Levi’s Brave Little Heart

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Levi’s Brave Little Heart “He heals the brokenhearted and binds up their wounds.” - Psalms 147:3

Sometimes I hate posting updates because they seem to trend more negatively than positively but we know we have a villag...
28/08/2026

Sometimes I hate posting updates because they seem to trend more negatively than positively but we know we have a village who cares. Overall, Levi is SO, SO happy. He is constantly smiling and loving life ❤️

…But we’ve had a little more thrown at us this week and it’s made my own heart a little heavier.

I was so ready for his weight check. It’s an easy 5 minute appointment, our easiest one. But Wednesday, we left feeling defeated again.

Levi is still losing weight and there is absolutely no explanation as to why. He is on a very high-calorie formula, meets his feeding goals every single day, and is doing everything we’ve been asked to do. Yet somehow, he is still losing weight, and his doctors are struggling to figure out where those calories are going.

He is currently below the 0.1 percentile.

…And then there’s his little punkin. 🥺 Because he has had to spend so much time laying on his back after surgery, his head is starting to get a little flat/deformed. We are now getting referred for a helmet as well.

His pediatrician gave me a frown as she added three more specialists to our list but I honestly laughed it off and said, “the more eyes the better at this point..” This baby’s team now consists of:

🫀 Cardiology
🫀 Cardiothoracic Surgery
🍼 Gastroenterology (GI)
🍼 Feeding Therapy
🫁 Pulmonology
😴 Sleep Medicine
👂🏻 ENT
🩸 Genetics
🪖 Cranial Orthotist / Helmet Specialist
🩺 Pediatrician

And somehow, through all of it, he is still just the happiest little boy learning to love his car seat 🥴🫠

Boy is resilient ❤️‍🩹💪🏻

25/08/2026

I don’t share many TikTok’s on here because it’s not the point of this page but our most asked question is “how did surgery happen so quickly?” So I finally am able to explain the wildest experience of all! 🥴🥲

We beat our first sickness and he is SO much better!!! 💪🏻 We are so happy to have our happy boy back ❤️
18/08/2026

We beat our first sickness and he is SO much better!!! 💪🏻 We are so happy to have our happy boy back ❤️

“MOM WHY ARE WE STILL SITTING HERE, PACK UP, IT’S TIME TO GET HOME!!!!”We’ve been cleared to finish riding out this sick...
16/08/2026

“MOM WHY ARE WE STILL SITTING HERE, PACK UP, IT’S TIME TO GET HOME!!!!”

We’ve been cleared to finish riding out this sickness at HOME!!!!! Time to bust out of here!!!!

16/08/2026

Some sweet giggles for your feed 🥰

“Mom did they just say another night?!”
15/08/2026

“Mom did they just say another night?!”

PLACING T-SHIRT ORDER TODAY! 🤍(I ended up not placing it the other day due to Levi unexpectedly getting sick 🙃)This is j...
14/08/2026

PLACING T-SHIRT ORDER TODAY! 🤍

(I ended up not placing it the other day due to Levi unexpectedly getting sick 🙃)

This is just a little final check before I send everything in!

I’ve listed the names I currently have below. If you ordered a shirt and don’t see your name, please message me today so I can make sure I have you down correctly! 🫶🏻

Current shirt list:
Stephanie Hollis
Becky Johnson
Amber Wade
Heather Mooneyham
Kelsey Sweat
Kelley Wade
Mandy Cantrell
Taylor Foster
Leigh Hardin
Cindy Allen
Connie Bailey
Stacey Spivey
Jan Campbell
Becky Cosper
Ashley Calhoun
Samantha Channell
Ashley Burgess
Shannon Massey

If you haven’t ordered yet but would still like one, today is the last chance to get on the list! 🤍

Thank you all so much for loving and supporting our sweet boy. It truly means the world to us. I cannot WAIT to see everyone in their shirts! 🥹🤍

Here’s a big ole smile from a happy Levi today! Praying tomorrow we get to go HOME!

08/13/26 • 4th admissionLevi has been admitted back into the CACU with a bad cold. We tried to wait it out at home as lo...
14/08/2026

08/13/26 • 4th admission

Levi has been admitted back into the CACU with a bad cold. We tried to wait it out at home as long as we could but with him being medically complex we were sent in for observation.

We have a echo in the morning due to a elevated heart marker and then hopefully if all checks out we will bust out of here! 💙

LEVI’S ARMY SHIRTS ARE LIVE! 🩵❤️I had our favorite T-Shirt girl design tees for our family to wear at surgery and we’ve ...
10/08/2026

LEVI’S ARMY SHIRTS ARE LIVE! 🩵❤️
I had our favorite T-Shirt girl design tees for our family to wear at surgery and we’ve had many of you guys reach out asking how to get one. My heart could explode at how many people our little guy has standing in his corner. 🥹🫶🏼

$22 each
2X and up: $28

Shipping and local pickup available!

Every purchase, prayer, and support means more to our family than you’ll ever know. 🥹❤️

Thank you for continuing to love our boy.🫀

🩵
❤️
🫀
🙏🏼

Feel free to comment or message me privately on this page!
Size/venmo or PayPal/pickup (Monroe) or ship
My Venmo: Mal_Hardin (my last 4 digits 3968)

God, what’s the plan here? Can we call it a scene yet? 🎬😭Yesterday was a lot. We went in expecting a simple sleep study ...
06/08/2026

God, what’s the plan here? Can we call it a scene yet? 🎬😭

Yesterday was a lot. We went in expecting a simple sleep study and we left carrying more diagnoses.

The sleep study confirmed what I already suspected. Levi has sleep apnea. Both kinds with way too many episodes where he struggled or completely stopped breathing. That alone was enough to make my heart hurt.

Then came his post-op echo. Which every single time I hold my breath, terrified they’ll find something new…. And then they did. We are now closely watching his left pulmonary artery because it’s developing new stenosis.

A little while later, the doctor walked back into our room with his post-op X-ray pulled up on the screen… Doctors don’t do that when everything is fine. We were then sent for a ultrasound where my heart just kept breaking.

Levi has a complication that has left his left lung paralyzed.

Right now, our tiny 3 month old is essentially breathing with one functioning lung.

Which leaves us only three possibilities from here:
• It heals on its own over the next six months.
• He needs another surgery in hopes of repairing it.
• Or this becomes his new normal for the rest of his life.

I know people can live with one lung. I know this isn’t the worst thing that could happen… But this is my baby. How much can one tiny body be expected to carry?

If you met Levi today, you’d never know. (Which btw I’m working on something where hopefully many of y’all will!)

His doctors are amazed by his strength and believe he’s already adapted to everything his little body has been enduring.

I’m thankful that the sleep study uncovered this before it went unnoticed. I’m thankful for the team surrounding him and now the new specialists that are also watching him closely. Which at this point, the more eyes the better.

But if I’m honest, I’m tired and I’m very scared and we still need so many prayers.

Please pray that God heals his left lung completely. Pray that the paralysis reverses without surgery. Pray that the stenosis doesn’t worsen. Pray for his precious heart. Pray that one day this little boy gets to know what life feels like without so much medical intervention.

We’ve watched God write miracle after miracle in Levi’s story and I’m begging Him for another one. ❤️‍🩹

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