By Corey Nicolaides - July 09, 2013

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).

Scene on The Island - LOST

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.

Jericho - Episode 1

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.

Phoenix - Photo Via: ALAN STARK @SQUEAKS2569 on FLICKR

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

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.

Ayla's Neonatal Ambu Bag

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

Comments: 11
Lori Tucker

Your life and experiences with this beautiful child will be such a magical experience. God is good…..all the time.

Shirley Bell

Oh, Corey, You’ve done it again ... I’m in tears as I hear your pain and frustration. I KNEW it HAD to be EXTREMELY difficult for you guys on Saturday, and I’ve been praying for you to find hope and encouragement and energy to continue on this journey. As I read this I was trying to imagine if these episodes had not started while she was still in St. Louis. What if you had brought her home and THEN they started? Once again, I TRULY Believe and TRUST God’s timing. I LOVE YOU GUYS and PRAY that you will all be home SOON! XOXOXOX!!!

Joanne Suess

Jesus said, “Come to Me, all of you who are weary and carry heavy burdens, and I will give you rest.” God is with you every day through every step forward and every step backward. May the God of peace bring you peace just for today and you can worry about tomorrow, tomorrow. God bless all of you!! We are praying that you will be bringing Ayla home very soon.

Stacy Moss

You two are amazing people and there are no two people that would be better for Ayla! Trust in God and yourselves! You have a little miracle…there is no doubt that she is a fighter!!! I’m praying for your little family! Xoxo

Don Clair

I remember this road well. When I brought the M&M home I was so happy but that day turned out to be the most difficult day of my life. Some day I will tell you why Cory. Just remember you were given this child for a reason. Perhaps it something like myself telling you it’s ok to be scared, pissed, upset and wanting to scream at God. But I will tell you it is a test to see if your heart gets hard or does the child melt the heart and you see the world as God sees us, hurting waiting for someone to hold me too and tell me it is going to be ok. God Bless you on your journey

Aunt Debbie

Corey, Alaina, and Ayla - Still praying for you all and hope God will give you the strength and energy you need at this very difficult time. Love you.

Glen Koch

Praying for your precious family in every way you need!! Known and unknown, our God sees and knows every single bit of it!

Amanda Roederer

I know that God has prepared the two of you for this time and place. He had etched his words in your hearts to be pulled out and used in these difficult moments. I couldnt help but read this and think of Christ. How he prepares this amazing place for us and waits. You and Alaina have this amazing home ready for Ayla and yet here you wait for her. Patiently with love just as Christ waits for us. You both are an inspiration. God knew what he was doing giving her to you and Alaina! Praying for you all daily!!!

Richard Young

Corey: Have been checking in with Arnie to see how things are going. Got your blog site from him today. I can’t even begin to imagine the emotional stress from all of this. Just do one day at a time and keep talking to God even it if’s angry yelling. We’ve had you and yours in our prayers since day one and I’ve enlisted a lot of my students to pray as well. In His Grip and Grace

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