Feeding Tube Awareness Week 2026: Arlo's journey

My boy Arlo was born at 28+2 weeks’ in May 2024, weighing just 825g (1lb 13oz). He was fed via a nasogastric (NG) tube with expressed breast milk for several weeks. I was taught to tube feed him too!

Arlo did develop a suspected gastrointestinal infection (which we later learnt was more than likely necrotising enterocolitis, also known as NEC) so he was nil by mouth for a few days while they treated that.

Feeding milestone

At 33+6 weeks Arlo took his first very small amount of expressed breast milk (EBM) in a bottle. This experience was a very emotional one – bottle-feeding a premature tiny baby is a different experience when they only just about fit in your hands. 

We did have to move onto formula for multiple reasons. Arlo wasn't gaining weight and my supply was dropping so we fortified and slowly transitioned over to SMA Gold Prem formula.

Return to hospital

Arlo came home at 38+2 weeks after 10 weeks in the NICU and SCBU. However, only a short while after being home, Arlo suffered a perforated bowel and required emergency surgery at a regional hospital. The surgeon said the damage to his intestine looked like necrotising enterocolitis (NEC).

To this day I believe those nurses and doctors who took quick action way back in NICU contributed to saving his life as he was so small, the outcome could have been so much worse if the damage occurred then.

Tubes, stomas and syringes

Arlo had an ileostomy formed (the end of his small bowel was brought through his tummy to form a stoma) and his feeding journey continued.

We had to monitor his input versus output and make sure we replaced any additional losses from his stoma with Diarolyte. This was done via a syringe so his electrolytes wouldn't be affected and he wouldn’t become dehydrated. 

We had to be cautious when weaning him as he couldn't have certain foods that could either increase output and risk dehydration or any foods that may cause a blockage.

Putting on the pounds

Arlo’s feeding journey has been challenging for us and remains so with fortifying foods and adding calories with advice from his dietician. But he is now thriving after his reversal surgery, eats fairly well and is slowly gaining weight at his own pace.

Thanks to Kirsty for sharing Arlo’s story.