At a certain point, there must be an “awareness week” for everything under the sun… Polar bears? August. Gluten Free Living? November. Accordions? June. Feeding Tubes? February! I used to think that all of these “Awareness Weeks” were silly… I mean, come on… do Accordions really need their own week of awareness?! And feeding tubes… really? But yes.
(Well, I honestly can’t speak about the Accordions but Feeding Tube Awareness Week is actually important!)
As most of you know, my daughter is 100% dependent on her feeding tube. This silly tube and pump and button keep her alive. Without it, our journey thus far would probably have been even more bumpy than it already has.
Last summer, we were eating out in a restaurant with a couple of friends. Lorelei was due for her 12pm feed, so I unobtrusively set it up, leaving her feed bag hooked to the edge of her stroller while she slept and ate. There is usually one, quick beep when priming the milk through the pump. But nothing louder than a cell phone ring. We had some onlookers, a couple with probably a 10 year old son. My mom made the comment “Those people are very interested in what you’re doing.” I was in my groove. I didn’t notice what was going on. When we left, my friend said to me, “I’m shocked you didn’t go say something to them.” What I didn’t realize was that that entire family was pointing, laughing and taking pictures of my daughter and her feed bag. My initial reaction was anger. Who the heck does that?! But then I felt sad for them. For their young son. They didn’t understand. They made fun of what they didn’t know. They were ignorant of our situation and how this not-typical tube was saving my child’s life.
So maybe that is why we have awareness weeks. Maybe that is why these silly weeks are important. Maybe awareness weeks like Feeding Tube Awareness Week serve the purpose to educate and make these things a little less scary.
I had to learn everything really fast. In the NICU they throw words and phrases around like we all understood and spoke their language. Their words blurred over my head – all I knew was that my baby had wires and tubes, lots of wires and tubes, coming out of her.
Lorelei has had an NG tube (runs down her nose, throat and into her stomach, it is not permanent and easy to remove) and she now has a G tube (a button or tube that is surgically placed on her belly that puts food directly into her stomach, it is semi-permanent). I have friends who’s kids have GJ tubes (where food bypasses the stomach and goes directly to the intestines).
The decision to switch from an NG tube to a G tube was tough for us. It was scary. It was the first semi-permanent (in our case it will probably be permanent) visible badge, telling the world that she is not typical, that she is a “special needs kid.” Our hospital doesn’t usually allow babies to leave the NICU with an NG tube. So if we wanted to go home, we had to opt for the G-tube. I was sad. I was angry. I was upset that her neonatologist just wouldn’t give in and let us leave with the NG. She would get there. She would learn to eat. She would get stronger.
I cried on the phone with a dear friend who is a speech therapist. I clearly remember her saying “Suz, as a speech therapist, I would tell you, it’s not a big deal. It will help her. As your best friend, I will tell you that this is breaking my heart too.”
Turns out, other than loving this baby unconditionally, the G tube was the best thing we ever could have done for her. Lorelei has fattened up. She is thriving as much as any kid with a terminal illness can thrive. She is defying odds. She is able to eat and sleep at the same exact time. (Be honest, haven’t you always wanted to have that super power?!) While it has been a scary ride, we owe so much to this tube. Without it, I honestly do not think that Lorelei would be with us today.
So really, what is the purpose of this long blog post? I want to take this opportunity to tell you to ask questions! Let your kids ask questions. Staring, pointing and laughing has never educated anyone. It just makes things more scary and unknown… and is basically poking the Mama Bear.
Little kids are curious. And that’s okay. It’s actually outstanding! I can’t speak for all tubie moms, but I much prefer conversations about my daughter’s condition or tube. Don’t hush your children in line at Target, let them learn. Usually I just tell them that Lorelei simply eats differently than they do. And most of the time, kids are completely okay with that answer and think her pump is the coolest thing ever. (Adults are often the ones who seem to be freaked out.)
Yes, sure I wish my child could eat the same way I do. I wish she could enjoy tasting food. I wish I could use bibs for more than vomit or capes. I wish that we could do a traditional cake smash for her first birthday next week. For crying out loud, I’m a foodie-lifestyle blogger. Food is important to me! Eating is a social event. I’m sad it is something we miss out on. So while I am thankful for her tube, I’d be lying if I said there weren’t days that I didn’t resent the damn thing.
So there you have it! My real feelings on the feeding tube. My bittersweet, love and hate, emotional journey as a mom of a tubie. I would love to do a follow up post with any questions you may have! What do you want to know? No question is stupid! What can I tell you to help spread awareness and educate people on feeding tubes? Drop your questions below! Let’s make feeding tubes “less scary” together.