Look How Far We've Come
One of the most difficult things for Luca has been eating. Ever since he was born, eating has been a huge struggle. From latching issues, to projectile vomit, to gagging on food, to slow weight gain… I think we’ve dealt with just about every difficulty around feeding there is.
It’s been really hard to watch him struggle. And quite frankly, it’s been really hard on us as parents too. Feeding time had quickly become something we dreaded, which then always made us spiral into feeling really guilty. My irrational brain always thought, “what kind of parent dreads feeding their child?” and then I’d sit on the floor and sob.
As he weaned completely off bottles and needed more solid foods, I spent many days wondering how we’d ever be able to get him the nutrition he needed. Our team of doctors started talking to us about the real possibility of a feeding tube if he couldn’t gain weight more consistently. And I lost count of the number of times someone told me he had “failed to thrive”. (Also going to start my campaign soon to change the narrative on the whole “failure to thrive” thing. I don’t know if there’s a worse way to make a parent feel like a failure too.)
Before we resorted to a feeding tube, our doctors wanted to try one final thing. So about 6 months ago, Luca started a weekly feeding therapy program. Our last true hope.
During our first appointment, our feeding therapist got out a pen and paper and wanted to make a list of what he was currently eating to understand his baseline. Outside of baby food, we wrote down three things:
Scrambled eggs (but only if mixed with applesauce)
Applesauce
Yogurt
I remember looking at that mostly blank piece of paper with immense sadness of where we were at.
“Don’t worry. We’ll get there,” she said.
That first session went horribly. Not because of our wonderful therapist, but because it was just such a painful reminder of how much work we had to do. How far we had to go.
But little did I know, that weekly session would be our godsend.
Week after week, we continued trying new types of foods. We worked on exercises to prepare his mouth for eating. We worked on techniques to desensitize his mouth and push back his gag reflex. We practiced giving him all types of textures and flavors.
Somewhere along the way, our therapist changed over from being his feeding therapist, to being more like my therapist and cheerleader. There was something special about sitting down next to her every week, talking through our challenges (and wins!) and having her really listen that catapulted me into motivation mode. Her words have been like a balm for my broken mama heart.
“It’s going to be hard, but it’ll be up to you guys to push him. I know you can do it”
“Don’t give up. He’s so determined.”
“You may not see it now, but he’s already come so far.”
“He’s honestly an angel on this earth. I cannot get over his sweet smile.”
About two month ago, we did the same exercise of writing down all the things that he was eating. This time, the list went more like this:
Scrambled eggs (not with applesauce!)
Yogurt
Applesauce
Peaches
Bananas
Avocados
Crackers
Graham crackers
Cheese (strings and slices and shredded, oh my!)
Oatmeal
Sweet potatoes
Mashed potatoes
Refried beans
Chicken nuggets
Spaghetti O’s
Muffins
Toast
Waffles
Pancakes
Breads (banana, pumpkin and his personal fave – zucchini bread!)
Ravioli
Pudding
Cake
Hummus
Potato soup
Smoothies
“You should be incredibly proud,” she said after we finished the list.
I was in shock seeing on paper just how far we’d come. We had made it our mission to push him just a little further each day. We moved past our PTSD of gagging, choking or throwing up with every meal. We still had bad days (and still do!), but man did it feel good to see his progress in that list.
Shortly after we dropped down to every-other-week sessions and starting in January, he’ll be graduating to monthly. We’re moving into the next chapter of feeding, starting with drinking from different types of cups and then venturing into self-feeding.
We still have a ways to go and it can still start to feel overwhelming wondering if he’ll ever be able to feed himself, but I’ve learned to focus on celebrating the little wins and stress less about the unknowns. And I’ve learned to give him and myself grace if there’s a day a meal flops horribly and all he wants to eat is sour cream. He’ll be okay and I’ll be okay and that’s all that matters.
So just remember that whatever the thing is that feels so impossible and overwhelming like you’ll never be able to get past it, don’t give up. Take it from me, one day you WILL look back and see just how far you’ve come. I promise.