I have to dedicate my post this week to my sweet boy. 10 years ago I became a heart mom. At 21 weeks we found out that we were going to have another sweet baby boy. But we also found out that his heart was not forming correctly and there may be other complications as well.
There is nothing that can prepare a new parent for this kind of news. And when you start on this journey, you have to lean into a strength you never knew existed. You lean into your spouse, your faith and all of your family and friends. And you hold your breath as they tell you what you can expect. Remember the book What to Expect When Your Expecting? Well, now you get a new book. And it doesn’t have all of the answers because each heart is different and it doesn’t have the outcomes, because each journey is unique.
I remember entering this new world and searching for babies and families to connect to. There wasn’t much that was positive, but there was plenty that was scary. I joined Carepages which was an online journaling service. Now people just use Facebook. But at the time, it was a way for us to update everyone on the progress, the diagnosis and the plan. And it was also a place where we could connect with other families and watch their journeys. I found a family that had a baby girl that was 18 months old. Her name was Bailey and I read her mom’s story every day. She had Heterotaxy Syndrome which is the syndrome my son has. Connor was born on May 8th and unexpectedly, due to complications and an infection, Bailey passed away on May 1st. I cannot explain this to you, but I sobbed uncontrollably. This was the news I had right before I delivered my son. And I was scared and unsure of every next step.
We had planned for his delivery and I went into everything armed with information. They told me not to read the internet, but it’s all I did! I read everything I could to prepare me for the new language I needed to speak fluently.
And on May 8th our beautiful son was born. On day 3 he was transported to Advocate Children’s Hospital in Oak Lawn. We had met with our surgeon and we had a plan. On day 4 Connor went in for surgery. And we held our breath for the first time. On day 12 he went back into surgery. He had some complications with his intestines and needed a GI surgery. And we held our breath again. And on day 20 we were released for the first time to go home.
20 days in the hospital. The days were filled with good and bad news. And all along the way we were just trying to process it all. I kept a journal of every single thing I could think to write down. And I asked a million questions. I would research everything they said to me. Luckily I was blessed with the ability to sleep sitting straight up and down in a chair and that is exactly what I did. They didn’t want the parents staying in the room. But I wasn’t leaving his side.
Somewhere in the early morning of the 2nd day post op from his open heart surgery his temperature was dropping. They came in and put a heat lamp on him and put socks on his feet. They were plain yellow hospital socks. I’m not sure what made me think of it or why I asked, but I asked the nurse if I could put the socks I brought for his going home outfit on his feet. They were cute and had an argyle print on them. My cousin gave me a set of 4 that were all different colors. And that began a little routine of changing his socks every day. I would sponge bathe him and put new socks on his feet every morning. And the nurses would come in and check under his blankets to see what cute socks he had on. I can’t really describe it, but it was a precious memory from a time that was very difficult for me. And I cherish that little bit of joy. This little boy wore only a diaper for his first 20 days. And now I had something sweet to hold onto each morning. A little bit of a routine in a not so routine time! In between all of the chaos and the beeping and the monitors and the spikes and falls, I had a little moment of joy.
I also remember wishing I had more hope in those early days. They tell you not to read the internet for a reason. The stats are scary and the terminology can send you into a tailspin. What I was searching for was something someone else could show me to let me know there was hope. In the halls of the hospital there were memorials. And you didn’t know they were memorials until you were pretty invested in reading it and then you realized, “Oh no, this isn’t a happy ending.” I learned that lesson pretty quickly. Don’t read the stories, they will break your heart.
I remember sitting and thinking, I will bring hope. Connor and I will bring hope after this journey. It was something I felt very compelled to do. And maybe I also did a little bargaining with God. I know, I know, it’s not what you are supposed to do. And it certainly isn’t something you are supposed to talk about, but I don’t know anyone who goes through this and doesn’t beg God. I begged. Of course I did. This was my son we were talking about. And I leaned into my faith and my husband to get me through it. And I also leaned into Connor. He was so strong. He spent most days smiling and filling my heart with hope!
And so here we are, 9 years post op. September 14th is Connor’s Heartiversary! And every year on this day we go back to the hospital and the Pediatric Surgical Heart Unit. And we bring care packages, balloons and the cutest little socks you’ve ever seen. And one by one, we meet the families that are in the PSHU and we bring hope. This year was AMAZING! These families were amazed by Connor and his health. A 10 year old boy who is tall and strong. He wore his baseball uniform with pride this year! And these mothers and fathers and I welled up with tears as we watched Connor give them care packages and balloons. My husband was beaming as well. He’s just not as expressive as I am. I wear my heart on my sleeve and tears streamed down my face for these families. And tears of joy for the absolute blessing we received!
So hope! We will spread hope each year on his Heartiversary. And we receive so very much in return. We hold each other tight and we celebrate this beautiful boys heart and his health. And we give thanks to our surgeons and nurses in the best way we know how! We pay it forward and spread hope through their halls!