Desperate -- Catastrophic Part 5

It has been nearly a year since I gave an account of what we are experiencing.

The conversations with the surgeons.

The nights when pain robs sleep.

The exhaustion of competing priorities.

The joy of adding a baby to our bundle!

The exasperation of more complications.

In fact, in my last post we expected an end to the surgical circus around the time our baby was due in December of 2024. Now we’re here, in September of 2025, still fighting the same battle.

Caleb has had six more surgeries, another infection, and now lives every day with a cage around his leg. It’s an experience extending beyond what we ever imagined.

I should have given you more, sooner, but my heart didn’t know how to push beyond the exhaustion and write. My mind didn’t know how to take enough room to actually process each round of problems. My schedule didn’t slow down and offer me space to handle it all.

But I think I’m finally realizing—that’s the point. I’m not supposed to be able to handle all of this. So many well meaning people offer the encouragement, “God won’t give you more than you can handle.” But that’s not an idea found anywhere in Scripture. It’s the misinterpretation of God promising not to tempt us beyond what we can say no to. God does, in fact, very clearly indicate that we will walk through far more than we can handle in this life.

And that’s the point.

If I can handle it all, I don’t need God.

If I am strong enough, I don’t need His strength.

If I am self-sufficient, I don’t need faith.

If I am okay, I have no need for hope.

So let me just say: I am weak, tired, endlessly faced with how “not enough” I am, and I’m not okay a lot of days.

I am often asked, “How are you surviving?” Or a version thereof. To this question, there is only one answer:

I love a God who sustains me. I serve a God who loves me.

And without my God, I would have fallen apart. Our home would have fallen apart. Our relationship would have fallen apart.

Because exactly 0% of this has been easy to walk through.

But 100% of it has been used to build, shape, strengthen, guide, and, yes, absolutely break us.

And because God is good like that, I’m grateful to be exactly where I am.

God has reminded me of my desperate need for Him. He has brought me to places of desperation often… a theme you’ll see me writing on in the future ;)

But out of desperation comes hope so sure and so enthralling.

Okay; All that being said, I invite you now to take a look at some of the moments we have lived—the days where my mind and body were in different places, the days eternity felt so close, the loneliness buried under the question, “How’s your leg?”, and the best, hardest part of it all (hint: it's this adorable baby).

Thank you for your love. Thank you for your prayers. Thank you for meeting our needs. Thank you for loving our daughter. Thank you for meaning it when you ask how we are. You are part of the way God sustains.

It may be helpful to re-read Catastrophic—Part 4 to get refreshed on where we left off. Here is an account of September through December of 2024.

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September 2024

I brought another bag full of snacks and books to the kitchen table, adding it to the pile already waiting. The surgical team said Caleb will spend three weeks in the hospital this go-around, so I have prepared to be away from home and work for that extended time.

“You know they have stores in Aurora, right?”

Seth teases me, but his comment cuts to the heart of my problem—I am anxious.

According to Caleb’s team—an orthopedic surgeon, a plastic surgeon, and an infectious disease specialist—this will be a long but beneficial step in Caleb’s healing journey. Orthopedics would go first, removing the infected hardware from his ankle and lower leg. Infectious disease would ensure the thorough cleansing of all the bone and tissue while they had him cut open. Plastics would come in a few days later and do a major skin flap, replacing the skin on Caleb’s shin with skin from his thigh. All of this had to be successfully completed before they could move on to actually fixing the deformity in his lower leg and ankle. Turns out deeps infections can make your bones heal crooked!

The thought of enduring this process, of sitting in the waiting room while Caleb undergoes anesthesia so many times—has my six-months pregnant stomach in knots. We keep thinking of this baby girl in my womb, though, and we want her to have a dad who can walk when she’s born. Heck, her momma wants a partner who can walk! So when the day comes, we wave goodbye to our house, friends, and workplace and drive across the mountains.

…Things do not go according to plan.

Most people long to hear from the surgeons as soon as possible, but I learn that an early phone call often indicates trouble. When the phone rings this time, I pick it up with shaking hands.

“Hello?”

“Hey, Rylee; it’s Dr. Stoneback. Good news, bad news. Good news is that I was able to remove most of the hardware that was in there that the infection was sticking to. We washed him out real good, got him clean, and we took some cultures first to get a better idea of what bacteria we’re dealing with so that we can fight it with some antibiotics and be sure it’s eradicated from his body.

“Bad news is that some of the new bone growth has completely closed around some broken pieces of hardware. I would drill through his bone to get those pieces out, but he’d essentially not have an ankle anymore. We’re gonna close him up, see what the cultures say, and regroup before we move froward with the other surgeries.”

I pause in my pacing, my mind racing. “You mean like send us home?”

“Yeah; it’ll probably be Tuesday before we can really come up with a new plan for Caleb, so if you guys want to go home in the meantime then we can do that.”

I feel…embarrassed. My anxiety-driven preparation had led me to pack three weeks worth of snacks and tell everyone at home, “so-long.” On the drive through the Rockies, Caleb and I had commented how it would be well into Fall when we returned home, the trees bright yellow and orange. But here we are, three days later, driving home with more question marks than when we left.

I know there will be questions. I’m not ready to answer them. People think asking questions is a kind way to engage with what’s going on—and it is, to some degree. But most people don’t know what to ask, and answering the same questions two dozen times when I have barely any answers myself feels like more than I can handle.

There’s also the issue of being so seen without being seen. Everyone knows about the leg. Everyone knows I’m pregnant. And everyone asks about those two things. But what about Caleb’s mental space? His emotional state? Does anyone care if he feels like he’s at a breaking point? What about what I’m feeling and learning through all of this? Does anyone want to know what God is doing in our hearts? What if I’m having a bad day, ready to burst into tears? No one would know because even though they say, “Rylee, how are you?” They don’t stop for an answer before moving on: “How’s Caleb’s leg?” Ah, yes, the leg. It’s broken still. And so is my heart, but I guess you’ll never know.

We come home and coop up for a couple of days.

October 2024

It takes a few weeks, but Caleb’s team feels prepared to move forward. They inform us that Caleb’s most recent imaging revealed an anatomical anomaly—where 95% of the population has three vessels that run blood to the foot, Caleb was born with two. One of them already has a little compromise from a previous surgery, so the Plastics team will move with extreme caution. They anticipate at least eight days in the hospital.

I pack up once again, though this time with far less supplies. They do, in fact, have stores in Aurora.

Now at 33 weeks pregnant, I waddle my body through the hospital to the waiting room to check-in with Caleb. Everyone smiles at me, holds open doors, and whispers, “Congratulations.” I haven’t loved pregnancy, but I do love these moments.

Caleb’s plastic surgeon comes by to reiterate today’s plan: take a large skin flap from the right thigh and close the incision, cut off the nearly necrotic skin from the shin and replace it with this new skin flap, spend 5 days in the ICU followed by a few more in a step-down unit. Then we can go home and have our baby, and Orthopedics will see Caleb in January to fix the deformity, finally. We nod along with him, trusting things will follow exactly right.

What a silly thing to think.

I spend the afternoon distracting myself with a friend in Greeley but decide to head back to the hospital with two hours to spare. I know something isn’t right when 30 minutes later, my phone rings.

“Hey, Rylee, it’s Dr. Greyson. So, things did not quite go according to plan. We made the cut around the entire skin flap on Caleb’s thigh, but then when we lifted it, we ran into something we weren’t expecting. Think of it like this: if a normal person’s vessels are spaghetti, Caleb’s are angel hair. We’re being careful, we’re working under a microscope, but two things: One, we’re not sure Caleb’s thigh would be able to heal if we remove this skin flap. Two, this likely means the vessels in his lower leg are this thin too which increases the risk of moving forward.”

I hate that word. Risk. “What kind of risk?” I dare to ask.

“Well, if we were at a 5% chance of flap failure before, we’re probably at more like 15% chance of failure now.”

My pregnant belly gurgles and twists. “Okay, so what do we do from here?”

“We put the skin flap right back down where we picked it up from. We want to watch him for seven days to see if it looks like it would heal. If not then we will select a different location on his body to take a flap from next week. If it looks good, we’ll move ahead as planned with extra caution.”

Seven days under observation? Looks like this time we’d be here longer than imagined…

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I want to take you through my thoughts and feelings of this entire stay, but it was such a long, complicated time. I’m simply not sure what to say, and I’m overly exhausted trying to figure it out (hence the reason it’s nearly a year late). Seventeen days worth of thoughts and experiences needs more room than a blog post…

So I’m sorry, but I’m taking the easy way out for the rest of this.

After seven days, they moved ahead with the surgery. The leg had such extreme swelling that they could not stitch the new flap all the way down. They completed half of the flap and left the rest of his leg OPEN—like a literal open flesh wound—for nearly a week. He had the most amazing ICU nurses who had to check the wound for viable blood flow once an hour, day and night.

There were moments of laughter when Caleb’s heart rate would spike at the end of a round of Fortnite and his nurse would come in to make sure he wasn’t having a heart attack.

There were questions of heart health as his sleeping heart rate hovered around 100bmp.

There were moments of frustration when his doctors insisted he must be feeling anxious and wanted to give him anti-anxiety medication to help him sleep. But he wasn’t anxious; he was wounded and fighting to heal.

There were moments we stuffed our faces with Krispy Kreme donuts because there was one 30 minutes from the hospital…and 17 days in the hospital means you need a treat every now and then.

There were lots of contractions as I waddled my growing belly from the parking garage to Caleb’s ICU room—a 15 minute walk across the medical campus.

There were moments of beauty as snow fell day after day.

Then there was a moment I tried not to panic. At 35 weeks pregnant, I came home for an appointment. I decided to stay a couple of days before returning to Caleb in Aurora. One night while on the phone with Caleb, I hear an emergency alert sound through the hospital PA system:

There was an active shooter in the hospital.

I sat, mostly holding my breath, praying for God to quickly resolve the situation.

A few days later, they finally discharged Caleb from the hospital. As silly as it sounds, he had to practice lowering his leg for a few minutes at a time every day until they discharged him. Keeping his leg below his heart for more than ten minutes at a time could end up resulting in flap failure. And remember, flap failure meant amputation.

We arrived home and worked to get him situated. I could barely get around myself, and I’m forever thankful to my mom for upending her life to come serve me and Caleb for a couple of months when we desperately needed the help.

We had been home two weeks when my water broke! Caleb was far from healed, and he rolled up into my labor and delivery room on a knee scooter. We were quite the show for those L&D nurses!

My “Christmas baby” decided to make her appearance on Thanksgiving Day, 2024. And for all the suffering, all the unanswered prayers, all the pain, all the frustrations… our sweet baby girl is everything we asked the Lord for. You can read my post "On Motherhood" for my newborn stage, sleep deprived, new mom thoughts on the matter.

She is a sweet reminder in the middle of the storm that God does in fact still hear us, love us, and long for us to have good things. She solidifies for us that if God is not answering our prayers for healing, He must be up to something else in the midst of it.

So we continue to wait.

Desperately.