To tube or not to tube

‘Failure to thrive,’ it used to be called. Nowadays it’s ‘faltering weight.’ Both terms to strike fear into a mother; neither does justice to our daily battle to keep Benjamin’s weight within the realms of ‘normal,’ our weekly visit to the centile graph, the results of which are dutifully emailed to the dietician in case this is the week she decides so much slippage is too much.

graph

From day one we knew it would be an uphill struggle. They predicted he wouldn’t breastfeed, but with his first tantalizing nibble in the delivery room, I knew he wanted to try. That first week was spent repeatedly weighing him to calculate exactly how many calories he needed to imbibe each day, then forcing that quantity of milk into him through every combination of breastfeeding, formula-feeding, expressed milk-feeding, syringe-feeding, finger-feeding. Every three hours we fended off the well-meaning paediatrician with her naso-gastric tube. Every three hours we re-calculated, expressed enough milk for the next session, and tried to snatch enough sleep to continue. Without the practical support of the nursery nurses and the encouragement of the midwives we would never have jumped that first hurdle.

After five days we were home, terrified, and clinging to that regime. It took weeks – and the support of the community midwives and breastfeeding counsellors – before I was able to believe that Benjamin really could feed ‘on demand.’ That he and I could work as a team; that we each knew when he was hungry and that his weight would continue to creep up.

The months passed. He got hungrier, cluster-feeding for a full six hours each evening, then waking during the night for more, and still the graph teetered around the danger-line. We added 200 mls of high-calorie formula each day, then 400 mls, then 600 if he would take it. We added purees, three times daily, then snacks on top of that. The graph inched up, tracking along the 0.4th centile (putting him in the lightest four out of every thousand boys of his age).

At a recent ‘Multidisciplinary Meeting’ with the community paediatrician, she looked at the neat line of weekly dots tracking the 0.4th centile and was satisfied. What she doesn’t see is the sheer effort that Benjamin, I, the whole family, put in, day after day, to keeping that line from faltering. The breast-feeding, the bottle-feeding, the oh-so-slow puree-feeding. The pureeing, the cleaning bottles, the cleaning up milk that doesn’t stay down. Some days he is so hungry I can’t produce enough breast milk. Most days I am constantly offering it when he is not interested. Every evening one of us is glued to the sofa as Benjamin glugs through his bottles. We have a freezer full of breast milk, expressed both to keep up my supply for the hungry days, and as insurance against any future hospital stay.

So we talked again, as we have at every meeting since before he was born, about tube-feeding. An NG tube through his nose or PEG into his stomach. The paediatrician seemed to imply it is as much a lifestyle choice as a medical one: if feeding him becomes too much, this is our get-out. But what mother is ever going to say to the doctors, “I’m sorry, feeding my baby is too much effort”?

Now, his graph is dropping again, away from that 0.4th centile line, the lowest on the paper. He’s lost 300g in a month – the equivalent of nine Cadbury’s Creme Eggs. Every day I wait for the dietician to call and say, “This can’t go on.” Every day I present him with my breasts, my purees, and those stinking bottles of formula. Often, more dribble comes out than food goes in.

As a recovered anorexic I have been so aware, so careful with Jackie, never to treat food as a punishment or reward; never to say, “you can’t have pudding until you’ve cleared your plate,” in the hope that she’ll retain those inbuilt cues to her hunger and satiety that I have mistreated until they are gone. Even with Benjamin, so far, I may present him with food but if he’s not hungry, there’s nothing you can do to make him eat and I am proud of him for that. The thought of putting a tube in and just pumping him full of tasteless fluids sickens me.

And he takes pleasure in his food. Real, sensory pleasure. He opens his mouth for foods he likes and clamps it shut for those he doesn’t. He clearly distinguishes different flavours and textures. I would hate to deprive him of this by bypassing his mouth altogether.

This isn’t something we have to decide straight away, but it’s something we do have to start thinking about, considering risks versus benefits, understanding what each option entails. I hope, at least, to delay the decision until he is big enough for a PEG, to spare him the discomfort and indignity of an NG tube. It’s not an all-or-nothing solution: potentially we could use a tube just for top-ups on the days he’s struggling to eat enough orally. And, as usual, just when we think we can’t go on, Benjamin pulls something out of the bag. This week he gained back 100g in weight, so maybe we can put it off for a little while longer. We will keep battling on.

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5 thoughts on “To tube or not to tube

  1. Hello😀
    I don’t often comment on blogs but this post really resonated with me. I wrote a similar post like this about 2 months ago. I was breastfeeding my boy a lot, and we were feeding him purée and a little cup feeding. He has always sat on the same 0.4th percentile. We had the same meeting re: peg or NG tube and pros and cons. I was dead set on keeping up with our routine although it was full on like yours, it was working and it meant no tubes! But, things changed over night and I was no longer able to breastfeed him anymore because his dystonia was so aggressive. Long story short, he ended up with an NG, and I felt terrible for like a day. Now we are on a waiting list for the g tube. He has since been sick with a viral thing and boy were we fortunate to have the NG as he went off his purée and cup feeding! He’s now back on purée, and cup feeding some fluids and just topping him up and giving formula and this keeps him well hydrated. Sorry for the essay but I thought maybe I’d share a little of why I feel your post got my attention and that I might be able to understand how you are feeling during this challenging time. Thinking of you and Benjamin xo

    Like

    • Thank you so much for your essay! It is just good to hear other people have the same experiences and fears. Benjy cannot cup feed so at some point we will have to find a way to get fluids into him. We also have big problems with his tone making breastfeeding challenging to say the least! As I write it is midnight and he is screaming hungry yet keeps coming off the breast… It is really nice to know that you have felt the same but if (when) we do go for a tube it will not be the end of the world! Thank you and good luck with your own wee boy x

      Liked by 1 person

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