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.
Chapter One: Discharge:
When we were discharged from the hospital, I truly believed hospital life was over; we were now HOME so naturally I thought my life would now be a typical mat leave. When we got home, Theo was struggling to drink his fortified breast milk and when he consumed an adequate volume of milk, he would vomit more than he consumed. My days were consumed with trying to feed him to get the volumes of milk that he needed and administering medications every two hours. Needless to say, there was ZERO sleeping happening. Any time Theo would sleep for 2-3 hours, the slightest stir would make me jump to A) make sure he was a alive and B) just maybe this time, he was hungry and would drink his milk.
We were constantly between our family doctor’s office, our pediatrician and Sick Kids regarding Theo’s weight gain. I literally talked to his dietician and nurse practitioner weekly, and I always needed to provide the daily/weekly volumes of milk he was consuming. It was so stressful and exhausting; my world revolved around counting milliliters.
I hated feeding him, and I couldn’t bare the thought of leaving the house to experience some of the activities I had anticipated doing as a new mom as the times did not jive with his feeding schedule. Not to mention, I was only getting about maybe 2 hours of sleep a day….I was a mess. I was completely emotionally, physically and mentally exhausted. And when I did try to meet up with even the closest of friends, all the moms talked about was what their baby ate, how fast they were growing and how they were sleeping. I felt like no one understood my struggles.
Usually when I explained my hardship to friends, even the new mom friends I had made, they would try to talk about other things, but when you have a baby, all you talk about is baby stuff….which usually includes sleeping, eating, and growing. But when my baby was greatly struggling in all these areas, I felt like a complete failure. I began to isolate myself more and more and I hated leaving the house.
SIDENOTE: truth is, having a baby completely changes you but having a sick baby is something no one can prepare for and few people understand. The difference in people’s reactions and consideration of mine and my baby’s circumstance was not something I had anticipated. People who I thought would be there for me disappeared while others showed up with unimaginable support. I lost friends who I thought were like family, and unfortunately, I had to cut people out completely for my own well-being. I am a people pleaser by nature and hate confrontation so this change in my social network was an additional unneeded stress. I found an amazing therapist to help me through but what I wish I knew earlier was that I didn’t need to pretend I was okay when I wasn’t. I didn’t need to make an effort to stay connected to people who could not understand what I was going through. At the end of the day, not everyone in your life will provide you with the support that you need but there’s no shame in leaning heavily on the people that can.
Chapter Two: NG Tube (feeding tube that goes into the nose bringing milk directly to the stomach)
Feeding was very distressing for both me and Theo and he was not eating enough to gain weight at home. We were admitted back to Sick Kids for a week where we met with our team and the surgeon recommended an NG Tube as he was termed under the category of Failure to Thrive. Who the FFFF comes up with these names!? To me Failure to Thrive meant failure as a mom.
Simply put, NG tubes suck! The NG tube went in and we were taught how to manage it at home. Basically we would feed Theo his milk from a bottle orally and then add the remaining milk that he did not drink through the tube. Having an NG tube with a very active toddler was challenging to say the least. My husband and I would always be amazed at his abundance of energy despite his low calorie intake and lack of sleep! At one point we were even told not to let him go in his Jolly Jumper because he was burning too many calories!
Jokes aside, the NG Tube is a scary thing to live with. I knew it was only a matter of time before he pulled it out and I was terrified of him sleeping with it and getting it wrapped around his neck; this worry only exacerbated my difficulty sleeping at night. When we got home from the hospital the first thing I did was put a post on my Facebook page to see if any of the nurses I knew or friends or family had nurses that live near me that could help me put the NG tube back in if/when it came out. The hospital taught us how to put it back in but I knew I couldn’t do it on him myself.
So of course one week after being home with the NG tube, it came out. We had gone to a nurse’s house and she was absolutely amazing at comforting (me) and Theo and put the NG tube back in. But I was distraught. Theo hated the tube and was always trying to pull it out. My worries and anxiety continued to increase; why couldn’t my baby eat? People kept sending me ideas; “have you tried this? have you tried that…”, the suggestions became irritating - yes of course I’ve tried everything but nothing is working! The NG tube was short-lived as we were not comfortable with it and it was causing distress for all of us.
Chapter Three: G-Tube:
As mentioned above, despite our best efforts, the NG Tube was not working for our family. At Theo’s first birthday, the poor little guy only weighed 14 pounds. I had no idea at the time how incredibly small this was for a one-year-old. I had very little to compare to and he was still my perfect little baby. At this point, the G-tube was presented to us as the miracle solution to all our problems. It was explained to us that it may be our ultimate cure for helping Theo gain weight. Literally the day after his first birthday, he went in for G-tube surgery. Theo had been through so much and I was so worried that he was going to die during the procedure; it was absolutely terrifying but the procedure was actually pretty quick. We were extremely concerned about having a baby with a feeding tube but we felt confident that this was going to help him. Theo still at this point, did not sleep- like at all. I mean it was a good night if he did a three hour stretch at 14 months. We were assured that the G- tube should help fill up his belly, decrease reflux and indigestion, improve intake of his medication as it would go directly into his stomach and thus hopefully help with sleep. Well.... let’s just say the plan failed!
-SIDENOTE: I want to point out that Theo’s condition was extremely complicated. The more I talk about his story, I am in awe of how he survived the first year of his life. When we would go back to follow up clinics, our surgeon would see him and literally just smile at me and say “Jessica he’s a miracle”. In saying that, the details that I am providing is solely based on MY experience with feeding. Theo’ experience is not normal or typical but I’m writing about it so people have a better idea of what feeding will be like with a G-tube. Also, I think it is important to point out the ugly truth because I was completely oblivious to many of the challenges that arose and I think it’s important to be prepared so that if things do not go smoothly, you have tools to get through it. And you will get through it <3
Chapter Four: A G-Tube at Home:
Once we were home, a nurse came to the house to look at the bandage and change the gauze surrounding the G-tube. Unfortunately, we had another rare and inexcusable situation where the nurse cut a stitch that was not supposed to be cut yet as it was still holding the G-tube in place. Luckily, there was no damage done to Theo or his feeding tube but it was an ugly situation. I had the crisis intervention team over from the community support service known as the LHIN and I was livid beyond words (not to mention STILL NOT SLEEPING). We had gone through so much and had placed so much trust in the nurse looking after our baby and she totally messed up. Again, I felt like this was something that was my fault and I didn’t know how to advocate. In saying that, when the nurses come to your house, obviously you do not want to be argumentative, but you need to be strong and assertive. I wish I would’ve asked: how many times have you done this on a baby? Can you tell me what you’re doing step-by-step and why you’re doing it? What should I expect after you go? Who can I contact if X,Y or Z happens?
After this crisis was dealt with, we had a phenomenal nurse come to treat Theo and she ended up being our weekly nurse. You have a weekly nurse to assist with wound care as there is literally a hole on the outside of your child’s body that directly goes into their stomach. This wound, despite the best of efforts, can get infected and needs to be regularly seen by a health professional. She was phenomenal. She walked us through every step and told us everything she was doing and why she was doing it. She also reassured us that we were doing a good job in terms of taking care of his wound and this reassurance meant the world to me. When his wound would get gunky, as it often did, and sometimes infected, she would remind us that these things happen, it’s not our fault and these are things to do to help make it better. This nurse had a profound impact on easing my anxiety and providing thorough care for our family.
Below are videos that support G-Tube wound care:
Chapter Five: Supplies:
Getting a G-tube means needing a ton of supplies. There wasn’t much coverage for getting the necessary supplies and it was quite costly. We didn’t reach out for help but looking back on it, we probably should have. Financially, we were doing OK but when family and friends help out with financial medical costs it’s just one less burden to think about. The hospital will provide you with a list of items you need, the main ones being the pump, bags, gauze, tape and syringes. We were like dear in the highlights and bought everything. Don’t over do it, if you need more supplies, you can go back and get them ;)
Chapter Six: Tips for Living with a G-Tube:
-Ask for help! We trained our parents on how to use the tube. I originally thought they would be uncomfortable doing it but they were eager to learn and help. Remember the people that love you, want to help you, so let them. You can’t do this all alone, and it’s good to train your family on how to use the tube so they can support you. You’ll have training by the hospital and your family can also attend the training (pre-Covid).
- Once your child gets a G tube, you’ll be assigned a specific G-tube nurse from the hospital. BECOME BFFs with your G-tube nurse immediately – they will become your lifeline! They are super knowledgeable on the tube and can walk you through simple corrections that make huge improvements over the phone at home if something is off.
- How to use a G-tube: just like the NG Tube, Theo would eat what he could orally via a bottle and then we would top up the milk through the tube. The G-Tube allowed us to also feed him greater volumes of milk. We found that when Theo napped and was in an elevated position, he was less likely to have reflux. I would often go for a long walk with him in the morning and the afternoon (even in the winter) by connecting the G-tube bag with a safety pin to the side of our stroller. Also, if I was in transit, I would hook up the G-tube and again just use a safety pin to attach the bag to his car seat. (I would only feed him in the car if it was a short distance and I would never go on the highway in case he would vomit). Another option is to have them sitting in a high chair and have some finger foods they can play with. At approximately 16 months, Theo didn’t eat any solid food and drank very little milk. Like, I mean he didn’t even swallow a cheerio! We would have food in front of him and he would just play with it. For example, we would place food items such as vegetable sticks, French fries, pretzels...etc with dips for him to just play with and then slowly start to bring to his mouth. It was explained to us by our phenomenal Occupational Therapist that this was a huge step. Did you know there’s actually 20 steps to eating?! So having your baby just explore food is a huge step. As well, getting them to explore food while their G-tube is filling up their belly helps their brain to connect eating / hunger to the feeling of being full.
-Find an Occupational Therapist (OT) you work well with. At the beginning we had several different OT‘s checking in on Theo. I don’t know when or how it happened but one day an OT was sent to our house and it was like an angel came down from the heavens. I truly don’t think I could’ve gotten through my experience without her support. She played a vital role in Theo’s motor development and progression with eating. She taught me how to advocate for him and provided a variety of options and tools to get him to eventually learn to eat independently.
-Find a G-tube support group. When I first joined the G-tube support group on Facebook I felt such relief because people were posting their frustrations, victories and helpful ideas regarding using the tube and wound care. I no longer felt alone; I remember one particular post where a mom made a onesie with a G-tube cut out in it that said: Yes, I’ve tried that! And I thought YESSSS...these are my people...they get it!
-Something to hang your G-Tube bag on: one item that was essential for feeding Theo with a G-tube was a paper towel rack holder. When he was sitting in a high chair or sitting and playing with blocks for the floor, I used a paper towel holder to keep the bag elevated (the bag needs to be elevated to flow). Having a small paper towel holder was a great way to keep the bag elevated and was portable.
-Travelling with a G tube: The first time you leave your house will be extremely daunting even if it’s just for a walk or just to your parents house. MAKE A LIST! Write down everything you need to hook up a feed and have extra supplies of everything (except for the pump). With Theo, we did end up driving to a cottage that was four hours up north. The hospital was about 50 minutes from the cottage but I felt comfortable going as one of my closest friends was there and she is a nurse. A G-Tube can easily come out; if it does come out, the G-tube has to go back in the stoma (hole in the tummy) in a certain amount of time before the skin closes. When you’re trained on how to use the G-tube, they teach you how to insert it back into your child. Don't get me wrong, I love watching surgery shows but I am not a doctor or a nurse nor could I do something like that to my own kid. I got my friend to repeatedly watch the video on what to do if it came out and she felt comfortable that (God forbid it came out) while at the cottage she could secure it until we got to the hospital. We also travelled to the US with his G-Tube as I was in a very close friend's wedding. My husband, parents and friend who is a nurse were with us and having people who know and understand the tube was important in a new setting.
Chapter Seven: What To Do When the G-tube Comes Out:
Before knowing what our journey would be like with Theo, my world traveler Grandmother generously booked me, my sister, my mom and my aunt a trip to Paris for one week! Prior to having Theo, we knew he would be approximately 16 months at the time of the trip and it seemed totally manageable to be halfway around the world for one week. However, at the time of the trip, I felt like I couldn’t leave but my husband, dad and mother-in-law all assured me that they would all team up and hold down the fort while I was gone for the week. After all, I desperately needed the rest.
One night while I was FaceTiming with Theo, my hubby and dad, they were being really awkward on the phone. I thought it was just because they were exhausted from the around-the-clock-care Theo needed but when I got home, my hubby told Theo to show me the teddy bear he had gotten while I was away. I knew in seeing the teddy bear that Theo had been in an ambulance because he got the same one a couple of times prior. My hubby explained what happened as my mouth dropped open… Holy shit… His tube… Came out… While I was in fucking Paris!? I was consumed with guilt and completely shattered that I wasn’t there during this crisis but at the end of the day, it happened, it sucked and it was put back in and he was fine.
Sorry to say this but the G-Tube will probably come out. Prepare yourself; have a plan! We didn’t go ANYWHERE without Theo’s emergency kit and letter. The emergency kit is a temporary tube that replaces the proper G-Tube to keep the hole in the skin open. The letter contained specific instructions on how to place it in a toddler based on Theo’s specific anatomy. When Theo started preschool with his G-tube, we decided that if the tube came out at school, the school would call an ambulance and us immediately and then provide EMS with the emergency kit and letter. Once Theo was stable, either the ambulance or us would take him to Sick Kids (lucky we are only an hour away) to get a new tube properly placed. Being prepared for different scenarios brought us a lot of reassurance and reduced the guesswork in emergency situations. Of course, there is no plan for some situations but remember to stay calm, breathe and like everything else that you’ve gone through, you and your baby will get through this too.
SIDENOTE: I want to point out that Theo’s condition was extremely complicated. The more I talk about his story, I am in awe of how he survived the first year of his life. When we would go back to follow up clinics, our surgeon would see him and literally just smile at me and say “Jessica he’s a miracle”. In saying that, the details that I am providing is solely based on MY experience with feeding. Theo’ experience is not normal or typical but I’m writing about it so people have a better idea of what feeding will be like with a G-tube. Also, I think it is important to point out the ugly truth because I was completely oblivious to many of the challenges that arose and I think it’s important to be prepared so that if things do not go smoothly, you have tools to get through it. And you will get through it <3
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