Adri’s Story – Part 3: Surgery

*WARNING: THIS POST CONTAINS GRAPHIC MEDICAL IMAGES*. This post is Part 3 of my daughter’s journey with a Congenital Heart Defect. For Part 1: Birth and Diagnosis, click here. For Part 2: Before Surgery, click here.

After much scheduling and rescheduling the big day had finally arrived. We got to BC Children’s Hospital quite early in the morning – I believe around 6 am. We had been invited to participate in a long-term study (similar to this one) headed by Dr Miller that looked at the neurological outcomes of children born with a Congenital Heart Defect both before and after surgery. We agreed to participate, and this meant that Adri would have an MRI just before her surgery. We had some time together in the Day Care unit before it was time for her to go. We took one last family photo before I handed my 17 day old baby – bundled up and fast asleep – over to the staff who carried her in their arms away from me and into surgery. There is nothing harder than saying goodbye to your peacefully sleeping baby, your baby that you are just beginning to know, with no guarantee that she will survive this surgery that she needs to save her life.

We were very blessed to have a good friend who worked as a Cardiac Nurse and researcher at the hospital. After the staff had shown us to the family waiting room where we were anticipating spending the next 5-6 hours, Leslie came and found us. She tucked us away in a quiet, empty sedation room to give us a chance to rest. If only the sedation had come with it! Of course sleep eluded us, so after an hour or two of trying, we gave up and wandered first over to the cafeteria for some nibbles, and then back to the family waiting room. Leslie would come and check in on us regularly and bring updates as she was able to see what was happening in the OR via a monitor. This is what kept me sane. Most families simply are left to wait for the entire day, with no idea of whether things are proceeding well or not. We got regular updates so we knew things were going as well as could be expected, if not a little slower than scheduled. There are no words to express how much  we appreciated this extra care and attention. At long last the interminable day came to an end. We were told that Adri was being transferred to ICU, that her surgeon would come and talk to us and then we would be able to see her!  Dr Campbell, her surgeon told us that the surgery had gone very well, that there were no complications, but the next 36 hours were critical. Finally, approximately 10 hours after we said goodbye, we were allowed to go see our baby.

Despite the amazing work that the hospital staff do to walk you through and ready you for what happens before, during and after surgery, NOTHING can prepare you for the first time you see your baby after surgery. We rounded the corner in the ICU and there she was, laid out not moving at all amid an enormous web of wires, tubes, tape and stickers. With the first glimpse of my sweet baby, relief flooded me to see her alive, quickly replaced by shock. She was on muscle relaxants and still anesthetized so that she couldn’t pull anything out or hurt herself. She was on a ventilator, and had a feeding tube, although having just come out of surgery she couldn’t have anything in her stomach. She had various monitors attached to keep track of her vitals and IV’s to administer meds, among many other things that I can’t remember.  It was so unnatural, and so painful to imagine what she had been through and still had to endure. Up close, two things stood out in my mind. First was the large white bandage on her chest that covered her incision. Written on it in big reg letters were the words “OPEN STERNUM”. After the surgery they leave her chest open to make room for swelling. This makes logical sense, but the reality of my baby laying there with her chest still open shocked me. The second thing that stood out was a tiny teddy bear that had been tucked in beside her. The juxtaposition of this thoughtful gift against the harsh setting of my baby in ICU having just come out of surgery with massive hurdles still to overcome was my undoing.

I remember after the fact that so many of the staff we encountered remarked at how calm and collected we were. Looking back, I’m sure I was in shock. Totally numb and just navigating on autopilot trying to get through each moment and doing what needed to be done to give Adri the best chance of surviving. We were living for the next 36 hours, watching for the swelling to subside and guarding against any infection or other complication that could be life threatening at this most precarious time of recovery.

Read Adri’s Story – Part 4: Recovery here