The new year comes with new beginnings and new chapters unfolding. It did for our family, just in a different kind of way. On January 2nd my eldest daughter was at Sick Kids (The Hospital for Sick Children) for our child’s pacemaker surgery – a scheduled replacement. I share this personal story not only as a reflection for my daughter’s future and reminder of her strength and perseverance, but also to offer insights to parents navigating similar situations, whether they have a cardiac child requiring a pacemaker surgery or not.
.
.
Background story – a child’s pacemaker surgery:
.
For context, before Sienna was born a prenatal ultrasound unveiled a large hold in her heart. The technical term was a VSD (ventricular septal defect). She needed heart surgery at 4 months of age to repair her heart. While we were told that a VSD is the ‘heart defect you want’ because it’s quite minor, the surgery wasn’t so simple. During the procedure, Sienna’s heart conduction system was damaged, necessitating a lifelong reliance on a pacemaker.
.
.
At the time, this was a huge deal for our family and a significant adjustment. Because on top of her cardiac issues, she also had a growth disorder called RSS. But in the years that passed, we almost forgot about the little computer in her tummy. It was a part of her and our regular life with little to no restrictions. She can do most things the average child can, aside from contact sports and other minor limitations (like avoiding close contact with magnets found in phones, tablets, headphones, etc).
.
It’s all felt pretty “normal” until weeks like this – when we found ourselves back in the hospital.
.
.
Before her pacemaker surgery:
.
Sienna’s pacemaker, designed to last 7-8 years, unexpectedly required emergency surgery at the age of 6 due to a broken lead. Fast forward to her recent surgery at the age of 10, merely four years later, prompted by a low battery. Instead of the anticipated New Year celebrations in the comfort of our PJs on January 2nd, we found ourselves at Sick Kids by 7 am. In the hours preceding the operation, her bravery was admirable as she skipped through the hospital hallway smiling, and engaged in a lighthearted game of UNO. In her words “I’m excited to get it over with, but nervous too“.
.
.
Her anxiety became palpable as she changed her into the hospital gown and moved to the OR waiting room. The doctors did an incredible job easing her concerns saying: “This is one of the easiest operations I do. In fact, I could do it with my eyes closed“. Sienna was terrified that she would wake up during the surgery, but the anesthesiologist comforted her: “I can bet my house and my family that you will not wake up. It’s never happened in 25 years so I can promise”. That instantly calmed Sienna.
.
When the time came to roll my daughter into the operation room, I managed to keep it together. Likely because we’ve been here before and knew we were in great hands. It also helped that Sienna was distracted swiping through photos of koala bears on the anesthesiologist’s phone (Sienna’s koala socks prompted the conversation about koalas and the doctor’s work in Australia at a koala hospital).
.
Knowing the operation was “simple” and would only take 1-2 hours, was comforting. Until it wasn’t.
.
Her pacemaker surgery continues:
.
During the surgery, I received a phone call from the nurse. Unfortunately, the leads in Sienna’s tummy (where her pacemaker has been for the past 10 years) were too old and couldn’t sustain another device. The medical team made the critical decision to relocate the pacemaker to Sienna’s shoulder area, extending the recovery period and imposing additional limitations.
.
The image below shows the leads that connected to the pacemaker when located in her abdomen.
.
.
As time passed, our stress levels escalated. Every 45 minutes or so I received a text message “The procedure is ongoing“. While I appreciated the updates, the lack of information left us wondering and worrying about all the worst scenarios. Then finally at 4:15pm (5 hours later) we received the following message: “The procedure is almost complete. The physician will be out shortly to speak to you in our waiting room.” I found reassurance when I saw the surgeon’s eyes (I could tell there was a smile behind her mask as she explained what had transpired). They successfully resolved certain complications, including some bleeding, and opted to keep Sienna under observation. The intricate procedure, particularly inserting the lead through her vein, contributed to the length of the surgery.
.
Bottom line: Sienna was fine. She was in good hands. The stress melted away.
.
.
The recovery process:
.
By 5pm we were invited to see Sienna as she slowly awoke from the heavy anesthesia. Though it broke our heart when she placed her hand on the front of her shoulder and asked: “did they move it?” She knew this was a possibility and that it would mean a longer recovery window (8 weeks). Not being able to lift her arm also meant no sports, no playing at the park – stuff that might seem small to us but means the world to a kid. We were ready to tackle it all together, and most importantly, Sienna was okay.
.
.
After enduring almost 12 hours without water, Sienna was dying for a drink. She begged for water, but we quickly learned that too much triggered nausea and vomiting (a result of all the drugs from the prolonged surgery). Even a few sips were pushing it, so we switched to ice chips and mini freezies for the evening.
.
.
Soon enough, Sienna had her own hospital room, with family and friends dropping by. She was low on energy, so visits were short but definitely appreciated. That night, I stayed with Sienna but hardly slept in those first few hours – worried about her getting sick or something going awry. She had a somewhat sound sleep until 3 am when the pain kicked in. Wanting me close, we spent the next few hours lounging on the same hospital bed, watching TV, and doling out Tylenol and Advil for the pain. At 5:30 am, we both finally crashed. I was over the moon waking up to a new nurse at 9:30 am – that uninterrupted 4-hour sleep was much needed.
.
.
Back home and grateful:
.
After an Xray and a few pacemaker tests, we were finally released and ready to go home. Today, 4 days later, Sienna is recovering slowly but surely. The wounds are still fresh and she’s still adjusting to a temporary shift in her lifestyle. But we are on the right track. I’m grateful for the doctor’s and nurses at Sick Kids, and for our family and friends who continue to support us on this journey. I’m especially proud of our little girl who is powering through, becoming more independent every day. This stuff isn’t easy for an adult. So it’s especially admirable to see children bravely navigate challenges and bounce back.
.
.
In sharing this journey, my hope is to provide insights for other parents and document a significant chapter in Sienna’s life — one marked by challenges, growth, and unwavering support.
What a thoughtful reflection and summary. Those “welcome home” signs made me tear up. Brave family! Hope the rest of the new year brings health and joy.
Thank you for sharing Danielle. So grateful to hear the Sienna is alright. Sending prayers and love to your sweet family.
Thank you so much for sharing Danielle. So glad to hear that Sienna is alright. Sending love and prayers to your sweet family.
Danielle what a lovely, well written story about your brave daughter, Sienna. 🥰
Sienna is so lucky to have you and Keith as parents❤️ and two wonderful sisters to help her along the way.
I couldn’t hold back my tears reading this; I had to ask dad get me another Kleenex.
What a brave strong girl and what a beautiful family 💕. So happy everything went well and wishing her a speedy recovery!
Danielle, beautifully written, a bit hard to read through my tears of joy😘
Sienna, you are the trooper we all aspire to.
You have the very best support team ever….
Family & Friends👍🏼
Lots of 💕💕💕
Uncle Angelo
An inspiring journey. Sienna is a beautiful, intelligent, caring and strong girl and has undergone many trials with strength, courage and positivity. Her care in this last hospital visit seems to have been outstanding. Sending her hugs and love as she heals and begins to get back to all the activities she loves. Wonderful and helpful blog.