I sat in the hospital bed on a sunny March afternoon marveling at my newborn son, who made his surprise grand entry just a day and a half beforehand. Baby Samuel wasn’t due for four more weeks, but he (well, God actually) had other plans.
Samuel looked so peaceful sleeping in my arms. “He is absolutely perfect, and no one can tell me otherwise,” I thought in my head. I was envisioning the moment we would bring him home and wondered how his big brother Eli would react.
A knock interrupted my trance followed by an abrupt entrance from a woman I hadn’t met. I don’t remember her name or job title, but I vividly remember she had short, red hair, seemed out of breath and wore a look that uttered concern. In her shaky hands she held a piece of paper that appeared to have a heart diagram surrounded by words.
“Is your husband here?” She asked.
“He’s not.” I replied. “He just ran home to check on our older son. Is everything OK?”
“I think you need to get him on the phone right away.”
She could see the growing concern on my own face.
“We found something on your son’s echo, and he’ll need to be transported to Cook Children’s Hospital.”
In that moment, I recalled the pediatrician’s earlier comment on a murmur she heard while listening to Samuel’s heart. She ordered an echocardiogram just to make sure it wasn’t serious. Apparently it was very serious. I immediately called my husband Matt, who had just pulled into our driveway, and put him on speaker phone.
The woman explained how the echo detected a rare defect in Samuel’s heart called Double Inlet Left Ventricle, where his right ventricle was underdeveloped and wouldn’t be functional. She handed me the piece of paper which described the condition and said the staff needed to take Samuel right away to prepare him for the ambulance ride.
I kissed my son and set him in the bassinet, then nurses wheeled him away. One nurse informed me she would start on my discharge orders. I showered, changed clothes and packed my bag, all the while processing what I’d just learned – that my newborn son, in fact, wasn’t perfect.
Matt hurried back to the hospital. When we were alone in the room together, I remember crying, but I also remember an overwhelming sense of confusion. Samuel looked like a completely normal, healthy baby. Even at four weeks early, he was a hefty 7 lbs. 13 oz. He breathed well and was nursing almost effortlessly. Prenatal sonograms never detected a problem. Maybe there was a mistake?
About two hours after the news came, we got to see Samuel again – only this time he was in a giant rolling fish tank operated by a group of the nicest, most jolly paramedics I’ve ever met. They let us each hold Samuel one last time before his trek to Cook Children’s. I was discharged, and we followed the ambulance to the place we have come to know very, very well.
The next several days in the NICU at Cooks were a whirlwind of testing, meeting the doctors, hearing more information about Samuel’s condition, and so on. We learned Samuel would need three open heart surgeries in his lifetime but would otherwise be a pretty “normal kid.” The doctor said he probably shouldn’t play football, but this momma is OK with that order.
While some babies need surgery within the first week of life, we were relieved to hear the news that Samuel could manage without surgery for a while. Doctors even gave us hope that he might forgo the first surgery. We spent a total of 10 days in the NICU before doctors were confident it was safe to monitor Samuel from home.
On the last day, Samuel received another echo. I learned this was only his second echo. I prayed fervently that God would perform a miracle and show there was a mistake – that the doctors would see Samuel’s heart was actually perfect. God chose not to perform a miracle that day and reminded me to stay humble and trust Him.
In those first couple of weeks of Samuel’s life, I often found myself asking God, “Why?”
“Why did You make him this way? Why isn’t he perfect like all my friends’ babies? Why can’t I take the pain for him?”
Ultimately, I know why – because God writes the plans for our lives, not us. He has reasons that I may never understand. He purposefully knit Samuel together in my womb (Ps. 139:13), and His plans are perfect (Prov. 16:9).
As “perfect” as Samuel seemed in my arms that day, he was born into a fallen world where no body is perfect. In fact, no heart is perfect either. Only the one true God is perfect, and we must place our hope in Him no matter what life brings.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Ps. 73:26
Samuel’s name means “God heard,” a good reminder that He hears us and will not abandon us, even in the lowest valleys.
Precious written journal. All you said can apply to adults as well as your sweet Samuel, who we still pray for. You are special parents for him Eli.