Xena’s Story
Xena was perfectly healthy at her 20-week anatomy scan—just a strong heartbeat and a baby we couldn’t wait to meet. At 38 weeks, she was breech, so we tried to turn her. When that didn’t work, we scheduled a C-section for the following week.
Right before surgery, we saw her one last time on ultrasound. Everything looked fine.
Seconds after she was born, everything changed. Xena wasn’t breathing. (read more)
Instead of going home with our newborn after a short hospital stay, we entered a journey that would keep her in the ICU for 10 months. We transferred hospitals—twice—hoping for answers. What we found was how hard we would have to fight just to be heard. When we spoke calmly, we were overlooked. When we pushed harder, we were questioned. At one point, CPS was even called—simply because we wouldn’t stop advocating for our daughter.
We learned quickly that in this world, parents often have to become the loudest voice in the room.
Today, Xena lives with multiple complex medical conditions, many still without clear answers. Her care is constant—trach changes, suctioning, medications, therapies—day and night. There’s no simple routine, just constant adjusting and problem-solving as things change.
She doesn’t love any of it—but she’s strong-willed and lets us know. And still, she keeps fighting.
Through months of therapy, she’s gone from being completely stiff to lifting her arms, stretching, and working toward sitting on her own. Every small gain feels like a huge victory.
The financial side has been overwhelming too—equipment, supplies, therapies—much of it not covered. We’ve had to figure things out as we go, like so many families do, often just missing the cutoff for support.
But through all of it, Xena is joyful.
She is strong. She is determined.
And every single day, she shows us what resilience really looks like.
-Sally Straumfjord