Nurse Amy Purling was no stranger to an NG tube – but says nothing can prepare you for the day-to-day realities of tube feeding your kid. The mother of James, 5, and Jack, 2, supports families of premature babies, like her own, through her Miracle Mumma community, and shares many pearls of wisdom with us.

How did tube feeding first come into your life?

Jack was born prematurely at 34 weeks. He was too little to feed by bottle or breast, so he had a tube for the first two weeks of his life. We weaned from the tube and he was then fully breastfed for the first four-ish months of his life. But during that time he had frequent chest infections and we were in hospital every couple of weeks.

We found out he was severely aspirating - a lot of the milk was going into his lungs, and that explained why he was so unwell. So at five months, he had a nasogastric tube put in and we were told to stop breastfeeding. We are still tube feeding now that Jack’s two and a bit, and he got his PEG put in in March this 2021.

He’s got laryngomalacia and tracheomalacia and some airway anomalies, but for a long time the specialists said that from the age of two, he should have outgrown his tube. I clung to that and went, ‘Nope, we’re not doing a PEG because he’s going to grow out of this’.

When did things change?

They allowed us to try and wean before the PEG - to go back down to moderately thickened fluids - and I immediately heard that rattle in his throat and his chest.

Now that Jack has his a PEG, how are you feeling about it?

I wonder why I pushed away from it for so long. Especially given that he was already tube fed. It wasn’t really a big leap, logistically. It was all going to be the same. I guess I didn't realise how much the nasogastric tube probably was influencing him. He never complained about it, but since having it out, his speech has developed a lot.

His swallow has also improved since the NG came out and his reflux too. I just don’t feel like he’s been as unwell. Well, he got sick in March when we got the PEG - we had a prolonged admission because he developed a respiratory bug.

I’m yet to meet a single parent or person who’s PEG insertion went smoothly.

It wasn’t just the chest infection for Jack. He had fevers and he got really bloated, and had to have scans to make sure it was in the right place, because the doctors were worried it was leaking. I couldn’t even touch his tummy because it was so inflamed and tender.

Normally feeds start the day after the surgery but they didn’t start for at least four days, because Jack was in so much pain. In the first three days of that PEG going in I was like, ‘what have we done?’. I was kicking myself. I was so angry that we’d done it - that we’d made the wrong decision. I had all this guilt.

You’re an emergency nurse - do you think your medical experience made this whole thing any easier?

I frequently put nasogastric tubes in, but there’s no way it prepared me for what it is when you’re living it day in and day out. When Jack first came home with the nasogastric tube I remember leaving the hospital and starting to cry. I drove to my mum’s house and got out of the car, howling, ‘how am I supposed to fit all of this into our lives?’

You can prepare yourself for the actual tube feeding, but everything that goes with it, like not being able to leave the house without five different bags of stuff and all the appointments and the therapies and everything else that comes on top of that - until you’ve truly lived it, I don’t think you can ever prepare. And even as a nurse, I’ve fed the bed! That’s just sleep deprivation, I think.

What has Jack been eating and drinking via his tube?

I was expressing breast milk until he was about one. Adding that into the mix was something that I shouldn’t have done, really. I mean, I wanted to, but it was a lot extra. Then we moved him on to formula, which we did for around six months. By 18 months he was eating so well that all he needed through the tube was water. He gets the rest of his nutrition orally.

So that's the same with the PEG now - just water?

Yep, so we’re one of the lucky cases where Jack still has a huge appetite and is safe to eat orally. I know a lot of kids get aversions when they have tubes, or they have tubes because they don’t eat enough, but Jack’s never been like that.

You say ‘lucky’, but I bet there’s been a lot of feeding and speech therapy behind that progress.

There has been. And even now we’ve got to be really careful with the textures of foods and he can’t have things like watermelon or anything runny. He’s got a really underdeveloped chew - he pretty much doesn’t chew, he just moves the food around in his mouth and hopes for the best. I guess I just feel lucky that he’s so keen to eat. He wants to do it, even though it’s quite hard for him.

Where there’s a will, there’s a way, as they say.

That’s right. We use a lot of purees and soft stuff and yogurts and all that, but we get away with not having to put anything else but water in his tube.

Let’s rewind for a moment. What’s it like being out and about when your baby has an NG tube? Did people ask you questions?

Jack had his for 18 months, which was quite a long time. Usually after the age of one, kids move to PEGs, and because PEGs are hidden, people in the public don’t really get exposed to them. So Jack was a rare kid in that he was 18 months old and walking around with a nasogastric. We did get a lot of questions, and a lot of stares.

I didn’t have many negative comments. I’ve had a couple of people ask, ‘what’s wrong with him?’, which didn’t sit well with me. I’d reply, ‘nothing’s wrong with him, this is just the way he eats and drinks’.

Not that it’s anyone’s business.

No. But I’m one of those people who encourages questions. I’m happy to sit there and educate someone because I think that’s the best way we can raise awareness. Jack used to wear his nasogastric tube like it was his little stamp, his little trademark.

His little badge of honor.

Yeah, it was! And James, his brother, used to always talk about it positively. He’d say: ‘That’s my little brother and he’s got superhero powers - he can eat and drink through that tube.’ And that’s how I always encouraged him to talk about it.

Even now, Jack’s PEG is his superhero. He calls it his ‘Billy’, and if I’m talking to someone about his ‘Billy’, he’ll lift his shirt up and show people. He doesn’t hide it. This is a part of life for some kids and I think the best way we can educate future generations is just to be open and honest about it.

I never hid his NG tube. I put pretty printed tape on his face and there’s no way I would have ever stopped going out in public with it. I’d put his pump in a backpack and do his feeds as discreetly as possible in case people were a bit funny but, to be honest, in that whole time I rarely got any comments that weren’t actually quite positive. People would walk past and say ‘Wow, he’s got a beautiful smile’.

Let’s jump to a practical note before I start sobbing over how lovely that is. Where did you get your pretty NG tube tape from?

Little Bubba Brave tapes are amazing - they tend to last the longest. And another company called A Simple Patch does lots of printed tapes and custom-makes them, too. For his last ever NG tube my friend made Jack some personalised tape with little shining suns on it, which was lovely. The tapes make it fun - especially as they get older. Jack used to like choosing which tape he’d put on. It makes it all less clinical and medical.

Any other tips for NG newbies?

Take it one day at a time - especially in the beginning when it’s really overwhelming and relentless. I remember feeling like I would never be able to live a normal life or go out in public again because of everything that it involved, but it does get easier. You’ll find a routine and a way to make it work, because you have to, don’t you, we’ve got no other choice. That’s what us medical parents do, we just keep going. We pivot and we get shit done.

Indeed we do. I know you’re new to the g-tube, but what’s your biggest learning so far?

Because Jack’s mobile and on the move, a Tubie Fun backpack has been our lifesaver. And I use Sinchies pouches attached to his mobile giving sets, so they don’t get air in them. When you’re using a backpack, if you’ve got a bottle, and your kid is rough and tumbling and rolling around, you’ll get air in the line no matter what. But if you use Sinchies you won’t get air in your line and they can move around as much as they want.

Another tip I have is giving the tube feed when they eat so that they are associating eating and getting a full tummy with food. My dietician doesn’t recommend this, but if I do it at different times, Jack’s not going to have a break from feeding.

Dietitians are amazing, but don’t be afraid to speak your mind, too. You know your child best and what works best for your family. Stand your ground when you need to and work with the medical professionals rather than feeling like you’re being told what to do.

Your online store, Miracle Mumma, stocks premmie milestone cards - one of which reads: ‘I had my feeding tube removed today’. Am I right in thinking quite a few premmie kids have NG tubes?

Yes, nearly every premature baby has a feeding tube because they’re not big and strong enough to feed orally. They haven’t had the time in the womb to develop that ‘suck, swallow, breathe’ reflex. Most of them have their tube removed before they go home but, for some, it takes them longer.

Things like floppy airways and laryngomalacia can be quite common in premmies, and tend to come with feeding difficulties like aspiration. I see a big connection between premmies and longer term feeding tubes, and think it affects more families than people realise.

What words of comfort do you have for those families, like mine, who might be looking at long-term, or lifelong tube feeding?

Tube feeding doesn't make your child any less. On days it all feels too much, remember that pesky little tube helps your child to grow, to thrive, to survive - it helps them be their best. That said, it's ok to wish things were different. This journey isn't what you imagined and it requires you to be more resilient than you ever thought you could be, but you are up for the task.

No one is alone in this. Sometimes it can feel like you're the only one in the world living the tubie life, but there are so many others out there who are with you - who get it. I encourage people to connect with people through social media and support groups, it brings so much comfort and hope.

Little Miracles