Growing Strong with Elaina Hedtke

09/05/2026

I HAVE BEEN WAITING TO SHARE THIS. 😭❤️

Today, for the first time since she was born, Elaina slept with no ventilator support and no supplemental oxygen.

Just her.

Just her little lungs.

Just breathing.

And she did BEAUTIFULLY.

Her oxygen saturations stayed excellent, she was comfortable, peaceful, and showed no signs of distress.

Now — because I know people are going to ask — this was NOT us randomly deciding to take her off the vent.

Her pulmonologist specifically approved one-hour naps off the ventilator every day for the next couple of weeks so we can see how she tolerates sleep without support.

And the one-hour limit matters.

A pulse ox tells us how well she is oxygenating, but it does NOT tell us whether she is clearing carbon dioxide (CO₂) appropriately.

That means a child can sometimes have a beautiful oxygen saturation and still be hypoventilating or retaining CO₂ during deep sleep.

So while she looked absolutely amazing today, we are still being very cautious.

We watch:
• oxygen saturation
• heart rate
• respiratory rate
• work of breathing
• how deeply she is sleeping
• whether she is easy to wake
• whether she looks comfortable and like herself afterward

If she ever became unusually sleepy, hard to wake, started breathing too shallowly or slowly, looked distressed, or just seemed “off,” that would be a reason to put her back on the ventilator and follow her respiratory plan.

That’s why we are taking this slowly.

Sleep is a BIG milestone because breathing changes when the body relaxes and enters deeper sleep. A child can look incredible off the vent while awake, but sleeping without respiratory support is a whole different step.

So for the next couple of weeks, we’ll keep doing these carefully monitored one-hour nap trials and let her pulmonology team decide when she’s ready for more.

And today?

She passed beautifully. ❤️

I cannot explain what this feels like.

There was a time when Elaina needed a ventilator just to survive.

There was a time when we didn’t know what her lungs would ever be capable of.

There was a time when breathing independently felt impossibly far away.

And today I sat beside her and watched her sleep peacefully while her own body did all the work.

No vent.

No oxygen.

Just Elaina.

We still have a process ahead of us. We are not rushing anything.

But today was a glimpse of the future we have prayed for.

And I am SO proud of her. 😭❤️

09/02/2026

Are there any other medical moms out there that LOVE IT when the day and night shift cares line up to be at the EXACT same time or am I just extremely OCD? 😅

Side note: if you couldn’t tell, we live our lives in 2hr increments lol

09/02/2026

I’ve been trying to remember who I am outside of being a mom, and especially outside of being a medical mom.

I am deeply maternal, deeply emotional, and someone who loves intensely. Motherhood has always come naturally to me, and my daughters are the center of my world. But I am also more than just a mom.

I’m Raegan. A Cajun girl from south Louisiana with a degree in criminal justice, a sharp mind, strong opinions, a dark sense of humor, a love for beautiful things, and a tendency to dream a little bigger than my current circumstances.

I’m a foodie in the truest sense. I don’t just like food—I love the whole experience of it. Seafood is my favorite, Italian is a close second, and there are few things I enjoy more than getting dressed up, going somewhere beautiful, and sharing an amazing meal with people I love.

I’m also a walking contradiction. I’m a total homebody who dreams about private jets and Italy. I love sleeping in, but I also love getting dressed up, smelling incredible, going dancing, and turning heads. I love Halloween, haunted houses, scary movies, and murder mysteries—but I also love perfume, fashion, astrology, coffee with way too much creamer, and basically every dessert ever made. 😂

I’m curious. I like conversations that actually make my brain work. I love hearing different perspectives, thinking about why people do what they do, and watching choices and consequences unfold. I think that’s part of why I love murder mysteries and story-driven video games so much.

More than anything, though, I crave real connection.

Not attention from a crowd. Not hundreds of acquaintances.

I want a tribe.

I want friends who think of me automatically. Friends who text, “Come with us.” Friends who know my coffee order, invite me shopping, sit around my house, go dancing with me, celebrate birthdays, and show up when life is ugly. I don’t need a huge social circle. I just want a few people who feel like home.

I also really love femininity. I love women. I love fashion, makeup, perfume, dressing up, being bold, and beautiful things. There’s a glamorous version of me that has never really disappeared, even when life got heavy enough that I stopped recognizing her.

And I think that’s what I’m trying to remember right now.

I’m still in here.

I’m still the woman who loves Halloween.

The woman who wants to two-step in a honky-tonk.

The woman who could spend an hour smelling perfumes.

The woman who wants oysters or lobster followed by tiramisu.

The woman who wants to talk about birth charts and murder mysteries until 2 a.m.

The woman who dreams bigger than her circumstances.

The woman who wants girlfriends.

The woman who wants to feel beautiful.

The woman who wants to travel.

The woman who wants to laugh.

The woman who wants to be surprised by life again.

So I guess this is me introducing myself—not just as a medical mom, but as a woman who is trying to find her way back to herself too. ❤️

08/29/2026

08/27/2026

Daddy kisses cure everything ❤️
Our girl got moved to the step-down unit. Dad and I are pretty much responsible for all cares now and if all goes well, we will be discharged on Saturday!

08/27/2026

Check this out! Notice in the top right picture you have a white space and gray space. The white border is her skull and the gray was her brain. Her brain was compressed on ALL sides into the bone and even managed to squeeze into a “pocket” on the top. Then notice the bottom left picture. You have the white skull bone, dark gray which is her brain and then the light gray is ALL the room she has to grow into! Also allowing brain fluid to accumulate as it should.

This picture explains better than I ever could why Elaina’s surgery was not cosmetic.

Before surgery, the front of her skull had become so restricted from progressive craniosynostosis that there was very little room for her growing brain in that area. Her surgeons told us afterward that her brain was extremely compact and that this surgery truly could not have waited much longer.

The bottom images show what they were able to do.

They opened, reshaped, and reconstructed the front of her skull to create more intracranial space and give her brain room to continue growing and developing.

That is the entire reason we did this.

Not for appearance.
Not for a “better head shape.”
Not because we wanted to put her through a massive surgery unnecessarily.

We did it to protect her brain, her vision, her development, and her future.

Her eye exam before surgery was still healthy. Her brain imaging still looked structurally normal. And that was exactly the goal — to intervene before pressure caused permanent damage.

Seeing these before-and-after images makes everything feel so real.

Top: restriction.

Bottom: room to grow.

Our girl went through something enormous, but now her brain has something it desperately needed:

space. ❤️

08/26/2026

They’re keeping Elaina in the ICU another day. The plan was to transfer her to the basic hospital floor today and start getting dad and I more involved in her cares and set the tone for going home but her CBC results are starting to show concern. Her red blood levels are holding okay after the blood loss/transfusions, her platelets are low and need watching, and her white blood cells/neutrophils are elevated, which could be from surgery itself but is enough that the team wants to make sure an infection isn’t developing. Swelling is at its worse as you can see around her eyes.

08/25/2026

The difference already takes my breath away. ❤️

Yesterday, Elaina went into surgery with a skull that had become increasingly restricted in the front from progressive craniosynostosis.

Today, she has room to grow.

Her surgeons told us the procedure itself went perfectly. They were prepared for every possible complication because of how severe and unusual her case was, and thankfully they never had to veer from the original plan.

But recovery has been hard on our girl.

She is honestly not feeling well right now. They’ve had to add supplemental oxygen, and her IVs keep blowing, which means she has already been poked over and over trying to get new access. She is uncomfortable, hurting, and so upset that we can hear her crying through her trach.

She is currently receiving morphine, Tylenol, and Precedex to help keep her pain and agitation under control.

We were warned that this surgery would hit her hard and that the next couple of days could be rough, especially as the swelling increases. Her team fully expects her to improve, but right now we are very much in the thick of the difficult part of recovery.

As hard as it is to see her hurting, I keep reminding myself why we did this.

Before: restriction.
After: room.

And that room matters for her brain, her growth, and her future.

Thank you to every single person who has checked on us, prayed for her, sent messages, donated, shared her story, and encouraged us through this.

I may not be able to respond to everyone right now, but please know I see the messages. I feel the love. And it means more than I can explain.

Please keep praying for comfort, good oxygenation, stable IV access, pain control, and a smoother day ahead for our girl. ❤️

08/24/2026

She’s out of surgery and in recovery! Perfect surgery. Dr’s literally said the word “perfect” said they took so many precautions to prepare for things to happen because this was such a severe case and never had to veer off from their original plan. Said “that was a very compact brain” and said this surgery couldn’t have waited any longer. She lost a lot of blood. Required several blood transfusions but is now in the PICU recovering! Discharge possibly Sunday. Swelling will be at its worst tomorrow night.

08/24/2026

Elaina is in the OR now. Surgery is estimated to be done around 2pm. Thank you all for the prayers and support.