’ve made a huge difference. 

What helps you feel connected to others in the tube feeding community? 

Honestly, being able to share on Avery’s page and talk to other families who understand has been a huge help. It reminds you that you’re not alone, even when it feels tough. 

What’s one piece of advice you’d share with another parent or carer starting their tube feeding journey? 

Go with your gut. You know your child better than anyone. Don’t feel like you have to rush or follow what everyone else is doing. Your journey is your own, and that’s more than enough. 

 

If you have any questions or want to know more about tube feeding in general, drop us a message on Instagram @talkingtubefeeding or email us at talkingtubefeeding@uk.nestle.com, we’d love to hear from you!