In honour of Feeding Tube Awareness Week, and in honour of all Rufus’s tubie friends.
Feeding is agonising for us mothers, personal choices questioned, guilt and prejudice piled on. Breast or bottle. When to wean. How to wean. Weight gain. Weight loss. Feeding in the night. Sleeping through. Answering our children’s cries by removing hunger from the list of ailments. Whittling it down to what works, winging it, constantly checking yourself “is this what I’m supposed to do?”
In the glory days of my pregnancy with Rufus I imagined our cuddles, feeding him, soothing him. Gentle coos, loving lilted words. I hoped to breast feed, my body preparing itself for this. It wasn’t only my belly that rounded. And then the searing shock of a premature birth, I did all that was in my power for my boy. Pump, pump, pump. Every three hours. Carefully decanted into bags and bottles, cooled and frozen. Colustrum next to Findus Crispy Pancakes. But he wouldn’t know the taste, his first feeds weren’t nuzzled in my chest. They were dripped in, a ml every hour, down his nasogastric tube. Drip, drip. Puke, puke. Then they would be taken away, his long line delivering TPN (Total Parental Nutrition) until his guts calmed and we could try again. And again. And Again. And… Cyclical, painful, distressing. Boring. Frustrating. I’ve mentioned this, oh, just once or twice, but thrive my boy did not.
He would take a dummy. His swallow wasn’t declared unsafe, but his reflux has always been marked. He tried his best to drink, preferring cups over bottles but as his weight plummeted so did his energy levels. His NG tube was his saviour, when he couldn’t muster up enough gusto to manage more than 10 mls, his tube made sure the rest was delivered. It was also left open to allow flow back, allow his stomach to take it’s own sweet time. I cuddled him whilst holding a syringe of milk upright, held him to the breasts left sore and drained by machines. It was our odd little version of normal. But still he could not thrive on my resources alone. Pre and semi digested formulas tried and tested, until eventually after three months the scales started to quiver beneath him. He no longer resembled the child from The Exorcist at all times. As he kept on track, the path to home was eventually being paved. And we’d take that, and his nose hose, happily.
A ha, I thought. At home I will beat the nose hose. Relaxed, unburdened, we’d overcome this hurdle. See his cheeks clear of tegaderm, no longer will a nurse haphazardly stick his upper lip to his eyebrow. And in a way we did, but it was tubies 2, Ds 0. Rufus’s mouth had become aversed, his weight wouldn’t allow for a relaxed attitude. The more I pushed the point, the more his screams of refusal heightened. Plus I had eight medicines to dispense everyday, and they didn’t come Calpol flavoured. A spoonful of sugar wasn’t going to help them at all. We became more than reliant on his NG tube. But he became less tolerant of it. He sharpened up his powers of removal from puke until it comes up, to stray fingers, to actually tensing his stomach muscles to force a loop and removing with fists bound in scratch mits. Enough was enough. Holding your child down whilst passing a tube up their nose and hopefully guaging the right place in their stomach and not their lungs was nothing short of torturous. And I was doing it at least once a day. And imagine sitting up every three hours in the night, your baby asleep but having to watch a bolus of milk in a syringe slowly drain. Too quick and he might be sick. Too slow and the gaviscon started to occlude the line. The pace dictated by how high or low you held the syringe. Hardly snuggly and warm.
We made the choice to go for a PEG gastrostomy. It wasn’t an easy choice but we took our child’s comfort first. Allow his stomach sphincter to rest, allow him to enjoy swallowing. Control the speed with a pump. Stop the stares when out and about. And we haven’t looked back. Of course I’d love him to eat more orally, but it will be a slow process and only supported by his ability to thrive based on his nutritionally complete formulas. And I can work his pump with my toes, which means I can feed his sister the way I always wanted to. I love my boob tube kids. Although I have to watch his ferret fingers on it…