Amelie’s Feeding problems!

Hmmmm – where to start on this one!! I guess the one thing I can say about Amelie and her feeding habits is that they have been constant from the day she was born!!! Constantly rubbish!!

Before we knew she had RSS, her feeding was a real worry. In fact it’s quite scary now looking back at the early days when she spent every night in a pool of sweat and not waking up for her feeds, realising now that she was so hypoglycaemic!

At the age of three months, Amelie was referred to St James’ in Leeds to have a hernia repair and was discharged back to our local hospital due to her poor weight.

It had been a concern as Amelie weighed 5lb 6oz at birth (2.520kgs) and she lost well over her allowed 10% birthweight, dropping down to around just over 4lbs. She was happy breastfeeding but it seemed she needed more calories so we tried top up bottle feeds of higher calorie milk. The trouble was she could take up to an hour to take just 20mls and then she kept choking – it was so frustrating!!

She had a naso-gastric tube passed and they tried top up tube feeds through this instead and I had to stop breastfeeding. Doctors thought the tube would be just for a couple of weeks – oh how Amelie proved them wrong!!

Further investigations as the months passed showed that Amelie had severe reflux! She didn’t display the usual signs of reflux as she never actually vomited much, unless she was poorly – she refluxed up to the back of her throat and used to choke a lot.

After the results of the PH study showing Amelie had severe reflux, it was decided the best way to proceed was to have a more permanent feeding tube fitted into her tummy so we could feed her overnight. A procedure called a Nissen’s Fundoplication would help stop her refluxing and so in December 2008 Amelie was admitted to Leeds to have these procedures.

A Nissen’s is done by wrapping the top part of the stomach (the fundus) around the outside of the oesophagus and the wrap is stitched in place. Amelie’s procedure was performed through an incision down her tummy as they were inserting a gastrostomy tube at the same time. A Gastrostomy Tube (G-tube) is either a tube or button (skin-level device) placed into the stomach through the abdominal (tummy) wall. This meant that we could continuously feed Amelie overnight without the risk of the milk coming up into her throat and going down into her lungs!