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.
Can we talk about literally living at the hospital for a second.
Whether it’s one day or one thousand days. I almost feel like the shorter the stay the more likely the parent(s) / caregivers are to stay bedside, like literally bedside.
We were there for the better part of a year, and I did not leave Adam’s side.
I can count the amount of times I left the hospital on one hand. Once was for my childhood best friend’s wedding. Once was to meet Gordon Ramsay. Another time was to see Jim Cuddy from Blue Rodeo, once again to see Shania Twain, and my best friend dragged me out to go shopping (where I dragged back a mini Weber bbq toy for Adam - that was a fun walk back lol!)
Every time we did leave, someone else came to stay with Adam - my mom or my mother-in-law. They came to “babysit” so to speak. The nurses always used to laugh and say to me, you know you can leave him right - we’re right here, it’s essentially free babysitting. But no, we wouldn’t leave Adam if we were at home, so we didn’t want to leave him there.
As the weeks, and months went by, we became friends with some of Adam’s core nurses and they convinced me to go for lunch or go shopping with my best friend a bit more often (I hate wandering downtown anyways, so it was a big deal to get me out on a walk downtown on a good day!). We became comfortable leaving Adam with them, without a Grandma around the 5-6 month mark.
In fact, when I met Gordon Ramsay the nurses had to literally convince me to go. I’m SO glad that they did! I think that was one of the only times I ever left Adam without any family members and only the nurses.
Did/ do you stay bedside throughout your child’s stay?
Here are my reasons why I HAD to stay:
What if something happened and I wasn’t there?
This was never the case, thank God…. but still, you never know, and anxiety and catastrophic thinking is a huge bitch, especially when you live in a hospital and are exposed to codes every day.
What if Adam’s Surgeon came by for rounds, or a Fellow?
I NEEDED to be there for every single visit with Adam’s surgeon or the Surgical Fellows. I had to know what was going on 100% of the time.
Two words: Replogle Change
What if he choked, or stopped breathing… I had to be there. But also, it got to the point where I’d be telling the nurses Adam’s replogle needed to go down further - but an NP, Surgical Fellow, or Surgeon needed to do it. Adam’s replogle advanced so much, it became a joke with his Surgeon and I where he literally just told the nursing staff “Listen to Mum, if she says it has to go down, put it down!” - um, AMAZING! Obviously it was checked by an NP first, but we kind of got to bypass the “ask the Surgeon first” step!
…are amazing. I was ALWAYS there, so they were always disappointed they never got to spend time with the adorableness that was my chonky smiley boy. But I walked in from getting a coffee one time to a volunteer holding him - my heart broke. Like why does a STRANGER have to comfort my baby?!?! Was I not there when he cried?! Did he need me and someone I didn’t know have to step in?! The guilt was real.
Now the Volunteers are amazing for this reason! Especially with babies, if the family can’t be around for whatever reason, or they have another child or children at home that need them. They are so so amazing. I was just there ALL the time and it threw me off.
Tests. Scans. Procedures.
I needed to know what was happening 100% of the time. The nursing staff were directed to call me over night if something had to be done (it never did, Adam slept through all his diaper changes lol!)
However, in the NICU they do tests, scans, procedures whenever a Doctor or Specialist or Technician is available - 24/7. We couldn’t be there for those overnight, and it bothered me SO much. I barely slept. Especially since those first weeks in the NICU were to find out all of the details of Adam’s EA and the associated anomalies (which thank the Lord, every single test came back normal!)
As for the ICU - I stayed there LITERALLY ALL THE TIME. The only time I left was when Matt was in there and my Mom wanted to come in. We didn’t let anyone else in, except for Matt’s mom as well. Only two people were allowed at a time, so often it was me and someone else, and just me overnight.
Overnight at the ICU was terrible. They tell you that you can’t stay overnight. I told them to F* off. In fact, the convo was “you know technically you’re not supposed to stay here overnight” and my response was “technically I do not give a F*” ….she stopped bugging me after that - they knew I wasn’t going anywhere. I would have literally needed to be dragged out, it wasn't worth their struggle - I sat in the corner by Adam quietly *most of the time (but that's a different story altogether).
I slept on a chair. I had just bought a Canada Goose winter coat and joked that I had a nice duvet to cover me. It was Hell. The things that happen in that ICU in the day, seem to be worse at night. I witnessed things that no one, let alone a mother should ever be exposed to.
But I HAD to be there, especially then - when something, for the first time, actually could happen.
If you couldn't tell by me saying it 10x, I wasn't going anywhere. Theme of the blog. My personal choice, if you're comfortable with it then all the power to ya!
There are few things, when you do leave the room, that you should absolutely do.
Some of those tips include:
Long-term or short-term - How do you feel about staying bedside?
Have you? Would you? What would be your reasoning for each choice?
Drop a comment below, or on our Instagram post to carry on the discussion.
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