KaylaMost of the time spent at a hospital, is time that you do not want to spend at a hospital. In fact, 100% of the time there, I could think of a million other places that I'd rather be. However, aside from the obvious moments of when your son's surgeon comes out after a successful procedure, or finding out your baby's esophagus grew a miraculous, unexplainable amount in a matter of weeks... there are still moments, and people that are worth remembering, and looking back on and smiling, These are our moments...  Our biggest moment, living in the hospital, was the very first time we were able to take Adam out of his room - the obs room. He needed constant observation, so we didn't even have a private room the majority of our stay. He also needed constant suction through his replogle to clear his secretions or he would choke. So he was always attached to the suction in the wall. We were however able to take mobile suction units and go for walks, or hang out on the hallway of our floor - with a nurse at first, and then without one (as long as we stayed on the floor). The first time we got to do this, was amazing. Seeing Adam see daylight for the first time, looking out the big windows, seeing the sun and the clouds, the cars and the people. It was amazing, It taught us that we should never take anything for granted, and to appreciate the little things, for they are big things. These moments, so simple, that everyone overlooks, were so monumental and big for us. A lesson that we will always remember, and often to this day still reflect upon.  Another moment that deserves mention, is many moments put into one. My two aunts would travel hours to come and visit Adam and I once a week, every single week, without fail, no matter the weather. They would bring lunch and just sit and visit, and chat. I'd cry, they'd force me to eat. They helped me survive. I am forever grateful and thankful for them. My Cousin worked down the road, and he too would visit weekly. It got to the point where he knew my pumping schedule and would grab me a cookie and a coffee, and come up when I was done to spend some time with me and Adam. Often sweating in his suit, he'd stay and visit. It was an easy decision for us to make him and his Fiancee Adam's Godparents. In this picture is that cousin and his fiancee (Adam's Godparents), his parents (my Godparents) and brother, as well as my parents and my brother. These are our people. This is what family looks like. The people who are there for you no matter what, no matter when. The people who show up the morning after you give birth, who wait outside the hospital during surgery and procedures. Who make you fresh sandwiches and drive them down on a Wednesday in the rain. Who take five different public transit vehicles to visit you. Who drag you out to eat and get you drunk on an entire pitcher of sangria, leaving you with the nurses who think it's hilarious and well deserved. This is our home team. We'd get together monthly, usually on the 13th (Adam was born on the 13th of April) and we would go to dinner, to celebrate another month down, another month closer to home. These are the people in our happy memories. The people who made our time there bearable, survivable. My other two aunts deserve the biggest mention in the world as well, because they visited more than anyone else, and I can never ever thank them enough. Our family is what got us through. I think of happy memories at the hospital, and I think of these people and these moments.
 Kayla mentioned, there is nothing more important than a support system when you’re living in a hospital. Like Kayla my family was a huge support system for me but so with the family in the bedside next to us. As I mentioned earlier, I became very close with the mom beside me in the NICU with Theo. Stephanie has been such an inspiration to me and a huge support in my life over the last 4 1/2 years. She always knows what to say, can make a joke even in the most difficult situations, and has the kindest heart. There were so many dark days in the NICU but there were also some positive memories. Here is a picture of one of our nurses holding our babies together. This was such a special moment for us because despite being so physically close together, we had never been side-by-side with our babies. It was so wonderful to have our babies side-by-side as it allowed us to do what so many new moms do together - take a picture of their babies side-by-side. Every time I see this picture I tear up and remember that magical moment.  Attached is a picture of us celebrating Canada Day in the 5B hallway at SickKids. It was a beautiful day and we are both so bummed about our situation and living in the hospital. I went out and got some cute Canada Day clothes for the babies and we had a blast taking family pictures. Another amazing memory is when the therapy clown would sing to us. When we were both in the 5B floor at SickKids, we’d make “play dates” where we would hold our babies at a particular time and the clown will come and sing to us. We had so much fun with the clown and it not only calmed the babies, but brought so much joy to us. We would joke all the time that Stephanie’s daughter Naya and Theo were boyfriend and girlfriend and the clown would play at their wedding. These moments may seem small and insignificant but these POSITIVE memories while living through the thick of it will last a lifetime.  Lastly one of my favorite memories of when Theo was in the hospital was the FIRST time I got to walk with him! Despite still being hooked up to many tubes and wires, with the help of our nurse, we carefully placed him in a baby carrier and I was able to stroll around the hospital and GO OUTSIDE - this was a HUGE sept for me as it allow me to really feel like a mom <3
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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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