Our "g-tube" sweetheart

Two years ago this month - on Feb 13, 2017 to be exact - Antonio went in to Sickkids for a G-tube surgery. It was a game-changer for his nutrition needs and how he’s exclusively fed ever since.

At the time, I remember being more excited than nervous for him because he was showing no signs of eating orally and had been feeding off an NG-tube at home exclusively for several months prior. That feeding schedule was intense … an hour-long fed, every three hours, 24 hours a day … and at times I can’t even believe we survived it while juggling the schedules of work and other children. But we did somehow and that’s the beauty of struggle. You just get through it because you have to. There’s no other choice.

Anyway, if you’ve ever had to deal with the nuances of a gravity bag you’d know that they are not fun to deal with. You’re always playing around with the clamp, trying to make sure the manual flow you’re setting isn’t too fast for fear of making your child spit-up (which is hard to avoid, especially if you’re dealing with a baby who has acid reflux), or too slow because then you’re not giving enough time for the stomach to digest and empty from one feed to the next. The result is more spit-up either way. Add to that the times when the flow just stops for no reason, at a 3AM feed, when you’ve accidentally fallen asleep in the nursery chair, while waiting for the feed to finish to flush out the tube, only to wake up to a bag still full of milk, discovering the feed wasn’t even happening for the better part of the hour. Let me tell you, all those nights and early mornings can really take a toll on even the best of us.

When I heard about this glorious g-tube, I saw it as a chance to improve his quality of life as well as ours. For all the positives we loved about NG feeds, there are dangers too. If the child pulls out the NG during a feed, there’s a chance of aspiration, harming the lungs and causing other complications. Antonio was that baby who’d find and pull out the tube every single day. And I’d have to thread it back down his nose, every single day. Sure, we tried securing it with a tape but that didn’t hold very long. It would either lose it’s stickiness or start peeling up on the sides from the everyday movement of the face. All this to say that we swaddled him during those hour feeds to avoid the major issues that come along with the pulling. But imagine being without use of your arms for over eight hours a day. It’s terrible for anyone, let alone a baby who is already delayed developmentally.

In 2017, I decided to commemorate the surgery with a photoshoot the day before we were scheduled at the hospital. I found a pair of angel wings in the dress-up bin my girls had and thought it would make for a sweet photo of my precious little boy. I didn’t do anything with the photos except stick them in a folder on my computer, for safe keeping. I don’t even think I showed them to my husband.

It hit me second week of February this year that we’d be celebrating two full years of Antonio’s g-tube and so I recreated the same 2017 photoshoot. There’s a real difference taking these same photos two years later. Back then, Antonio couldn’t even sit steady. Today he’s strong and solid in his core and trunk. Back then, he’d just pulled out his NG tube moments before I took the photos but today he proudly shows off his g-tube and stoma. Back then, his skin was ripped and raw from all the tape. Today his skin is perfect, just like him.

Doctors felt he didn’t look like anyone in the family when he was born but in fact he is the spitting image of his late great-grandfather. Coincidentally this is the same grandfather whose birthday was on Valentine’s Day. Those angel wings were more than just a prop. They’re my way of symbolically honouring my late grandfather’s memory as well as commemorating my real-life “sweetheart” in an extra special way on his first Valentine’s, post-surgery and today.

Happy Valentine’s to all of our sweethearts!