Mirage

I’m sort-of okay at a handful of different things. I like to think that in a post-apocalyptic midwest you’d want me around because I'd be a renaissance man, a polymath. But I’m a perfectionist and a realist with serious self-deprecation issues, so I’m certain that I’ll never be good enough at a sufficient number of things to be a polymathic person, and my skills and personality don’t fit with the image of a renaissance man. Still, in dire —end of the Midwest as we know it— times, I’m your man. Keep your expectations low please, because I doubt that I’ll get you all the way to the Safe Zone. I could be a key character at some point in your journey, but I’d probably die in some accident of my own design. Because in a desperate situation I’d forego the canonical solution for one that just works, temporarily, as you’d find out in my tragic but predictable death. Like MacGyver without the handsome, or the foresight, or the mullet.

I often imagine myself in one of those situations. I used to think about being on The Island (LOST), and how useful I’d be. I’d definitely be a survivor and always one of the good guys. Then LOST got weird, so… (shrug).

I started watching Jericho, and imagined myself being one of the resourceful few who knew how to survive and protect his family. I’d have a secret cache of valuables that everyone would need and I’d be smart and patient enough to distribute them at just the right time. That show ended too early. Unfortunately the ending seemed rushed and abrupt.

When I lived in Arizona, I rode my bike to the border of the city, up onto a small hilly area in the edge of the desert. It was hot and sunny and dry, and I loved it. I rode trails to the top where I’d stop and look back on Phoenix.

I blew a tire on more than one occasion, because the area was littered with goat head thorns.

I’d have to walk my bike all the way back to my apartment so maybe it was heat exhaustion, but I’d consider all the ways I’d be able to survive in the desert. Surely I was one of the few that could last. I’d find water in the day, I’d make a fire at night. I’d use the sun as a compass and find my way back to civilization, because I have the skill (dumb luck) and the confidence (ignorance) for just this kind of situation.

A Trip to Springfield

Alaina and I left St.Louis early Friday morning and drove to our house in Springfield. We wanted to do some cleaning, run some errands, and bring some of our things home as we wouldn’t need them much longer down here in St.Louis. We grabbed a coffee and headed north. As we usually do, we listened to music, laughed at/with each other, and discussed our future. We talked about how this would be our last trip to Springfield without Ayla.

We arrived in Springfield with a sense of purpose. We needed to get everything done so that the house was prepared for Ayla to come home. We cleaned, including cleaning up after a couple of mice that moved in while we were gone. The first time we’ve ever had mice. We rearranged Ayla’s room to accommodate the Oxygen tank, IV pole, Neb machine, heart and oxygen monitor, feeding pump, and all of her other supplies. We cleaned the living room, dining room, kitchen, and bathroom. We cleaned our bedroom, and it will be so nice to sleep in our own bed again. We strategized about how we would work with Ayla in different parts of the house. We started feeling good about coming home. The doctors and nurses have mentioned repeatedly that Ayla will really thrive when we get her home, so we talked about what she might be like when we get here. We talked about how we will handle emergencies, when to call for help, and when to call 911. We’re going to have a nurse in our house every night, so we talked about what that experience will be like (It will be nice, but probably a little strange at first).

I secured Ayla’s mobile above her crib, and we stood back admiring all that we’d done for our little girl. We had a moment of relief. We’ve prepared our place, and we’ve been with her everyday, caring for her and loving her and learning how to support her.

We drove back to St.Louis, caught the tail end of a few distant firework shows, and headed over to the NICU. Ayla had been having some “episodes” throughout the day, and for the couple of days before. They’ve been a little different, but causing the same airway problem. It started with a really bad diaper rash from being on strong antibiotics and liquid protein. If her diaper was dirty or wet, it would hurt her little bum and she’d get super mad. When she gets mad, she loses her breath. As you know, she has tracheomalacia, so when she loses her breath her trachea collapses. Then she gets air hungry and panics. We have to attach an Ambu Bag to her trach and give her breaths (bag her) to bring her back up. It’s frightening for everyone involved, most of all for Ayla.

Seeing her upset and struggling is bad, but it’s so much worse when you see that terrified look on her face because she’s all out of air. Her head and face turn pale, grayish even, and her arms tighten up and her hands grip anything within reach. Her eyes widen and she stares straight ahead and her whole body just freezes, tense with fright. That’s the worst.

Ayla has been doing this semi-regularly, so when the staff at Children’s called us early Saturday morning and told us that we wouldn’t be discharged on Tuesday, July 9th (yeah, today), we weren’t surprised. Bummed, yes, but not surprised.

We’ve been preparing for the past two weeks to bring Ayla home. The ideas, plans and preparation, the hopefulness and the excitement, the nervousness, it all disappeared moments before we reached it — a mirage. What looked like home, vanished on the horizon.

And so I find myself in one of those situations. Except it’s not The Island, not an Apocalyptic Midwest, it’s not the edge of the desert. It’s totally different than those situations. It’s a time and a place and a piece of our journey, I get that, but I feel unprepared and incapable. This requires an enormous amount of emotional strength and mental stability. These are not things that I’m good at. We’ve done more in the last 98 days than I ever imagined we’d do in a lifetime. We continue to do it because we want Ayla to grow and laugh and love and be happy and be a sweet little girl. We come here everyday because we want her to know that we love her, because we want to take care of her, we want to do this together, and we want to make it home.

We Are

Life still feels like it’s on pause. It’s impossible to get work done, the house is getting stuffy and mice have moved in, money is running out, and we’re tired. Yet onward we go, following the path of this tiny little girl God has given to us. Ayla is so small, but she fills such a giant portion of our hearts.

Pray for Ayla

The doc’s and nurses have made some changes in the past couple of days to prevent Ayla from having these episodes. They’ve given her a longer and slightly wider trach, and they’ve had her on the CPAP machine. Please pray that the new trach works better, and that Ayla can come off of the CPAP permanently. Pray that Ayla continues to grow and gain weight, and pray that we can continue being patient as we wait for a new going home day.

Ayla Stats

Age: 14 Weeks
Weight: 8lb 14oz.
Length: 21.5in

As always, thank you all so much.
Corey, Alaina, and Ayla