Hello! What a year it has been. I’m going to recount the lead up to and recovery from my daughter’s open heart surgery which ended up happening toward the beginning of when the pandemic was declared. Jolie was only 7 months new.
Before I begin, I would like to acknowledge that I am writing this one year later, one year into this new normal, having just recently returned to work, face to face with how different everything is. As I prepare to write this, I can feel my emotions rising up to the surface remembering what life was like before Covid 19 changed all of our lives, and then through the lockdown and into our hospital experiences during that uncertain and sometimes terrifying time. I think that is the reason for why it has taken me this long to share this chapter of our story. Writing always helps. I’m ready now.
Starting the year off right: self-care.
In January of 2020, my son was in daycare 3 days a week, but I wasn’t getting the relief I’d had the first time around. I had to do SOMETHING. So, I bought a one-year membership to a recreational facility and started down my path of health and wellness. I joined stroller-fit parent groups so I could bring Jolie and she’d sleep while I got to break a sweat for the first time since labour. I met some parents and these classes became something I very much looked forward to not only for the fitness, but for the connection to the other parents and instructors. It became another village. Although I searched the faces of every babe and for the knowing looks in parents’ eyes, I quickly noticed that I was the only parent of a babe with DS. At first if I’m being honest, I might’ve been a little self-conscious; but I sat with that, not for too long, and I learned that I was ready to talk alllll about it. And so, with every share about Jolie’s diagnosis like every medicine ball I’d throw and pick up and repeat, I knew I was getting stronger and stronger in my mind as well as my body.
As February rolled in, whispers of some new virus were becoming louder. We would talk about it at gatherings. We would talk about it with family. We would talk about it during our laps at stroller-cise. After class, more and more of us would stay and share our concern, whether we should cancel our vacation plans, what was going to happen… but it was still this completely unimaginable thing. How little we knew then of how big a change was hovering.
March 5th, 2020. I had more often gone alone to Jolie’s cardiologist appointments because I was nursing which gave Jesse and Jules some much-loved father-son time. But this particular time, we went together while Jules stayed back with his grandparents. I believe I ended off around here in Part 2. This was when we were starting to notice that Jolie was struggling more, more irritable, sleeping more, and she just was not growing. With every visit since she was 2 weeks new, we were told the same thing: the holes are not closing, surgery is necessary, it’s just a matter of time. So for this appointment, we wanted to go together as a team and push that if her surgery was inevitable, we wanted to do it now and let her get back to just being a baby. We knew we would have support. Nobody had any idea what this Coronavirus thing would do and so to us, everything aligned and our concern for our daughter fueled our belief that this was the right time to do it. Her cardiologist fully agreed and made the recommendation for surgery.
We left the hospital feeling at once relieved that we’d made our case and advocated for our daughter, but we were also terrified and worried. We had just pushed for our little girl to undergo an incredibly intense and potentially dangerous procedure. I cried all the way home.
By this time, there wasn’t anyone who wasn’t talking about it. The coronavirus had arrived in Canada and was moving fast, but we still didn’t know what that meant.
Freezing moments in time.
March 9th. As it happened, our long-time friend and incredible photographer Megan Kemshead had got herself a studio space and wanted to promote it by doing sweet shoots with her friends. Photo credit is hers of these photos shared for this piece. Megan captured the essence and eclipsing beauty of Jolie Grace. I got to feel pretty special too, swapping joggers and bed-head for makeup and nice clothes! I even shined up my boots! I felt proud and strong and just so completely grateful for everyone in our village, to have a village. Megan photographed Jolie when she was only 5 weeks new and was there when I was balling my eyes out about expectations, crying together about circumstance and turning corners and emerging stronger than we thought possible. This shoot – mere days before her perfect body would be cut open by expert doctors who can fix hearts the size of strawberries – would freeze in time Jolie as she was: struggling to grow and do all the things babies do yet she was still happy and inquisitive and strong and determined to keep on truckin’ in spite and because of her heart.
And then the world stopped moving.
March 13th, 2020. The pandemic was announced. And with that, the whole world screeched to an unprecedented halt. From then on, announcements would be made daily, things were changing so fast. We had made the decision the day before to pull our son Jules out of daycare and by the time the weekend was over, we’d received the email stating its closure until further notice. The big hovering hunkered down.
Much to our surprise, this same day we got the call from the pediatric cardiology clinic at the Stollery wanting to book Jolie in for her surgery on March 24th. I was a little surprised since we were now all on lockdown, but they assured me that AHS wasn’t cancelling paediatric heart surgeries. So, I took a deep breath, confirmed the date, and wrote down all the information while trying to simultaneously shush the voice in my head which was terrified and whispering things I didn’t want to think about.
March 18th – We received the call that AHS had cancelled all elective and non-emergent heart surgeries, as well as in-person follow-up appointments until further notice. Our hearts sank. We didn’t know Jolie’s surgery was considered “elective”. I was gearing up for it, we all were, I felt like how an olympian might go through the mental and emotional preparations before competing.
Nothing is familiar.
From the time the surgery was scheduled and the lockdown was announced, to the moment it was cancelled and the reasons why, this was up there with the most intense emotional roller coasters I’d ever experienced. We began to realize that the support we’d envisioned having would no longer be possible. We were in lockdown and couldn’t see my parents who lived 10 blocks away. We couldn’t just drop Jules off for a few nights while we stayed with Jolie at the hospital. At that point we didn’t know that both of us actually couldn’t be at her bedside, only one of us. So how was this going to work? How were we supposed to pull that off? So many questions, rules, regulation, policy. Do masks work? Don’t they? Does this virus live on my groceries? How do I disinfect? Could Jolie catch it from the clothes one of us wore to the supermarket? Is she more susceptible to it because of her heart condition? How are we going to do ANY of this? When will we see our family again?
To distract, we busied ourselves with home renovations; learned how to chef it up fine-dining style; went “Live” on facebook often to try and connect with our friends who were all out of jobs and stuck at home. We discovered the city’s amazing trail system and visited nature reserves. We tried to get out as much as possible, while not going near anybody. With all the new “time” we had, we sure were more exhausted than we’d ever been! But the exhaustion wasn’t just due to spending every waking minute together with just each other with no reprieve, it was also due to the ever increasing worry we felt for our daughter.
Advocate. Advocate. Advocate.
Something changed, I just didn’t know what it was. She was behaving differently, like she was uncomfortable a lot of the time. She was tiring out like a newborn. Her breathing was louder. She didn’t love her jolly jumper as much. I emailed her cardiologist to advise and pretty well demand that she be seen. That was a Friday. We were seen on the following Monday for full echo and ECG. Our cardiologist doesn’t normally hang around while scans are being done, but she did this time and was on and off the phone with the heart surgeons team. It turns out something physical HAD changed in Jolie’s little heart. One side of her heart had grown larger than the other since her scan a month prior. It was getting harder to pump blood. This is one of the signs that her heart is beginning to fail. She was scheduled for emergency surgery that Friday.
The head nurse on duty from the paediatric cardiology unit came right then to debrief me on what to do, what to expect, how to prep, gave me pamphlets, went over the covid regulations. She then advised me that only 1 parent could be with our daughter and that because the recovery unit contained both peadiatric and adult patients due to making room for those with Covid19, parents were not permitted to stay the night. This was the biggest blow because I had never left her since she was born. The day of her surgery, in my most unrecognizable state of worry and sadness, I was beside myself and the head nurse on duty then was the most insensitive person I’d met at the hospital. She said that if I had a problem, I should talk to a social worker because she couldn’t help me. No compassion. Not even a shred of niceness.
“When this is over, she will thrive…”
April 24. That morning we arrived for in-patient prepping, we waited an especially long time to be brought up to surgery. It was the longest morning of my life. I was so grateful to Jesse’s folks for breaking the lockdown order and coming up to stay with Jesse and Jules while I was in hospital. We had cleared it with her medical team and looking back, their presence was integral. It was a difficult decision for us to invite them up from Red Deer considering my folks lived only blocks away, but at the time, we didn’t know much about this virus and my mother continued to work as a front-line worker at the grocery store. She was considered high-risk for us to be around. Jesse’s folks were retired and were fully locked down in their home. So, we made a choice. I know how hard it was for my folks to not be able to help us when that’s all they wanted to do. They were just as worried about Jolie as we were.
By the time Jolie and I were picked up and rolled together on a stretcher up to where she would be taken from my loving protective arms, it had been over 2 hours later than what we were told and I was sick to my stomach with hunger as much as resistance to what was about to happen. I remember Jolie laughing and smiling as we were rolled along, making meaningful connections with every set of eyes. I remember signing forms. I remember a wooden toy she was drawn to and I thought to myself “when this is over, she will thrive and develop exponentially” – almost like it was my mantra. I remember the surgeon introducing himself, reassuring me in a casual way, walking away behind doors I couldn’t enter. I remember the anesthesiologists coming to talk to me about the different methods they would use to put Jolie under, which one they would try first, how long it would take, what drugs they would administer, blur blur blur, tears running away from eyes fixed on the 7 month old bouncing on my lap. No hugs for the mother, but wet eyes and a genuine knee squeeze. And then “it’s time”, someone said, from a great distance, or so it seemed. I held my child close, kissed her beautiful perfect unscarred chest, whispered into her ear the depth of my love and of the inspiring strength she nurtures in me that I nurture in her, a circle. She smiled at me like she knew exactly what was going on and, with that, was gently taken from me and, looking over their shoulders at me, smiling, disappeared behind those doors I couldn’t enter. I couldn’t go there with her. It was the worst feeling I’d ever felt and I’m feeling it again as I type.
The rest of that morning I was a zombie, crying and running into restrooms to blow my nose in privacy so nobody would think I was sick. It was just snot from crying. Why were people looking at me like I was a monster? Perhaps I kind of resembled one – puffy red eyes, weighed down by bags and made blank by worry. I think I made my way to where Jolie would be brought for recovery. I asked where I would sleep since there was no bed or even chair in the room she was supposed to be recovering in. I found it strange nobody would give me a straight answer, that is until the head nurse came over to tell me I’m not allowed to stay with my child. I got on the horn with everyone I could think of who told me this would absolutely not happen, but in the end, it was AHS calling the shots and I had to abide. I didn’t even know at this point if my daughter had made it through her surgery. I felt absolutely helpless.
Just then, the kind anesthesiologist came to tell me the wonderful news that all had gone well and that Jolie was incredible and the procedure was as routine as routine can be. She said that their first easy technique for intravenous worked and she barely let out a cry. My own heart stopped and then gushed so hard I swear my pulse could be seen from across the room. I swapped out my terrified cry for an overjoyed one. But when they wheeled her passed me, the terrified cry came back… No one can prepare you for that. Seeing your little baby attached to countless tubes and wires and monitors, and seeing her tiny Frankenstein chest and her puffy face and limbs. It took my breath away. I was told she would be on heavy drugs for the duration of the day and night – they didn’t expect her to start to come around until well into the next morning as that is when they begin weaning her off the heavy drugs. I met her night nurse. She was like what I imagine Mother Theresa was like in comparison to the head nurse I’d encountered earlier. She eased all my worries with her compassion, care and gentle nature. After what she probably felt was like an interview, I was comfortable leaving my daughter in her capable hands. I was so deliriously tired. The best thing for both of us was for me to sleep while she was healing and resting in that deep unconscious state. So, I kissed her all over, and left to find my son and husband, and sleep.
Every day she got stronger.
It is absolutely unbelievable to us still that a baby can go in for open-heart surgery on a Friday morning and be home on a Monday afternoon. But these surgeons and their team truly are experts who save lives. We are forever grateful to Jolie’s amazing team who looked after her before, during and after surgery. 8 weeks post-op we went in for a follow-up scan, ecg, and consult and received the all-clear. She was totally fine, putting on weight, growing. They told us they didn’t want to see us for another year. Her energy was building and her development in all aspects began to increase exponentially. She was just waiting for her heart to be fixed before blooming into this amazing being who blows our minds every day.
Sure, it was difficult to be in lockdown, but it was also good in some ways for it gave us the focused time as a family to help Jolie heal, help her flourish, and to help us connect and grow as a family. We were lucky to have each other and we made the most special memories.