There is Power in Song

I love listening to Christian music. I play music in my classroom constantly. I love the power, Gospel, and love in them. Songs move me. It is interesting how songs will just hit you at the right moment too.

Have you ever been in a moment when a Scripture verse pops up or a song comes on and it is just perfect for you situation? It is eerie, right? That is 100 percent a God-thing. God may not talk to us like the Old Testament, but He still definitely does. His Word is Him speaking to us. But those things that pop up exactly the moment we need them? He is definitely speaking to us as well. I truly believe this.

I have two examples of songs that just hit at the right moment from the past months.

The first is the early morning of Emerson's first open heart surgery to put the PA Band on. It is early, like 4:30 in the morning early. My wife, my mom and myself are in the car driving to the hospital. No one is talking. Nerves are on edge. The first song that comes on the radio is Beautifully Broken. A snippet of the song:

You're beautifully broken
And you can be whole again
Even a million scars
Doesn't change whose you are
You're worthy
Beautifully broken
You're beautifully broken (beautifully broken)
You're beautifully broken

Oh, the God who made the stars
Is the God that made your heart
And he's holding you right now
He can heal the broken parts
And make beauty from the scars, the scars
Beautiful scars!

Woah. Like really? Of all the songs, this is the song that comes on the moment we drive to the hospital for heart surgery? How calming that experience was. Still looking back it gives me shivers.

My second song is actually a song I use to blast in class all the time. I never really thought about the lyrics, I just liked the song. The song is Move (Keep Walkin'). The chorus:

I know your heart been broke again 

I know your prayers ain’t been answered yet 
I know you’re feeling like you got nothing left 
Well, lift your head, it ain’t over yet, ain’t over yet so

Move, keep walkin’ soldier keep movin’ on 
Move, keep walkin’ until the mornin’ comes 
Move, keep walkin’ soldier keep movin’ on 
And lift your head, it ain’t over yet, ain’t over yet

I was doing my "hospital walk" (literally just walk around the hospital) one day, engrossed in my own thoughts and prayers, this song came on. And it hit me hard with what the chorus was actually saying. There have been more times when I have been weak than strong through this whole experience. And this song just gives me the power and hope to keep going and to keep fighting. 

God gives power through song. The Holy Spirit uses the words to help us. And when these things happen the exact moment when you need the words, it is awe-inspiring. God is here.

Normal.

Normal. What I wouldn’t give to feel normal again. For my family, things will never go back to normal again. Worrying about Emerson’s heart will loom over us the rest of our lives. We will eventually settle into a new normal, but man what I wouldn’t give to have my old life back. 

Days, weeks, months, potential years lie ahead while we wait in Loma Linda. We’re frequently asked “why can’t you wait at home?” Emerson requires round the clock care, and she’s hooked up two continual medicines that keep her heart pumping as well as respiratory help. While she is on these, we have to stay in the hospital. There’s no chance her heart will be able to get off these medicines. Until she gets her new heart, we need melrinone and epinephrine to keep her heart pumping strong. 

After transplant, things just won’t go back to how it used to be. There will be many food aversions we have to stay away from. A new diet lies ahead for us and new knowledge of everything she will put into her body. Grapefruit is a big one. The irony is that is when I was pregnant with E, I craved grapefruit and grapefruit juice. Maybe it was a precursor of what was to come. Certain foods could mix with the medications she’ll be on and cause a reaction. 

Which brings me to the medication part. Did you know after transplant a kid will be on daily medications that will total between $4,000-$6,000 a month (pre-insurance)? A month! Anti-rejection meds will be a big part of that. She also will not be able to receive live vaccines for fear it could attack her new heart. 

It seems so unfair that Emerson only had 3 months of “normal”. Like she was robbed of something. You never imagine you’ll go through something this extreme. Sometimes I still can’t believe this is happening and I wish so badly I could wake from this bad dream. 

No. We will never have our old normal again. Parents who have healthy kids, hug them a little tighter today and consider how blessed you are. What we wouldn’t give to have that for our girl. Thank you Jesus, for carrying us when we can’t stand from the weight of the world on our shoulders. 

Home away from "Home"

It's quiet.

Too quiet.

Eerily quiet.

As I lay in my bed in Vegas, trying to get enough sleep for work the next day, my mind goes. Most nights getting into bed is the same routine. I get into bed. The only sound is the sound of the fan blowing. And I think. Some nights bring tears, but all nights bring sadness. I try not to think, but it is impossible. I lay in bed, and I don't have my wife next to me, and I don't have my baby next to me, and I don't know when that will be again. It's just me. I don't know the last time I slept well. It wasn't meant to be like this.

You see, the days I work and I keep busy. During the evenings and nights, I keep occupied with things to do. But bedtime? I am forced to lay down in the dark...and it is hard not to realize the gravity of my situation and re-live it all. My wife sleeping next to me brings me a senses of comfort and calm. She is my rock. Her presence next to me eases my mind. Without her, I have to fend off my own self; and that's never good. It wasn't meant to be like this.

This is a reality that I have kept telling myself over and over and over again that I am going to have to live with, and I have no idea how long. The reality that I live in Vegas during the week, and my everything is three and a half hours away in a different city. The reality that I will spend more days on my own than with my family from now on. It wasn't meant to be like this.

Last week, our cardiologist told us that it has been enough time to see if the PA Band would re-shape Emerson's heart. Whereas the band has been a success in terms of her doing better than when we first brought her in, the band isn't re-shaping her heart. This means for sure she needs a heart transplant. In the back of my mind I knew she needed a heart, but you have to hold onto this little shed of hope that maybe this would work. It is a cold slap in the face hearing this again. You know that this is what is needed in order to save her life and for to be "normal" again (even though we will never know "normal" again). But you know there can be complications with this, this is something very major. You think of an organ that pumps all the blood and oxygen to the rest of your body, and this needs to be taken out and a new one put in, and that is scary. You just have to put your faith in God that He has got this. Emerson could be waiting for a long time. We just don't know. And until then, I live this life that I must. It wasn't meant to be like this.

I have good days and I have bad days. I have days where I have come to terms fully with what Emerson needs and our situation. Days where I just say we will get this heart, and she will get better, and we will bring her home and we will be a beacon with everything that we have been through and learned, and we will help others. And I have days where it hits me like a truck. I question. I want answers. I want a time line. I don't understand. I plead with God. I cry. I walk around and try to act like everything is fine, but inside I am broken. It wasn't meant to be like this.

I have always been more transparent in my writing. I don't want people to see me and see that I am broken and worry about me. As funny as it seems, I don't want it to be weird and uncomfortable with other people. I have always internalized things. So I write. I let it flow. I don't ever think, I just write. It helps to write.

It wasn't meant to be like this.

Making Lemonade

As a new family you never think there will be a time you won’t be together. Sure, there may be a weekend or couple day trip that could happen, but for the most part you always envision you will stay together. What Brandon and I have to do now is anything but ordinary. Set aside the medical aspect of our life, we’re both still living in the U.S. just not in the same state. This concept is so odd to me. I think I could grasp it more if it were international or military related, but that’s not our situation. Now add in the medical aspect and you get a living nightmare. A new family, separated by hundreds of miles, as your daughter fights day in and day out in the hospital awaiting the gift of a new heart. Life isn’t supposed to be this way. 

We don’t have the normal milestones a healthy baby would have. By four months old, Emerson should be well on her way of enjoying tummy time, beginning to explore food, and getting more strength in her muscles. How we crave to see that happen, and eventually it will, but not in a normal setting. We get excited these days when we can just hold her, or she plays with a toy hanging oxygen wires over her bed. Life isn’t supposed to be this way. 

We knew this was going to be hard, but until the separation became a reality, I don’t think we knew just how hard. I will eventually settle into my own routine and way of life in my new “home”, but nothing is ever going to feel “right”. When all of this started, I lost sleeping every night with Emerson on my left. Now I’ve also lost Brandon sleeping on my right. Life isn’t supposed to be this way. 

Yet through it all, God remains the same. The same God in Vegas is the same God here with me in Loma Linda. The same God who safely guided us to the right doctors in Vegas is guiding the doctors here in Loma Linda. The same God who has performed miracles in Vegas is the same God who performs them in Loma Linda. The same God who heard my cries of despair and heart wrenching pain in Vegas is here in Loma Linda to provide the same comfort. I know God is here. I feel God is here. I see God is here. This is the strength that keeps me going. I frequently hear “I don’t know how you’re doing this,” and the simple answer is- I’m not. God is. God chose Brandon and I to be Emerson’s parents. To raise her, protect her and be her voice when she can’t speak up. As long as she lets me, I will speak for her. I will always be her biggest advocate. 

So I’m going to make lemonade out of the sourest lemons life has given me, and hopefully along the way, I can show others how real God is and how much He loves them. Let’s see how sweet I can make this lemonade, because let me tell you, once I’m finished, it’s going to be the best damn lemonade you’ve ever had. 

Back to Vegas and Work? :(

I don’t know what’s harder…

Coming or leaving?

The obvious answer is coming. That day officially changed everything for the rest of our lives. That day will never be forgotten. You all know about that day.

But don’t let that fool you. As I head back to Vegas, tears flow from my eyes and my heart hurts, this is hard. Very hard. For 6 weeks I have been there for my daughter and for my wife. For 6 weeks, I show up every morning to the hospital, hopefully to those wonderful Emerson smiles and joys. For 6 weeks, I met with doctors, spent hours each day in the hospital, and Andrea and myself created a new, albeit temporary, lives for ourselves. For 6 weeks, we got to know the area, where to go, where to shop, where to eat, and created our own little routine. For 6 weeks, every single day, we had each other. For 6 weeks, we leaned on each other, cried on each other, slept next to each other, encouraged each other, laughed with each other. Family is everything. Being displaced for 6 weeks is a long time, and we did it, and we have made the “best” out of it. And this is still only the beginning.

I left Vegas and my home and my friends and my job the day that all of this happened. And I have not been back. I have never thought about going back. I didn’t nor do I want to go back. But I have to. I have to for my family. I know this. This does not make anything easier. 

My wife is a rockstar. There is no one else I trust most with staying back and handling “things”. She is strong. She fights for E. She knows the routines and the hospital. She knows rounds. She knows questions to ask and what to look for. She has her notebook with information and notes from EVERY DAY of rounds. The attending doctors literally want to wait for Andrea to be in the room to do rounds, not me. That is my wife. For real, God knew what he was doing.

The very real thing is that I would not leave if I didn’t think my daughter was in an okay place. I know she is critical. Anything, including too much feed, could set her way back. I know this. But I needed one good week from her in order to go back. I needed her to show me one good week. And this past week was good overall. She smiled every single day at some point. She played every single day at some point. She was active. I got to hold her often. She feel asleep in my arms a few times. This was a good week.

But man, am I going to miss the daily smiles. The showing up in the morning when she is awake, and walking to her bed, and her looking at me, and realizing who I am, and just giving me the biggest open mouth smile with her arms and legs going crazy. Just telling the world "Hey Dad! This is my Dad!". Just knowing that my daughter KNOWS that I am her dad and how happy she is to see me. That. Is. Everything.

I am trying to figure out how I am suppose to go back to teaching with this. The honest question is how do I care about other kids when my own baby is in the cardiac ICU in California?? And I don’t have the answers. I know that I care. I know that I care about teaching and my job and I want the best out of my kids. This will never change. I know me. I know that i will need help. I am blessed with great and amazing co-workers. I know I will need prayers. I know I will need patience. I know I will need understanding. 

So, the next part of our journey starts. Me being back in Vegas and working and teaching; coming out on the weekends. My wife in Loma Linda watching and loving on and being with Emerson every day. And more worries from me come. I will always worry about Emerson and her health and well being and how she is doing. Now I worry about not being there for my wife. She will be by herself, walking by herself, going to the hospital at night by herself, sleeping by herself…there is lots of worry from me with her being okay, physically and emotionally.

Guys, I need help with continual prayers during this next phase of our journey.

Hills and Valleys

As an adult, I love rollercoasters. I love the twists and turns, I love the adrenaline, I love the thrill, I love laughing and screaming when I’m on them. As a child, I was absolutely terrified of them. Growing up in Cleveland, we were about an hour away from Cedar Point, and our whole family would always spend a day there each July. I have very fond memories of our yearly family trips. So you would think, going there every summer, I grew up loving them.

I can still remember the first time I actually decided to ride a rollercoaster. Not some little kid one, or one that wasn’t too thrilling, my very first “adult” rollercoaster. I had just finished my 5th grade year and was 11 years old. At the time, the Magnum was still the biggest coaster in the park, and I decided I wanted to ride it with all my older cousins and brother. If they could do it, why couldn’t I? Waiting in line was torture. Each step we got closer to riding, I began to question my decision. What in the world was I thinking? I remember looking at the red track, hearing the coaster zoom by, and feel my stomach drop. Pretty soon it was our turn to load and I knew I had a decision to make: get on or walk through and let it get the best of me.

As I was buckled in, I was trying my best not to cry. I gripped the bar in front of me (as if this would somehow calm my anxiety), heard the attendant do his announcement, and felt the car begin to exit the loading dock. For sure no turning back now.

If you’ve ever been on a rollercoaster before, you know that soon after the ride begins, you’re taken to the biggest hill the coaster has to offer. We begin to climb the hill and I hear the gears turning and taking us up to the very top. The mantra in my head was something like “Keep your eyes open. This won’t be so bad”. As we reach the summit and take the first terrifying drop, I scream. Not out of terror, but of excitement! This was amazing! Each quick turn and hill was exhilarating. I was actually sad when it ended. As we pulled back in, I couldn’t wait to get on another one.

So what was I so scared of? I had built up this “monster” in my head and had been scared of rollercoasters up until this point in my life. I had spent so many family trips not experiencing the full capacity of each day. Now that I knew everything was in my head, I had nothing to be afraid of.

My life right now is a rollercoaster. Never in a million years did I think this is what I would be going through. Sure, this is not a thrilling coaster I would ever want to experience again, but I look towards the end. The end where my family can be back home in Vegas, all of this behind us, and I can say “Wow. We did that. And we’re still standing, stronger than ever.”

There will still be many more hills to climb and summits to reach. With those, there will still be exciting moments when Emerson gives one of her classic smiles that melts your fears, or stares at her hands with such awe and intensity that you can't help but smile. There will still be the drop that makes my stomach turn. But I’m not focused on those. I’m focused on the experience as a whole. That those who have chosen to ride with us, do so knowing the twists and turns. And will be there and be able to say, “Yeah, I felt each one of those with you.” While no one in our friends or family fully can comprehend what Brandon and I are going through (not a dig at you guys- we love you so much and need your support more than ever), we feel blessed enough that so many people have willingly joined this ride with us. Not because we asked you to, but because you want to experience the highs and the lows.

Who else knows suffering and feels each pain we do, not only feels it, but takes it away? Jesus. We’ve spent countless hours crying out, begging for healing and a miracle. We’ve felt the gentle spirit of Jesus calming us, and carrying us when we were too weak to stand. Jesus knows how this ends. Emerson is a child of the King. He loves her more than we do. And He’s watching over her every heart beat. So if He’s the one who created it, what should I be afraid of?

One Month

One month.

One month today we came out to Loma Linda and we haven’t left.

We are on our 5th week with our 5th different attending doctor.

We definitely know this hospital life now. We know the daily. We know how things operate. We know the medical language and what is going on. We know when nacho day is. We know the nurses. Have actually made pretty good friends with some of them.

Is that good or bad?

There are so many things we have learned along the way. In terms of life lessons. I will never take for granted again of having a child, and a healthy one at that. I will never take for granted just the pure ability to hold my child whenever I wanted. How I yearn for those days. I now know those were the good days, and I 100 percent took them for granted. The days of coming home late from teaching and then coaching and just telling Andrea, “It’s okay, I will hold her tomorrow”. And you just think those days will always continue. Something like this happens, and you never in a million years would have guessed this. Never.

One month in and it doesn’t get any easier. And I hurt. I hurt a lot. I hurt all the time. And it just builds and it builds and it builds....it doesn’t get any easier.

The hard days are the days when she has bad days when she just had some good ones. The days that her heart rate is lower, and you can tell she is content and calm, and the way she looks at you and the smiles that she gives. Those are the good days. Those days we cherish. Those are the days we want Emerson to continue to have. I mean just selfishly, she is the darn cutest kid in the world, and those smiles and those clear eyes are magic to the heart.

Unfortunately, not all days can be good days. When she has bad days, heart rate is more elevated, she can’t calm down, she is fussy, she cries, she gets drugs, she doesn’t smile, she just doesn’t look like herself....those days are really hard. And those days become harder and harder as they turn into multiple days in a row.

I don’t mean to get sad or down. I am only trying to express how hard this is on the daily. I am only trying to be real, to let you into our reality. I love my daughter more than anything, this will never change. I will continue to be here for my daughter, to help fight with her. This will never change.

But.

I miss Vegas. I miss “normal”.

A Father’s Heart

I love my daughter.

I love my daughter greater than I ever thought possible.
I love my family.
I love my wife.
But my child, my own child, I love more than anything.
I didn’t know that this type of love existed.

This has proven more so the last two days here at the hospital in Loma Linda. She has been more awake, more cognitive, and much more smiley. And let me tell you, she LOVES her dad. She locks eyes with me and will hold it forever. She will follow me with her eyes as I walk around the room. And she loves to give me smiles when I come back and make eye contact with her.

At this moment in time, there is nothing better than that. Nothing.

I love being a dad.
I always want to be a dad.
I thank God for giving me this opportunity.

God,
Keep wrapping your loving and healing hands around my daughter. Please help her fight, please help her body, please help her rest. I love you God, and I am asking you this please.
Amen

Nights and Mornings

It has been 3 weeks now since this whole nightmare ordeal started.

3 weeks.

Nights and mornings are still the worse. These continue to not get better for me.

We always come back between 9-10 pm to say goodnight to Emerson and to say a little prayer for her. It is always hard to leave her for the night and we just pray she has a good night. We pray that we won’t get a phone call in the middle of the night. There are so many worries and stresses leaving the hospital at night. If she is having a bit of a fit or struggling herself (crying), it is even extra hard to leave for the night. We have often left in tears or gone back and cried. It is really hard.

Sleep brings relief. I have not had one dream about this whole ordeal or nightmares. Sleep has brought me relief from what is going on. My body and my mind are able to relax. I am able to sleep.

However, waking up immediately brings you back to where you are and why. It is hard to get out of bed. It is hard to not keep sleeping. It is this huge weight over me. I struggle. We need to get to the hospital and see how her night went and how she is doing. Every morning waking up is a constant reminder that my daughter is not with us, that she is in the hospital fighting for her life, and this nightmare continues for us. It is really hard.

I am learning as a parent it is really really hard to be so powerless. I literally can’t help my child. When she is crying (she is still not making a ton of noise due to being intubated for weeks), and she is staring directly at me, and she is in pain, and she has big tears rolling down her face, and I know she needs me and wants me, and I can’t help and I can’t pick her up, and I can’t bounce her, and I can’t do anything but rub her head and tell her its okay, dad is here. It brings tears to my eyes as I type this. This is my first born child, this is my everything, and I can’t do anything....it crushes me.

Still, I stand strong for my daughter. I pray for her constantly.

God please help us.

Peace

“And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:7

This is my verse for the week. It has been a tumultuous week with Emerson. We started early Monday morning with her PA Band surgery. Many hours of just waiting to see her again, knowing when we see her she will have a large incision down her sternum. The surgery seems to be doing what the doctors had hoped, and for this we are grateful. The next event was to finally get the breathing tube out, which has been in since September 24 in Las Vegas. As you can imagine, many tests and labs are done to make sure she is fully ready for it. It’s been 24 hours, and her stats still seem to be holding steady. This also meant there was a chance for us to be able to hold her. Yes, she’s still hooked up to many monitors and IV’s, but with the tube out, there’s more freedom to move. This morning, I had 10 precious minutes with her. Enough to make my heart full again. My arms have been missing this sweet girl.

While all those are very good things, we’ve also had some difficult hours. The PA Band surgery is still a very experimental surgery in terms of children with dilated cardiomyopathy. The surgery itself has been around many years, but used for different situations. Emerson is the 6th surgery that Loma Linda has performed to treat dilated cardiomyopathy. Because the surgery is so new, and she was able to get extubated, this drops her transplant status from 1A to 1B. This came as a shock to us. Throughout the process we kept asking, “Does anything change her status?” And we were always told “No”. After all this happened, we were told her status goes down. Obviously we feel mixed emotions about this. She is still a critical patient, but with the experimental surgery and extubation, she’s been holding stable. Could this PA Band potentially reshape her heart over time and she doesn’t need a transplant? Maybe. Could she get worse and go back to 1A status? Maybe. It’s all just a waiting game right now. Wait and see how Emerson responds and shows us what she needs. We just want answers and to know what the goal is.

Emerson has also been on various opioids since this started: Fentenayl, Morphine, Dilaudid and Precedex. These were all to control pain and anxiety to keep her more sedated. In order to extubate, she couldn’t be on anything to sedate her for fear that she wouldn’t breathe on her own afterwards. They weaned her hard and fast, in less than 24 hours. To help the transition, they give her Methadone to try and counteract any withdrawal. Last night, one of her doses was skipped due to a lower heart rate. When Brandon and I came to say goodnight, we knew something was very wrong. Her eyes were rolling back in her head, she was sweating and thrashing around. She was going through a withdrawal in front of us, and all we could do was try and pat her to calm her down. The whole episode lasted about 10 minutes, and were some of the most heartbreaking 10 minutes we’ve ever encountered. Since then, she hasn’t had another episode.

How does peace fit into this whole week? In every day, every moment that we lived. I know literally thousands of people have been praying for our family. I have also spent countless hours in the throne room of Jesus, begging him for healing for my girl. And the way He’s been answering me is through peace. I have truly felt the “peace that passes all understanding” this week. There is absolutely no reason at all that I should remain calm during this time. Yet through it all, God is faithful and calming my soul in a way only He can do. Am I still scared at times for what may come? Of course. But it’s not an all-consuming fear in my daily routine because my heart and mind are guarded with His peace.

2 weeks today and surgery!

I texted Dr. Mayman today at Sunrise to keep him updated with the surgery but also to say I can’t believe it has been two weeks that we came and paid you a visit.

He called me and we talked. I know I have said it before, but I will say it again, I love that guy.

So...to the surgery for the PAB!

In today’s world, the OR nurse will actually text you as best as she can as the surgery is going. So we got texts like “surgery has started. Emerson is doing well”...”surgery is ended. Emerson is still doing well”....”Emerson is being brought up to wing, please wait for doctor”.  We were in the “waiting” room (a small room with not great ventilation, been there plenty of times in 2 weeks), and sure enough Emerson gets rolled on by us. The surgeon doctor tells us surgery went well and he will be back to talk. Surgery did not take as long as we thought it would.

Doc came back and told us surgery went as well as expected. When the band was put on, her blood pressure immediately got better. However, with the band, it takes about 24-48 hours to settle in, and with this her numbers can be all over the place. I was talking to my pops, because he gets me, that I just want to know now if it is going to work or not. I am very impatient and can’t stand all this waiting around. Is this band going to hold and work??

Well, it will take another day or two to really find out. Right now, everything looks good so far.

My baby is a fighter.
My baby is strong.

The gigantic prayer at this time is that the PA Band works well enough that we can get the breathing tube out, with some other medication, and we get to hold her again. Oh does mom and dad need to hold our daughter so bad. And I know she needs it too. It has been two long weeks and counting. At this point, the days just blur together.

I know this is a very trying time in our family’s life. We never ever ever thought we would be at this junction.  And we thank you for allowing us to share and for all of you to care enough for all the well wishes and all the prayers. We really can’t thank you enough.

But just know, as time moves on, Emerson still needs all the prayers that we can muster. It is going to be a continual daily fight.

Peace and love.

PA Band Surgery - October 8th

There are so many feelings and emotions to be had knowing that my 3 month old baby is going to have heart surgery tomorrow. A part of me is very scared. A part of me is relieved. A part of me is nervous. And a part of me just wants to disappear.

I know that she needs to have it. I know that we have to give her the chance. I would do anything for my daughter in order to make her health better. I would give her the world if I could.

This pulmonary artery band (PA Band, PAB) is still very much experimental. There is so little research on it, because the case study is so low and its so recent. This is so being that there just aren’t that many cases of infant left ventricle dilated cardiomyopathy (LV-DCM) every year. We have gone over the stats, you all now by now, still just blows my mind. (Why, right?) The nurses that we have had the last two days have literally researched and printed articles for us. They are reading up on it as well; this is how new it is. That alone is scary. The fact that we signed waivers so that they can send her information to Germany. At the very least, I want to help future endeavors in this procedure. But, silver linings playbook, there has been some success in this procedure. They wouldn’t be doing it if they didn’t think that it had a chance of succeeding. By the grace of God, I hope it works.

So, we are going to get to the hospital at 5 am tomorrow morning. We want to make sure that we can see her, pray over her, and walk her down to surgery. The surgery itself only takes about an hour. But there is the set up, and the monitoring for an hour, and the getting her back up...so it will realistically take 4-5 hours before we see her again. There really isn’t more that they can do surgically, besides a heart transplant. We need this to work.

We hope.

We pray.

We fight.

God bless you sweet Emerson on your journey with this. You have your parents, your family, your friends all praying and fighting with you. 

I love you my daughter of mine.

Surgery is Set - October 5th

Today was a good day for Emerson.

She slept, she was awake, she pooped, we watched baseball, she gave daddy a few smiles, she had everything changed (blankets, tubes, tape around her mouth), all while keeping her heart rate down and moderate. She was even in the low 100s when she was in a deep sleep.

She was moved last night down the hall again to room 9, literally the last room. The end of the hallway kind of gets forgotten about. The nurses are not suppose to leave the room with Emerson, a few times our nurse had to stand at the door and yell "Hello! Anyone! I need meds!". There was just no one down on our wing. The main nurses station is in front of rooms 1 - 5 basically. The reason for this is that another 13 year old girl got a heart transplant (which is exciting in itself), and a few other babies had surgeries. So rooms 1-4 were very busy today. So, Emerson is not on the top of the list in terms of management at the moment, and her numbers look good still, so I guess that is a good thing. Still, room 4 is a good room, and I do miss it.

We found out from our nurse because she got a memo saying to stop Emerson's feeds at midnight on Sunday that she will be having surgery on Monday. We are excited about this, even though it is surgery, because we have direction. This is until we actually met with the surgery doctor himself who will be doing the surgery. The surgery is called a PA Band and the surgery itself has been around for a long time. However, it is fairly new in the game of dilated cardiomyopathy. A group in Germany started to do them, and found some success, and so Dr. Bailey (the guy who basically started heart transplants in the 80s at Loma Linda) went over to Germany to check it out. He brought this surgery to Loma Linda now. The doctor going to do the surgery has only done it 3 times in the last 2 years; all different circumstances, all with positive results one way or another. And he said that this is major surgery. Still, there is not a lot of research behind this type of procedure with what Emerson has. In fact, we are even signing a consent form so that they can use her data and information, and send it to Germany as well. He told us that it is a 50/50 chance that it works. And by "works", it means for a certain amount of time....even if that is just weeks. We knew that this procedure is meant as a stop-gap until Emerson can get a new heart. I just had my mind around that this surgery would have better odds. This definitely shell shocked us. We cried.

He went through other medical procedures that have been done. Most of them either don't have good success rates, or just aren't done on small babies such as Emerson. Take a VAD, this has high success rates in older children, however, they don't make VADS small enough for Emerson's heart. However, Emerson's heart is so bad that something needs to be done; and so we head into this experimental surgery and see what it has to offer.

I still take stats like 36 babies out of 100,000 get dilated cardiomyopathy specifically. I take into account that both our families don't have heart disease like this. I take into account that really nothing medically proven can be done, and we just need a heart. I take into account how rare this all is, and I am still having such a hard time with it. When I look at my daughter and her beautiful face and her beautiful smile and her beautiful eyes, and her little personality coming out, I just can't stress enough with how much I need her in my life.

And so, I pray harder than I have before. I place my hand on Emerson's heart and I beg God, I demand God, to please provide a miracle and heal her heart. I teach about miracles all the time, just please grant me one. Use my hand and heal her heart. Please.

Control

Control. We all like to feel we have it. For me personally, I am one that likes to be in control of the situation. I like driving my own car. I like feeling that I have a say in decisions. Maybe this part of the reason I’m a teacher, I like managing things my way. I have always been this way, even as a little kid. If I wanted something, I would stop at nothing to get it. Some may call that being stubborn ;) my family would tell you that’s very accurate. Though I don’t follow/read into much about horoscopes, my sign is a Taurus- the bull. So do I have a strong personality? Can I be considered hard-headed? Without a doubt.

All of those qualities mean nothing in the situation we are in with Emerson. I am not calling any shots. I am not making any decisions for her, rather being told what the decisions are and I just sign consent. This is something I’m struggling with big time. When Emerson was home with us, I could make all the decisions she needed. Time to eat? Time to nap? Time to change the diaper? I got this.

So relinquishing control, and having to do so rather abruptly, is a big adjustment for me. This is definitely a lesson God is trying to teach me. Because at the end of the day, He is in control of everything. Is it easy to admit this and let go? Absolutely not. I find myself still trying to cling to any sort of control I may have. Which is literally zero, but I like to think I have some.

Obviously this is a very new “season” for our family and we are trying to just go with it. But I know through it all, the even bigger lesson I’m supposed to get is how to let go and fully trust God is watching out for us. I know He is, with everything that has happened over the last 11 days, there’s not a doubt in my mind God was guiding us and the doctors to get us where we are. I’ve mentioned this before, but God is in even the little things and I can see Him working. I just have to take a step back and let Him do it. Because at the end of the day, who’s decisions are going to be what’s best for Emerson? Surely not mine.

Thoughts - October 3rd

For me personally, today was a rough day. The last 4 days have been pretty good and stable, and this morning we walk in with news that wasn’t trending that way. It was her first really bad night. Emerson threw up a couple of times in the early morning, and then a couple of times when we were around in the morning. This was concerning. During the night, they kept bumping up Emerson’s feed for breast milk. The doctor wanted to push her. Apparently her heart couldn’t handle the extra stress with the work of the stomach, and her body just wasn’t having it. They stopped feeds during the night. Also, her x-ray from the morning came back with some fluid on the lungs. So, the doctor upped her vent settings a bit, and re-started the feeds, but at a much lower rate again (10 mL an hour...they were up to 35 mL an hour during the night). And there was no way that she could get the tube out. It just seemed like a real step back for us as parents. It was a real bummer.

On top of that, her heart rate was pretty elevated the entire day. She just wouldn’t settle down and take a good nap. They would even give her a little extra “something” and she still wanted to party party. For her dad, it made him nervous the entire day.

On a happy note, we did get some real Emerson smiles, or as best as she could with the breathing tube. She even gave some to one of our nurses as well. It just melts your heart. You see your daughter smile at you like “Hey Dad!” And you just want to hold her and snuggle her and take her back home and go back to how things are. It brings joy to my heart seeing her smiles, but also tears to my eyes that we are in this setting.

But that is not real life anymore. Real life is our current situation that we are in. And it will never be nothing but suckiness. Every day I wake up not in my own bed in my own house with a Rocky cat by my head, is a sad day.

But we fight for E. We know E needs us. We know E needs our prayers. We love E with all of our hearts, and we will do whatever we need to do to be with her.

Today's Update - October 2 (and bonus! more of my thoughts)

The morning was again full of hope and promise. Our attending doctor still likes her respiratory numbers, likes her other organ numbers (especially end organ numbers), likes her feeding numbers, likes her heart numbers, and still wants to proceed to get that breathing tube out. Emerson was scheduled for an echo in the morning, and that would dictate the next steps. Our prayers is that the echo is the same at the very least, and a little better at the very best. So, we hoped and we waited for hours for that result to come back.

Andrea and myself are in the room with Em when she comes back. Em is sleeping, Andrea is writing in our blog, and I am doing a crossword (I am not very good with those, or just words in general). Our doc pops in and tells us the echo is essentially the same. Okay. We have learned in hospitals, especially critical states, and Dr. Mayman from Sunrise telling us, that same is good. So okay, we will take same.

Because it is not worse, she still wants to push for getting that tube out. They have backed off the vent but also backed off heavy meds. By far the saddest part we are seeing now is that Em is starting to feel it, and will cry. It is THE most heart breaking thing ever. It hurts our hearts that we just can't pick her up and comfort her.

Our doc and the surgery team were meeting today at some point to discuss potential outcomes. One option is still to wean her off vent, let the heart medication do its work, and see what happens. And wait for heart transplant. Another option is to go into surgery for a PA Band. This band helps the function, the heart could technically still get better with it, or it can hold over the heart until a transplant. I asked Dr. Mayman about it, and he said they discussed this option, but it is fairly new for dilated cardiomyopathy and Loma Linda has done more of them.

We have been told that we will know the direction tomorrow morning at some point.

The more I look into her diagnosis, the crazier it is. Just the numbers themselves of babies with dilated cardiomyopathy is crazy. Like 0.000012 chance of just getting cardiomyopathy, forget the dilated part. Usually when this is diagnosed, other (end organs) are starting to shut down because it is so hard to diagnose. Routine checks with the heart (listening to the heart) won't dictate anything, and the heart won't be checked on unless there is a family history. So, parents in our position usually do not fare well with their babies. The nurses have told us the same thing as well. For some reason, this sickness pushed Emerson over the edge and this was able to get caught a bit earlier than usual. This could very well save her life.

I can't stress enough the importance of family in our lives. Family has been nothing short of amazing. I want to give a special shout out to my sister Kelsee. She literally stayed with us a week straight. She was there from the very beginning, with the first tough days of bad, bad news, and to her stabilizing. She was able to talk with the nurses and doctors and be apart of rounds and to help us out medically. I wish I could keep her around the whole time we are here, but I know we can't. I just want everyone to know how much we appreciate and love her. ( and yes, the rest of the family as well)

I still am trying to figure out the direction God is going to use this in our lives. Because believe me, whatever happens, and I know my wife would agree, this is going to be something we are going to advocate the rest of our lives. Someway, somehow, we are going to get involved with children and cardiomyopathy. I don't know how, but I know we are going to help others going through this same thing. Because the road is long, the road is hard, so many tears, so many thoughts, so much crying, so much anguish, so many fears, so many worries...we now know.

We fight as one. God please help us.

1% and My Faith

1%. That’s it. There was a 1% chance when Emerson was born that something to this extreme would happen. We didn’t know this when we first got pregnant with her, but if you were given 1% odds, you’d take the risk, wouldn’t you?

We’ve talked a lot with doctors and nurses, not only about the path we’re now on, but how many times they’ve seen a case like hers. The nurse we had yesterday, who has been here 14 years on the same unit, has seen 3... 3 cases like Emerson’s. And each diagnosis and treatment is actually different. That’s crazy for me to try and comprehend. Doctor’s are lead to believe she was actually born with this condition and just took a while to present itself. With the size of her heart now, it doesn’t just happen acutely, it has to build over time. Our little girl was just compensating along the way until she couldn’t anymore.

As you’ve read in Brandon’s posts, when we heard this news we both just fell to pieces. When you’re thinking your daughter is dehyrdated, you’re not really thinking anything else could be wrong. Our journey went from one moment thinking we had given E a cold, to the end of the week being listed for transplant. In a way, I think we’re still both trying to digest this news. But I knew I had to be strong, and dig down and find strength I didn’t know existed. This is where God stepped in, in a big way.

Once we told family and friends what was going on, everyone started to send prayers on behalf of Emerson. Now I know prayer is powerful, and I’ve said this before, but it is the only thing that is keeping me going at this point. It’s how I wake up in the morning. It’s how I can keep getting bad news. It’s how I can ask doctor’s questions no new parents should have to. It’s how I can support Brandon when he’s weak. It’s how I can simply function. Without literally thousands of people praying for our situation, I would not be able to do anything. I’d just lay in bed all day and cry.

God had totally had his hand in this entire situation. What made Dr. Fox in Summerlin even think to check her heart? What were the chances the anesthesiologist who intubated Emerson was a student’s dad? What are the chances we meet Dr. Mayman, the cardiologist who diagnosed her, and he is the most empathetic man I’ve met? What are the chances we get flown to a religious based hospital, with Bible verses over the doors? What are the chances that our new doctor was one of Dr. Mayman’s students?

I hope people can see my faith in the midst of the struggle and know it’s real. Do I still get angry? Yes. Do I still question “Why did this happen to us?” Yes. But at the end of the day, do I know there’s the creator of the universe who loves Emerson more than I do? Yes. And I rest in His promises.

A Mother’s Heart

I always thought I would be a young mom, have kids in my early 20’s and be done by the time I was 30. God had other plans, as I was 30 when I had my first baby. Looking back, I wouldn’t have changed this for the world. I grew so much in my 20’s to learn about myself and who I was, and these experiences helped prepare me for the mom I am today. I think I’m a pretty good mom.

I love my baby girl more than anything I ever thought possible. From the moment I found out I was pregnant with her, I loved her so much. I felt her first kicks when we were at a Styx and Don Felder concert (girl has good taste). I didn’t think my heart could love her anymore, then I saw her for the first time. Floods of emotions hit me. My baby girl was finally here after months of anticipation. Our family had started, and I soaked up every moment with her.

Suddenly your life is changed forever, for the good. It’s not about me anymore or my schedule, and I was perfectly ok with that. I didn’t mind waking up through the night to feed her. I didn’t mind getting less hours of sleep. Anything to make sure she knew she was loved and cared for. I never wanted to leave her, ever. Not even to go to the grocery store. I didn’t even want to think about going back to work, because I didn’t know how I was going to leave her all day. Emerson clearly didn’t want me to go back to work either... but she didn’t have to be this extreme.

My heart hurts for so many reasons. Everyone keeps saying “I know you’d take this pain from her if you could,” and that couldn’t be more true. The hard part? She’s so young and doesn’t know what’s going on, she can’t verbalize anything. As a 3 month old, you shouldn’t have to experience pain to this measure. 

The feeling of helplessness doesn’t cut it. Besides be here to comfort her and pray over her, there’s literally nothing I can do for my daughter. That sucks. You go from being on top of the world and loving the life you’re living, to literally experiencing your worst nightmare. 

For 90 days, I woke up next to Emerson.

For 90 days, I changed 10+ diapers daily.

For 90 days, I held her and cuddled her when I wanted.

For 90 days, I could have her sleep in my arms.

For 90 days, I could hear her noises.

For 90 days, I could feed her. 

September 23rd was the last day I did any of those things, and some I will never be able to do again. 

Thoughts - October 2nd

I am a person that needs information, that needs statistics, that needs the cold hard truth, that needs it all in order to put the big picture in my head. I want to be as real as possible with the situation that Emerson is in and our family future. It is still crazy the situation that we are in.

The nurses that we have had bedside (right now Emerson has a nurse taking care of her 24/7) have been amazing. Most of them have kids on their own, so they feel you in your situation. They want to do anything to help, including talk with you.

In talking with the nurses, a few things I have found. 
1. With how Emerson came into Loma Linda, they absolultey thought she would be on ECMO fast, and are “happy” with where she is at right now. This is one of the reasons they rushed so fast to get her listed as 1A on the heart transplant list.
2. There are only about 4-5 heart defects that actually need a heart transplant. Think about that. Modern medicine can do so much in terms of medically and surgically fixing the heart. But 4-5 circumstances lend itself to the only solution is heart transplant. Emerson finds herself in that position.
3. With that, I asked a nurse who has been here 14 years, how many cases they get like Emerson. She remembers in the last 2 years, there has only been 3. 3! Are you kidding me! And one of them was the fact that a baby got influenza, the heart swelled, they put the baby on ECMO to allow the heart to rest, and the baby recovered and was fine. Just think about those numbers people. Think about all the babies born each year. And Loma Linda is a well-known heart transplant hospital. Again, why us??
4. When we brought Emerson into the ER, many doctors won’t do heart x-rays, because you assume with a baby the heart will be okay and they will just give fluids and sent home. Our nurse told us that we had a good ER doctor to take a chest x-ray and to send us off to Sunrise and then to here. It is more common than not that chest x-ray on a baby her age won’t happen.

In talking with parents, whose daughter had a heart transplant last week at age 13, a few things I have found.
1. They are in a little bit situation as ours, and a different diagnosis, and they were able to treat their daughter with a few surgeries as she was growing, until finally having to get a heart transplant. They have been dealing with this for 13 years basically. But I asked them the emotion of getting the call that a heart was available, and it is a week later now, and the dad said he still can’t believe it. You just wait and wait and wait for that call to come, and when it does, it doesn’t seem real. Their daughter was listed as 1B on the transplant list for most of her life. Her heart got worse, and then was listed on 1A for 90 days before she got her heart. They are a nice couple who has kind of been talking to us and guiding us. They are hoping to go home by the end of the week. Their daughter was walking the hall last night for heart exercise, and she exclaimed to people “I got my heart!”. It was very adorable.
2. I asked them if they had any other kids. And the dad told me my same exact thoughts I have been having as well. He said that they couldn’t tell him that this wouldn’t happen again to them, and they just couldn’t put themselves, their family and their friends through this again. That would be way too much. I totally understand him, I get it, I am here, I know, and I pray daily for understanding and guidance from God about this.

Finally....A Break

Finally, a break from all the bad news that we had been getting day after day.

When Emerson went down for her MRI, we went to lunch to get out for a bit, because there was nothing that we could do. In our situation, we are constantly expecting or waiting for a phone call. This feeling has not escaped. Literally, every night we go to sleep we pray we don’t get a phone call in the middle of the night. Because no phone calls means everything is under control. Like I said, this situation is a constant worry point.

Anyways, to her MRI....she did awesome, and they got her back to her room just fine and dandy. We just had to wait for the results. Now, they did an MRI on her brain and her heart. They figured if we have her down their already for a brain MRI, we should just check out the heart as well. And both came back with better answers than we had been getting. Her brain showed no signs of a stroke or seizure. That’s really good news. And her heart showed no scarring (which I guess is good), and no additional swelling. With how we left the hospital Thursday night, to getting this news on Friday...it was a world’s difference. Our doctor literally came into our room on Friday smiling to tell us the MRI results.

Doctor: “Well I have some good news.”
Me: “Don’t mess with me doc.” (Since Monday on receiving this heartbreaking news, to now Friday, this is literally the first medical person who has said anything about “good news”)

She was starting to level out with her vitals and blood, and they wanted to just maintain over the weekend. Saturday and Sunday she did really good. Last thing that we heard on Friday is that the surgeon team was going to talk over the weekend about any type of surgery they could do to alleviate pressure on the heart and get the breathing tube out. Really, the main concern right now is getting the breathing tube out, just because the longer it is in, the longer the chance of getting an infection from it. Also, when the breathing tube comes out, we can hold our baby girl again.  We dream of being able to hold our baby girl again.

How the PICU works is that the attending doctors work a week at the time. We loved the doctor we first had last week. Monday was a new attending, and we met her the first time during rounds Monday morning. I guess I should explain “rounds” as I have mentioned it a few times and a few might not know (it is crazy how much medical “stuff” we have learned after only a week). Rounds is when the attending doctor, and a few others depending on the circumstance, go room to room and discuss what is happening. The nurse will give the attending numbers, and the attending will tell us what is happening and what is going to happen. They usually round in the morning and at night.

Anyways, we met the new attending doctor at about noon on Monday. And we like her already as well. And she gives us more news to hang on to. Emerson’s numbers have been holding on so strong, that they want to slowly wean her off the ventilator machine. Basically, the heart medicine that they are giving her to get her heart pumping better will do all the work. But her other body systems have been looking good, and they think she can handle breathing on her own. They have already slowly lowered the ventilator, and she has been responding well. If this does happen, her breathing tube would come out towards the end of the week. As in a hospital, things can move slow medically; this race is a marathon, not a sprint.

Emerson has an echo planned for today sometime (October 2nd). At the very least, same would be good. Same would mean they can move onto their plan. We pray and we keep praying.

Loma Linda - First Days

The first days leading up to her first week of stay at Loma Linda were just as equally hard and worrisome and stressful as that first horrible day of learning all of this.

The first few days were all about meetings and signing papers and labs and tests and everything just kept coming back bad. And we just kept crying. And I can not emphasize enough about how important it was to having our family and best friends with us. Andrea and I would not have survived without them.

Tuesday morning we had to sign off on ECMO. ECMO is basically a machine that does the job of the heart and lungs when the body functions start to fail. In terms of heart transplant patients, most patients will be placed on ECMO, then have a device placed on the heart that can sustain the child for months while a heart is waited on. Based on what we know with talking to nurses and doctors, and how she came into Loma Linda and how she looked, they honestly thought she would be on ECMO sooner than later. Basically time was a waiting game. We waited hour by hour as tests kept getting run, mostly blood. She had to have a couple blood transfusions because so many blood tests needed to be run. She did come back for testing postive for two viruses; rhino and entero. Basic colds that we get. However, they think her getting these common colds pushed her heart over, and that is how we learned about this heart disease. Bittersweet I guess.

Thursday night was rough. During the day, the team could only describe that Emerson had an “episode” and looked like a seizure or stroke. They gave her a CT bedside and saw that one side on the back of the brain looked different than the other. The plans were that in the morning she would be brought down for an MRI. This does not happen very often for babies as young as Emerson. There is a lot of risk involved with this. She needs to be disconnected to her machines and put on mobile ones. She needs to be transported to the “dungeon” of the basement and it is cold. All her machines need to stay outside the door as she is on the MRI so long cords need to be connected. And this takes hours to do. Everyone rounding with us about this, including our nurse, did not leave without a dry eye. It was a very low point after an already emotional week. Emerson could not catch a break. It was bad news after bad news. If she did suffer a seizure or stroke, this would be detrimental. We went to dinner that night as a family, as we did every night, and Andrea and I just sat numb with emotion. Why did this need to happen?

There was so much more that went on as well. Talking and dealing with insurance. Need to talk to work. Need to talk with Social Workers. Need to talk with heart doctors. Every single day is an emotional grind. Every day is a battle to get out of bed. Every day waking up is the realization again that your 3 month old baby is in the ICU fighting for her life and needing a heart. It is so unreal even as I sit here writing this a week later.

I would say my thoughts are driving me crazy. And I can’t help it. Again, the FEAR of the unknown. I know that God has a plan. I have to believe God has a plan. It is the only thing that remotely gets me through this. I can’t help but question “Why?” Why us? Why this heart problem that can’t be fixed with surgery and recovery? Why a heart that needs to be transplanted? How long do we have to wait? Why? Our family really doensn’t have a history of heart disease, is this genetic? Is this an abmorality? If we have more kids, will this happen again? Because no one, and I mean no one, should go through this twice. No one should have to go through this once even! The thoughts are overwhelming. All I wanted in my life was to get married and have children and create our family. This is all I wanted. And now my first born daughter who is perfect is fighting for her life? And now I don’t know if I am willing to have more kids, because what if this happens again? I couldn’t handle that. So much doubt consumes me. So much of my future consumes me. My wife is such a rockstar, and a rock, and she has balanced me out so much, and I am tending to go to the darker side. I know this, I recognize this. I am just mad.

Summerlin to Sunrise to Loma Linda

After receiving the devasting news from Dr. Fox, he is a smart dude who realizes that Summerlin Hospital can not help Emerson.

He sends us to Sunrise Medical which has a top heart crew for the children’s hospital there. Andrea and Em take an ambulance. I follow in my car. We wait for the doctor to come and do an echo. The man that comes is named Dr. Mayman. Before he even begins, he gives us both a hug. I like him already. He reads the machine, and leaves the room saying he needs to “expedite things”. I know in my heart this isn’t good. He comes back and tells us she has a room in the PICU and for us to follow him into the quiet room to talk. No good conversations ever happen in the quiet room.

He is honest but also loving with us. He tells us what is happening (left side of heart is bigger and not pumping as well), and what could be potential fixes. The biggest thing is that he can already tell she will probably need a heart transplant and that he wants to get on places to send her, because Sunrise can not do that as well. This is about 11 am.

Sunrise does everything it can to give her medications and see what they can do. Her heart rate is high. The heart machine would go off every time her heart rate went above 180, which happened often. You could tell she was laboring to breathe.

Dr. Mayman comes back in the evening to tell us he got her a room at Loma Linda Hospital, and that a team is coming to life flight her over as we are speaking. The reason for the urgency is because if something goes wrong, Loma Linda has the capabilities to help her; much more than Sunrise could. So, Andrea stays with Em. I drive out with two of our close friends. And my mom and sister drive out from San Diego. They told us that they would would get her about 9 pm. And so, what I am finding out about hospitals is that they are always later than they say. I can not thank Dr. Mayman and the team at Sunrise enough.  They did the best that they could for Emerson, and were exceptional people to talk and help us. I already miss Dr. Mayman’s hugs.

My mom and sister get to Loma Linda about 10 pm. I arrive about 12 pm. Emerson and Andrea get to the hospital about 2 am. They settle her and we are able to visit. We head back to our hotel room at about 4 am. Emotionally and physically exhausted, tear-ridden, we cling to hope that our baby is going to be okay.

Monday. September 24th. The longest, most emotional, most stressful day of my life.

Initial Diagnosis

From day 1, Emerson blessed our lives immensely as first time parents. The whole month of July mom and dad got to spend every day with her. Family came in and visited. She ate well. She slept well. We were really blessed. As the days turned into weeks, and weeks turned in a month, she was growing both in weight and height. Her pediatrician appointments were all good and they were happy with her development. By all accounts, our sweet, precious baby was doing exactly what she was suppose to do and there were no problems. We were loving the life that was ours. I remember telling my mom how perfect life was and how happy I was. I had everything I had ever wanted; a perfect wife, a good job, great house, awesome friends and now our little miss Emerson.

Due to the beginning of the school year, and working with 6th graders, the common cold came around. I had a head cold for about 2 weeks. Then I gave it to my wife for a few days. We were both constantly around Emerson, and babies get sick, so we knew she would probably feel the effects, and we just wanted to monitor that. The weekend approaching her 3rd month birthday, she started to not act like herself. She was more pale, clammy, not really eating, not really sleeping (being really fussy), and stopped with the wet diapers. We thought she was just dehydrated. 4:30 am on Monday (September 24th), we took her into Summerlin ER (this is where she was born). They ran tests, and I think for how he saw she was, took at look at her heart.

Dr. Fox came into the room after sometime and said, “We still have more questions, but she has congestive heart failure”.

I don’t know if your heart has every truly stopped for a beat, but this was one of those times. That one sentence rocked us to our core, and we knew our entire world was changed forever. My wife immediately falls into my arms and starts bawling. My tears roll onto her back. Immediate thoughts of how could this happen to our precious baby?

This starts the longest 24 hour period of our lives...that goes into a week....that continues now..

First, My Own Journey

For as long as I can remember, I wanted to get married and I wanted to have a family. I have done a ton of writing in the past on it, and I have bothered my mom a ton on the subject as well. Believe me, you can ask her. As I turned 30, and no prospects of a wife in the immediate present, I started to question when this was going to happen. I know that I would make a good husband, a good father, and I wanted it so bad. But I just had to leave it up to God, and keep believing it would happen when it happened. The thing with me, I hate the wait (as I am sure many of us do). I just want to know the plans now and how long I have to wait; I just want to know. I HATE the wait and the unknown. I FEAR the unknown.

God had already put me through trials of my own. Trials, which at the time, seemed huge and big and affected my whole world. Things that I don’t need to discuss in this blog, nor the focus of this blog. But it is important to how I ended up with Las Vegas, and met my wife, and had our daughter. Very basically, I taught for a year in San Diego. And it did not go well. But I learned a lot and God was preparing me for my new adventures (even though I didn’t know it at the time). I honestly thought I was going to a new job in Northern California. Like they were going to fly me up to check out the school. Then a school in Las Vegas calls me out of the blue, I scoff like “Las Vegas...really?”,  and I told a good friend/co-worker and I scoff and say “a school from Las Vegas called me...like really?”, and what she said changed everything...that is a really good school and you need to talk to them. So I do a skype interview, and it goes really good, and I feel really good about it, and something (Holy Spirit) pushes me that direction, and I take the job. I don’t visit, I don’t follow up more, I take the job, it feels right.

I have always believed in God. But that was the first time I have really felt that feeling of being pushed somewhere. It is a feeling I can’t really describe, but I will always remember it. It was a good feeling.

So, I end up in Las Vegas. At a good school. With great co-workers. And it is where I need to be.

Halfway through my first year in Vegas, I have two co-workers who set me up on a date with a girl they use to work with from a different school. Her name is Andrea, and things go pretty well, because she ends up being my wife. She is a perfect compliment. She believes in God, we have the same morals and ideals, she is easy going, she is funny, she has a great laugh, she is great with children, and I know that she will be an exceptional mom.

I know that God has a plan. He took me to Vegas, when I thought that was a joke, and within 7 months of being there, I meet my eventual wife. So, that was pretty cool.

We get married June 10th in 2017. Within a couple months, SURPRISE, the wife is pregnant. We really weren’t trying to have a kid yet. We really wanted to be married a year first and enjoy that. The wife would tell you that I was definitely shocked and had to get my bearings about this (I like to follow a plan), but was excited to be a father; something I wanted to be for a long time.

Emerson Lee Buskirk was born on her actual due date; June 26, 2018. We knew she would be special. There is no feeling of absolute and total love for something than seeing your baby for the first time. I know that forever she is mine, and I will do anything in my power to love, support, and protect her. She quite literally changed my entire outlook of life the moment she was born. I couldn’t be more proud, happy, all the emotions in the world to finally be a dad, something that I would always be from that moment on. That will never ever change. Emerson Lee is forever my firstborn child and daughter.