Onwards and Upwards
This tube-feeding family is travelling the world and finding joy in the unexpected.
Lorenza Pye might tell her daughter, Eliza, that she’s not allowed on the iPad. But this savvy eight-year-old will likely pair it to her Bluetooth hearing aids, turn on her music and bust out some moves.
“Honestly, I can’t blame her – it’s so much fun!” Lorenza tells their growing online community, Charge Onwards and Upwards. Here, she shares glimpses into Eliza’s life with CHARGE syndrome, a complex genetic condition that affects her in multiple ways.
“One significant challenge is her ability to swallow safely,” says Lorenza. “Eliza also experiences sensory issues related to food, which complicates feeding even further.”
Non-verbal until she was four, speech is an ongoing challenge for Eliza too. One that her mother met by getting qualified as a British Sign Language (BSL) practitioner. As the founder of sign-language school Eliza Says, Lorenza now works with educators, organisations and the NHS to support better inclusion.
Balancing work with play, this northern UK family – which also includes Eliza’s dad, Tom, and older sister, Mya – recently travelled to Spain and Italy. The countdown is now on for their holiday to Cyprus.
Lorenza chats with The Blend about tube-feeding and the life-long role it has played for her youngest daughter – along with her tips for families who are new to this experience.
When did tube-feeding start happening for your family, and how did you feel about this at the time?
Eliza was tube-fed shortly after birth through a nasogastric (NG) tube. At around 18 months, we made the difficult decision to switch to a gastrostomy (G) tube, which felt like a loss of hope for her progress and seemed permanent.
However, it turned out to be a game changer. She went from merely surviving to truly thriving.
Adjusting to tube-feeding was hard for me as a mother. I longed to feed my baby with breast or bottle – and having that taken away was incredibly painful.
How do you feel about your child tube-feeding nowadays, in comparison to how you used to feel about it?
My perspective has shifted from a negative outlook to a positive one. Initially, I felt overwhelmed and discouraged, but over time, I've learned to see the strengths and possibilities in our situation. Embracing the changes has helped me appreciate the journey and celebrate the progress we've made.
I try to focus on the positives, like no more constant arguments over drinking more in hot weather. I can keep her hydrated via her G-tube. She doesn't want to taste the nasty medicine? No problem – it goes straight in the G-tube. And Eliza really does have the best diet of any eight-year-old I know.
What helped you to get comfortable with tube-feeding – both practically and emotionally?
It's surprising how quickly tube-feeding your child becomes the norm. My mindset in life has always been about adapting and overcoming, embracing a ‘crack on with it’ attitude.
What are the biggest challenges you've faced in your tube-feeding experience?
The biggest challenges I've faced – and still face – in our tube-feeding experience primarily revolve around uncertainty. I often wonder if Eliza will be tube-fed for life and whether we'll make any more progress with oral feeding. This uncertainty is a constant struggle for me, especially when people frequently ask about it, as if there’s a clear answer.
Unfortunately, professionals don't have a crystal ball to predict the future, which adds to the emotional weight of the situation.
What are your go-to tube-feeding accessories, communities and/or resources?
Eliza is on a blended diet and Wilbo’s Blends pouches are a godsend for us, especially since we love to travel. I also find social media to be a fantastic resource for connecting with other tube-feeding families. It provides support, shared experiences and helpful tips that have made our journey more manageable.
Can you tell us about the funniest, messiest or most awkward tube-feeding situation you've found yourself in?
Over the eight years of Eliza being tube-fed, we've had plenty of messy and funny moments – but one recent incident stood out. I let Eliza climb into my bed for some extra cuddles since Daddy was away that evening. In the middle of the night, I rolled over onto a wet patch. Upon closer inspection, I realised it had an odd colour – not quite like urine.
When I switched on the light, I discovered it was half-digested food and Eliza was covered from head to toe – even in her hair! Safe to say, neither of us found the funny side at that moment! But we’ve laughed a lot about it since.
What words of advice do you have for people and families who are new to the tube-feeding experience?
My biggest piece of advice is to embrace the journey with an open heart. It’s normal to feel overwhelmed at first, but remember that you’re not alone – there are many supportive communities out there. Celebrate the small victories along the way and don't hesitate to ask for help when you need it.
Connect with other families for shared experiences and encouragement – their stories can be a great source of strength. Most importantly, trust in your resilience and your child’s adaptability. Together, you will navigate this journey and find joy in the unexpected moments.