Meet Bonnie and Mummy Nicole

Meet Bonnie and Mummy Nicole

Bonnie Luella is the first UK toddler to wear our Growing Tots Adaptive Bodysuit. We collaborated with mummy Nicole and learnt more about our special little friend and what challenges and milestones they have overcome as a mother and daughter unit throughout their tube feeding journey. 

How old is Bonnie? "3 years & 7 months"


When did tube-feeding start for Bonnie? "She had her operation 15/01/2025 two days before her birthday. When she was born she was fed with a NG for 11 days. When we left hospital she took 2 hours to feed.
I pleaded that something wasn't ok, to paediatricians, drs, tongue tie specialists, health visitors etc and a cleft palate was found at 8 months of age! It was missed every single time. 
She had a specialist feeding bottle & when she was 2 they tried with a NG tube again as they found out she was aspirating, she had a food aversion & couldn’t chew food or create a bulbous. She finds it hard to co-ordinate so diagnosed her with dysphasia. She never drinks water via mouth. So all medication, milk & water go via tube. We always try food via mouth but it has to be purées."


What is your favourite thing about Bonnie? "Her strength, she's been through so much throughout 3 years of her life & still is so happy. All that matters is her happiness!"


What is Bonnie's favourite song? "Incey Wincey Spider from coco melon! (At the moment)"

What does Bonnie enjoy doing most? "She loves listening or playing with her Tonie box & being outside with the countryside / trees!"


What issues have you faced with tube feeding and (clothing) dressing? "So many! We can never find her sizing in tube fed clothes, either too big or far too small. We found vests that had a slit in, these were always difficult as her tube was constantly hanging out. Where the tube is long this can be dangerous, if Bonnie fell, she could pull it, but if we tucked the tube in, it was hard to find via the small cap. Vests with no poppers always rises up so didn't sit flush with the tube - these caused granulation tissue all the time. She constantly had creams such as maxitrol."


Is there anything else you would like to tell us about your experience with tube feeding and accessible clothing? "It was always so hard to find we nearly gave up or just used to tuck in/ hang her tube out of a regular popper vest. Then growing tots came along and changed it all. We can't wait to buy more - you've done amazing & you've helped a family so much, thank you."

- Mummy Nicole @bonnieluellas_mama

 

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