Levi’s Brave Little Journey

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

We have a surgery consultation this Tuesday to meet our assigned surgeon! 🥹I was so defeated to hear of another surgery ...
10/15/2026

We have a surgery consultation this Tuesday to meet our assigned surgeon! 🥹

I was so defeated to hear of another surgery but now we are feeling much more optimistic and dare I say excited that his team is confident this will be what Levi needs to thrive. His GI doctor also decided that it’s time to move forward with a G-tube as well. Feeding has become increasingly difficult for him and we want to give his little body the best chance to get the nutrition he needs to grow without exhausting himself and gagging on the NG tube.

They will be doing the surgeries together!!! This is huge!!! I still hate this is happening but I love hearing he can get it all done in one go!

The plan is for his surgeon to handle the G-tube while ENT handles his airway surgeries, possibly a pharyngoplasty (a floppy flap removal) and a adenoidectomy (removing his adenoids). His doctor told us today that his entire medical team is already communicating in a group conversation and preparing for EVERYTHING. He told me Levi is a very popular guy. 🤣❤️

Because Levi is so medically complex and considered very high risk, we know this won’t be a simple surgery. He has Hemophilia A, a complicated heart history, a rare lung disease, and significant breathing issues. We will be admitted beforehand to ensure his blood factor is where it needs to be and he will be in the ICU afterward for close monitoring.

Tuesday is just the consultation, so we don’t have a surgery date yet. We’ll hopefully have a better idea of the timeline after that appointment!

I’m feeling so many emotions right now. I’m relieved that we’re finally getting a plan in place but I’m also terrified of how his little body will handle everything. After everything we went through with his heart surgery, the thought of him going through another major medical event is overwhelming.

BUT we know he needs these procedures and we’re trusting his doctors to help us navigate the risks and make the best decisions for him.

He will breathe easier, get the nutrition he needs, and give him the best quality of life possible. ❤️‍🩹

Pray for wisdom for his entire medical team and strength for our family as we navigate.

Thank you for continuing to love our boy and follow his journey. We appreciate every single one of you more than you know and are overwhelmed by the love and support we’ve received. Our boy is strong 💪🏻❤️

10/13/2026

We have many new followers and nothing makes my heart happier than getting his story out there and having all the prayer warriors on our side. We’ve seen God work many miracles with this baby already and I truly believe it’s because of everyone’s prayers. We also needed a updated pinned post to better explain his journey now so here we go!

Today we got more answers about Levi’s breathing and it turns out things are much more serious than I realized. I don’t ...
10/12/2026

Today we got more answers about Levi’s breathing and it turns out things are much more serious than I realized. I don’t even know what to say besides that my heart is broken. I’ll never understand any of this that we’re going through but I will keep trusting God’s plan and modern medicine. 💙

We had an ENT appointment today that I thought was just a follow-up.

During that appointment, we learned his sleep study showed well over 100 episodes of him struggling to breathe or not breathing during sleep. We knew he had severe sleep apnea but I wasn’t aware of just how serious it was.

His ENT also immediately noticed the grunting that we’ve come to know as Levi’s “normal.” But he made it very clear that it should never have been brushed off as normal, because it isn’t. I’ve known something wasn’t right and having someone acknowledge that feeling did bring some relief but I never expected surgery to be the next thing out of his mouth. 😔

We now know Levi has serious blockages in his airway, and from the sound of it, surgery will be happening pretty quickly. They just don’t know exactly what they’re dealing with until they get in there.

With Levi’s existing conditions, he’s at high risk for several complications. The biggest concern will be his bleeding with having Hemophilia A. As the doctor went through each one, my heart sank a little further. It’s more than my brain can even begin to wrap itself around. How can one happy baby have so much to fight through?

I just want my baby to be okay and for this to all be behind us. I know God has this. I have to believe that because I don’t know how else to walk through something like this. I’ll keep trusting, keep praying, keep asking questions, and keep fighting for him every step of the way.

Once again, I’m begging for prayers. Pray for healing. Pray for protection from complications. Pray for his doctors and surgeons. Pray for answers, for strength, and for our sweet Levi to finally get some relief. 🩵🙏🏻

Most of you have been here since the very beginning, when Levi was diagnosed with Tetralogy of Fallot and Levi’s Brave L...
10/09/2026

Most of you have been here since the very beginning, when Levi was diagnosed with Tetralogy of Fallot and Levi’s Brave Little Heart felt like the perfect name for his page. It was, it was the beginning of his story.

But Levi’s story became so much bigger than his heart very quickly and while we’ll always share his heart journey, it’s no longer the only journey we’re walking.

So it was only fitting to change the name to Levi’s Brave Little Journey. 🩵

This page has never really been JUST about his diagnoses though, it’s about the boy behind them. The baby who has been through more than anyone ever should but still has the biggest smiles and the sweetest little laugh.

It’s about the hard days, the victories, learning to navigate a medical world we never asked to be part of, advocating, and figuring out our new norm. It’s about sharing what we learn, raising awareness for conditions most people have never heard of, and connecting with other families walking similar roads.

Thank you for being here, for loving Levi, for praying for him, and for continuing to follow along as we navigate this wild journey.

I’ll say it 1000 times.. He’s so much more than his medical chart and I want to make sure the world gets to see that too. 🩵

I could not let Pediatric Nurses Week slip by without making this long overdue post.. 🩺💙I don’t think there are words bi...
10/07/2026

I could not let Pediatric Nurses Week slip by without making this long overdue post.. 🩺💙

I don’t think there are words big enough for what pediatric nurses have meant to our family.

We’ve spent 53 days of Levi’s life in the hospital, and that means we’ve had A LOT of nurses become part of our story.

They’ve held him when I couldn’t.
They’ve celebrated the tiny victories with us.
Some have literally held me while I cried.
They’ve answered the same question 47 times because my brain was running on absolutely nothing. 😂
They are the first to notice when something isn’t quite right and jump into action while dialing doctors.
They are our biggest advocates.
They’ve learned his little quirks, his favorite positions, his “I’m about to scream” face and exactly how he likes to be held.
I watched them have fear in their own eyes while comforting us.

They’ve become people we will never forget.

Pediatric nurses don’t just take care of the baby. They take care of the whole family. They become part of the hardest days, the scariest nights, the first smiles after surgery, the good news, the bad news and everything in between.

So to every nurse who has ever cared for Levi, thank you.
Thank you for loving our baby when we had to step away.
Thank you for advocating for him.
Thank you for treating him like more than a diagnosis.

You matter more than you realize. 🩵

I can thank the surgeons and doctors all day long, and I do, but it’s the nurses behind them that hold everything together when the doctors leave the room. They are the ones who stay. They see the tears, the fear, the tiny victories, the 3 a.m. moments and all the in-between. They are the ones who make an unfamiliar hospital room feel a little less scary.

Happy Pediatric Nurses Week.
We’ll never forget the nurses who helped carry us through. 🫶🏻

There is no better view in the world! 🥹 We busted out!!! Levi is stable enough to finish riding this sickness out at hom...
10/06/2026

There is no better view in the world! 🥹 We busted out!!! Levi is stable enough to finish riding this sickness out at homeeee 👏🏻👏🏻👏🏻👏🏻👏🏻

We have a solid plan now for his lung condition and that will hopefully help us handle these colds a little better! Levi will be getting vest and suctioning treatments to help manage his PCD, which is why he handles these viruses so badly and seems to constantly be sick. We’ll definitely have to be extra careful this season but at least now we have some more tools in our toolbox. 🫶🏻

Seventh Admission ☹︎A simple cold is just too much for his little body leaving us admitted for observation and care, hop...
10/04/2026

Seventh Admission ☹︎

A simple cold is just too much for his little body leaving us admitted for observation and care, hoping to get him through this as quickly as possible. ):

We had a little scare in the ER that almost prompted an ICU admission because of his breathing but thankfully he’s tolerating everything well enough to stay in CACU. Our “home” floor! That alone felt like a huge answered prayer. 🥹

While we’re here, they’ve decided to go ahead and bring in the cancer/blood disorder team (aka hematology) and pulmonology. We were supposed to see both of them this week anyway for his new genetic findings but since we’re already here and these conditions need treatment sooner rather than later, they’re going to tackle it all.

Honestly, I’m relieved. It saves me two extra trips to Atlanta later this week. 🤷🏼‍♀️

Please pray for all of the testing Levi is going to have to go through. Every poke, every scope, every little thing is so hard to watch, especially now that he’s getting older and is much less willing to cooperate. It’s traumatizing to say the least.

He is still the happiest boy in the world though, shocking all of us. It’s truly amazing to witness the strength this baby has. He continues to amaze us every single day. 🤍

🥹🫀 LEVI IS STILL IN FIRST PLACE!Somehow, our tiny heart warrior has made it this far and is currently sitting in 1st pla...
10/02/2026

🥹🫀 LEVI IS STILL IN FIRST PLACE!

Somehow, our tiny heart warrior has made it this far and is currently sitting in 1st place in his group. ❤️

But this is where it gets REALLY exciting…

👉 Levi has to finish this round in 1st place to advance to the Quarterfinals.

If he holds onto that #1 spot, he will move on to compete against the other 1st-place babies from the other groups and then…

🔄 THE VOTES RESET.

Everyone starts back at zero.

That means this round is everything. Every vote and every share right now is helping determine whether Levi gets that next chance. 🥹

It is absolutely WILD that Levi even has a shot at this. We never could have imagined that we’d be watching our little boy, after everything he has been through, climb his way into first place with people all over cheering him on.

This started as something fun but you guys turned it into something so much bigger. ❤️

Every vote.
Every share.
Every person who has told their friends about Levi.
Every person who has checked in on him, prayed for him, loved on him, and followed his journey.

We see you. We appreciate you. And we are SO thankful.

So if you’ve been voting, keep going. 🥹
If you haven’t voted yet, now is the time.
And PLEASE share this post so we can get Levi in front of as many people as possible.

We need to protect that #1 spot. 🫀

Let’s get this little heart warrior to the Quarterfinals. ❤️



 https://babyoftheyear.org/2026/levi-5d47

🧬🧠 Okay… we have some sort of update. I was trying to wait until we saw our new specialists, but I know many of you are ...
09/19/2026

🧬🧠 Okay… we have some sort of update. I was trying to wait until we saw our new specialists, but I know many of you are waiting right alongside us.

We got his whole genome sequencing results back and it’s not at all what we expected. As much as I didn’t want him to have a syndrome, where we are at… it would have almost been easier to start treating at this point. Instead, the WGS found other findings that his team is taking very seriously.

From the way it was explained to us, they believe they have found actual conditions/diagnoses, and now we have to figure out how severe they are, exactly what they mean for Levi, and how much they could explain everything we’ve been seeing.

The two diagnoses they are now investigating are Hemophilia A, a bleeding disorder, and Primary Ciliary Dyskinesia (PCD), a genetic condition that affects the lungs and respiratory system. Levi has had complications in these departments where these two things do make a lot of sense now.

…And then there’s his little head, which we haven’t talked much about. 🥺

His head shape has been a concern of mine for a while but now we have found that his fontanelle is possibly closing too soon. We’re being sent to the cranial team to look specifically at his skull sutures and to discuss possible surgery.

Levi has already been through SO much. ❤️‍🩹

He has Tetralogy of Fallot with a large VSD, hypoplastic pulmonary valve and a right aortic arch. He’s had open-heart surgery. He’s dealt with feeding and growth problems, low muscle tone, respiratory issues, sleep apnea and oxygen desaturations, and a whole list of things that have made us constantly ask, “Okay… but WHY?”

Now we know that some of these things may be completely unrelated, and that’s the heaviest part. It’s just unfair.

We still don’t have every answer. We still have specialists to see and more testing to do.

I’m scared. There’s no other way to word it. This week has been one of the heaviest since the day I sat at the MFM learning about his broken heart. I’d like to say I’ve handled everything we’ve gone through with grace and positivity, but right now I’m struggling.

He’s still the happiest boy in the world despite everything thrown his way though!

As always, thank you for loving this boy through every weird test, hospital stay, scary night, good day, and “well… we don’t know yet”. ❤️

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Monroe, GA
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