Tonight, I find myself staring at this screen, struggling to find the right words—because there simply aren’t any that can capture the magnitude of what we’re experiencing. When your baby is this sick, there is no “right” way to explain it. There is only raw truth and unrelenting fear.
Brinley is still fighting for her life. She is intubated and battling a severe para-influenza infection that has overwhelmed her tiny body. Her lungs, no longer able to keep up, caused her oxygen levels to plummet dangerously low. Her body started holding onto carbon dioxide, turning her blood acidic, and she became exhausted in a way no baby should ever experience. It’s a kind of tired that goes beyond physical exhaustion—it’s a battle for survival. The machines are now breathing for her, giving her body a chance to rest, to heal, to keep fighting.
She has a central line. She has an arterial line. Every second, every breath, every number on the screen is being monitored, watched, analyzed. Brinley has extreme pulmonary hypertension, and because of how fragile she is, the doctors have made it clear: extubation isn’t even a conversation for at least 7 to 10 days—at the very least—and only if her body can tolerate it. There is no timeline for recovery. There are no promises. There is only careful, slow waiting, day by day.
And here’s the truth I’m struggling to say aloud: there are moments where the fear is unbearable.
Sitting beside your baby and watching a ventilator breathe for her is a sight no parent should ever have to endure. The alarms that go off without warning, each one causing your heart to stop before anyone even speaks. The words, “Everything depends on how her body responds,” echo in your mind, and you’re forced to face a fear that no parent should ever have to. It is the kind of fear that consumes you—the fear of losing your child.
Brinley still needs heart surgery. That part hasn’t changed. But everything about how and when that surgery will happen has shifted. Her surgery is now in an unforeseen phase. Before anything can even be planned, she will need a separate procedure to evaluate her heart function. Right now, her body is not strong enough to withstand surgery. We are in survival mode—focusing on keeping her alive, not on making plans for the future.
Outside this hospital room, life feels almost impossible to hold. Christmas is coming, but I don’t know how to deal with it. How can I think about trees, gifts, or joy when I’m praying my baby survives through the night? How do you celebrate when your world has come to a standstill in a PICU room filled with tubes, wires, and fear? This holiday season feels heavy and wrong, and that breaks my heart in ways I wasn’t prepared for.
And while all of this is happening, there’s another ache that I carry with me constantly—the ache for Blakely, our other daughter. She deserves magic, she deserves safety, she deserves normalcy. She deserves a Christmas that isn’t defined by hospital hallways and whispered phone calls. I worry about what she’s feeling, what she’s noticing, what she’s holding inside—emotions she doesn’t have words for yet. I’m trying my best to be strong for her, but truthfully, I’m barely holding myself together.
We are taking this hour by hour. Some moments feel hopeful—glimmers of light in the darkness. Other moments are terrifying, filled with dread, uncertainty, and the painful weight of fear. Every moment is heavy, but we hold on.
Please, keep praying for Brinley. Please keep believing with us that her little body can fight this battle. Please keep our family in your thoughts and prayers as we walk through something that no parent is ever truly prepared for.
I won’t lie—there are times when the fear overwhelms me, and I’m terrified that my baby might not make it. But I hold on to hope, and I hold on to love. We are doing everything we can for Brinley. We are not giving up on her.
Thank you to everyone who has loved our girls, who has supported us, and who has stood by our side during this darkest chapter. Your prayers and love mean more than words can say. We are incredibly grateful for every moment of support, for every prayer sent our way. In the midst of this heartache, it’s your love that gives us strength.
Please continue praying. We need it now more than ever. 💙🤍
