My oldest child, Corah, had a feeding tube from the time she was 3 weeks old. For the first 13 months of her life, that meant that I was pumping my breasts every few hours to trickle my milk through a tiny tube in her nose. At least once a day, but often more than that, she would lace her chubby fingers through the tube and rip it out of her nostril. It never took me more than a second to stop the machine so that the milk wasn’t wasted. I would run and grab a clean yellow tube, give her a little milk from my breast directly for comfort and then quickly push that tube up her nose and down her throat. A fresh piece of Tegaderm to hold it in place and we were all good. The hardest part was catching up on the lost milk since she was on a continuous drip and couldn’t tolerate larger boluses.
When Jamie and I realized that this way of feeding her was not going away any time soon, we consented to having a more permanent tube placed into her stomach directly. It required surgery and we had it scheduled while she was already under anesthesia for another procedure. Still, it had been a difficult experience for us, and for her and we were prepared to do anything to avoid repeating it for as long as possible. The doctors explained that if the tube was removed for even just an hour, the stomach would begin to heal and need to be surgically opened up again. They gave me a kit to replace the “button” that allowed us to put the feeding tube directly into her stomach instead of the down the throat technique. Corah’s cheeks were raw from all the tape and we were over the process of causing her pain every single time it got pulled out. The new tube was harder to pull out but much more dramatic when it did happen. At least at first.
I was one of those baby wearing, extended breastfeeding type of moms with all three of my babies. Honestly, I just didn’t know any other way of mothering. They were happiest close to me and so that is what made me happiest too. But Corah’s tubey was hard to maneuver in a baby wrap. On good days, I could put the machine in a backpack and snake the long tube carrying milk through the straps of my Ergot and get her adjusted on my front with the bag on my back. I could feel her feeding tube button pressed against my own belly and we both felt safe and comfortable in that position. BUT our days were long and there was so many opportunities for it to get caught on something in that position and ripped out, so I often just strapped her into a stroller where I could have more control over that long snaking tube.
I pushed Corah in that stroller all over the city every single day. I technically had a drivers licence, but I wasn’t comfortable driving in the city. I never even attempted for the first few years that we lived here. My mom had held true to her word that she wouldn’t let me take driver’s ed, (I wrote about that here: https://redneckaidsorphansurvivor.home.blog/2023/01/25/coach-p-edophile/) and even though I learned after she died, I still wasn’t confident.
Jamie was working long days and often having to work out of town so Corah and I had our own little routine down. I would mix up the formula that WIC provided, and I would fill the feeding tube bag to the top so that we would have hours of mobility before we needed to head home and refill. I would strap Corah into one side of a double stroller and the feeding tube bag onto the other seat. Then we would walk miles around our city, walking from our apartment in the East End to her doctors’ offices in the West End. Then down to the playground to slide down the slides with tubey on my back. Sometimes, I would disconnect her from the tube long enough to swing in the baby swing untethered for a few minutes. After that we would walk down to the grocery store which was on our way home and fill up the space under the stroller with as much as I could physically push and walk the rest of the way home. It was great exercise and it worked for a few years, until it didn’t.
We pulled this routine off for a few weeks without any glitches until one day we had wandered down to check out a new yarn shop that I had heard about. It was down in the Old Port in a big warehouse type of building. The yarn store was down a flight of stairs and I realized that I couldn’t get the stroller through the door of the building so I got the backpack on and started unbuckling Corah from her side of the stroller. That is when I heard the dreaded Pop! of the button coming out of the hole in her stomach. I lifted her little shirt grateful that she didn’t have a onesie on and saw the milk gushing out through that opening. So much panic went through my head all at once. Too much milk was coming out! I started calculating. I had one hour before it started to close. I scooped her up into my arms and flew down those stairs.
I had never stepped foot inside this yarn store before and even if this wasn’t happening I would have felt out of place. The Old Port is a tourist attraction and a young low-income mom was hardly the target customer for a place like this. Still there was no time for shame. I threw the door open and laid Corah out on the rug while I scrambled to find the replacement kit for her button. I had never had to put one in but I understood the concept. The button itself is farely small about the size of a nickle in diameter but much fatter. There is a two inch long fat tube that you push into the hole in her stomach and then hold it in place so it doesn’t pop back out with one hand while drawing a syringe with 2 ml of water with the other hand to fill the balloon on the end of that tube inside her stomach to hold it in place so that it wouldn’t pop out again. All the while I was rambling to the very confused and frightened shop owner who was a middle aged white woman, trying to explain what was happening and why it had to happen right then on her rug. I was on foot so I couldn’t do this in my car or get home in a timely manner.
I am not sure if I was just so flustered or if I really did have the wrong size syringe, but either way, I just could not get the syringe to twist onto the appropriate spot to insert that 2mls of water into the balloon. I tried tirelessly for about 10 minutes before realizing the clock was ticking and I wasn’t going to succeed. I raced back up the steps with the milk still oozing out of Corah’s tummy and the backpack now thrown into the seat uselessly.
“Do you need me to call an ambulance?” I thought about that for a second but Corah and I had already had an ambulance ride before and this did not seem to necessitate that kind of a trip again. I knew I could get up to Rite AID or to another little medical center and find a syringe that would connect in the right spot. It was the same kind of syringe that the pharmacy will give you to administer liquid meds to a small child orally. It just has a slightly different tip. That was my best bet. I sprinted with that double stroller past the enormous cruise ship, past the coffee shop with the line of people waiting for muffins and lattes and past about a dozen bus stops that would have been helpful if I had ever taken the bus before. I was still such a country bumpkin. I hadn’t figured out how to navigate this city at all except on just my own two feet.
By the time I ran through the doors at the medical center, sweat was pouring down my face and I was panting for breath. It had taken me 10 minutes to get that far and so now I was down to 40 minutes until that hole closed.
“Please! Hi! Can you help me?” I pointed to Corah in the stroller, who without the feeding tube bag attached to her, just looked like a “normal” healthy toddler. She wasn’t in any pain so she wasn’t crying or anything. “She has a feeding tube and the button popped out and I can’t get it back in and I need a syringe to replace it and if I don’t get one right NOW it’s going to close up and it means another surgery! Please! All I need is a syringe!”
“Are you a patient here?” The receptionist was looking at me skeptically.
“No…But my daughter is a patient of Maine Med and I don’t have a car and I can’t get all the way there in time. Please! She’s a child! All I need is a syringe. I can do it myself. I just need the syringe. I’m not asking you do to do anything. Just give me the syringe!” I was clueless about the way that this woman was taking in the situation. To her, I just looked desperate and screaming about syringes.
“No. We can not be giving syringes out to just anybody off the street! What are you thinking coming in here like this?”
My jaw fell off of my face. I am really good at navigating my way through the medical world at this point, but back then, I was still too quick to rage. “WHAT?! IT’S FOR MY BABY! You know what? I don’t have time for this!” I ran out of there so fast when I realized that it was a dead end at best and worst case scenario, that receptionist was looking at me like she was about to call the police.
It was still ok. I walked these streets everyday. I knew that I could get to the hospital in time if I ran the whole way. I also knew there was a Rite AID. I bolted straight for the pharmacy. They were a little more understanding of the situation and also I had learned a little since the last attempt and came at it with a slightly calmer approach. They showed me the syringes that they had but they were all like the one I already had. None of them had the right tip.
There was only one thing left to do and that was to run from the East End of my city to the West End. I dialed the doctors office while maneuvering my way out of the heavy Rite AID doors. By the time I got through all of the beeps and” push 6 for this doctor” and “push 4 for that line… ” I was already one block closer.
Finally, I had a person on the phone. “Hey! Susan! Hi! It’s Corah’s mom! Yeah, I just pulled out her button. Well, actually it was like half an hour ago now, but I can’t get a new one back in, because I don’t have the right syringe and no one will give it to me and I am on the way to you right now!” I explained the whole thing while sprinting down main street with a massive stroller, panting and gasping between words.
“Ok. Calm down. Take a breath..”
“Susan! No! The doctors said her stomach can close in an HOUR! I DO NOT WANT TO HAVE ANOTHER SURGERY!”
“Ok. Ok. Well can you reach Jamie? Or call a cab so that you don’t have to run the whole way?”
“Jamie is working in New Hampshire today and No! I can’t call a cab. I have to get off the phone. I just have to go! We will be there soon. Please, be ready for us!” I was embarrassed to say that I had never called for a cab and didn’t know how and didn’t have the time to learn how to in that moment.
I was trying to focus on getting there and making my lungs work and not crying. I walked miles everyday but I hadn’t run for exercise in years. Plus, that double stroller was heavy to be pushing around. Sidewalks in my city are completely inaccessible and broken everywhere so trying to navigate with a wheelchair or a stroller is damn near impossible without a lot of jumping off the sidewalk and going on the road over broken places.
I ran and ran and somehow made it to the Pediatric Offices. Up the elevator and into the office without that precious skin healing closed. I finally wept as the nurse showed me the correct way to insert the tube myself. They made me do it instead of doing it for me so that I would feel confident the next time. All the while, Corah was ok. She was used to doctors offices and drama and nothing hurt so she wasn’t upset.
They let me sit and catch my breath for a few minutes in the room before I had to head back out for the long walk home. I got Corah’s machine all set up with clean formula and a new “tubey” button and let her nurse at my breast while the formula simultaneously trickled in through the tube in her stomach. One ml per minute. If we increased the rate, she would often throw up. She loved to nurse and would do it often, but could not get in enough that way because of the amount she needed due to her kidney disease.
A week later, the tube popped out in the grocery store. This time, I went to the bathroom and washed my hands. I pulled out the syringe that I kept in the front pocket of the backpack and I easily and quickly replaced the button. I did that procedure so many times over the next 6 years that I can’t possibly remember how many times or any details about those times. It became as second nature as changing a diaper or giving a bath.
She no longer has her “tubey” as she affectionaly came to call it when she was old enough to name it. We had it removed for the last time when she was in the first grade. We felt confident that we could push water orally and that she had proved that she could swallow pills instead of needing them to be administered through the tube.
We had a party to celebrate the end of the era. We had been reluctant to consent to the feeding tube in the beginning and reluctant to part with it when the time came in the end. It was such a big part of our lives. Such a big part of Corah. She has always processed through art and she made a card to honor the moment with the words, “Bye-Bye Tubey” scrawled across the inside. Inspired, I baked a chocolate cake with the words Good-Bye G-Tube” and let her cover it in rainbow sprinkles.
Now she is a teenager. There have been many more tubes and many more procedures. There is a beautiful scar on her stomach where tubey used to be. The hole in her stomach did heal up fast, but the outside skin is still scarred in a “second belly button.” She boldly shows it off in the summer, wearing bikinis that won’t cover it and she dreams of getting a tattoo someday, not to hide it, but to decorate it in her own way.