Darcy’s Blog: I Love Gunnar’s Feeding Tube

Gunnar asked me to write a blog for #feedingtubeawarenessweek, and since I mostly write about CF as it relates to dating/relationships, I thought it would make sense for me to write about how feeding tube stigma might impact dating and relationships.

The thing is, I can’t, because I love his feeding tube!!

Allow me to unpack my love for the feeding tube.

When Gunnar and I first started dating, I dove deep into the world of cystic fibrosis. It was scary and intimidating to learn about about FEVs and lung function, pulmonary exacerbations and PICC lines, enzymes and formula, and everything else that goes into cystic fibrosis care. With that being said, the feeding tube stuff was at the bottom of the hierarchy of “scary” things. Compared to bronchoscopies, it was boring. My relationship with Gunnar’s feeding tube started out with me thinking it was the most boring thing about him. It was just a beach ball spout attached to his stomach.

I naturally learned more about the feeding tube and its role in Gunnar’s care as our relationship progressed. One day, I was helping him bring a box of his overnight formula up to his room, and I took a closer look at it. I gagged. It was literally made of corn syrup and canola oil (which, historically, was created to lubricate steam engines). Thus began my first foray into tube feeding nutrition research.

Three years later, I consider myself a feeding tube connoisseur. I’ve learned to make balanced blends (shoutout to all my peeps in Blenderized Food for Tubies). I’ve been on a mission to find a method that will allow Gunnar to tolerate thicker blends (in fact, I saw a 140 mL syringe on Instagram yesterday, and we ordered it last night to see if it’ll help. Gunnar will post about it if he likes it!). Gunnar and I even have a big #feedingtubeawareness project in the works!

I love the feeding tube, because it is one of the few ways that I can directly contribute to Gunnar’s health. The hardest part about loving someone with CF is that you constantly wish you could help, but that’s often impossible. I’m not a doctor, nor can I do his treatments or take his enzymes for him – but I can certainly flush turmeric down his feeding tube! Participating in this aspect of Gunnar’s care gives me a sense of fulfillment that I wouldn’t otherwise have.

I know the feeding tube isn’t all glitter and rainbows for those who actually have to use it, but for me, it’s been a really great way to connect to Gunnar and his fight against CF. For that I am grateful.