Pinning my hopes on a button

Last night, as I was kissing Benjamin goodnight, he smiled at me. Just last month this would have been no big deal: whatever happened during the day, I knew I could rely on getting a smile as I leaned in for a kiss before turning out his light. Yesterday, it was a rare glimpse of my once-contented little boy, a chink of light at the end of our present, particular tunnel.

A few weeks ago, I cried on the shoulder of a hospital doctor as we agreed to put an NG tube in, just overnight. I felt that I had finally failed in my first duty as a mother – to feed my baby. But I couldn’t argue with the difference it made. That tube stayed in, and with its extra nourishment Benjamin began to put on weight, to settle in the evenings, to have time to enjoy his oral feeds too.

A couple of weeks later, the NG tube ‘came out’ (I’m not going to say how it came out … okay, I admit it, I accidentally pulled it out. Not a clumsy toddler, not Benjamin himself in irritation, but me. Bad Mummy). After two days and countless nosebleeds at the hands of the best nurses in the country (wonderful, skilled, gentle, caring nurses who hated putting him through each attempt as much as I did), we agreed that an NG tube was not going to be ‘a sustainable solution’ for Benjamin’s feeding. A meeting was held, we agreed to be pencilled in for a gastrostomy, and we went home and back to oral feeding as before.

For the first week or so, he would guzzle down five bottles a day: the full amount that he had been getting through both oral and tube-feeding before. We voiced the question, “If he can do this, do we need to go for the gastrostomy at all?”

But we didn’t realise that the effort was exhausting him. Gradually he began to flag. His feeding became slower, from twenty minutes a bottle to an hour, two hours, to not finishing one bottle before the next was due. He’s now getting barely half of what he needs in a day, and that is taking him all day. If he isn’t feeding (or vomiting) he is sleeping. His breathing is rattly. He dozes through his pureed ‘meals.’ He cries, sometimes strongly, sometimes weakly. He’s constipated. He has no time to learn, no energy to play. He rarely smiles.

So, I never thought I would, but I am counting the days until his gastrostomy. Trying to keep him hydrated, fed, happy and infection-free for just a few more days until the operation. Praying that he won’t be so sick they’ll postpone it. Ready to fight if they do because – I truly believe – until we get this ‘mickey button’ he will just continue to get weaker. The button is no longer a lifestyle choice for us but a means to a life worth living for Benjamin.

Am I setting myself up for disappointment? Pinning my hopes on a tiny tube? Can it really solve Benjamin’s feeding difficulties, stop him bringing his feeds back up, restore his smile? Will it revolutionize our lives? Will I be able to take the kids out for the afternoon (feeding pump in tow) instead of being tied to the sofa, bottle in one hand, muslin in the other? Will it give me my happy little boy back?

Sleeping off yet another bottle of the hard stuff...

Sleeping off yet another bottle of the hard stuff…

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.