What Can I Expect?

Early Days

The early days of tube-feeding can be daunting, with lots of unknowns. What is it going to be like? While every experience is different, there are some common things that it’s good to know are likely to be the case for you, too.

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Expect not to get everything right first time |Expect tube-feeding to become a new normalExpect your child to pull out the NG tube… a lot!Expect a lot of vomit | Expect to become an expert in tape and taping – more than the professionals!Expect others to find tube-feeding strange – and to have to educate them!Expect siblings to notice what is going on, and want to be included in the journey

Expect not to get everything right first time

Just like every other aspect of parenting, tube-feeding is a learning curve. Even with the best support in hospital, and studying all the leaflets or pdfs you’re given, there’s still a lot to figure out. Fortunately, everyone else is in the same boat, and finding your way is just part and parcel of the journey.

An important part of this is not expecting professionals to have all the right answers – even the most knowledgeable and experienced can’t possibly know the ins and outs of what will work out best for your child and your family. This doesn’t mean flagrantly ignoring all professional advice, but it does mean if something doesn’t feel quite right, it’s okay to say so, and to try small changes that make sense to you (see Trusting your instincts in Tips and Tricks).

This is not about mistakes, but figuring out what works best for you and your child.

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“You have your own little techniques. I have to stand up with her, because she just gets uncomfortable lying down, even though she’s slightly elevated and whatnot. She might be like that for a little bit, maybe 10 minutes or five minutes into the feeding, and then it just gets too much for her. I tried feeding her in the pram. I tried that, doesn’t work. Because if I put her in a pram, she actually throws up. “- Erica

A lot of learning is by trial and error, and chances are your journey is similar that of many other parents. Rene and Tricia both talked about how they realised one of the basic tapes given out by hospitals didn’t work very well for them:

[Text]
Rene:  I’ve tried that white tape

Tricia:It’s shit. Sorry!
Rene:  No, exactly!
Tricia:That’s only for babies that don’t move.
Rene:  When you have a baby that moves…
Tricia:Which is most babies, yeah!

Amina found that if she put gloves on her son’s hands, then he couldn’t pull his NG tube out. However, after a while, she realised the gloves were getting in the way of him exploring the world. (this also relates to Getting the balance right)

Listen to Amina’s story, read by an actor:

[Transcript]
“If it’s long term with an NG, I feel that somehow the parents could delay their development, because they worry that the kid’s going to pull out the tube. You’re putting the gloves on his hands, but then hang on, he wants to touch things. By you doing that, he’s not really touching things. Just little things like that, you’re actually delaying his development. But you don’t realise that, because you’re all so focussed on that tube and worried he’s going to pull it out. You don’t want to put him through the stress of taking him to the hospital to have it put back, but long term you’re delaying him. I was trying to be conscious of it, but you don’t see that at the beginning.”

If your child uses an NG tube, it may take a lot of trial and error to figure out which tape suits your child best. See Tips and Tricks to learn how other parents found tape and ways of taping that worked for them.

Isabel’s son had an NG for several months before she decided to have a PEG put in. Over time she realised that some clothes were better than others to keep his curious hands away from the PEG:

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“Now I make sure he wears onesies, so then he can’t get to his tube. Before he used to be in T-shirts, now I’ve just changed all his clothes into onesies, the short sleeves and if it’s winter he’ll go into a full one. But that’s what he’s wearing, so then he can’t pull it, so then I’m not worried.”

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Expect tube-feeding to become a new normal

The early days are very different from how it will feel even a just a couple of weeks later. What initially feels like a nightmare soon becomes a necessity that can be incorporated into family life.

One of the big ways in which tube-feeding becomes normal is that it stops being something that limits you to feeding at home. Yes – you can feed while out and about!

Tube-feeding while walking with a pram or pushchair, in a car, or in a café might seem impossible at first. There’s so much more to think about with a tube-fed baby, so much more stuff to bring along (or forget), so much more hassle.

We heard from plenty of parents who felt this way initially, but soon figured out how to make it work. Being able to feed when you’re out and about has a huge normalising effect, and can help parents and kids keep up those all-important social contacts. Our tips and tricks section has some very practical suggestions on this topic, and there’s more in getting the balance right, too.

Here’s what Renée had to say:

[Video – Renee:WTE-1]
I think it took me a bit to adjust to everything, because there’s so much that you have to bring along. You want to be, like, precautions, precautions. It’s overwhelming as well at first. The burden when you first tube-feed them at home. You feel a bit kind of unco, like useless physically, you don’t know where to put your arms and everything. You’re not used to it. You’ve got to set yourself up before you even start the feed, and then you’ve got to get the child comfortable enough for the feed itself. But now, I know I can do it anywhere.

Those little adaptations to your life, family and home are all part of how tube-feeding becomes normal. Siân (who’s Real Story has lots of other interesting aspects!) described what became their feeding routine at home – just the way anyone else might describe mess around a high-chair, or holding a child in arms for a bottle feed:

“We had a metre ruler that we used to stick in between our couch cushions and then lay Tori’s changing mat propped up by pillows. Then we had a piece of velcro that would hold the syringe at the top and we could adjust the height according to how fast we wanted the feed to go down.”

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Expect your child to pull out the NG tube… a lot!

It is totally normal, and very common for children to pull an NG tube out.

The reality for many families is lots of trips to the hospital to get the tube re-inserted. Our tips and tricks section has great advice for parents who end up as regulars at the hospital – how to make it go as smoothly as possible, be in and out quickly, and get on with the rest of your day.

In some circumstances you might be able to get training to do this yourself at home. Putting the tube back in yourself might be scary.

  • Siân chose not to because she found it ‘really traumatic’ – that’s part of her Real Story).
  • As a nurse, Ruth knew how to reinsert NG tubes anyway, but was reluctant to do so with her son Luke and wanted to step back from the clinical aspects until a crunch time came and she began doing it herself (see her Real Story).
  • Another family went the other way, learning everything they could – first aid, how to replace the tube, how CPAP breathing assistance works: ‘we were pushy – we needed to get out, so we were like ‘what have we got to do, let’s do it’.
  • Hannah’s decision was related to realising the tube-feeding wasn’t going to stop anytime soon: [Text] I just went, what am I doing? I need to learn how to do this. You can’t sustain this. I can’t be coming to hospital every day.” – there’s more in her Real Story

For many of those who do learn to reinsert the tube, it becomes second nature. Here is how Sophie described her experience.

[Video – Sophie:WTE-1]
I decided to learn how to insert the tube, so if he does pull it out I can put it back in and I don’t have to go back to the hospital. We did the training at the hospital. Then after that I didn’t have to go, if he pulled it out, I wasn’t so worried. You worry that he might miss out on his feed, you don’t want him to go hungry, so you’re panicking each time in case he pulled it out. But once I learnt to insert that tube, I wasn’t worried at all. …You pull it out of the packaging, you put the lubricant thing on it. First you’ve got to measure it to make sure how long you need to put it in there. Then you shove it in, that’s it, then tape it! I just do it at home, no problem. I do it at home, two seconds, it’s nothing. I aspirate, I know if it doesn’t work and I don’t get it, I move him a little bit, lift him up, you’ve got to move him around to try and get the aspiration and so on, and everything is fine. It saves me time, I just put it in. I’m confident in doing it, because I did it so many times.

If you’re finding yourself going to hospital every day, or more, to get the tube re-inserted, consider asking your clinicians if it might be possible to get trained in doing this yourself. Courtney put this off for a while, but doesn’t regret it now she is seeing far less of the hospital!

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“The reason why I didn’t learn to do it myself, I would say, is because I didn’t think it would be a long term thing, I didn’t feel that he would have it for that long. So I thought, no, no, no, he’ll get it. It’s just because he was born early, that’s the reason he’s struggling with the feeding. But we realised afterwards, it’s taking so long, we’re not getting there yet, unfortunately he’s going to have this tube longer. I decided then to learn how to insert the tube, so if he does pull it out I can put it back in and I don’t have to go back to the hospital.”

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Expect a lot of vomit

If a child gets sick while using a feeding tube, they tend to vomit more. Being sick and throwing up are normal parts of childhood – just maybe a bit more frequent when you throw tube-feeding in the mix. Of course, gaining weight is a big deal when a child has feeding difficulties, so lots of vomiting can be even more worrisome.

Erica’s Real Story describes her experience of dealing with up to 20 vomits a day!

If your child vomits a lot, asking questions is a great way to understand why and make it less of a worry – see Tips and tricks to hear the difference this made for one family.

Check out our To Peg or Not? section to find out why changing to a PEG can reduce the vomiting and help with weight gain.

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Expect to become an expert in tape and taping – more than the professionals!

[Text]
“I wish I’d knew that taping was more important than whether or not the tube comes out!”
– Hannah (there’s more in her Real Story)

Decisions about which tape to use and how often to change it make a big difference to how easy it is for the child to pull an NG tube out, and to the impact of the tape on their facial skin.

None of the parents we spoke to had exactly the same way of choosing, applying and replacing the tape. But they had all become experts on this topic!

There’s lots more about taping in the tips and tricks section.

Most parents we spoke to found that they soon knew more about taping than the people in hospital who reinserted the tube when it got pulled out, and even more than the specialists working with them longer term. What tape suits your child’s skin, what length of tape to cut, how to position it, and when to change it will all be your decision because you know your child and your family best.

So, it’s important to expect it to take a while to figure all this out, and to have to take the lead sometimes when you’re in hospital, asking for the tape you need or bringing it along yourself if the hospital doesn’t usually have the one that’s best for your child.

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Expect others to find tube-feeding strange – and to have to educate them!

People aren’t very used to seeing babies with NG tubes. You’ll find yourself having to explain things a lot to other people – probably starting with your close family and friends. They will need you to help them understand what is going on, what’s important to you and your child.

Read Kitty’s Real Story to find out what she did to make sure her family weren’t alarmed by the tube and could get on board with helping her out.

You should also expect total strangers to come and talk to you because they’ve noticed the tube. They might be really nice, but they might ask inappropriate questions. Often they assume this means the baby is really sick.

[Text]”You’ve got to carry everything, everybody stares. They see something, and say, what’s wrong with your child? I’ve had that experience.”

Here is what happened to Kathy:

“I’ve gotten angry thinking, how dare you! She walked past and then she ran back to ask me what’s wrong with my child. But then I got over it, because then I realised, some people haven’t seen this and they’re just curious. I think that’s important, to understand that if people are staring at you and coming to ask questions, it’s because they haven’t seen it before. People do look at it and think there’s something really big wrong with them, they don’t realise that it’s a feeding tube. They think, oh my god, what does the child have, it’s something really bad.”

It’s great to have strategies for dealing with this up your sleeve – check out our tips and tricks section for some suggestions!

Siân and Jonny had some pretty confronting experiences – one while out near their home, and another on a plane, but they had their own way of dealing with them, and on reflection reckon the other people were probably more curious than anything else:

[Video – Sian:WTE-1]
“I think Tori was probably three or four months old. This smartarse woman decided to make a very brash comment. She said, ‘Oh God what have you done to her?’. Apart from the initial evil eyes and death stare, I said ‘It’s not really any of your business is it?’, and turned my back to her pretty abruptly. I find that either people will stare and whisper, or they’ll say something completely inappropriate out just pure curiosity.  I’m sure she didn’t mean anything by it apart from just obviously not thinking before she opened her mouth, but yeah, I can see how that would put people off from wanting to go in any kind of social situation. Then there was this one time this poor guy was sitting next to us on an aeroplane, and I had to feed Tori.  I was on my way to take Tori to meet her family. Trying to push a syringe of formula in the air with the pressure when poor Tori is like laying – of course I couldn’t prop her up.  You needed gravity and there we are on the front row surrounded by an aeroplane full of people. Actually, my seven-year-old Alice was like, ‘do you need help mum?’  I was like, no I’m good.  But this poor guy sitting next to me, like literally it was like the whole world was going to end.  You know when you’re in pressurised cabins the syringe just like ‘boooom’ explodes. I had formula running – I think I got some on his trousers.  The flight attendants were freaking out.  Tori just smiled at them and everyone was just like, I see her, she’s fine.  It’s that initial fear that people think that the baby is so delicate and that something that must be so wrong that they worry for you when there’s something to worry about.”

Kitty made a clear decision not just to tube-feed in front of her family and friends, but to educate them herself.

[Video – Kitty:WTE-1]
“I had a family dinner to educate everyone. I said, don’t take it seriously, it’s just an NG. Like when you go to the beach and have sore eyes you put on sunglasses. So this is his sunglasses helping his intake. So, do you think it’s weird that you put on sunglasses? No. That’s what is the need for NG feeding. So, I even feed Geoffrey in front of all my family members and my babysitter. I think it’s up to the parent’s confidence to introduce your child to others, so how other people treat these things is very important. So, I think education.  Your family members, friends, your social people  – that is one thing that helps you yourself and to take your baby out.”

Read more about Kitty and her family in their Real Story.

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Expect siblings to notice what is going on, and want to be included in the journey

If you have other children they will be very aware that something is a bit different with their brother or sister. They will notice the tube and the particular attention the tube-fed sibling is getting, so they might get a bit jealous of their time with you.

For them this is just another new thing in the world that they want to understand and be involved in, so expect them to ask questions, want to watch what you’re doing, and maybe even offer hands-on ‘help’. Sophie described how Xander related to Brittney, his younger sister who was tube-fed for a while.

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“Xander, he’s very aware. If she pulls the tube out, he’ll go, mum, mum, quick, quick, Brittney pulled out the tube. Straightaway he’ll tell me. He knows that that tube should be in your nose and it shouldn’t come out. If she touches it, straightaway he’ll tell you. They know, but they’re also, he’s very, very caring about Brittney… It’s funny, when he wakes up, the first thing he does is asks about Brittney. Then the next thing he does, he gets out of bed and goes straight to Brittney’s cot.”

Our tips and tricks section has useful suggestions for how to involve siblings in tube-feeding routines, and how to avoid them feeling left out, and there’s more about siblings in the Real Stories section.

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