April 04, 2026
January 10. 1:43pm. Call from an unknown number. Declined.
I’m too busy to answer whoever that may be. I’m snuggling my perfect newborn baby and playing Barbies with my toddler. Life is good.
1:45pm. Zane’s phone rings from the same unknown number. Two minutes later.
With a sigh and an eyeroll, I tell him, “I guess if someone has both of our numbers, we should answer it.”
“Hello?”
“Hi. Is this the parent of Charlie Harper?”
“Yes?”
“This call is to inform you that Charlie’s newborn screening resulted in a concern. I need you to pack your bags and get him to St. Louis Children’s Hospital emergency room as soon as possible. The team there is waiting for you. You can ask them your questions, but I need you to hang up and go get on the road. If his diagnosis is confirmed, it is very serious and the prognosis will be poor without prompt medical intervention.”
I’m sorry. What?
Two minutes ago, I was on top of the world. Now the world is crushing down.
We said our emotional goodbyes to our sweet Abi girl, unable to answer her questions:
Where are you going, mommy and daddy?
How long will you be gone?
Why are you taking baby Charlie?
We had just gotten home from having Charlie the evening before. Her big sister duties that she was so proud of had just begun. She had already been away from us and from home for three days and now we’re leaving again. In an emotional panic that I’m sure even a three-year-old could feel.
Our back door felt like it weighed a thousand pounds when we opened it to leave. Everything in the universe felt still and heavy.
Truthfully, we weren’t even sure if we would ever carry him back in through that door.
On the drive to SLCH, we did exactly what we shouldn’t have done. Googled it.
We taught ourselves as much as we could stomach so we could somewhat prepare ourselves for what was to come.
Upon arriving at the ER, they were waiting for us just like we had been told. We were quickly escorted to a room, surrounded by nurses, and asked a million questions about every detail. How long does he eat for? How long does he sleep? Have you noticed anything abnormal?
But, what is normal? We wouldn’t know. At this point with our sweet Abi, she was still ventilated and we hadn’t heard her voice yet. In fact, at this point with Abi, Zane hadn’t even held her yet. To us, everything about Charlie felt normal. As we’re sitting in the corner of a tiny ER room, trying to setup a breast pump to relieve the built up pressure, I hear from outside the room, “we have a very sick patient in room 24”.
Man. Those parents must be worried sick. Dear God, please wrap them with your comforting arms.
I look up at our door to realize that we are, in fact, in room 24. They’re talking about us. My sweet, perfect, and seemingly healthy baby boy is now the very sick patient in room 24.
Meanwhile, the breast pump they bring me isn’t working. We change pumps. We assemble parts. All while breastmilk is leaking down my shirt and onto my jeans. The solution? A taped-on urine collection bag that will catch the milk while I hand expressed the other side. All while baby Charlie is being poked, hooked to monitors, and crying.
Next we’re handed a special can of formula and told, “here, you can feed him this”. Great. Is there a bottle? Water? Instructions on how to mix? Amount to give him? Anything?
Desperately seeking answers to questions we don’t even know, it’s finally time to move to our own special NICU room. We walked down the hospital hallways, following our baby being rolled in an incubator, one hand holding each other and the other holding the collection bag of spared milk.
We were greeted with a room full of people. Their lips were moving but I’m not sure I actually understood the words that were being said.
This room would be our home for the next two weeks. Two weeks of learning, asking questions, and meeting teams of people. Two weeks of being cared for by the greatest nurses. Two weeks of tears and little sleep, while questioning God’s plan and feeling the love surrounding us. All while longing to be home again as a family of four with big sister who we missed so much it hurt.
Two weeks living a nightmare we just couldn’t wake up from.
