Our feeding journey

Heart mum Lucie tells us about her daughter, Eadie’s, difficult feeding journey. Lucie wishes to help other heart parents know they are not alone in their feeding worries and to keep faith this will one day improve.

Eadie was born in December, 2023. Her feeding journey began immediately in the NICU.

Eadie started on the NG tube, having just 5mls every two hours. This amount changed many times throughout her hospital stay – from 2mls per hour to as much as 10ml an hour. 

As our journey continued, Eadie went on to use a pump for her feeds to enable her to be on a continuous feed of 10ml per hour over 24 hours.

Gradually, we increased her feed by a few millilitres per day.

After weeks of continuous feed, we felt it was time to start weaning Eadie onto a greater volume over a shorter time. We started giving her 5 hours on the pump and an hour off again, which continued for a couple of days, before changing the feed again.

We then reduced Eadie’s feed by 30 minutes per day until eventually, she had only 15 minutes on the pump.

Eadie was doing so well! As a result, we added more volume to her feeds – 5mls per feed to get her up to 40mls.

Unfortunately, we then hit a bump in the road and had to start from the beginning. Eadie took a turn for the worse and needed to go back to a continuous 24-hour feed due to being poorly and unable to keep any feeds down. 

After battling with lots of sickness and reflux, we managed to get Eadie up to 65mls over two hours on the pump feed! Amazing! It was then decided that Eadie would benefit from having a peg in her stomach to help with the reflux and hopefully lessen the sickness.

We decided to have the peg fitted and two weeks later we were discharged from the hospital, after a very rocky rollercoaster six-month stay.

Eadie is currently home and doing amazingly well with being peg-fed. She now has 80mls over 20 minutes on the pump which is fantastic! She also has an overnight feed – 400mls over 10 hours throughout the night.

As we continue our feeding journey, we encourage Eadie to use a bottle. Eadie does need some thickener added to her bottle feed due to having an unsafe swallow.

When using the bottle, Eadie will only take between 2-10mls at a time, but overall, she is doing so well, and our feeding journey continues with weaning Eadie onto solid foods.