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Growing Strong with Elaina Hedtke

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Growing Strong with Elaina Hedtke

Follow our journey with our micro-premie, Elaina.

We share updates, celebrate milestones, and cherish and love your support ❤️

Ways to Support Elaina ⬇️

https://gofund.me/7047d14da

04/10/2026

Elaina has been doing well on her azithromycin! It seems to help her throwing up spells. Her heart has also been stable!

We’ve got some pretty big and exciting next couple of weeks.

Chris and I are going back to stay with Elaina in her room next week. We have her vent class on Monday, vent sim on April 22, her 48 hour room in April 25-27 and projected discharge date on April 29. Yep! You read that right. We have a discharge date.

It’s not set in stone of course but to think Elaina could be home in 2 weeks is…incomprehensible.

04/06/2026

Elaina is still throwing up. Despite countless negative virus panels, different feeding variations, changing her formula, changing her respiratory treatments, nothing is working. I spoke to her GI doctor this morning. They think it’s a motility issue. Because Elaina has been on very strong pain medication and sedatives for such a long time, her intestines aren’t working properly. Aren’t processing food quick enough. Thus building up and causing her to vomit. They are going to put her on a medication to help “spark” her intestines in the hope that this stops the vomiting.

However, this medication, Azithromycin, counteracts with her methadone. Both Azithromycin and Methadone can affect something called the QT interval in your heart. The QT interval is how long it takes the heart to reset between beats. If it gets too long, it can lead to abnormal heart rhythms.

Any additional stress on Elaina’s heart is taken very seriously. Especially because she has pulmonary hypertension. Pulmonary hypertension adds a layer of caution. With Pulmonary Hypertension, the heart, especially the right side. is already working a bit harder to pump blood through the lungs.

So anything that could affect heart rhythm (like QT prolongation) gets taken more seriously. In a child with pulmonary hypertension, doctors are extra cautious because: the heart is already under stress and abnormal rhythms would be less tolerated than in a completely healthy heart.

Even with pulmonary hypertension, this combination is still used when needed because: the QT risk is dose-dependent and usually mild, serious arrhythmias are rare and the situation (ongoing vomiting, dehydration) also has real risks.

So this becomes a risk vs benefit decision. Y’all keep her in your prayers. New medications mean all progressive care towards going home stops. Until we can get this under control.

04/03/2026

11 months.

11 months of hospital rooms, harsh fluorescent lights, constant alarms, sleepless nights, and the kind of fear that sits in your chest and never fully leaves.

11 months of watching my baby fight battles that felt impossible — moments of pure terror, uncertainty, and heartbreak. Moments where I didn’t know what the next hour would hold, let alone the next day. Moments where I’ve cried more than I ever thought I could.

This journey has been filled with the kind of fear you can’t really put into words… the kind that changes you.

And yet… in the middle of all of that…

I look at her.

And I see the most breathtakingly beautiful face I’ve ever known.

Soft cheeks. Bright eyes. Tiny hands that still reach for comfort, for love, for me.

How can something so beautiful exist in the middle of something so hard?

And yet, she does.

She’s still here.
Still growing.
Still learning.
Still fighting in ways most people will never understand.

There are days I feel completely overwhelmed. Days I feel defeated, exhausted, and scared.

But she reminds me, over and over again—

Strength doesn’t always look loud.
Sometimes it looks like soft cheeks, sleepy eyes, and quiet resilience.

And now… somehow… we are here.

After 330 days in the hospital…
discharge plans are finally starting.

And I don’t even know how to put that into words.

It feels miraculous.
It feels surreal.
And if I’m being honest… it feels absolutely terrifying.

Because for the first time, it won’t be nurses and monitors and teams surrounding her every second.

It will be us.

Me and Chris… bringing our baby home.

And in the strangest, most emotional way…
we’re about to experience something we never got to before—

What it feels like to bring your newborn baby home for the first time.

After everything.

After all the fear, all the unknowns, all the fighting…

We’re finally getting that moment.

I didn’t know how to be this kind of mom 11 months ago.
But she’s teaching me. Every single day.

And through all the fear, all the chaos, all the unknowns…

She is still here.
Still mine to hold.
Still absolutely, unbelievably beautiful.

And that… is everything. 💛

03/30/2026

Elaina has transitioned to her home vent! She got on it around noon today. It’s the Philips Trilogy Evo ventilator. Anyone have experience with this ventilator? If so, please feel free to message me or comment. Her nurse said so far she’s doing great.

A true successful transition will be after 3–5 days. They want to see: stability over multiple days AND nights, no need to switch back to Servo, no major respiratory setbacks, and consistency during sleep, wake, and care times. Around this point, they consider her:
“successfully transitioned to home vent”

Longer-term confidence is 1–2 weeks. This is more for: fine-tuning settings, seeing how she handles illness, feeds, and sedation medication changes.

Now that the home vent has FINALLY been introduced, Elaina’s discharge date becomes foreseeable. Dad and I only have our ventilator class, ventilator sim, and then room-in left until we have the complete green light proving we “can” take her home.

03/27/2026

ELAINA HAS HER FIRST TOOTH! 🦷 I was letting her chomp on my knuckle like I usually do and something felt a little too sharp 😂 I looked and BOOM there it was 😭 please excuse her chapped lips. We constantly apply chap stick so don’t worry. ALSO dad and I are officially certified in all things trach care AND CPR. 😎

ALSO, Elaina is doing great on her new formula and hasn’t thrown up in over 48 hours! Yay! Home vent is back on the table for Monday. We’ll see how that goes!

03/26/2026

Day 324: Nugget is doing better. They switched her formula from Enfacare to Nutramigen. Nutramigen is hypoallergenic typically given to babies with dairy allergies so we’re hoping it’s easier on her stomach. The hope is that she continues to tolerate raising her feeds little by little until she’s at full volume with no vomitting episodes. Until then, they’re keeping her on IV fluids and slowly increasing feeds. Dad I take our trach modified CPR class tomorrow. Only thing left for us to take is our ventilator class. That won’t happen until Elaina is on a home vent. So needless to say, Chris and I have been working our asses off getting signed off on all her cares. We’re pretty proud.

03/22/2026

Elaina is continuing to vomit. They have stopped her feeds and started an IV drip of fluids (again). Diarrhea has also returned. GI is doing a full work up on her first thing in the morning. All weans from medication and plans to move to a home ventilator have stopped for now. Her metabolic and respiratory panel are normal. This could be aftermath of Rotavirus or a bowel obstruction or 10000 different things.

03/19/2026

I should know by now that whenever a plan is set in motion, don’t believe it until it’s happening. They’re holding off on Elaina’s home vent trial. Because she keeps throwing up. She doesn’t have a virus. There’s no fever. Bowel movements are regular. They can’t give her any nausea medication because they counteract with her other medications. So she’s just vomiting all day and nobody can do anything about it AND they won’t move forward until it stops. What kind of sense does that make?

Babies who have been in the hospital AFTER Elaina are already on their home ventilators for weeks now AND their parents are signed off on all trach protocols. I’m getting really really angry and frustrated because it seems like we just keep getting pushed aside.

03/18/2026

My pretty girl in green today 💚 they are trialing Elaina on a home ventilator today! Meaning they’re taking away the hospital grade ventilator and seeing if she can handle the ventilator she will come home on. It’s a huge step! A lot of people compare it to going from a Mercedes to a Honda Civic 😂 both can do the job but one makes you work a little harder and doesn’t have all the bells and whistles. Y’all keep us in your prayers today that the trial goes well 🤞🏻

03/15/2026

I just called to check on Elaina! We’ve been living in her room with her since March 1. We came home this weekend for her big sisters birthday but plan on returning on Tuesday. Her nurse said Elaina is going through the withdrawal TRENCHES. They’re weaning her off her very last set of sedation medication and she’s not handling it well. She’s extremely irritable, very nauseous, and is back to having watery stools. They are giving her Tylenol as comfort.

For the past 2 weeks, that girl has been in my arms receiving all the kisses and cuddles so I know us not being there isn’t helping either. Y’all say prayers we get through this!

03/10/2026

Goodnight (NOT) from Elaina everyone! 😂

03/09/2026

I’m laying here in the recliner in Elaina’s hospital room, holding her while she sleeps on my chest. I can feel her little chest rising and falling against mine, taking big deep breaths. My nose is buried in her hair and her tiny fingers are wrapped around my shirt.

And for the first time in a long time, I almost feel…serene.

For 10 months I have begged for just one moment like this. One moment where everything is quiet and I can just hold my baby. And now it’s here.

She’s safe. She’s happy. She’s mine to hold onto.

Forever.

This journey hasn’t been easy. I’m here in the hospital learning things I never imagined I’d have to learn. CPR, tracheostomy care, emergency bagging, pushing meds through her G-button, how to keep her safe when we finally bring her home.

It’s scary. It’s overwhelming. And I won’t pretend I haven’t cried… a lot. There have been nights filled with fear, stress, and the weight of wondering if I’m strong enough for all of this.

But I’m learning.

And every day I feel a little more confident. Confident in how to care for her. Confident in how to protect her. And most importantly… confident in being her momma.

This moment right here — holding her while she sleeps — is everything I prayed for during the hardest days.

It’s beautiful.

And yes… a little scary too.

But she’s here. And she’s mine. And I will spend the rest of my life learning how to take care of this incredible little girl.

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Texarkana, TX
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