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?