Tubie or Not Tubie… Any Questions??

Naomi has had a feeding tube since she was 13 months old.  Reactions have been mixed…  Some people are too afraid to ask questions but are itching to know more, and some people have meant well but come across as rude and unhelpful.

When it comes to our girl and her tube, I am always happy to answer questions that people may have, and don’t really tend to get offended easily.  People are curious, especially young kids, when they see her.  I can’t blame them, she’s a wee cutie with a gorgeous cheeky smile!

A recent shopping trip illustrated this perfectly.  As we navigated the aisles, Naomi flipping through a book I was buying for her and pointing out Peppa and all the gang, I heard a little boy (probably not much older than her) asking who I’m assuming was his granny, “What happened to that baby??”  I glanced round to see the woman shhh-ing him and ushering him away, as if she was contagious.  We passed her at least another 5 times as we worked our way around Asda, each time the little boy and Naomi smiled at each other and there might have been a little wave here and there, while the grandmother studiously avoided eye contact and was deeply uncomfortable about the whole thing.  On the flip side, another lady stopped us while we were simultaneously looking at yogurts and pointing at Madame Gazelle and Susie Sheep, and commented on the cute poncho that Naomi was wearing.  We struck up a brief conversation and it was all very pleasant.

I DON’T MIND when you ask questions!  I DO MIND when you act like an idiot.

I understand that you’re trying not to offend or be insensitive, but really, we’ve been through so much with this little lady to be getting our knickers in a twist about someone asking about the obvious.  And I put my big girl pants on this morning and everything!  So rather than making a song and dance about avoiding it, please just ask.  Please.

In saying that, here are some of the questions that people have asked us, for those of you who are curious…

This is probably a stupid question, but…

No.  It’s not.  You can’t be expected to automatically know about stuff like this and you won’t know unless you ask.

What’s wrong with her?

Nothing.  Except maybe a severe case of having everyone wrapped around her little finger. 😉

OK, so why does she have the tube?

She needs a bit of extra help with feeding and nutrition. It can be a common thing with preemies, especially micro preemies (born before 26 weeks or under 2lb) or those who had a rocky start.  Naomi was ventilated several times, plus spent 130 days in hospital, with all the sensory overload that comes with that.  Along with silent reflux, she has always had a tough time keeping up with the volume needed to keep her at a healthy weight.  This was fine when she was tube fed in hospital, but it became a daily struggle to keep her fed once we got her home.  Attempts at weaning were unsuccessful and only added to her oral aversion.  It wasn’t a decision that was taken lightly — she had 8 months, 3 hospital stays, and at least 6 health professionals involved in the decision.  Recent conversations with her consultant have flagged the fact that it could be linked to cerebral palsy — something that we’re keeping an eye on because of the brain bleeds she had when she was born.

How long will she have it?

How long is a piece of string?  How long do we want her to stay alive?  Currently, it is providing about 90% of her daily intake of food and drink.  She has come on in leaps and bounds, especially over the last month or two, and is willing to try all sorts of things, but not in sufficient quantities to indicate that the tube can be ditched any time soon.  In fact, given that she’s had it for about 16 months now and it’s only meant to be a short term thing, she’s currently on the waiting list for a gastrostomy, where they will insert a PEG tube directly into her tummy.

Why are you letting them cut her? She doesn’t need that PEG thing, she’ll be fine!

Agreeing to PEG surgery is not something we’re just jumping into.  As I said, the NG tube is only meant to be short term and she’s already had it for well over a year.  By the time surgery comes around, it could be another year anyway (by which stage she might not even need it anymore – but better to be on the list than not).  The benefits of having a PEG certainly outweigh any risks of surgery.  When she doesn’t need it anymore, it can be removed, so it’s not a permanent thing by any means.  But it’s becoming more and more evident that these issues, while they are improving, are going to take a lot more time than we’d have liked, so a medium term solution is certainly preferable to a short term one.  While the NG tube has been a positive game changer for our family, it is not without its downsides.

Like what?

We have tried several types of tape and it reacts to her skin after a while.  As a result, we have to switch sides regularly to ensure that her poor cheeks don’t get too sore.  While passing the tube is a skill that I’m glad to have acquired (as it saves so many hospital visits), it is something that I will never enjoy doing and it breaks my heart a little more each time.  The mental/emotional trauma for our girl, having to be pinned down, is awful to watch.  Some days she is so brave and doesn’t cry or complain, which makes life easier for me as the job is done quickly, but that look of resignation on her face makes those times harder than when she is kicking and screaming.  Sometimes we have to have one of her big sisters hold her hands and talk/sing to her while we do the necessary.  No child should ever have to help hold their baby sister down while they have something shoved down their nose.

Can you not just give her <insert food or drink here>?

Believe me, we have tried.  She will have tastes of just about anything you put in front of her, but not in sufficient quantities as to warrant us ditching the tube.

Did you try <insert further suggestion here>?

Yes.  Yes we did.  And that too.  And the other thing you were about to suggest.

But she ate that banana…

Yes, and she’ll eat another one next week.  She cannot manage the volume of food and drink needed to give her sufficient calories to maintain her weight and keep her hydrated.

Oh look!  She doesn’t have the tube in!  Does that mean…?

No, it doesn’t mean it’s gone for good.  It simply means she has pulled it out, it came out when she vomited or I took it out to give her skin a break, and I haven’t re-passed it yet.  Believe me, if she had picked up enough with the food and drink that I could remove it for good, you would have heard me shouting it from the rooftops already.

Can’t you just take it out and see how she gets on without it?

Sure.  And then the nurse can put it back in when she is hospitalised for dehydration and malnutrition and we’ve got Social Services knocking on our door.

What happens if she pulls it out?

We put it back in again.

Oh I could never do that….

When the alternative is bringing her to the hospital and waiting for a nurse to do it for you, it’s amazing what you can do.  I know it’s not for everyone, but I am definitely glad we are able to do it ourselves, however unpleasant it is.

So, tube feeding is all really easy and straightforward then.

Well, yes and no.  It certainly makes our lives easier, knowing that our girl isn’t going to starve!  But it makes things immeasurably more difficult in other ways too.

You just have to connect the tube to a pump and press a button, no?

No.  First you have to check that the tube is still where it is meant to be by checking her aspirate (fastening a syringe to the end of the tube and drawing out some of what’s in her tummy, then testing the PH).  If it’s still in her tummy, this will be acidic – stomach acid and all that.  If it’s not, then it could be water left sitting in the tube.  You have to be 100% sure that the tube hasn’t moved because if it isn’t still in her tummy and you start pumping milk into her lungs or something, it could be disastrous.

After checking the aspirate, the tube has to be flushed with water to clean it out.  Then it is hooked up to the feeding pump by something called a giving set.  We use a fresh one of these with every feed, so you can imagine the amount of boxes we have around the house at any given moment!  The volume of feed is set and the rate at which it is delivered, then the milk is fed through the giving set until it reaches the end.  At this point it is fastened onto the NG tube (otherwise you’d be pumping air into her stomach) and set to run.

When Naomi is getting a feed, we need to watch her closely for signs of distress or discomfort.  If the rate is too high, it might mean the feed is finished sooner but it is also more likely to upset her stomach and cause her to vomit.  Not so much now, but for the first few months we also had to be ready to jump in and stop her from pulling it out mid-feed!  If that happens, mission aborted, you have to leave it for a half hour minimum before putting it down again.  Great fun.

There are so many things that can (and sometimes do) go wrong which make things more work than what’s involved in a non-tubie child.  Nipping out for a quick shopping trip has to be carefully timed.  We are perpetually late for EVERYTHING because no matter what time we plan to leave, she will inevitably throw up half of her bottle as we’re about to walk out the door.  An overnight/weekend trip involves so much extra packing and lots of anxiety about forgetting the charger for the pump!  But overall the benefits outweigh the negatives, as our crazy kiddo has come on in leaps and bounds since the NG became a part of the furniture.

The tube spoils her beautiful face.

No.  No, it does not.  Her face is beautiful and nothing spoils it, ever.  End of.

Someday she’ll just decide to eat and that will be that.

This is all a load of nonsense.  Just put the food in front of her and let her eat it.

I may have my big girl panties on and am not easily offended, but honestly, what a way to completely discount everything our girl has been through in the last couple of years!  Like with everything else, Naomi is marching to the beat of her own drum and is doing things in her own time.  She may not tick the typical toddler boxes or meet your expectations but nor would we want her to.  She is an amazing wee girl who has worked hard to overcome everything that’s been thrown at her.  She’s not just a fussy eater or stubborn or…. well, okay, maybe she is, lol!  But there are very real issues that she’s been working through and she has taken massive strides to overcome.  Let’s not let the best be the enemy of the good, and let’s look at what she has achieved rather than where she’s “failing”.

Hopefully that has given a few answers to some of your burning questions!  Anything else you’d like to know?  Leave a comment or shoot me a message and I’ll do my best to answer.

 

All images are either mine or public domain.

About Le@h

Mummy to 5 wee girls. They're mad, but then again, so are we.
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1 Response to Tubie or Not Tubie… Any Questions??

  1. Margaret Rose Realy Obl OSB says:

    Bless you all!

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