I don’t even know how to begin writing this update. I have sat here, staring at a blank screen, hoping that somehow the words would come easier. But the truth is, there is no easy way to say what I need to say. So I’ll just say it plainly, even though it tears me apart with every keystroke.

Emberleigh’s Hail Mary throw came up short.

Her tiny, fragile body has endured more than any child should ever have to endure, more than most adults could ever imagine. And now, we have reached the point that every parent dreads but few ever speak of out loud. The damage to her bowels was simply too great.

When the surgeons wheeled her back into the operating room this morning, we clung to the smallest shred of hope. We prayed harder than we’ve ever prayed before, asking God, begging the universe, pleading with anyone or anything that would listen for just one more miracle. For one more chance. For just a little more time with our sweet girl.

But in the first few minutes of surgery, Emberleigh nearly lost her fight right there on the table. Her tiny body, already battered from four other surgeries and countless medical interventions, simply couldn’t keep up. The doctors and surgeons worked with everything they had. They threw every tool, every skill, every ounce of knowledge they possessed into saving her. They cried with us. They held us. They broke down beside us. And that told us all we needed to know: they had fought for her just as fiercely as we had.

Still, the truth remains—the damage was too extensive. Emberleigh’s condition is now considered fatal.

Those words feel like knives carving into our hearts. Fatal. It feels so permanent, so crushing, so final. But even in that unbearable reality, we have chosen to focus on one thing—Emberleigh will not suffer. From this moment forward, she is on full comfort care. She is surrounded by love, by family, by warmth. She is comfortable. She is safe. She is not alone.

We don’t know how much time she has left. The doctors can’t give us a timeline, and honestly, I don’t know if I want one. Right now, all I know is that every breath she takes, every tiny movement of her fingers, every flutter of her eyelashes, is a gift. We are living minute by minute, second by second, soaking in every single moment we still have with her.

For now, she is still receiving medications—not because they will change her outcome, but because they will give us a little more time. Time for family members who live farther away to get here. Time for grandparents to hold her one more time. Time for aunts, uncles, and cousins to whisper their love into her ears. Time for us to memorize her face all over again.

When everyone has had their chance to say goodbye, we will begin to wean her off those medications. That will be the hardest step we’ve ever had to take, because it will mean we are letting go. But we refuse to let her final days be defined only by machines and wires. Once she’s weaned, with the help of the NICU staff, we are planning to break her out—yes, literally break her out of the NICU—for just a few minutes.

She deserves to see the outside world. She deserves to feel fresh air on her cheeks, to see the sunlight dancing across her skin, to breathe air that doesn’t smell like antiseptic and hospital halls. She deserves a glimpse of the world she fought so hard to stay in, even if only for a moment.

Words will never be enough to describe the pain of watching our child slowly decline after fighting so fiercely for so long. It is a suffering no parent should ever have to face. It’s not just the pain of loss—it’s the helplessness, the anger, the deep ache of knowing that no matter how much love we pour into her, we cannot fix what is broken.

And yet, even as her tiny body grows weaker, Emberleigh has left a mark on this world that will never fade. She has shown everyone who followed her journey what it means to fight with every ounce of your being. She has proven that even the smallest among us can blaze their own path. She has lived only weeks on this earth, but she has touched more hearts than some people do in decades.

We just wish her way was our way.

We wish her path was one that led home, to her crib, to her siblings who ask every day about their “baby Emmy.” We wish her way led to first steps, first words, birthdays, school days, laughter-filled holidays, and all the milestones parents dream about. Instead, her way is leading her towards peace, towards rest, towards a place where she won’t know pain anymore.

That reality is breaking us. We’ve begun the heartbreaking preparations that no parent ever wants to face. Hand molds, foot molds—tiny keepsakes to hold onto when her hands and feet are no longer here to hold. These are things no one should ever have to do, but they are all we can cling to as we face the inevitable.

We don’t know when the final update will come. It could be hours, it could be days. And when that time arrives, when our sweet Emberleigh takes her last breath, we will let the world know and begin planning how to celebrate the short but incredibly meaningful life she lived.

To the thousands of you who have prayed for her, who have lifted us up, who have carried us when we couldn’t carry ourselves—we are forever grateful. You gave us hope when we had none. You reminded us that we were not alone. And now, we ask for one final prayer: that Emberleigh’s remaining time is peaceful, that she feels nothing but love, that she slips away gently, cradled in the arms of her family and the God who made her.

Tonight, as I write this with tears blurring my vision, I look at my daughter lying beside me and realize something profound. Her life may be short, but it is not small. She has filled our hearts, our home, and this entire community with more love than we ever thought possible. And though saying goodbye will break us, we would do it all over again just for the privilege of being her parents.

So hold your children close tonight. Cherish every giggle, every tantrum, every hug, every “I love you.” Because life is fragile, and time is never promised. Emberleigh has taught us that. And in her honor, we will never take another moment for granted.

For now, we will keep holding her, kissing her, whispering our love into her ears, until the moment comes when she no longer needs our voices to know how deeply she is loved.