During the Super Bowl this year, SickKids Foundation released a commercial with a girl named Kaitlyn.
She is 24 years old and was diagnosed with a rare disorder called VACTERL Syndrome.
So this hits close. Real close. VACTERL is part of what Adam was born with. You can see the E stands for Esophageal. By the grace of God he had no other anomalies, and wasn't considered VACTERL. It's not usually like that though. Usually babies are born with more than one. It's extremely rare to just have the isolated esophageal atresia (gap). Seeing this young girl, so healthy, at her age, accomplishing so much, absolutely shakes me to my core. It's amazing. It just really hits me how... Lucky - it's not luck though, how blessed we really are.
The flashbacks, the fear, of being pregnant and not knowing the extent of Adam's condition. Every week going for ultrasounds, juggling life, work, so much anxiety. Every minute in the NICU having extensive tests done around the clock to rule every possiblity out. Dealing with genetics when they are surprised it's "only the EA" and are up our ass for more tests to figure out why, because it's so rare to have such an isolated outcome. Being told that even though this rare it's amazing but we're going to have to stay for a year.
Not knowing how this will affect our baby later on in life. Will he swallow? Will he eat? Will he be able to sit at the lunch table by himself with his friends? Go to play on time? Eat breakfast and go to hockey practice?
Seeing this beautiful girl, grown up, becoming a nurse, with so many VACTERL issues, what she's accomplishing, when Adam only HAD the one....
The absolute guilt I feel. How can I even compare. How do I have the right to talk about this when my son is the way that he is now? Perfectly normal, like it didn't even happen. When he's not suffering from any of the other VACRL anomalies or associations. When he is the small percentage that is ok from all of this.
Why am I advocating and raising awareness when he's fine. When it doesn't affect us anymore. It's done, move on, be grateful. There are still families that are suffering every day, with what Adam didn't have.
I see it as how, why, how come he didn't have any of that when everyone else does? Matt quickly reminds me to ask instead, 'how come he was born with anything at all?!'
This is what I suffer with.
This is why I do whatever I can to help other people. Because I am in a position to do so.
It's not a bragging right. It's not a debt owed. It's not holding onto the 'one moment my child was sick' as someone so nicely put once. Though my baby didn't have any associated issues, we lived at the hospital every day and every night for eight months. My pregnancy was traumatic and absolutely ruined from the moment I found out during the anatomy scan.
Living in fear every single day, no diagnosis, no understanding of the extent of my baby's condition. Not knowing when he was born how long we were going to be there for. All. Day. Every. Day. He didn't see the sun for months. He didn't feel the breeze. He was attached to a wall, through suction, so he wouldn't die. He was intubated, unable to move, on hard narcotics when he was less than a year old. Poison in his system to keep him alive. Crying with no sound, no tears. Complications with his lungs they deflated for the surgery. Fed through the tube through his stomach. Meds. Throwing up the smallest of pieces of mushed food.
Sitting with a teacher at day care, who made sure his food was cut up small enough, who made sure he had a drink after every bite.
Not knowing if I CAN have another baby because I know that I CAN'T go through more ultrasound appointments. I can't re-live that fear, anxiety, trauma that even the thought of paralyzes my body.
But somehow feeling guilty because of where we are now. Regardless of the pain of what we've been through. Others have it worse, so I'm not entitled to feel my pain.
This is what I struggle with.
*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.
(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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