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*trigger warning - very sensitive topic for me, so there is profanity in this post. Just keepin' it real. Whether it's bad timing (for real, it's ALL bad timing) or whether you're there for a long-term stay like we were... there's no worse place to be to celebrate anything remotely fun or joyous... however, SickKids for one is really amazing at keeping every single holiday spirit alive. I feel like they have a list of random holidays and even celebrate those ones too, like National Book Day or something. As for the bigger holidays and events, no one ever wants to be there for that. We missed a ton of holidays when we lived there for ¾ of a year. Starting with Easter, Mother's Day, Father's Day, Canada Day, both long weekends, Thanksgiving (which was the hardest for us), & finally Halloween. Thankfully, we were home just in time for Christmas.  The Ronald McDonald House does the most amazing things for parents during these special days. Both Mother's Day and Father's Day we were greeted with a bag of goodies that were donated by different families and companies. It was a great pick-me-up! Very much appreciated! As for spending so many days at the hospital… I'll be real with you, it fucking sucked. We missed out on Summer BBQs, cottage nights, bonfire drinks and laughs… Thanksgiving hurt the most because it's the beginning of the holiday season - all the big cozy family get together ones. We stayed with Adam while our families got together and had the most delicious meals and laughs, with cousins joking and football games on tv (ROLL TIDE!). We opted out from celebrating Thanksgiving at all - my parents offered to cook and bring it to us, but we wanted nothing to do with it. Out of sight out of mind. We made it just another day. It sucked so bad. As for Halloween…. Hah. Spooky, terrifying, haunting… all a gross understatement. October 30 was the last day we were in the CCU. After a miraculous conversation and fiiiiinally an extubation, Adam was given the go ahead to go back upstairs and back "home" to 5B. When we arrived that night, I finally felt that I could relax. That for the first time in what felt like forever, we were in the clear, we were safe… we were on our way to going home!!!!!!!! We had our nurses back, familiar faces, the happiest of greetings seeing Adam had a successful surgery and missing his sweet face for a few weeks… It wasn't all rainbows and butterflies though. Every single person tried to convince me to go back to RMH (I literally LIVED bed side in the CUU) ...I know, gross - didn't leave to eat or shower… I know, I know… but when you're watching your healthy baby now hooked up to a machine breathing for him, I literally could not leave his side. So I stayed the night in 5B. I'll keep an already long story somewhat short, but that night around 1 or 2am ...after NUMEROUS times of me BEGGING our not-so-favourite nurse to change Adam's NG tube tapes….she didn't. Adam pulled it out. Keep in mind throughout his entire CCU stay they literally had signs over his bed, our 5B Fellows would come in daily to make sure NO ONE TOUCHED OR MOVED THE NG. It was acting like a stent so that his repaired esophagus could HEAL properly. If it was moved or touched it could tear his anastomosis (Lord, there's a trigger word) ...it means it could tear his repair, the surgery would be pretty much useless if it unattached because of the removal or movement of the NG, as it was left in place for his esophagus to heal around it. Adam's surgeon wanted it in as long as possible to make sure everything was perfectly healed, it was to be removed a few days before we went home, so like a month - NOT 15 days. So I closed my eyes for literally 5 seconds (honest to God, the first time I "relaxed" in WEEKS, finally feeling safe back on 5B…. to open them to Adam laughing with something in his hand. Groggy and confused af, I think to myself "umm he pulled out his replogle…. Omg he doesn't have a replogle anymore… his NG!!!! THATS HIS F&*$# NG OMG!!!!!" Guys, I screamed so damn loud… I lost my shit. Total understatement. I absolutely just lost it all. I'm talking like screaming, crying, panic attack, full blown ugly cry, shaking, not breathing… panic beyond panic. A friggin CCU nurse was dedicated to making sure Adam's head and this damn NG tube DID NOT MOVE A MILLIMETER…. and now it's in his hand. He pulled the whole thing out up through his esophagus and out of his nose. Jesus take the wheel! I thought I was going to pass out. I told the nurse numerous times she NEEDED to redo his tapes because it was waaaayy too loose and not secure. She said she'd do it. I swear I asked her a hundred times. I feel asleep for 30 seconds, she went on break, ignored my request AND THIS HAPPENED. Y'all I lost it. When I came back to, after nearly passing out… the panic was so dang strong still, but the RAGE. Thank goodness one of our fave nurses ever was there to calm me down. She assured me that it happens all the time. She sat with me and really just helped me not get escorted out for kicking the shit out of the other nurse that night. I told you, lots of swears. I'm sorry but this night and what happened literally haunts my nightmares. Thinking that everything we just went through, the literal HELL that was the CCU, and now because someone screwed up something so simple - it all could have been for nothing, and the worst part was, he'd need another surgery, another intubation, more sedation.... it was honestly the worst case scenario now that we were past the surgery and clear of infection. Anyway, Matt was at RMH because he went back to sleep… SOMEHOW before all of this NG drama happened, when he left an hour earlier he knew I was in a terrible place and he called my parents who graciously got up and drove an hour+ after midnight to be with me… by the time I caught my breath, I called my mama and BLESSSSSS them - they were in the SickKids parking lot. So after it all happened my parents were there 30 seconds later, not even knowing the shit that just went down. Talk about good timing eh. SO HALLOWEEN. (btw, not many people know that story, and it was therapeutic af to write all of that out and get it into the open. Cause Lord, it has been weighing on my soul keeping some of these experiences in. Even though I can now laugh at it… these memories haunt me, daily. Here's to hoping releasing them causes some peace).  Halloween… in the morning (after I spoke to Adam's surgeon who assured me everything was fine, thank Godddd!!!) ….we dressed Adam up as a lil sushi. My parents and brother took us for all you can east sushi before Adam's surgery and we probably ate thousands of dollars worth of food lol, so for some reason I decided to dress my kid as a sushi for halloween. Don't ask - I don't know why lmao. But I literally hand sewed on felt in the shape of salmon and added a lil wasabi, and Adam was having none of it. The first day of this kid's life tube free, he was wearing a hand sewed sushi costume for Halloween. Not a super hero. Not a doctor. A sushi. Lol. We're not even Japanese ...we just really like eating sushi.  He was super cute though!!!
This pic is actually really hard for us to look at. Most of the time, actually ALL of our time on 5B Adam ONLY had a foot monitor (standard for every patient) attached to him. So to see him with those ...I don't even know what to call them, ports? needles? dangly poke things.... and even worse is seeing him STILL so drugged up on hard narcotics (he was being weened off of morphine and things I can't even begin to guess how to spell) ....I see it in his eyes, he wasn't fully back to himself yet. It breaks my heart. It really is so hard for me to share these images). But yeah, what I'm saying, is that you can make the best of being there. The nurses dress up, the atrium has activities, Child Life comes by with treats and gifts - they really do make every single event or holiday memorable (hah! was it ever!!!) ... whether you decide to participate or not. …..hey, do you think there's a Bravery Bead for that?
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The beads behind the blog The day your baby gets settled into the NICU, they are given a few Bravery Beads to hang from their crib. They start with an admittance bead, and your babes name. You can collect the beads for every procedure, poke, event, diagnosis, test, visit, wow moments, and pretty much anything else that happens. The beads are so much more than beads. Their meaning goes way beyond the beads. They symbolize Bravery. They symbolize every obstacle these babies and children go through or overcome. The sizes, shapes, colours, & pictures on them, all have meaning beyond just a bead. There are so many different options, and each child's strand tells their specific story. It's a timeline of their story. Adam's beads reflect his journey perfectly. We have his strand from the NICU where we documented all of his tests - every single part of his little body was tested and they all came back normal. When he got his G-Tube, we documented and collected beads for every time he peed and pooped - because for the first time ever it meant that his stomach was filling and everything was working as it was supposed to be, and there were no associated anomalies or issues.  We have a video from us taking our final bead in the NICU. To us, that discharge bead meant so much, but we had no idea about the very different journey that was ahead of us… Adam's beads look the way that they do because they are an exact representation of his time spent on 5B. There aren't many colours, not a lot going on… but there are a lot of them. We collected beads for every flush or suction of his replogle, clearly some days had more than others. He has beads for every time his feed was connected and he got the milk I spent so much time pumping for him to grow big and strong. It was very calculated - every amount, every time. We collected beads for every replogle change, every time an OT or Child Life visited, every injection, and every holiday we missed while we were there. My favourite ones are Adam's Gap Study beads. Each Gap Study bead is followed by a WOW bead and an Unusual Occurrence bead. Because every single Gap Study he had, his esophagus continued to grow, and his replogle went down further than expected.  We stopped collecting them the night before Adam's surgery. He had one IV put in, and the last one we put on was his surgery bead. There was no way we were able to keep up with the chaos we lived through in the ICU. To be honest, I'm not even sure if I want to see them. I know I can't even remember everything… nor do I really want to. I've blocked so much of it out, I don't know how I'd feel about a physical constant reminder of it. We also didn't continue Adam's beads when we got back up to 5B post-op until discharge. There was a night where he got poked what felt like a million times as someone came from literally every separate unit of the hospital to try and put in an IV. Adam's beads tell his story, and our story. Maybe we'll go back and add his clinic visits and G-Tube removal… for now, they're perfect just the way they are - displayed proudly in his room, with his NICU ones on his Hudson Bear. |
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