Wednesday, November 28th

Adam and I woke up at 4am as we had a check-in time of 5am. Our amazing friends offered to pack up most of our bags and bring them to the place we would be staying for the duration of our time in MSP.

At 5am we checked in and the process started. We met anesthesia around 6am, did lots of waiting, and around 6:30am they gave her Versed to get her pretty loopy. And wow… did it work. It was exactly the humor we needed to make it through the next 30 minutes.

Bless that pediatric anesthesia team. The Stibbe parents were a mess. I have to assume pediatric anesthesiologists receive extra training to deal with sobbing parents? Seeing her go through those doors just about did me in. We were able to walk with her to the doors and kiss her goodbye. My heart still lurches when I think about that final “goodbye.”

Adam and I couldn’t sit still for long, so we ended up walking over to a Starbucks across the street.

We got periodic updates that all was going to plan. About 11am we spoke with the cardiologists after the echo. The ASD, VSD, and mitral valve were all repaired. Closing had begun! The surgery took less than four hours.

At 12:30pm her surgeon came out. She was extubated! The amount of relief we felt in hearing those words is indescribable. Seeing a child intubated was something I could not go through again. We had been warned that some children with Down syndrome come off anesthesia pretty rough, so we were absolutely elated that she was doing so well.

Now we waited again… They would be transferring her to the CV ICU and the room needed to be set up.

In perfect timing, our friend had just dropped off our luggage in St. Paul and brought us lunch. We were so grateful for some delicious Davanni’s. Nothing like comfort food when you’re in the hospital!

Around 2:00pm we were told we could go see our girl. Upon entering I could only see her, eyes wide open and a single tear running down her cheek. She was obviously in pain and seeing her hooked up to so many wires and tubes brought back so many horrible memories. The charge nurse commented, “She has the most beautiful eyes I’ve ever seen” and I started to weep. I stroked her hair gently and listened half heartedly as the nurses explained what everything was. After a while they left, and we were alone. It lasted all of 3-4 minutes before they came back in to change something but it felt so good to be left alone with just Adam and Claire.

The rest of our day was filled with short conversations with the surgeon, trying to manage her blood pressure, and getting settled in our fish bowl of a hospital room. She was on a small amount of morphine and scheduled Tylenol.

Unfortunately, her blood pressure would not go down, even with increasing medication. The constant dings on the monitor that her pressures were too high gave us an incredible amount of anxiety. Surgeons want blood pressure to be low (systolic pressure in the 80-90 range). Claire was frequently in the 110’s which is normal, but needed to be lower as this ran the risk of the sutures ripping.

I wanted to stay with her that night, so after ordering in some food (many, many Thanks to those of you that gave us UberEats or similar gift cards), Adam left the hospital around 8:00pm. The night shift Nurse Practitioner decided around 11pm to put her on some Captopril and within about an hour her pressures were much lower. While I didn’t sleep much that night, I did sleep.

Around 5:45am Claire had an X-ray. Shortly thereafter she got super upset, looked around, and started to sit up. And so began our second day in the hospital.