Weekend Of Waiting

On Friday we met with Dr. Bichell, the surgeon who would perform Jace's Norwood procedure. He spent time with us going over the HLHS and what this surgery would consist of. He also discussed with us the next two surgeries and time frames for them. Jace will have the second surgery between 3-6 months and the final surgery sometime after 18 months. He told us that this first surgery was the worst but his success rate was about 85%. That made us feel good but it also made us worry about the other 15%. At this point we knew we had to leave it in God's hands. Dr. Bichell said the plan for the weekend was to keep Jace stable and as comfortable as possible. He would be his first case on Monday morning. Now all we would do was wait and pray.

As you can probably imagine that was one long weekend of worrying. I felt like everything was a blur. That was so much to take in at one time. I thought about the scene in the Wizard of Oz where Dorothy gets taken up in the tornado and is watching her life pass her by while she's spinning out of control. That's about the way I felt.

We had lots of visitors over the weekend and that helped to pass the time. On Sunday, we went to chapel service and that was very comforting. The pianist played Farther Along before the service started. As I listened to the song, I realized that God did have a plan for Jace and a reason we were having to go through this, but it might be awhile, if ever, before we would know what it was. That night Jamie and I stayed with Jace in his room but I don't think either of us slept much.


The Deciding Day

Jace was scheduled for surgery at 7:00 a.m. on Monday morning. Taylor arrived early so we could spend some time with him as a family. This was very hard on her. She was so excited to have a baby brother and this was not what she had expected. She was a trooper through it all though.

When they came to get him they told us that we could ride down in the elevator with them. When the doors opened we had to say goodbye to him. I think this is the hardest thing I have ever had to do. No parent wants to think about the possibility of losing their child and this was what we were facing. This was the part that was so hard on Taylor. We had to turn and go one way and Jace went the other. She was so upset that we had to wait outside the doors to the waiting room for awhile to give her time to recover. I think that helped Jamie and I to not fall apart because we knew we had to be strong for her.

The waiting room was full of our family and friends. It helped so much having everyone there with us. I got several calls from people at school and that helped to pass the time. My pastor's wife, Ann, told me something that day that gave me great peace with the surgery. She told me that one way or the other Jace would be healed that day. She was so right. Either the surgery would help to repair his heart or he would have a new heart in heaven.

They called around 8:20 to let us know that they had made the incision and everything was going well so far and they would call back around 10:00. When they called back they said he was on the by-pass machine and everything was going fine. Sometime after 12:00 they called back and said he was off the by-pass machine and they were starting to close up and he was doing great. You can imagine what a relief that was to hear. Around 2:00 the surgery was completed and he was in recovery. Dr. Bichell came out and told us that everything had gone well and we would be able to see him in an hour or so but to expect some swelling when we saw him. At that point I didn't care how he looked as long as I knew he was going to be alright.

When we were finally able to see him we were really surprised at how well he looked. He wasn't nearly as swollen as what we were expecting. We were just so happy to get to see him. They told us that the next 48 hours would be crucial for him. For the next 48 hours I don't think we left his room much. There was only one chair that would make a bed so I slept in it and Jamie slept in the waiting room. The night before surgery he slept in Jace's room on the floor. It only took one night of that for him to figure out he couldn't do that anymore. We were fortunate enough to have a room at the Ronald McDonald House but we didn't want to leave Jace at this point. He was in the Pediatric Intensive Care Unit (PICU) with his own nurse but we still didn't want to leave him.

The next 48 hours went extremely well. He did excellent. His nurses bragged on how well he was doing. We were so thankful he was recovering so well and making progress.