Ellie I's quilt    (Quilt Completed)

Thank you

Ellie absolutely loves her quilt and can't believe that so many people would make one just for her. A big thank you to everyone involved, it is amazing

Finished photos

Individual squares

Card

Stitched by: Sarah Gilham

Biography

Ellie's right sided aortic arch was picked up at the 20 week scan. During the early months she was colicky and had reflux but I was always told it was normal and she'd grow out of it. She was gaining weight slowly so they weren't overly concerned. During the weaning stages she would struggle with swallowing and would regurgitate food, reflux was worse and food would get stuck just after she swallowed.

When she was 10 months old we started the hospital journeys and were monitored by a respiratory team. She had her 1st barium swallow study done which showed compression of her oesophagus, followed by a CT scan which showed the vascular ring. She had her 1st surgery Feb 23.

After 6 months the swallowing problems started coming back and a SALT plan was put in place for starting nursery. Another barium swallow study showed compression but in a different place and a CT scan showed a lot of scar tissue had developed and had wrapped around an artery compressing her oesophagus. Surgery in August 2024 caused vocal cord damage and an unsafe swallow and she had all nutrition and fluids via Ng tube. As she began to recover she was able to start eating little bits but aspirated on all levels of fluids. The next 4 months were a blur of constant hospital visits, chest infections, bronchoscopies, sleep studies and numerous ng tubes as she was vomiting them up a lot. She was struggling to maintain weight and wasn't tolerating the ng at all. She was urgently listed for a peg and she got her mic-key button on the 21st December 2024.

Since recovering from that surgery she has started eating again but still has an unsafe swallow for liquids and her voice has changed. She is quite conscious that she sounds different now and she has a special button to help her.