Our story is a bit different from Jessica and her boys. If you want to skip to the crazy part where it got pulled out, scroll down to the blue writing…. It’ll make ya feel human.
When Adam arrived at SickKids he went straight into the NICU where he was getting nutrients from IVs at the time. It was a few days into our stay when we were told that Adam needed a G-Tube to survive.
We were told that because of the size of Adam’s stomach it was going to be a longer procedure, and more risky. This was the first time we were told that something terribly awful could happen. We were told that they could nick the liver, not be able to get it in because his stomach was so small (nothing had ever gone into it since there was no connection), and that he could potentially die of internal bleeding. He NEEDED this to live - we had no choice in the matter.
Let me tell you now, that G-Tube was a LIFE SAVER. It does not matter how scary it sounds, how stressed out, tired, exhausted, sore, drowsy, out of it you are… the G-Tube really is not scary. It’s amazing. So dang amazing. And trust me, for us it was really friggin scary.
So we went to IGT (Image Guided Therapy - where the do scans and X-Rays) ...(sidenote, even saying IGT is a huge trigger for me, omg, I feel my face getting flushed as I write this…. *breathe*) and we waited in that room for what felt like forever. In fact, it was much quicker than forever. We were told a procedure that takes on average a half hour, should take them 2 hours for Adam. It took only 45 minutes (!!!!!!!) and when the Doctor came out, he told us that it was one of the BEST and get this, the EASIEST he had ever done! (what the WHAT?!?!) I mean, ok?! This was actually the first time it was ever confirmed that Adam actually HAD a stomach.
Adam’s G-Tube was inserted. We were told that because his stomach was so small, they used a different tube than they usually do - one that has actually been discontinued (but could still be purchased at the Health store on the main level until they ran out of stock, but they shouldn’t because they don’t use them anymore). Cool. Whatever, as long as it worked.
Adam had this G-tube until the day of his surgery. It was a GODSEND. Let me tell you! It was how my boy got all of the amazing breast milk I spent most of my time pumping for him, and how he grew so big and so healthy. We never had a problem with the G-Tube, ever. Aside from it always being in the way because it just kind of hung down beside him, and out of his onesies. (He never wore pants, who needs pants anyway?)
At about our 4 month mark, the nurses encouraged us to feed Adam ourselves and we were taught how to use the pump machine, It seems hard at first, but it’s easy, I promise. Just calculating the time/ speed was frustrating, so have someone who can do math well figure that out, because I struggled with it (I struggle with ALL math, so there’s that). By the time we left we were G-Tube and pump PROS.
In fact, for Adam’s Bravery Beads, one thing we made sure to add every single day is how many times he was fed, because it was such a big deal to us. His Beads aren’t very colourful, but there are a ton of them, and every black bead for a feed means the world to us because it got him to where he is now.
Eating ANY thing ANY way is a HUGE deal for babies with EA. Trust me, if you’re an EA mom, I fucking get it, girl. It’s hard, it’s frustrating, it’s sad, but girl it is amazing. You’ll get there… your babe will get there…
After Adam’s surgery (which went longer than expected because of said G-Tube hole being too small and thus needing stretching to accommodate the new one) …Adam’s G-Tube got upgraded to the MIC-KEY button (a G-Tube that is more discrete, and sticks out less than an inch from the stomach, it's common for long-term G-Tube users). Having the MIC-KEY was even more amazing, because with it being so discrete he can wear shirts and onesies without this tube dangling everywhere, and it’s a lot harder to pull out….. Oh Lordy… I’ll get to that story…..
SO, we left with the MIC-KEY and armed with all the knowledge and experience of feeding Adam with the tube and the pump. We weren’t even home a week…. y’all… Adam’s Godparents were over for the first time (let me tell you his Godmother is an ICU RN herself, at a regular hospital)… My husband Matt was putting Adam in his crib when I hear “Uh, Kayla… ehehm… uh, can you come up here” …GUYS. I immediately knew something was wrong. Matt was lowering Adam into the crib and he hadn’t taken the extender out of the MIC-KEY so it was long again, and the extender was pinched between his jeans and the side of the crib, so when Matt lowered Adam into the crib IT GOT PULLED OUT.
Now listen here, the MIC-KEY is kept in by a balloon that you have to fill with sterile water and inflate it just on the other side of the belly so it like pushes up and keeps the G-tube in place. The balloon was INFLATED when it got pulled out. That big balloon got pulled through that tiny hole, oh my Lordy… there was screaming. From everyone. Mostly Adam… I called for Erica the RN to come upstairs, and bless her heart she had no idea what to do.
When you leave the Hospital, before they allow you to go home you HAVE to take a G-Tube course where they prepare you for shit like this. I specifically said I could NOT take it alone because there is no way in hell I’d be able to reinsert that thing or the catheter one during an emergent situation…. Jesus took the wheel y’all, because let me tell you how I went into some crazy Mama mode that I cannot even explain. I took that emergency catheter and measured it two fingers, stuck in that lubricant, counted out those mLs and inserted that bad boy in a minute flat. (Don’t kid yourself, I did panic and Facetime a nurse friend who knew what to do - but she didn’t even have to!) I did it all myself. It was CRAZY. It was INTENSE. and I am damn proud of that - seriously, it is one of my proudest moments.
Another story about this G-Tube… MAMA YOU OWN IT. That is your babe, this is their story and if anyone has ANYTHING to say about it, you tell them to fuck right off and mind their own. I was super testy about Adam’s G-Tube, we were still on a strict feeding schedule, so there was one time we were at the mall and I set up the stroller at a Handicapped reserved table, I needed the extra room for all of the supplies… but I was worried that someone would say something. Something about me being able-bodied, and me having to defend my reasons. Or people looking at us wondering “what was in that bag” or “where is that going?”, “why does that baby have that?”. I was so damn testy. I was SO mad. So on edge. So ready to FIGHT. Like actually lose my shit. My best friend was with me and had to tell me to calm down, because I swear I felt like everyone was watching - meanwhile no one cared, no one even noticed.
Finding clothes for the G-Tube was annoying. The MIC-KEY made it a lot easier, but the night time feeds were frustrating af. We were so excited to be able to put actual pajamas on our kid, but finding ones without zippers was a mission. Everyone says “omg get the ones with the zipper, they’re easier for diaper changes” Yeah, but they suck for tube feeding, thanks but fuck off. My mom had bought a bunch for Adam from The Children’s Place, but they were all zippered. We tried to return them but were denied, we were told we could only exchange them for ones in store, but they only had zippered ones in store. No no no… that wasn’t right, so like daughter like Mama, we pulled a Mega Karen and called head office and ripped them a new one. We went off about being non-inclusive and discriminatory to children with special needs. Let me tell you how we got all of those jams refunded for a full amount. Now we don’t shop there and never will.
The point is, the tube is amazing. There are some amazing resources and companies out there as well that make G-Tube pads to prevent rubbing, and an unbelievable local (GTA) Mama who started her own company to make the cutest bags for carrying your pump on the go. She takes the adorable SkipHop backpacks and turns them into Tubie2Go bags, so your little one can hang the sweetest lil animal bag off their stroller, or wear it on their back as they grow, so you can hide the pump & the liquid bag. Put the tube from the bag into the connector, and no one will even know. Not that there is ANYTHING wrong with it showing - because there is not, we should be PROUD of our tubies and how strong they are!!! But I mean, who doesn’t want a cute little backpack!? Tiffany, the Mama who started this company donates her proceeds back to SickKids as well - she has the sweetest little man, Magnus. That’s one of the best things about this experience, is the people I’ve met along the way!
Adam’s G-Tube was removed 14 months after he was born. It was one of the best days of my life. His surgeon asked if I wanted to remove it, lol nope. I watched as he did it. My husband was there, my best friend was there…. it was glorious. We just did it in the clinic room - Dr. Zani asked for a syringe and Matt pulled the EXACT one he needed out of his shorts - we came prepared lol! It was awesome.
I won’t lie though, we had to transition him with our team at SK (surgeon, NP, Dietician) before taking him off of the G-Tube. It stressed us out SO bad because it was also how we administered any Tylenol, any Motrin… hello teething! So we always had that as a backup. If Adam had a cold, we could sneak in extra liquids through the G-Tube so he wouldn’t get dehydrated, so learning to not rely on that was super hard. We needed to make sure he was getting enough food orally. It took a few months, and it was hard work, but it became second nature for Adam to eat “normally” with a lot of trial and error, and patience, and we haven’t looked back since.
Our G-Tube experiences have been positive. If you need someone to discuss anything, please feel free to reach out to me. We had our ups and we definitely had our downs and our challenges. I promise to be real with you, but I’ll also be the first to tell you that it’s going to be ok, you’re going to adapt, and you’re going to be thankful for it before you know it.
To navigate the BTB blog, you can scroll through the posts, or if you're looking for something specific - you can click on a category below & it will take you to related posts!