Owen was born on February 23, 2014 at 5:32 pm, after a healthy and uneventful full term pregnancy. He was 8 pounds, 7 ounces of pure joy, and we were over the moon in love with him. As new parents, we had no idea what to expect. Words really can’t describe the amount of love our hearts felt for him when we first saw his beautiful face. He was perfect.
We didn’t know anything was wrong with Owen’s heart before he was born. Right after birth, the nurse detected a heart murmur but assured us that lots of babies have murmurs. His hands and feet were slightly blue, but that is also common in newborns. He also had a weak cry and difficulty nursing. Honestly, none of these things worried us. We were in such a state of bliss. It was the happiest we had ever been in our entire lives. Our baby boy was here in our arms. After we were in the recovery room, the nurse noticed that Owen had shallow breathing. She suggested keeping an eye on him in the nursery while we slept that night. After a 38 hour labor, we took her up on her offer. I remember texting my mom that night that as tired as I was, I just couldn’t put him down or stop looking at him. My heart was so full.
The next morning around 7 am, the pediatrician came into our room and told us that Owen’s heart murmur was significant, and he would like the pediatric cardiologist to take a look at him. Again, we didn’t freak out. We were hopeful it would be nothing. The nurse brought Owen into our room and we had about an hour together before the cardiologist arrived. This was the most precious hour. We spent that time holding Owen, looking at his beautiful face, and just enjoying the moment.
When he was taken to the nursery for his echo, we decided to watch through the window. Minutes later, the cardiologist came out of the room and very seriously told us that “Owen has a severe heart defect and needs to go to Egleston.” My heart sank. The first words out of my mouth were, “What is Egleston?” He walked us back to our room and began drawing a picture of a normal heart, and then a picture of Owen’s heart. Owen’s diagnosis was Shone’s Complex which is less than .1% of all heart defects. He had a series of left sided heart defects (with a parachute mitral valve, unicuspid aortic valve (most people have a tricuspid aortic valve), critical aortic stenosis, coarctation of the aorta, PAPVR, and a very stiff left ventrical) that were not compatible with life without proper intervention. The amount of information we received was overwhelming. Our heads were spinning and we could hardly process the news. How was this possible? What did I do to cause this to happen to my baby? Is he going to be okay? When will we take him home?
Owen was air lifted to Egleston, and we met him there as soon as we could. Luckily, the hospital where I delivered discharged me early so I could go be with him. When we walked through the CICU doors at Egleston for the first time, we had no idea what to expect. It became our home for the next six weeks. We became so close with the staff that they began to feel like family members. They cared for and loved on our precious boy in the best way.
We were initially told that Owen was in the “gray zone.” Things could go really well or really poorly for him. He had a series of medical procedures that began on his second day of life. His first procedure was a balloon aortic valvuloplasty which he was intubated for. At two weeks old, he had his first heart surgery which was a coarctation repair, and at four weeks old, he had an open heart surgery where they performed the Ross Konno. Both surgeries were successful, however Owen had lots of complications. He was never able to be extubated from his initial intubation when he was just two days old. He went back and forth from a conventional ventilator to an oscillator. He also had kidney issues as a side effect and ended up having to be put on CVVH which is a form of dialysis. There were so many ups and downs. It felt like every time we took one step forward, we took five steps backward. The first time I held him again after leaving the hospital where I delivered was when he was 21 days old.
To say it was an emotional rollercoaster is an understatement. A week after his open heart surgery, Owen had to be put on ECMO which is a heart and lung machine. The goal was by doing so, it would give his heart and lungs a chance to rest. Owen’s last week of life was traumatic. He did not tolerate chest closure after his open heart surgery, so it remained open. It felt like his body was slowly shutting down.
On April 7th, 2014, Owen left this earth and entered his eternal home in heaven. We prayed for complete healing, and God answered that prayer, just not in the way we hoped he would. We don’t know why this happened to our sweet boy, but we do know that it was for a purpose. We continue to find out what that purpose is little by little. We are thankful for the 43 days we were able to spend with him. We look back on his life with joy. We are thankful for the memories we had with him. The hand squeezes he gave us, the eye contact, the kisses we gave him, his sweet smell, the sound of him sucking his paci… so many little things I hold dear and close to my heart.
We now have the joy of parenting his little sisters Hazel and Ellie. We talk about Owen with them and have pictures of him all around our house. God has provided so much healing to our broken hearts. There will always be an ache for him, but we are thankful for the hope of heaven where we will see him again.