Angel Kaeden’s Journey: Finding Peace in Hope

Written by Mom, Abbey

Kaeden John Koester was born on 6/2/2020 in Omaha, Nebraska at 7:55 pm. At our 20-week anatomy scan, our doctor noticed something odd with his heart and referred us down to a specialist in Omaha. At Children’s the next day, we found out that Kaeden would be born with a congenital heart disease, hypoplastic left heart syndrome with a restrictive atrial septal defect. Our worlds were quickly turned upside down, going from the normal “no idea what we are doing-ness” of your first child to learning a completely new language (wait, what is HLHS, how many kids are dealing with this, etc.).

Kaeden’s first night was pretty eventful. After being delivered at Methodist Women’s Hospital, I was able to get some skin-to-skin time with him, something I am extremely thankful for as it would be a few weeks until I was able to hold him again. Kyle (dad) was able to baptize him due to the severity of his condition, and then he was quickly transported to Children’s for his first procedure. Due to the restrictive atrial septal defect, he would need a balloon procedure to open up that hole a little bit and allow more oxygenated blood to flow through. Kyle had followed the ambulance to Children’s and was able to see Kaeden in his room at about 3 am that morning. We knew we had a long road ahead from that night but were just thankful that the first procedure was done. 

I don’t brag much, but 18 hours after delivery, I was discharged from Methodist and was able to see Kaeden at Children’s. From there, Kyle and I would take on the “full-time” job of being our baby’s advocate. Kyle leaned into knowing everything that was going on medical-wise day to day, taking notes from every round, and trying to understand to the best of our ability what was happening with Kaeden’s care. I leaned into being a mom, reading books, holding Kaeden’s hand, telling him stories, and being there at his bedside as much as I could. 

Due to Kaeden’s condition and some setbacks during his time at Children’s, it was a long road for him, but we could tell he was a fighter. At 5 days old, he had started to swell up and the team was having a tough time with his blood pressure. We found out that he had Necrotizing enterocolitis and would need to go into surgery right away. This was our first of many long surgery days, but after a few days, Kaeden was on the right track again. Due to his condition though, Kaeden wasn’t a candidate for the normal Norwood surgery right away, and instead would have a band procedure done.

Kaeden seemed to be improving the next few weeks after the band procedure. We were able to hold him shortly after this, and got to witness the ways that he was just like any other kid (he hated diaper changes just as much as our one-year-old). We are so thankful for these days and the memories that were able to be made during this time.

Kaeden though would regress a few weeks later after a brief period trying to get him breathing on his own. He was having a tough time getting fluid off and at that time, it was decided that we would try the Norwood surgery to see him that would get him back on track. This was easily the longest day we had at Children’s, going into surgery at 6 AM and not seeing Kaeden until about 8 pm that night. The next few days were trending positive for Kaeden. He was getting fluid off of him again (the kid definitely fought) and things were trending in the right direction. However the stress on his body and kidneys from everything he had gone through added up and a little more than a week after surgery, he started trending the other way again. On August 31, 2020, Kaeden passed away after 91 days.

During these 91 days, the nurses became like family especially when Kyle and I couldn’t be together nor were our families able to visit in the hospital due to Covid. My sister and her family graciously opened their home and let us stay with her, for a comfortable place to spend our time while we weren’t at the hospital. We are forever grateful for her and other family and friends who came to visit, sent cards, or checked in with us.

We were grateful to have been introduced to Heart Heroes during this time. They sent Kaeden an awesome Heart Heroes cape and provided us with the Tote of Hope, a special surgery care kit item that helps get through hard days ahead. We were also able to connect with some other parents of Heart warriors who had gone through similar experiences. For us, that helped us to know that we weren’t alone on this journey. There were others out there who had been through those excruciatingly long surgery days and had experienced the ups and downs in the CCU. 

We are so grateful for the time that we were able to spend with Kaeden.  We know, in just 91 days, his journey impacted many lives of those around us. During our time at Children’s, we kept a Caring Bridge journaling Kaeden’s journey and would close each journal with a verse from the bible, as our faith was truly our rock each and every day in the CCU. One verse that still stands out to us is from Romans 5:3-5.

“More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:3-5

The peace that we have comes from our faith and our hope that we may get to heaven and see Kaeden again.