Lots of parents learn to live with both these realities, and over time the tube can seem less of a bad thing.

“You know nutritionally and you know intellectual that he needs the tube. It’s the emotional and psychological side that gets you and clouds your judgement. You know it’s best for your child.”

Sonya

“I think at the end of the day, all will be okay. I think we panic and whatnot, but there are worse situations than tube feeding. Do you know what I mean? As long as the other aspects, them growing, their development, if that’s all good, this is really, really minor and you can get control over it. Because this is our norm. You think the tube is such a pain in the arse that you just want to get it out. But it’s not the tube or anything like that that you have a problem with, you don’t care. You just want your kid to develop and be healthy and whatnot. I think it all starts from the day they’re born, if they’ve got their feeding tube and you recognise that and you’re aware of it more and you’re like, you know what, that’s that, I’m going to accept that and that’s what it is.”

Kitty

I had a family dinner to educate everyone. I said, don’t take it seriously, it’s just an NG. Like when you eat Chinese food and you use chopsticks. The tube is like chopsticks – it helps his intake. So, do you think it’s weird that you use chopsticks? No. That’s the same for NG feeding.

Kitty

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

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These issues come up a lot when taking photographs of tube-fed children. It’s very natural to seize those moments when the tube is out and snap away. It may be quite rare that you get to see your child’s face tube-free for quite a while. But photos with the tube in are still beautiful.

Erin went to get proper pictures of Sam taken, choosing to leave his NG tube in.

“I went and got the photos done with him and it was with his tube. I could have pulled out that tube and had the proper photos without the tube, but I didn’t. Because that’s him. I want to show him his journey. When he gets older, I think it’s very important, they like to know their story. I’ve taken photos of everything because he needs to see those and I want him to know that about his past.”

Erin

Roberta deliberately had lots of pictures of Eliza taken with the tube in, and told her own mother off for printing one out that was tube-free (see Staying positive, in the Tips and Tricks section).

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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 is a wonderful example of how normal it is not to get things ‘right’ first time (see what to expect)

Some parents worry about contact with other children. Tube-fed babies tend to get sick a lot as it is, and there can be additional concerns that other children might pull an NG tube out.

“He didn’t have the opportunity to mingle with other kids because you’re worried they’re going to pull it out. That’s what they do, the first thing they do is go to it and say what’s this, and they lift it and give it a tug.”

Shari

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… But on the other hand, socialising is really important for you, your tube-fed child and the rest of your family. Erica’s Real Story is a lot about managing the need to protect her son from disease, and the need for him to have a normal life.

Holly explained how she eventually realised being stuck inside wasn’t doing anyone any good, so she took the plunge and figured out how to make it work. She described a recent family trip out they had planned around Madde’s feeds, but in the end they ended up tube-feeding her in the café – which was just fine!

“I was a little bit more strict and cautious in the beginning. But then I found that my husband and my other daughter were suffering, because we were always at home. I said, you know what, stuff this, this is not going to stop me. Then we’d just work out a way between feeds and stuff. Like during the holidays now, we wanted to take our daughter to the aquarium, she’s never been before and she wanted to go. So we went out and got there in time for Madde to have a feed, so we’d just quickly feed her in the car, so that was fine, and then she’d be done. Then we’d spend the day at the aquarium. So by the time she had her next feed, we were ready to go home. I actually had something on me just in case, if she wanted a little bit earlier, and that’s what actually happened. We were at a café having lunch, she was ready for another feed, and by the time we finished our meal, fed her quickly while I was in the café – because I’m in a more comfortable environment and I don’t care if people look at me or not, I’m feeding a child, as simple as that.”

Holly

Hannah described a key moment for her after six months of being isolated (her family’s full story is in the Real Story section:

“I wanted to be at home in the beginning because it reduced the external factors that I couldn’t control. But when Tony about six months, I just went ‘Stuff it, I can’t live like this anymore. People are just going to have to deal with it’.”

Hannah

Even things like going for a swim are possible. Even though it was hard, Mel got them both into the water:

“I used to take him swimming but his head would have to be up and I’m holding the bloody tube and holding him, just to get him in the water. But then when he had his helmet, I started to tape his tube onto the helmet like this, and so then it was never hanging.”

Mel

Siân looked back on the first few months of her daughter Tori’s life, and feels they might have been a bit too cautious, but is happy with their decision (see their Real Story for background on why being cautious made a lot of sense!):

“When you’re stuck in the NICU (Neonatal Intensive Care Unit) it’s such a sterile environment. You fel like that needs to be the environment when you’re at home. But it doesn’t need to be like that… Well, it was winter when Tori was born so we hibernated.  We were in the NICU for six weeks before we came home, and it was very cold.  So, we were like we’re not going to do the getting the newborn flu because we have breathing issues.  So, we hibernated for at least six months.  Swimming was on the no go list. I’m sure we could have managed it, but it was just of those things that we probably didn’t have enough info whether we could, or we couldn’t. It was kind of just a decision that we had made that we’re just going to shelf that until later, and we did.”

Siân

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Remember that looking after yourself is okay – it’s not selfish! In fact, it’s super-important. Jenny told us how she was jolted into realising she needed to look after herself better:

“Well, I lost a whole lot of weight with the whole thing. I was more concerned with him than with me. I realised I wasn’t actually eating enough. Just crackers along the way or whatever. I lost so much weight. I didn’t realise how awful I looked and then suddenly, I was like ‘Oh shoot! I’d better wise up and start eating properly’”.

Jenny

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