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Jenna's Journey, Summerville, GA (2025)

11/07/2025

2 years ago…

We were so excited to finally bring Jenna home, but we had no idea what those first weeks would really hold. We didn’t have nursing for the first 30 days, which meant midnight meds, 6 a.m. meds, topping off formula in the middle of the night, and managing doses every few hours around the clock.

Think of bringing home a newborn — only this newborn was 6 1/2 months old and came with a ventilator, oxygen concentrator and tanks, a feeding pump, suction machines, and shelves, shelves, and more shelves packed with medical supplies. You’re exhausted, but you can’t ever fully shut down - tired or not, you MUST wake up to every alarm during the night. Every instinct you have as a parent kicks into high gear because your medically complex baby is depending on you. Sleep? Barely. And between it all, weekly appointments, constant routine changes, and trying to figure out what home life even looks like with a 6 1/2 month old who’s never been home before.

But now, 2 years later… she’s off the vent. Off oxygen. She rarely needs suctioned. If we can just get this weight gain figured out, maybe we can finally say goodbye to the feeding pump too.

Happy two years at home, Jenna. 💜
And thank you to EVERY single person who helped us get here — from buying registry items, sending gifts, donating, praying, encouraging, and checking on our family. We truly could not have made it this far without God using all of you to carry us through.

10/31/2025

She doesn’t know it yet, but the appointments we’re heading to today (Wednesday) will likely make the next few days - maybe even the next week - tough on her. I’ve been anxious about it for days.

She’s switching from a G-button back to a GJ. That part itself isn’t the issue - it’s what comes with it. She's used to the freedom. I’ve been dreading this switch back to a GJ for a while. She needs it for now, but it means being hooked up to the feed pump almost all day — 22 hours of making sure tubing doesn’t get snagged, pulled, or tangled, otherwise we're heading back to the imaging room to have a new one placed. The GJ didn't solve the issue the first time, but maybe this time will be different.

She’s been in that imaging room multiple times. The moment we walk in, her little body tenses. It doesn’t matter what the appointment is for - she knows that particular room means being held down, lying still on a cold table while mom and strangers hover around her.

I always explain what’s about to happen before anyone touches her. Even then, before the dr even gets in the room, she starts crying & signing "all done, all done, all done." (She flailed and fought, but medically, the procedure went smoothly.)

Anytime there’s an issue with her G-button (now GJ) or around her stoma, she flinches when we come near it. Especially after she’s been held down or experienced something painful, even routine care - cleaning her tummy site, applying gel, changing gauze - can leave her swatting us away and crying from a place deeper than pain. It’s fear. It’s memory.

Today we also did her trach change during her pulmonology appointment. We do them every four days, but this time we were worried about how her trach site looked. Thankfully, she didn’t have to be held — and she did amazing. The stoma already looks a hundred times better than it did during the last few changes. The Cipro drops were definitely the right call by her doctor.

Right now, she’s just sitting in her car seat, content and unsuspecting, watching the world pass by. She has no idea what’s coming - or what she’s already conquered.

And my heart aches knowing that the very places keeping her alive - her two stoma sites - are also the ones that cause her so much fear. We clean them, care for them, and do everything we can to make it gentle… but some days, love has to look like holding her still.

***
After leaving yesterday, I felt relieved! The anxiety-filled days definitely continue to come & go. 💕

10/24/2025

In the beginning of my daughter’s trach, vent, G-tube, and oxygen journey, I remember feeling a strange kind of “safety.”
We had specialists for everything - Pulmonology, GI, Endocrinology, Nephrology, Urology, Cardiology, and we now have SLP for feeding and speech, plus PT and OT. It felt like we had an entire army behind us. If we had a question, there was always someone to call.

Our pulmonologist was basically our primary care doctor - because nearly everything came back to her airway.
Sick? If stable, get a culture and a viral panel, otherwise - ER.
New symptom? Call pulm.
I thought that was how it was supposed to go.

In the PICU, I learned everything they were willing to teach me - and honestly, I soaked it all up. But it wasn’t until we went home for the first time that I realized something life-changing: I wasn’t just a bystander on my daughter’s care team. I was the most important member of it.

That realization hit hard. It’s one thing to be surrounded by a team of professionals in the hospital - it’s another to be home, where you are the one keeping your child alive, hour by hour. There’s no call button. No monitor alarms down the hall. It’s just you.

Over time, I became the researcher, the coordinator, the constant observer. Between specialist appointments, I was reading studies, comparing symptoms, and showing up to appointments with my own list of suggestions. At first, it was frustrating *almost intimidating* to feel like I had to make medical suggestions to the very people who went to school for this. But then I realized something…

No one sees my child the way I do.
No one spends every day connecting all the dots across her entire body, not just one system at a time.

Because while each specialist focuses on one part of her body - lungs, stomach, kidneys - I see the whole child. I see how her GI symptoms affect her breathing. How her oxygen levels shift when her stomach hurts. How one tiny change in medication can ripple through everything else.

I stopped seeing myself as “just a parent.”
Because I’m not just a parent. I’m her care coordinator, her respiratory therapist, her schedule manager, her advocate, her chauffeur, and her voice when she can’t speak for herself.

I'll never apologize for speaking up.
I don't feel guilty for questioning things.

Her doctors may know more about each body system - but I know her. I know when something is off, even if the labs look fine. I know when she’s in pain, even if her vitals don’t show it. I know when something doesn’t make sense - because for us, it usually doesn’t.

“It’s not supposed to happen that way.”
“I can’t explain why that’s happening.”
“I’ve never seen that before.”

Those are phrases I’ve heard more times than I can count. But that’s the reality of having a medically complex child - there is no textbook for them.

And while the specialists guide the science, it’s the parents who live the story every single day.

09/26/2025

Happy National Daughter's Day to this sweet, strong, sassy girl! 💕 In less than a week we go for an overnight PICU stay to trial off the ventilator!

Thoughts from today:
You know you've been around the hospital too much when you walk down the hallway for weekly appointments and feel like its social hour because you always see people you know, or they see and recognize Jenna, greet her with a fist bump, and ask how she's doing. NICU pod buddies, friends, nurses, NICU/PICU staff, trach families, all of Jenna's specialists, dme company staff, therapists (all specialties), check in staff and anyone else! We love it, though!! Jenna knows she's popular around there. 😅

📸 Check out Jenna trying the gait trainer at PT today for the first time!

09/15/2025

🌟 Life with a Feeding Pump 🌟

Most of you know that Jenna eats through a g-tube in her belly. Some of you have used a feeding pump before, and others may have no idea how vital - yet frustrating - these machines can be.

Today has been one of those annoying days with the pump. Every 30 seconds it insists there’s a kink or clog. So you go down the checklist: warm the feed to thin it out, restart the pump, take the cassette off, prime the line, flush to be sure, double check that the line isn’t kinked anywhere, and make sure it isn’t clamped… and yet it still errors. I KNOW that the line isn’t clogged because it flows just fine when I prime it.... Some days it runs smooth, but other days are like this.

Update:
We’re still making all of Jenna’s feeds at home, always listening to other parents’ and registered dietician's videos and learning as much as we can. Right now Jenna is vomiting 1-2 times a day, which is actually an improvement. But weight gain is still our biggest battle. She hit 22 lbs back in June 2024, and now - at almost 2.5 years old - she’s hovering around 20 lbs.

We, with our GI team's approval, are trying different strategies between now and January to help Jenna gain. Then, in January we’ll travel to Atlanta for a week for motility testing to hopefully get some answers about why her body isn’t holding onto weight.

Once we can get Jenna to gain steadily, our hope is to try weaning her off the tube. We've found an amazing program that everyone who goes through it seems to love! But first, we need to figure out what’s standing in the way. 💕

Until then, we celebrate the small wins, lean on what we’ve learned, and keep pushing forward. We'd love for you to continue praying for the vomiting to stop and for Jenna to gain weight.

09/01/2025

Jenna still as a lot of work to do before she's walking properly, but she WANTS to do it!

08/30/2025

Jenna is amazing us every single day! 🙌 At 2 years and 4 months old, she is officially crawling, pulling herself up to stand, and even climbing into chairs. These are HUGE milestones that didn’t come easy. They’re the result of countless therapy sessions, endless practice, and her incredible determination.

Also, Jenna is finding more and more of her voice! She’s beginning to form sounds and connect them to their meanings. She can say the starting sounds for words like:
✨ Ba(th)
✨ Ba(ll)
✨ Bo(at)
✨ Bu(g)

She’s also saying mama, mawmaw, and just recently started saying dada, “done,” and “no.” She’s working hard on “p” words too - like pawpaw - and every new sound feels like music to our ears.

Don't get me wrong, though, Jenna can communicate with ease. She knows and uses 200-300 signs in ASL. She forms 3+ sign phrases, and if she really really wants something, she's quick to add in a dramatic "pleeeease" sign.

We are so proud of her strength, her progress, and her unshakable spirit. 💙

08/12/2025

You may not be able to remember the last time your 2 year old vomited, but I can't remember the last time Jenna had 2 days in a row without vomiting.

We're making PROGRESS! Baby steps, but we'll take it. 4 (FOUR!!!) entire day's (3 consecutive) without vomiting in the past week! Wednesday, Thursday, Friday of last week, and Monday of this week. Will today be the 5th day?!

Jenna is g tube fed and usually vomits 2-3 times per day. We're working with GI & dietary to find a solution, but its been over a year since she stopped gaining weight. If you've seen us lately, you've likely seen us with a vomit bag in hand, or in an easily accessible spot. 9/10 times we can read the signs, grab the bag, and fight against her to hold it and catch everything. Keeping in mind that she often pushes the bag away right as she needs it. When playing, Jenna will pick up one of the unused, but readily available, bags, hold it to her mouth, and pretend cough. She knows exactly what they're for.

We've been let down time and time again after multiple medications, labs, imaging, etc, BUT maybe we're finally getting somewhere?! We're thankful that her imaging and labs have all been normal, but at the same time, that's not helping us find answers. We're being referred to a motility specialist at the beginning of next year to do further testing and hear what they think.

She's weaned off of all GI medications, and is back on the feeding pump, but whatever it takes! Some of those medications she was on since before we ever left the hospital. We initially switched to a home blended diet in May, just shy of the 1 year mark of when her weight stalled. We were hopeful that it would make a difference, but due to the thickness of it, we switched to syringe feeds. There was no improvement, but also nothing got worse, so we went with it for a while. We're currently still blending all of Jenna's food at home, but making sure its thin enough for the pump. Over this past weekend, we tried introducing a new recipe, which had less ingredients, but she didn't tolerate it at all. So, we'll be sticking with our current variety of recipes, and using the pump. The downside is, Jenna is extremely active, so using the pump for hour feeds throughout the day makes things interesting. Especially when she starts spinning in circles or moving around.

So, we're hopeful that we have a solution for the vomiting, but I'm hesitate to say that. Now, for the weight gain... Ideally, if she's not vomiting half her feed back up, she'll gain weight, right? 🙏 We've stressed over this so much.We need prayers for weight gain and no more vomiting, and to be less stressed.

08/09/2025

I HIGHLY recommend these! These have made our home blended feeding journey so much easier. We use the 16oz bottles.

They're also dishwasher safe! That was a necessity when I was searching for what to use.

08/08/2025

This is what our days sound like now. 😭

In August of 2023, we were still in the NICU waiting on Jenna to grow a bit before getting her tracheostomy. We understood that we may never hear her cry, we may never hear her speak, etc. As I've mentioned many times, we've never prayed so hard, and never have we cried as much, then when we experienced Jenna's initial hospital stay.

Jenna's Journey

11/07/2025

10/31/2025

10/24/2025

09/26/2025

09/15/2025

09/01/2025

08/30/2025

08/12/2025

08/09/2025

08/08/2025

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