My little one has a g-tube. And I am so glad. I never would have pictured it. We have medical supplies delivered monthly, hospital totes full of supplies around the house, an IV pole by the crib, and a slew of medical magnets, cards, and instruction sheets on the fridge. And I am glad. I am glad my son is thriving. I’m glad he’s getting the nutrition he needs. Most of all, I’m glad he got the g-tube before ever leaving the hospital.
My son has laryngomalacia and struggled with aspiration while in the NICU. After a scope, a swallow study, and rest, the doctors decided he wouldn’t be able to eat by mouth for an extended period of time. They really only gave us one option: a g-tube.
I was a little sad I wasn’t able to breastfeed normally. I pumped for months, but it was hard. I was sad he had to have surgery and didn’t get to enjoy eating. I was frustrated by how much he was hooked up to an IV pole or backpack. I couldn’t believe we were going through what we went through.
As I noticed more and more kids with g-tubes on social media, read stories, and saw pictures, I noticed a common theme. A lot of kids struggle to eat for months before getting a feeding tube. A lot of kids have NG tubes for extended periods of time. I saw pictures of kids before and after getting their feeding tubes. The difference is shocking.
My son’s g-tube has been a blessing. I was nervous about taking care of him when he came home. It took some time to learn everything, but the tube took some of the weight off of my shoulders. I was able to get enough calories and nutrition in him without having to worry about how much he was eating orally once he was able to take bottles. I was able to rely on doctors’ recommendations for volume and fortification. I was able to focus on enjoying having my son home and by boys together.
We are now into flu and RSV season. And probably a million other illnesses that terrify me more this year than ever. I was lucky my son came home from the NICU at the end of all of this last year. I feel he has the best chance he could have this year, but it’s still scary. However, it gives me just a little bit of comfort that if he did get sick, I could keep him hydrated and get him the necessary nutrients that much easier.
We actually haven’t had to use the g-tube much lately. As we went into fall, I had several doctors and therapists mention that even if he does well for a while, we would likely leave the g-tube in until spring. At first I was frustrated. I just wanted everything to be normal. It felt like even if he made tons of progress, there wasn’t any hope of him being “normal” until spring.
The more time goes by, the more grateful I am he has his g-tube. I have no problem leaving it in as long as he might need it. It’s our safety net. It’s what allowed him to come home from the hospital, and it’s what allows me to take care of him at home.
And there is no such thing as “normal.”
I am so proud of my little man. He has come so far, and that g-tube is a symbol to me of how tough he really is. Besides him being small for his age, there isn’t any way for people to see his struggles. They can’t tell he spent 39 days in the NICU. That he was a preemie with IUGR. That he has laryngomalacia. That he had a supraglottoplaty or reflux. That he has to have his food thickened. Most of the time he just seems like another normal kid to me. But when I pick him up and feel the button in his stomach or when I change his diaper and have to keep him from pulling on that button, it reminds me how strong he is.
So if you are facing your child getting a feeding tube, don’t worry. There’s a lot to learn. It will be overwhelming. It isn’t ideal. Let yourself feel upset. But know that it isn’t your fault. You are doing what is best for your child, and there are benefits. Everyone needs medical help sometimes. This is just your child’s story. And it is perfect for them.
