Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

My boy with two buttons

My boy with two buttons

It’s 10.30pm. The relentless beeping of Jaxon’s feeding pump is showing no mercy.

I’m frustrated and find myself shouting at this inanimate piece of equipment that keeps my son alive by providing him with the nourishment that he needs to thrive and survive.

Feeding tube awareness week has just passed.

Something I knew very little about before Jaxon was born but something I’m almost an expert in now.

I say almost because even when you believe you know everything there is to know about this method of feeding, tubes or pumps have a way of throwing an unexpected curveball from time to time.

Jaxon has been tube fed since birth. For the first nine months of his life he was fed via a nasogastric tube; a tube that goes up his nose and down into his tummy.

I was reluctant to take the next step by putting him forward for gastrostomy surgery because deep down I believed he just needed a little more time before he’d grasp oral feeding.

Looking back, my decision to refuse surgery initially just prolonged our agony and I wish I’d accepted the inevitable sooner.

Life is so much easier now with a G tube.

Despite Jaxon needing to go to intensive care for a few days following his surgery and spending a further five weeks in hospital whilst we found a feeding regime that worked for him due to him not being able to initially tolerate gastrostomy feeding, it’s not a decision I regret in the slightest.

His reflux has improved, he’s gaining weight like never before and no longer classed as a failure to thrive, there’s no more frustrating trips to hospital to get an x-ray to check the NG tube is in the correct place and no more waking up to find a yellow silk tube wrapped around Jaxon’s wrist when he’s yanked it out during the night.

A couple of weeks ago someone said to me “it’s not much quality of life for him is it, not being able to eat?”

It took me by surprise and made me question Jaxon’s quality of life.

He has plenty of challenges that affect him so to the outside world his quality of life may seem pretty poor.

There’s challenges we’re addressing every single day to improve things for him.

Being a tube fed baby is NOT something I recognise as giving him a poor quality of life, ultimately it gives him a life.

It gives him the opportunity to be here. Without his tube the reality is he wouldn’t be alive.

Even if he was, if we forced him to feed orally, chances are due to his brain injury he would likely suffer from frequent aspiration.

He wouldn’t gain weight, he’d suffer more chest infections than he currently does and he would be entirely miserable.

So as I shout at the feeding pump for the 30th time this evening, I’ll remain thankful that it exists.

I’ll be thankful that my boy has two buttons; a belly button and a gastrostomy button.

I’ll be thankful that the fact he is unable to orally take nutrition does not mean he can’t live.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emma Louise Cheetham

Meet Our Blogger

I live in Stockport, UK. I have Borderline Personality Disorder and Generalised Anxiety Disorder. After years of therapy and getting back on my feet I became a voluntary peer support worker supporting others with mental health issues. Then Jaxon arrived and my life changed forever.

View Emma Louise’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 4 months on

Purchases on £99+

UK Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of £99+:

No Interest if paid in full in 4 months on purchases of £99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 4-month period.
  • No interest will be charged on the purchase if you pay it off in full within 4 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • Any remaining balance due after the 4-month promotional period or any transactions under £99 will be charged interest at 19.9% p.a. (variable).

Purchases of £98.99 or less:

Buy now and pay over time with PayPal Credit when you spend £98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • In order to maintain the 0% offer, you need to keep up monthly repayments and stay within your credit limit. Credit subject to status. Terms and conditions apply. UK residents only.

Please wait...