If you missed Part 1 or Part 2 of our CHD Journey, be sure to check them out!

Welcome to Part 3 of our CHD Journey! In Part 2, we left off with a diagnosis, FINALLY! Jack had been diagnosed with a Right Aortic Arch with Complete Vascular Ring and Left Subclavian Artery.
That’s a whole lot of words to basically say that his Aorta was facing the wrong way and had created a ring, encapsulating his trachea and esophagus, essentially restricting airflow. This is why Jack had experienced the “wheezy breathing” every year when it would get cold. His trachea was already inflamed from being constricted, combined with the frigid Colorado air and increase in elevation, and since it is cold here from about October through March/April, that is why his symptoms never really let up during that time period each year.

We met with the Pediatric Cardiovascular Surgeon in December and were comforted to know that while uncomfortable, it was not yet life threatening. They recommended waiting till after “Cold and Flu Season” to minimize the risk of secondary infections from getting sick. We had a great plan for moving forward over the next few months and planned for surgery April/May 2020.

Now our goal, was to keep Jack as healthy as possible until his surgery and to begin preparing him mentally and emotionally for what was going to happen. If you know Jack, he is VERY inquisitive and he had been with us in our appointments with the Pediatric Cardiovascular Surgeon so naturally he started asking us questions. Until the beginning of March, we kept the conversation really basic and told him that his heart had an owie and the doctor was going to fix it.

Around the beginning of March, we started reading some books that the Child Life Specialist at the hospital had recommended, to help him become informed and comfortable about the surgery. I’ll link the books that were recommended to us at the end of the post.

We decided for Spring Break/Jack’s Birthday that year, that we were going to go to Texas and visit family. So, on March 11, 2020 we packed up the car and made our way to Texas. I know what you are thinking….the world changed in March 2020, and you would be correct.

We drove to Texas on March 11, thinking, “Oh wow, look what’s happening in Seattle! This is nuts. It’ll pass over and calm down in a few days.” On our road trip there, everything was normal. Gas stations and restaurants were open, no restrictions, but lots of chatter. As we made our way back home to Colorado on March 20, we knew we were living in a VERY VERY different time. Coronavirus was spreading rapidly, restaurants were closed for indoor dining, schools were closing and you guessed it, hospitals cancelling everything that wasn’t directly related to Covid-19.

We were now living in a world where words like “social distancing” and “toilet paper hoarding” were part of daily vocabulary. Another phrase that I never expected to her was when the hospital called to let us know that “all non-essential surgeries were being cancelled until at least June.”

Just as everything else, Jack’s preschool closed for the remainder of the school year. This major change combined with the heart surgery that we had been preparing Jack for, really had an effect on Jack mentally and emotionally. If you know Jack, you know that he has never, EVER met a stranger in his life. He has the biggest heart and will start a conversation up with anyone and everyone. So, for him to no longer be able to go to school or church to see friends, was devastating for him.

In a matter of a few weeks, my normally very bubbly, excited, encouraging 4 year old, became anxious to the point of having panic attacks, angry and frustrated. I didn’t blame him, we all felt those big feelings in some way or another, but as a Mom, my heart was so broken for him and it wasn’t something I could fix. We had many days where we sat together and cried, because that was really all we could do.

At the beginning of May, I called the Pediatric Cardiovascular Surgery Clinic and was able to find out that the tentative plan was to begin scheduling surgery at the beginning of June. We were still at what was really the beginning of the pandemic and things were changing on a daily basis, so they wouldn’t have an exact date until the end of the month. They also made sure to inform us, that anyone in contact with Jack wasn’t allowed to travel by plane for 6 weeks before or after his surgery. This meant that instead of my mom flying out to stay with Korben while Jack was in the hospital for his surgery, she would now have to drive.

At the beginning of June, the hospital called and said surgery was scheduled for June 19! Again, you’d think I’d have a different reaction, but with the world going insane because of Covid and so much unknown, I was relieved to finally have a surgery date.

His surgery would be at the Children’s Hospital in Denver. We were both allowed to be at his surgery and in his room during the day, but because of Covid, only one of us was allowed to stay with him at night. We got a hotel room across the street from the hospital and our plan was for me to be with Jack during the day and Sean to stay with him at night. Sean is a total night owl and I am NOT, so this worked to our favor.

The surgery would take between 4 and 6 hours. The whole prep team was just wonderful. The Child Life Specialist met us in the pre-surgery area and played with Jack, the doctor came in and walked us through the surgery and told us the specific parts that would be the most difficult. We were able to stay with Jack until it was time to take him back. I was super worried that he would get anxious going back to the operating room by himself, but they gave him a little “relaxation cocktail” about 10 minutes before it was time to go back and he was so loopy, I don’t think he knew what planet he was on. The nurse asked if he wanted to walk back and he just held up his arms and said, “carry me.”

There were two tricky/risky parts of the surgery that the doctor shared with us. The first was seeing how tight the vascular ring had become around the trachea and esophagus to determine if further intervention would need to be made to repair the trachea or esophagus. The second was the left subclavian artery because it would need to be relocated and was providing a majority of the blood flow to his left arm.

We knew the surgery was the best option for Jack long-term. We knew that we had a wonderful surgeon and more than anything, we knew that we served a God who had already gone before us to prepare the way for this surgery. So as they wheeled the one that made me a Mama back to the operating room, I fully and completely turned him over to the Lord.

I’ll be sharing the Part 4, the final part of our CHD story this weekend! Below I’m linking several books that we read with Jack about staying in the hospital and open heart surgery. I am also including several great books that we have read and used with him over the past two years as we have helped him navigate worry and anxiety.