Mighty Man

At 5:30 on Thursday our little man went for heart surgery. We found out on Wednesday that the Tylenol hadn't worked and that surgery was necessary. They told us that it would happen within the next two weeks but that Sick Kids was swamped. Thursday morning we got a call that they were transporting him ASAP. We soon found out that his procedure was scheduled for 8 am on Friday but that there had been some cancellations Thursday so he might have it done sooner. As the team at Mount Sinai prepared him for the tunnel walk to sick kids, dad made his way home and mom anxiously awaited his arrival on the other end. They settled us in and just told us to wait. Could be today or could be tomorrow. As the hours went by we were getting less and less hopeful it would happen. Even though mom was stressing about him needing it at all, once he was there we wanted it done ASAP so we could go back to Sinai. They told us if it didn't happen by 5 it was very unlikely to happen. Sure enough the call came in just after 5 and by 530 we kissed our little man and started our prayers. We had talked to a few other parents who had waited a few days after they were transferred so we were grateful to have moved along quickly. Those same parents also prepared us for the aftermath, shared their stories of what to expect. We sat, ate, laughed and prayed for Shea to watch over him and at 6:30 the doctor came out and told us it went okay "in the range of what is expected" was how he explained it. We were later told that the procedure had gone well and other than some muscle relaxation, he tolerated it okay. We saw him briefly before shift change and he was still heavily sedated and said that they would soon be starting morphine to try to keep him comfortable. He looked adorable and for the first time he didn't fight us with his strong hands and feet as we touched him. Shift change. We took this opportunity to run to Sinai and see Reilly who we had hardly seen all day. It felt like home at Sinai! Everyone was asking about Chase and was excited it was all done. His 3 amazing primaries were all there, so surprised he had gone and had the procedure already and were anxiously awaiting to hear how he was. It's so nice knowing our nurses care so much for our little ones, it's a great feeling.  We did Reilly's diaper change, gave her a sponge bath and headed back to Sick Kids. Chase was still sedated but doing well. They were doing an scan of his heart to see how it looked after the procedure. They explained that after 8-12 hours some babies can begin to deteriorate which can last upto 48 hrs but that SickKids was pioneering this program that allowed them to look at the post-op echo to predict whether or not he would "deteriorate". They did their scan and their calculations and felt that Chase's heart may need some help in the coming hours so they were going to start him on meds to hopefully prevent any deterioration from happening. It's amazing what they can do. With Chase fast asleep we decided to try to get a couple hours sleep so that we could be with him when he was awake and recovering. We made another stop to see Reilly on our way home and ran to bed.

Chase after his transfer to SickKids

Dad at Chase's bedside before surgery

Atrium at SickKids Hospital

When we arrived back Friday morning we were told that he had had a rough night, needed more pain meds and that he was having respiratory challenges. No matter how prepared you are, how many times they tell you to expect him to get worse before he gets better, it is still incredibly hard to watch. He seemed to be comfortable in the morning, keeping the nurses busy as usual but comfortable. As the day went on and as he started to wake up more he had a number of bad spells where his heart rate drops very low and he clenches down and stops breathing. Anytime anyone would touch him he would clamp up and they would have to manually bag him to maintain his breathing. There were a few STAT calls made on him where everyone just comes running and with so many people in such a tiny room for such a tiny person, it is impossible not to panic. We stayed as calm as could be and the doctors decided to try a different ventilation system and different pain meds and we saw improvement right away. He still hates being touched, and is still showing signs of pain, but he just had surgery so all these things are normal. We just have to keep reminding ourselves of that... Normal. It's so hard to watch him in pain though. They have little restraints on his wrists so he doesn't try to pull on anything when he's throwing his arms around. His nurse showed us how to hold him in the isolette to help comfort him and it seemed to help. We hold his head securely and then give him our hand and fingers to squeeze and sure enough he grips on tight and doesn't let go. At one point his knuckles were white because he was squeezing my finger so hard. It's the best feeling in the world when he grips on to you, like he knows we are there and doesn't want to let go. Melts my heart.


The docs came and told us that in terms of the procedure and his heart, they were happy. They told us that the behaviour he was showing now was a combination of recovery and his immature lungs. We had hoped the surgery would help his lungs, and we still hope that's the case but we know that the surgery was only a piece of the puzzle. We hope that his pain is under control this am, his oxygen is stable and that they will transfer him back beside his sister soon. It has been a crazy 48 hours for us, even more so for Chase, and now we are just going for comfortable babies for Christmas. Here are a few pictures from Chase's stay at SickKids. It is much different, only 4 or 5 babies to a room, quiet, dark, comfortable. At Sinai there are bright lights which are not good for premies, lots of people and commotion and upto 35 babies all in one room. With that being said, Sinai feels like home.

xo