Today has had some ups and downs. The first 24 hours since we found out about Stephen’s condition were a whirlwind. He was transferred to Children’s Hospital much quicker than anticipated and put right on the schedule for the surgery. We were so happy that things were moving quickly because that meant he would get to come home sooner!

Once we got to Children’s, there was a lot of waiting by his bedside, not being able to hold or comfort him. That has been the hardest part.

They took him in for surgery around 2pm and it was over pretty quickly. They came and told us at 4pm that we could see him in an hour. Everything went perfectly! We were so so relieved. Unfortunately before we could see him, his heart rate dropped suddenly and they had to do chest compressions to get him stable. This happened several times as they tried to figure it out. My mind was reeling at this point, and I was in a very dark place. It was honestly the worst I have ever felt in my entire life. I prayed and prayed that his luck up to this point had not suddenly run out. But it was difficult to even breathe and I felt like my own heart was literally breaking.

They opened him back up and everything looked right. So they were really not sure. Turns out his blood was clotting and filling up the new valve that they put in. It is EXTREMELY rare for this to happen (he is maybe the 5th child out of thousands that they’ve worked on). But thank God they knew how to fix it and were able to rather quickly. Instead of putting in a plastic vein, they used his own tiny veins from his right arm to re-route the blood. We are not out of the woods yet. We hope that during the episode, enough oxygen was getting to his brain. For now our sweet baby is sedated, but stable and doing well.

Thanks to everyone for all the encouragement and support. This has been so difficult but we are taking it minute by minute. We will keep updating as much as we can.