💛 Jax’s Journey — A Tiny Fighter, A Big Step Forward 💛
There are moments in this long, exhausting hospital journey when hope feels like a fragile flame — flickering but never gone.
And then, once in a while, there comes a day like this one.
A day when the news is good.
A day when the light feels a little warmer, the air a little easier to breathe.
Because today, baby Jax made a huge step forward.
🌤 The First Real Hope in a Long Time
For months now, the days have looked the same — the steady hum of machines, the soft glow of monitors, and the endless rhythm of nurses checking numbers, fluids, and lines.
Jax’s tiny body has been through so much more than most adults could handle.
He’s lived almost his entire life in the hospital, relying on TPN — intravenous nutrition that bypasses his stomach entirely — to keep him alive.
It’s kept him stable, but it’s also a double-edged sword.
TPN saves lives, but it can be harsh on fragile organs, especially the liver and kidneys.
And so, every day, his parents prayed for one thing: that one day, Jax would be strong enough to tolerate his feeds.
That his little belly would finally accept milk.
That his body would do what every parent hopes for when their child is born — simply eat, grow, and thrive.
And today, he did.
🍼 19ml an Hour — And Counting
When the nurse read the numbers out loud, his mom felt her breath catch.
“Jax is up to 19ml an hour.”
It might sound small — just a few tiny drops at a time — but in this world, it’s monumental.
Every two hours, they increase his feeds by another 2ml, slowly teaching his body how to handle nourishment again.
If all goes well, tonight he’ll be off TPN completely — for the first time in his short life.
No more IV nutrition running through his tiny veins.
No more chemical calories keeping him alive.
Just milk. Real milk.
His team will continue giving IV lipids for a bit longer — an extra source of calories to help him gain strength until he’s ready for full feeds.
His next big goal: 30ml an hour.
They’re almost there.
And for the first time in a long time, his parents can finally say those words with confidence: “We’re getting close.”
💛 A Step Toward Home
The doctors smiled when they walked in with the morning update.
Everything — his numbers, his oxygen, his labs — is finally trending in the right direction.
And for Jax’s mom, that smile meant everything.
Because for weeks, she’s been whispering a quiet prayer every night — that maybe, just maybe, they could take their baby home before Thanksgiving.
Not forever. Not for good.
Just long enough to hold him in their own living room.
To see him sleep in his crib without wires and alarms.
To have a few precious, normal weeks before his next heart surgery.
“I’m finally starting to believe it could happen,” she said softly, tears filling her eyes.
“Maybe we’ll actually get to bring him home.”
She doesn’t let herself dream too far ahead — not after everything they’ve been through.
But hope, once cautious and quiet, now feels real again.
💙 The Heart of a Fighter
Jax has been a warrior from the start.
Born with a complex heart condition, he’s already survived what most would call impossible — multiple surgeries, countless complications, and more sleepless nights than his parents can count.
Every scar on his chest tells a story.
Every wire and bandage is a reminder of how much he’s endured.
And through it all, he’s stayed strong.
His doctors call him “the little fighter.”
His nurses call him “the sunshine of the unit.”
Even on the hard days, when his body is tired and his breathing labored, Jax still finds ways to show that spark — the tiny smirk when his mom sings, the way his fingers wrap around his dad’s thumb like he’s saying, I’m still here.
Because he is.
And he’s not done fighting yet.
