It has been a while since our last update. To be honest, this is one of the hardest ones we’ve ever had to write. Words will never fully capture what it feels like to be a parent living hour by hour in the NICU, where every moment holds both fragile hope and unimaginable fear. But we will try.

Late last night, just after midnight, the medical team came to us with a decision: Emberleigh needed an exploratory abdominal surgery. She had been declining steadily, and they believed waiting longer would only make things worse. The doctors explained three possible outcomes.

The first: that only a section of her bowel was damaged and could be removed.
The second: that the entire bowel was dead, which would be essentially fatal.
The third: that her heart condition was placing strain on other organs, causing them to function improperly and creating a cascade of complications.

Each possibility carried risks. Surgery itself could take her from us, but not doing the surgery could do the same. The team emphasized that regardless, she would need surgery within the next 12 hours, and the sooner it was done, the better her chances.

Hearing those words was like being pushed off a cliff without a parachute. We were allowed to hold our daughter before the procedure, knowing deep down it might be the last time. We kissed her cheeks, breathed in her scent, and held her tighter than ever before. There is no way to prepare for a moment like that. A parent’s love collides with a parent’s greatest fear, and you’re left standing there, shattered, praying your child finds the strength to survive.

The surgery lasted through the night. Every minute stretched into eternity. But finally, the doctors came out: Emberleigh had made it through. They believed her heart was the main cause of strain, not widespread bowel death. For the first time in days, hope flickered inside us. After surgery, her color looked better. She seemed more stable. With antibiotics and careful monitoring, there was reason to believe she was on a path to healing.

Exhausted, we were given a room near the NICU — bigger than the stiff couch we had been crashing on. At 2:45 a.m., we lay down, bodies drained, finally able to exhale a little. For the first time in what felt like forever, we allowed ourselves to believe that maybe, just maybe, things were turning a corner.

But three hours later, a knock shattered that fragile peace.

A nurse practitioner stood in the doorway, her face grave. “There’s an emergency in Emberleigh’s room,” she said. “They want you to come now.”

No parent ever wants to hear those words. Our hearts sank as we sprinted back to the NICU. What we saw there is forever burned into our memories: more than ten doctors and nurses surrounding our tiny daughter. Machines beeped, voices barked orders, hands moved quickly and precisely. One of the staff told us quietly: Emberleigh had gone into cardiac arrest. They had gotten her pulse back, but moments later, she arrested again — this time while we stood there helpless, watching CPR being performed on our baby.

Time stopped. The world blurred. We couldn’t breathe. Watching someone pump your child’s chest, watching her small body motionless under the weight of so many tubes and wires — it is a kind of pain I don’t think words will ever fully convey.

Miraculously, they revived her again. But her condition remained fragile, “touch and go,” they said. For the next several hours, it was a constant battle: when they stabilized her potassium, her glucose would plummet. When they fixed the glucose, another number would spiral out of control. On and on it went, a terrifying balancing act where one slip could mean the end.

Eventually, she reached what they called a “relatively stable” state. But that word — “relative” — has never felt so heavy. It doesn’t mean safe. It doesn’t mean she’s out of the woods. It means she’s alive, for now, but everything could change in a heartbeat.

We have asked Hershey to consult again with DC Children’s Hospital after this episode, because we strongly believe Emberleigh needs every possible resource, every possible chance. We will not stop fighting for her.

I wish I could put into words what it felt like, standing there while our daughter’s heart stopped. I wish I could explain the fear, the devastation, the desperation that consumed us. But the truth is, no description will ever come close. It is a pain that lives inside your bones, that tears apart your soul.

Right now, we are running on no sleep, surviving only on adrenaline and love for our little girl. We are emotionally drained, but we write this update to let you all know where things stand. Emberleigh is still here. She is fighting harder than most adults could ever imagine. She is fragile, but she is fierce. And she needs every prayer, every thought, every ounce of love people can send her way.

Please keep Emberleigh in your hearts. Please hold our family in your thoughts. This journey has been heartbreaking, terrifying, and exhausting — but it has also shown us the incredible strength of our daughter, and the power of hope, even in the darkest hours.

Because as parents, we dream of nothing greater than this: to see her breathe, to hear her cry, to one day watch her laugh and grow. To see her live.

And so, we cling to hope. We cling to love. And we cling to the belief that this tiny warrior still has a story left to write.