#TUBESDAYTEN
This article is part of a new website series on Talking Tube Feeding, where we hear directly from people with lived experience - whether they are tube-fed themselves or care for someone who is.
Throughout our TUBESDAYTEN series, we aim to empower and connect the tube feeding community by sharing real stories, starting honest conversations, and helping people feel supported and informed.
This week, we’re celebrating HAN Week (4-10 August 2025) - an important moment to highlight Home Artificial Nutrition and celebrate the strength of those who depend on it every day.
To celebrate the occasion, we will be talking to Amanda and Esmae. Amanda is Esmae’s Mother, and Esmae is 3 years old who is fed through a G-tube.
Amanda is here to tell us about herself and Esmae’s experience with tube feeding, covering topics such as how the family have leaned on social media communities to help support their tube feeding journey, and how they celebrate Esmae's ‘inchstones’.
This article shares Amanda and Esmae’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 Amanda and Esmae, and do not necessarily reflect those of Talking Tube Feeding.
1. Can you tell us about your child’s tube feeding routine?
Esmae has 4 meals a day all fed through her mini button. This consists of 180ml of blended diet at 8am, 11am, 2pm and 5.30pm. Esmae gets these alongside her medications at 8am, 2pm and 8pm and a 60ml water flush every feed.
2. How long has your child been tube fed?
Esmae has been tube fed since birth. We started with an NG tube, and then she had gastronomy surgery when she was 1 year old. We have had moments where she's been fed orally for short periods of time but due to her constantly being unwell, she was aspirating on everything, and she now doesn't eat anything orally.
3. What do you wish more people understood about tube feeding?
It's just another way to feed your child. Some people bottle feed; some people breastfeed and others tube feed. It might not be the traditional way but it's what Esmae needs, and she is thriving because of it. It comes with its challenges, for example blending all the feeds can be quite time consuming, but it works well for us as a family.
4. What’s one thing you hope to achieve this year – for your child or for your family?
This year we are hoping to get more calories into Esmae to support her in gaining more weight. Esmae has always struggled with her tummy which makes it harder for her to gain weight, and she also burns calories quicker due to her Cerebral Palsy and Dystonia. So, through trial and error, we hope we can use her tube effectively to get higher calorie means into her body.
5. Can you share a decision you’ve made as a carer that’s made you feel empowered?
We have found that the blended diet is not widely known and therefore have sometimes struggled when Esmae has been admitted to hospital. During a hospital admission in 2023, we had to put Esmae onto milk feeds as they didn't have a policy in place to support her blended diet. This caused Esmae to have lots of tummy issues and made her very unsettled.
After 1 week of this, we made the decision that we would be putting Esmae back onto blended diet whilst in the hospital. We had to work hard to get the staff to support this, but ultimately it was the best decision for Esmae and she was a lot happier. Thankfully blended diet is becoming more accepted, and hospitals now have plans in place for this.
6. Do you have any hobbies that help boost your mental health and wellbeing?
To boost my mental health, I regularly attend the gym and do strength training. I also love chatting with other relatable families on social media and building a community to help support each other.
7. How do you celebrate the small wins or milestones with your child?
We celebrate Esmae's small wins by sharing them with everyone and anyone that will listen. These inch stones are huge and deserve to be celebrated by everyone!
8. Who or what has supported you most throughout your child’s tube feeding journey?
We have been very lucky to have a lovely dietitian who has supported us through the tube feeding journey, and we have also relied a lot on the support of other families. Speaking with other families on social media for day-to-day tips and tricks has been very helpful for us!
9. What helps you feel connected to others in the tube feeding community?
Our family feels connected by sharing stories and experiences and supporting each other through the good and bad times. Having a community on social media also makes us feel like we're not alone as sometimes it can feel like a lonely journey.
10. What’s one piece of advice you’d share with another parent or carer starting their tube feeding journey?
It's not the end of the world. We were devastated when we brought Esmae home from hospital with a tube, but we’re now 3 years into Esmae’s journey, and she is now fully tube fed. Although it’s not what we had planned, her health is the most important thing. Feeding Esmae through the tube is a lot less stressful than trying to get food into her when she's struggling. It's also allowed us to ensure Esmae can thrive and live a happy life.
