Our Feeding Tube Journey
The Reason Behind Proud Tubie Me

As you learnt from our first book of the series Mission NICU, José was born prematurely. At 
just 27 weeks and 6 days.

 

His first experience of using a feeding tube was a few days after  birth. He was given a Nasogastric (NG) tube so he could have my breast milk as well as 
doner milk, he used this for the first 2 months of his life until he was able to safely suckle on 
the breast and bottle.

 

At 6months old he was admitted into hospital and required the help  of a NG tube for feeding, he didn’t need a tube again until he was 15 months old as the first 
signs of Gastroparesis Disease came to light. 

Gastroparesis is when the stomach is paralysed the food doesn’t empty how it should, 
resulting in many awful symptoms.

 

During the 10months of on and off NG tube feeding he eventually stopped eating and drinking orally completely, and he developed gastroesophageal reflux disease (GERD) and Dysphagia (unsafe swallow) as well as countless hospital admissions due to aspiration pneumonia.

 

He was diagnosed with Gastroparesis at just over 2 years old which is extremely rare, at this time he had a Nasaljejunal (NJ) tube fitted, which bypasses the stomach and fed him directly into his small bowel. Shortly after 
this was placed, he then underwent surgery for a more permanent solution. His GJ Button 
was fitted, and he has had it ever since and will more than likely have it for the rest of his 
life.

Follow his Journey on Instagram @justjose.rome