Our Next Step: Preparing for Transplant

Why transplant?

After receiving Gabby’s MRI and Cath results in February, her Colorado team determined she is not a good candidate for the Fontan procedure. She has one functioning ventricle, and unfortunately, it has been slowly declining. She also has lymphatic malformations that put her at high risk for chylous effusions, along with moderate kidney disease.

All of this also makes her a high-risk transplant candidate, but ultimately, a transplant is the best option for her long-term health.

Why get a second opinion?

As her parents and her #1 advocates, we felt it was important to be absolutely sure we were headed down the right path. We sought a second opinion from Primary Children’s Hospital in Salt Lake, and they confirmed everything our Colorado team recommended.

Why did we switch hospitals?

I can’t speak for Corey, but for me, this felt like one of the hardest decisions of my life—and it was not made lightly. Of course we decided this together but for some reason that didn't make it feel any easier. Ultimately, it came down to where we wanted to relocate.

We are in a unique situation because we live exactly eight hours from both Children’s Hospital of Colorado and Salt Lake City. I could go into endless detail about the many factors we weighed, but at the end of the day, Gabby’s quality of life—and where our entire family would thrive—was our top priority.

I also want to say this: I deeply respect our team in Colorado. A part of me will always miss the place that mended our girl multiple times and the relationships we built there. It’s hard to leave a place you trust—a place where lifelong connections were made. At the same time, it also holds a lot of trauma for us. While we truly love and trust our Colorado team, we feel strongly that Salt Lake is the best place to take Gabby moving forward. They’ve built a strong and reputable transplant program over the past few years.

I know I don’t need to over-explain this decision, but I also know many Denver families may come across this post, and I want to be clear: this is not a reflection of anything lacking in Colorado.

It was also hard to ignore that Salt Lake ranked #3 in the nation last year for transplant volume.We were presented with two excellent options and chose the one that felt best for our family. I technically don't think there was a wrong choice in this scenario.

I prayed so hard for clarity in this decision. Gabby’s cardiologist in Billings said something that has stayed with me:

“I’ll be there for you no matter what. I don’t know that pure clarity will come—sometimes we have to trust what we do know and have faith in what’s next.”

A wise man—you can see why he’s our favorite.

I also can’t ignore how everything seems to have aligned. The pediatric heart surgeon who spoke at the Montana Brave Hearts Gala in February shared a powerful testimony about why he does what he does and how he got there. Corey and I were deeply moved by his words and his heart. I briefly spoke with him that evening, and he was already familiar with Gabby’s case. He took time to talk with me about her then—and weeks later, he provided a second opinion. He was so personable and kind; it truly felt like he came into our lives for a reason.

As a former athlete, the only way I can relate this is: it feels like we’re putting Gabby into the transfer portal. A part of me feels a sense of loyalty to Colorado, and for some reason, that leaves me feeling a little guilty for switching. I know I shouldn’t feel that way—this is our child’s life, but it’s the closest metaphor I can relate it to.

What’s next?

We will travel to Salt Lake the first week of May for Gabby’s transplant evaluation. She will have an echocardiogram, chest ultrasound, lab work, and meetings with the transplant team.

If Gabby’s HLA (antibody) levels are low enough, she should be approved for transplant. From there, they will likely order a CT scan to evaluate her chest size. We’ve already had a Zoom call with the head of transplant in Salt Lake, and our first impression was that she is brilliant, kind, and thorough. Since Dr. Chen has been in Salt Lake the past few years, they’ve been able to be more aggressive with donor acceptance, which is encouraging.

Timeline

The transplant committee reviews cases every two weeks. Once Gabby is approved, we will make plans to move to Salt Lake. I haven’t been notified of their exact schedule yet, but our plan is to bring her home after evaluation, wait for approval, and then—likely within a couple of weeks—return to Salt Lake for listing and admission. To be listed as a 1A candidate, Gabby will need to be admitted and remain inpatient while she waits. She will be started on IV milrinone to support her heart.

The current average wait time for a child her size and blood type is 1–2 years.

Currently

Right now, Gabby is running around and, for the most part, acting like a typical toddler. It’s hard to reconcile how sick she is with how she looks and behaves.

There are moments when I notice it, but it’s also difficult because being a little blue has become her normal. Lately, her lips and nose have appeared bluer than usual, and she sleeps more than most toddlers. Otherwise, she’s still our happy girl doing typical toddler shenanigans.

She scared me a few weeks ago when she got sick. It’s not a normal fear—to wonder if your child will survive a common cold or end up in the hospital. She looked pretty rough, but I was so proud of her for fighting through it without Lasix. She amazes me—battling every illness without even being able to take typical cold medications.

Lately, I’ve found myself thinking, “Is this the last time I’ll see her do this?” or “Are these our last days at home?” When I rock her at night, I try to soak in our sweet conversations and hold onto how safe she must feel falling asleep in her crib. At the same time, I dread the first night we’ll have to say goodnight in a hospital room. Anytime we spend time with my grandmas, I wonder if it will be the last time they see her. Being eight hours away will make visits nearly impossible.

The weight of how much our lives are about to change feels overwhelming. Still, we keep moving forward—because no matter what, even when your world feels like it’s crashing down, it keeps spinning.

It’s hard to balance being realistic while still holding onto hope. I keep reminding myself, “Life is what you make it.” When we take Gabby to the hospital, my goal is to make it as fun, whimsical, and uplifting as possible. Happiness is a choice. Of course, I have my hard days, but I truly believe there is something to creating and expecting good days ahead.

The things that have kept me going lately are simple: coaching Della in soccer, family game nights, and just being a mom—watching Daisy play volleyball and softball.

Most nights, Gabby insists the girls join her in the bath or shower so they can escape into their imaginary world of Barbies and mermaids. The big girls have been so good about taking her downstairs to play dress up, drive her tractor outside and simply just keeping life at home exciting for her.

She’s also gotten into the habit of wanting to lie in my bed before sleep—and how could I ever say no? Those snuggles and her hilarious nighttime conversations are moments I want to hold onto and having a feeling will continue to have in another setting but something about having them at home makes them feel more significant.

Someone might assume our home has been a sad place lately. And while we’ve had our moments, I can honestly say that in many ways, this season has brought a kind of magic into our home.

Would we normally sit around the table playing cards or living room playing games? Let the big girls stay up a little later just to finish a show together? Celebrate Gabby as she reaches her PT goals ( cheering her on to bear crawl, jump or take on the stairs)? I’m not sure.

I recently had my nieces and nephew over, and they all played dress-up and ate dinner together at the island. Watching Gabby and Lu gave me déjà vu of Kora and Daisy at that age. Having my house filled with their giggles and banter, those are the moments when I wish I could pause time. Gabby’s cousins are such a special part of her life, and knowing they won’t see her as often is heartbreaking.

But right now, we are living more intentionally—and for that, I’m grateful.

I would be remiss if I didn’t say this season has also brought some very dark days. Those are the days that scare me the most. If it feels this heavy while we’re still at home, how will it feel when we’re away?

I probably sound all over the place—happy, sad, grateful, overwhelmed. Welcome to my brain.

I know living in a constant state of fight-or-flight isn’t healthy, so focusing on my mental health has been important. Morning workouts and a few extra prayers have helped. I haven't quit locked in on my nutrition yet. I wish when I was stressed I was a gal that didn't eat as much, but that has proved to be quite the contrary. For now, a mix of Jesus, therapy, dark humor, training hard, and giving myself a little grace with what I eat seems to be the balance getting me through these days.

I’m really looking forward to this next week. We’re taking Gabby to Arizona for one last hoorah before she’s on lockdown. Her favorite thing in the world is swimming.

Her grandparents, Schultz cousins, Auntie, and maybe a few other special visitors will be joining us. We’re going to soak up every minute—making memories outside of the hospital.

What’s our plan with the big girls?

Right now, we’re taking things day by day, week by week. I don’t know where we’ll live yet or how long the girls will stay in Salt Lake. It will most likely be a lot of back and forth for all of us. We’ll keep them enrolled in school at home for now and figure out next fall when the time comes. Planning too far ahead feels overwhelming, and I can’t take on the stress of overcommitting right now.

We’ll figure it out as we go.

Moving Forward...

What gives me the most peace is knowing we already have an incredible village supporting us, and we haven’t even left yet. We are so blessed. We are surviving. We are living. We are thankful for our current time together. It's not up to us how this all unfolds all we can do is make the most of it until it does. We will get through this. At the end of the day I know we are doing everything in our power to give Gabby the best life possible and thats all we can do.

Our focus is simple: Win The Day, trust God.

Thank you for all the continued love and prayers.