The past twenty-four hours have tested us in ways words can’t describe. Doctors found a blood clot in Jax’s leg and started him on medication to dissolve it. He’s also battling ICU delirium and withdrawal, leaving him restless, hypersensitive, and struggling to find comfort. Watching him in pain breaks us—but then, he surprises us again.
Today, Jax gained weight—finally passing his birth weight. It may seem small, but for him, it’s huge. It’s proof that despite every setback, his tiny body refuses to give up.
Our boy is still fighting, still growing, still showing us what true strength looks like. Please keep praying for Jax—he needs every bit of love and faith right now.
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Life as the parent of a medically fragile child is a constant mix of fear, hope, heartbreak, and awe. Every day brings new challenges, new tests, and moments that leave you holding your breath, wondering what the next hour might bring. For our little fighter, Jax, the past twenty-four hours have been a stark reminder of both the fragility and the resilience of life.
Today, a significant medical concern arose. The team discovered a blood clot in Jax’s leg, prompting the removal of his arterial line. Immediately, he was started on heparin, a blood thinner designed to dissolve the clot and prevent further complications. The doctors reassured us that, fortunately, it’s unlikely to cause long-term issues at this stage of his development—he’s still so small, not yet moving around much, and his body is remarkably adaptable. Yet knowing our baby has faced yet another complication is hard to swallow. Each procedure, each intervention, carries weight—not just physically, but emotionally, for him and for all of us who love him.
As if that weren’t enough, Jax is also experiencing ICU delirium combined with withdrawal symptoms. These conditions make him extremely irritable, hypersensitive to touch, and visibly uncomfortable. Watching him struggle in this way—seeing the vibrant little soul we know and love become disoriented, frustrated, and in pain—is a kind of heartbreak that is difficult to put into words. There is a helplessness that comes with being unable to fully comfort or soothe him, despite being right by his side. Every whimper, every flinch, every tear pierces through the protective walls we try to build around ourselves.
And yet, amid these trials, there are moments of quiet triumph. Today, Jax achieved something remarkable: he gained weight. He is now officially over his birth weight—a milestone that may seem small to some, but in the context of his journey, it is monumental. That extra pound represents his body’s unwavering determination to heal, to grow, to fight against the odds stacked against him. It is a sign that despite the blood clot, the medications, the ICU delirium, and the endless interventions, his tiny body refuses to give up.
In the world of pediatric critical care, victories are measured in increments often invisible to the outside world. A gram gained, a moment of calm, a single stable reading—these are the wins that remind us why we never lose hope. Jax’s weight gain is more than just a number; it is proof that he is still fighting, still progressing, and still resilient in ways that astonish us every single day.
The journey feels, at times, like an endless cycle of getting knocked down only to rise again. But Jax’s determination is unmatched. His capacity to endure pain, discomfort, and uncertainty is a testament to the strength inherent in even the tiniest human beings. Time and time again, he reminds us that courage is not measured by size or age, but by the willingness to persist despite every setback.
As his parents, our hearts are stretched between worry and awe. We cry when he’s in pain, we pray when the monitors beep alarmingly, and we celebrate every small victory with unrestrained joy. We ask the world to hold him in their hearts, to send prayers, positive energy, and love, because right now, he needs every ounce of support we can muster—not just for his body, but for his spirit as well.
Through setbacks, through pain, through days that feel impossibly long, one truth remains: Jax is a fighter. Every breath he takes, every tiny gain he makes, every moment he perseveres is a testament to his strength and determination. And for us, witnessing his courage is both humbling and inspiring.
So we continue to stand beside him, to cheer for him quietly in the background, and to hold him close in our hearts. Every struggle is met with resilience. Every triumph, no matter how small, is celebrated as the miracle it truly is. Jax may be tiny, but his spirit is enormous—and with the prayers, love, and support surrounding him, we believe he will continue to fight, grow, and thrive.
Please keep sending your prayers, your love, and your positive thoughts. Our little warrior needs every bit of it right now—and with all of it, he continues to prove that even the smallest fighters can have the largest hearts. 💙