Friends and Family

The response of our family and friends to our situation was nothing less than overwhelming. There were some phone calls with family right away and then periodically as time went on more calls would come. There were texts of support and prayer. And then there was the Facebook response with comments, prayers, and general support. It somewhat amazed me how many people were praying for us in so short a time span. So many friends, so much family, and then so many other people who only knew who we were because of the people we knew and because the people we knew liked or loved us enough to share our story and our need. I know now, beyond the shadow of a doubt, that my family is very loved and that if something happens to us there is a veritable army of people who are willing to help us.

Obviously the first wave of help came from our family on hand. My in-laws were already taking care of our daughter, our dogs, and our birds. Originally it was just supposed to be until we went home with the newborn. Now it looked like we might be in the hospital for a while. No idea at that time how long we would be in the hospital, but for sure it was going to be much longer than the original two days. They didn’t hesitate to offer to continue taking care of our daughter and pets. My dad was there as I have said before as an ear but also in a “make sure you take care of yourself” capacity. At first this took the form of making sure we were eating. Later it was taking care of the housing. Like, where we were gonna live while Micah was in the hospital since the hospital is an hour away from our house, with no traffic (more like 3 hours with traffic).

The first friends we saw after the move to Cooks brought us dinner on our second day. They were set to go out of the country the next evening and they wanted to stop by and wish us well before heading out. Funny enough, they initially didn’t know about what was going on and hadn’t planned on visiting us. They aren’t avid Facebook watchers and I hadn’t gotten around to texting and calling everyone at that point. Luckily another friend of ours talked to them and told them what was going on. So they were there that night, with lasagna, which was delicious, and which had been made for us by another friend of ours. I remember in the first couple of days whenever we ate I ate like a starving person. And I don’t mean that I ate quickly. What I mean is that when I finally had food in front of me I felt like I hadn’t eaten in a very long time and then acted accordingly. By that meal, I was able to slow down a little and talk some.

Before that meal we hadn’t really eaten with anyone who didn’t know at least the gist of what was going on. However, our friends who joined us that evening knew very little beyond that he had a heart defect. This was the first time I really remember explaining what was happening with Micah in much detail. It was also the first time I remember explaining what was happening after figuring out a decent amount of the information myself. When you get told “Your child has hypoplastic left heart syndrome” you don’t instantly know what the heck that means (I mean maybe you do if you’re a doctor, but I sure as heck didn’t). So you get information over time. The first NICU doctor told us some info. The Cooks NICU doctor told us some info. The nurses had told us some info. WebMD and the similar websites had told us some info. Now, by the evening of day two, we actually had enough info to answer a decent number of questions. We had enough of the story to tell some of the story.

Explaining what was going on had a profound effect on me that ran much deeper than I had expected. It was something I would experience over and over again and it did dull each time I explained it, but I feel it even today when I tell someone new about my son and his first months of life. I think some people characterize the feeling they get when they tell their story, whatever tragic twist their story has, as “making it real”. And I understand how that would be one way to characterize it. Before you speak, the story is just in your head. You can close your eyes and shut your mouth and it’s only in you. If it’s just in your head then it’s not real. But once you tell someone, once you open your mouth and spill your guts, it becomes real. Like I said, I get that way of looking at it, but I don’t think I would characterize it that way.

The tragic event, in our case at that moment it was my son’s dire peril, rapidly became a core part of who I was. It was a piece of me that was now embedded in my soul. That’s how children are anyways, but a child who could die at any moment, its makes the embedding process turbulent. It makes that piece of you that just became tied with them full of strain and tangles. It makes it so if you could cut me open and look at the different pieces of me, then that piece tied to my son would be glowing hot and burning to the touch. Talking to other people about it meant I had to touch that piece of me, that burning glowing hot piece. And to really relay the information about what was going on to the people I am talking to, I have to grab that piece and drag it out into the open air and I have to try and get them to touch it too. It very much is like trying to describe what it feels like to grab onto a hot piece of iron, while you are still holding the iron. I don’t think I cried at that time per se, but I remember my eyes getting watery.  And I remember crying other times I explained what was happening. And my eyes still get watery when I decide to go down into that well. I think they might always.

I am very grateful that I was with friends then. People who either understood what was going on and were supportive of us, or who maybe didn’t fully understand the effect all of this was having on us but were supportive anyways. I am very grateful that we had as many friends and family helping us as we did and really that we have as many family and friends helping us now as we do. It helps to have so much love that you barely feel the heat coming from the iron.

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Being Joshua

I know two people in my life I would qualify as Miracle Men. The first obviously is my son. The fact that he is still alive after being born with what is essentially half a heart is a miracle to me. His survival after having his circulatory system re-arranged is a continuous source of amazement and wonder to me, and so I would call him a Miracle Man. The other man is an uncle in law of mine named Chris. Two to three weeks before my wife and I’s wedding, back in the late 2009 time frame, Chris, who was somewhere about 50 years old at the time, was in his attic doing something. I say something because he doesn’t fully remember what. The reason he doesn’t remember is because he fell through the ceiling, twisted sometime during the roughly 15 foot fall, smashed head-first into the corner of a china hutch, and then fell another 5 feet onto the ground of his dining room. In the course of that accident he fractured his second vertebra, as well as a couple other parts of his spine, and other parts of his body as well, and had a stroke. Go look up what happens to people who fracture their second vertebra. Seriously, go check it out, this blog will still be here when you get back. Right, so now you know. He was gonna be a guaranteed paraplegic, most likely quadriplegic for the rest of his life. Everything about his brain was gonna be iffy. Memory loss, difficulty with motor function even to the muscles he had control over, hell even eating and breathing were not entirely certain.

You might not know this about me, but when I was in college I got a Psychology minor to go with my engineering degrees. I find the topic fascinating and plus it was a great way to keep my GPA afloat after junior year of engineering. I had taken several courses discussing brain function such as Cognitive Psychology and Physiological Psychology and The Psychology of Sense. I knew the basics of brain functioning and what some of the lower levels of the spinal column did. So when I tell you that I shook Chris’s hand after he walked into my mother in law’s house and then told us the story of the accident and recovery only two years after our wedding, you can imagine how stunned I was. I was speechless for a little bit, followed by me blurting out, “Second vertebra?!? But you can walk!?!” This was not an uncommon reaction to Chris. Doctors typically either stand deaf and dumb for a minute after meeting him and reviewing his chart or they flat-out don’t believe he’s the same person as his file. He is a Miracle Man.

The day we got the word about Micah and rushed to Cooks I received a text from Chris’s wife, my wife’s aunt. The gist of it was both a message of encouragement and reminder of what I needed to be doing. And it wasn’t the “pack the bags, get the car, arrange for things” kind of doing. It was the “tend to your family” kind of doing. She had been down this road, she had spent many many waking hours in hospital waiting rooms, at bedside, back and forth to and from therapy. She had been down a very hard road. Her words during this time were important. Like I said, she was encouraging, but she also told me something else. She told me I needed to be Joshua. I admit, at that time, I had no idea what that meant.

I admit it, I haven’t actually ever sat down and read the Bible from front to back. Oh, over the many years of church going I know I’ve heard 90 percent of the New Testament, most of the psalms, and then I’d say I had either read or heard about 40 percent of the Old Testament. But there was a lot of Old Testament I hadn’t read and was mostly unfamiliar with. Joshua is the sixth book of most Christian Bibles, taking place right after Deuteronomy and (spoiler alert) Moses’s death, which occurs at the end of Deuteronomy. Obviously Joshua was important, I mean he had a book in the Bible, but I had no clue what it meant to be Joshua. So for the first few nights we were in the NICU I read the book of Joshua in my spare waking time.

The Book of Joshua chronicles the conquering of The Holy Land by the Israelites after their forty years of wandering in the desert. Joshua is a faithful man, who, back in Numbers and Deuteronomy, was given the task of scouting out the Holy Land before the Israelites invaded. Of the men sent out to scout, only Joshua and one other didn’t quail at the sight of the people they were supposed to conquer. They trusted in God and believed that he would be with them as they were promised. However they got out-voted by the rest of the Israelites who were too scared to cross the Jordan, and so began the wandering in the desert for 40 years. After 40 years, everyone but Joshua and the other man who fled from Egypt was dead. So they gave the whole invasion things another go. After Moses died, the Israelites cross the Jordan into the Holy Land. Joshua leads the Israelites first in conquering Jericho, with its walls, and then slowly the rest of the country over a forty year or so time span.

That was the story in the book, but what did it mean to be Joshua? This was a command coming from a woman who had been through so much more than I had, it obviously meant something. Who was Joshua? Joshua was faithful, despite adversity, despite overwhelming odds, despite getting screwed out of 40 years of his life by a bunch of ingrates. Joshua kept the peace and kept the commands of God. Joshua was a leader. He sent the right men for the right job at the right time. Joshua listened to God and followed through with what God asked him to do, no matter how ridiculous it might seem. “You want me to have the Ark of the Covenant march around the city in silence….for how many days…uh huh…and what’s a cubit again?” As I read, two keys things spoke to me about what it would mean to be Joshua. Faithfulness and leadership. Being Joshua meant I needed to be my family’s leader, to decide on courses of action, to make sure things got done, to handle the situations as best I could, but to do it all faithfully with an eye and an ear to the Lord. No one operates in a vacuum, or at least not for very long, you know, since God abhors them.

I was going to need to remain faithful, to be a leader for my wife and daughter, and to act in the manner God would want me to. Being Joshua was not going to be easy, but it was something I was going to need to do. It was going to be a long haul, we knew that, but hopefully better than forty years of wandering in the desert.

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De-Sat

I could tell you that the night went well and that the hospital was very comfortable. I would have to add modifiers to that sentence though. Namely the phrase “for a hospital”. The room we were in had a couch that folded down into a bed and a chair that somewhat folded out. Neither was super comfortable, but compared to a normal NICU it was pretty awesome. It took a lot of the “what do we do now” out of the “we just got admitted to a children’s hospital and my two day old son is stable.”

Instead of scrambling to find lodging, we could just sleep there. Most NICUs are large rooms with bay’s in which the children are kept and in which parents can only spend so much time and definitely can’t sleep. This NICU had semi-private rooms for each child. We ended up with the smallest room on the floor, but it was still amazing to have what we had.

Before bed we had a scare. Micah’s breathing tube became clogged or stopped working well, or…something happened with him, I don’t know for sure, I’m not a doctor. Either way, I stood there and watched as his blood oxygen saturation went from the 70’s to the 60’s (some alarming) to the 50’s (a lot of machines alarming) to the 40’s. I spun around to look for someone and caught the eye of a nurse sitting across the hall, she was already in motion toward me. She grabbed a part of the breathing tube and started shifting things with the tubing to try and unclog them I think. I blinked and there were two more nurses in the room, including Dan, his nurse for the night. I stepped back to make room for people. Like I said our room was small and so I had to pick my way carefully backwards. When I looked back up there were six people (nurses, charge nurse, respiratory therapist) in the room.

One of them was messing with the breathing machine, one had a breathing mask over Micah’s face and was pumping it to make him breath, another one was holding the mask in place, another one was doing something with some medicine… And then as quickly as it started, it was over. His O2 saturation came back up, the machine was put back into place, and the room slowly emptied. I had done nothing in that whole exchange, but I felt drained. I felt like part of my life had just slipped away. Like if I looked in the mirror I would have quiet a few more grey hairs. But Micah was okay, or at least as okay as he could be at that time. His vitals were normal, or as normal for him as they could be.

As I stood there I don’t even remember feeling the whole rush of adrenaline followed by coming down from it followed by nervous energy trying to get rid of the unused adrenaline, because let’s face it, I did nothing of real value during the episode. I was a silent observer. These other folks, they had saved his life. I was in their hands. That was the feeling I felt. Micah, and by extension my wife and I, were in their hands, and I for one was very grateful that we were. They had saved his life. I could not ask for more. Gratefulness and relief. I remember thinking how strange it was that I wasn’t feeling the adrenaline rush. Maybe my body had figured out that my time of action was done for the day, that I had done all I could do. Maybe not. Either way, I was also grateful that I didn’t have a bunch of extra energy running through my veins.

That episode repeated itself overnight. My wife woke up for it, but I did not. That was the level of tired we were at I suppose. Or not even tired. Maybe not even exhausted. I think drained would probably be the best word. We woke up early the next morning to listen in to the shift change report. The reports slowly became more and more informative, the nurses were very good at explaining things to us as they went along, especially if we had questions. We also had the benefit of having three shifts in a row of nurses who had trainees, which meant we got to listen in on a lot of teaching. In no way were we any kind of experts, but as time went on we got a better feel for what stats they were looking at and what medicines were for which thing that was going on.

After shift change we went back to sleep. Cardiac round were around 8:00 am. We got back up for those. There wasn’t a whole lot to them, but we did get more of a feeling for what was going on and what the plan was going forward. For the moment, Micah’s surgery was going to be sometime in the coming week. He wasn’t bad enough that he needed to have it done immediately, but he wasn’t good enough that they were gung-ho about putting him under the knife. I don’t think we saw Dr. Tam there, I think he had something else he was doing. After that it was off to find food and start coordinating people coming to visit us. Micah was doing fine, for being sedated, on a ventilator, and being kept alive by medicine. He was fighting and surviving. We were in good hands.

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The If Game

You think about a lot of things when you are in the hospital. Whether or not you are there for yourself or for someone else. There are only so many things you can talk about, read, search for, scroll past, listen to, and watch. At some point you end up just siting or laying on a chair or couch or bed and you think. There are a lot of things to think about. A lot of worries about the future of course. But a lot of other stuff too. I prayed a lot. That would often be the starting point of my thinking sessions, or when I was trying to go to sleep, I would pray.

Thank you God for everything you have given me. Thank you for my family and friends. Please God help Micah, and Maria, and my wife, and me. God you are the creator and redeemer of the world, may your will be done.

Sometimes more elaborate than that, sometimes more conversation, sometimes more routine. But that is a standard form of prayer. Start by thanking God for what you have, then give God your needs, then end by praising him. It’s an old form of prayer. A lot of people might question why I would be thanking God. I mean, come on, your baby boy is ten feet from you with a breathing tube and about 10 lines going in and out of him, one of which was feeding him the medicine that was keeping him alive. You don’t know if he is going to be alive in twenty four hours. You are in a hospital instead of at home. Why are you thankful. I know those thoughts went through my head.

The reality is though, where we were, at that moment, with my son still alive, in a Children’s Hospital with a “miracle worker” surgeon who performs the type of heart surgeries my son needed, were all do to a series of events whose coincidental nature I highly doubt.

My daughter was born in May of 2013. She was a healthy and happy baby. We lived in Mississippi at that time, roughly six hours from the closest family. Four months after her birth my wife became ill, had to be hospitalized, and had surgery. And it all happened that quickly. We went to the hospital the day after I had worked a nightshift (12 hours). My mother-law came as fast as she could but, like I said, it was six hours before she made it. I was pretty sleep deprived by the time she got to town. Over the next couple of days we took care of my daughter, who was very unhappy that mom was not available to feed her or be with her. I took days with her and my mother in law took nights. My wife came through the surgery fine and recovered fine as well, but that week was pretty terrible. It was then that I started looking for work closer to family.

Because I was focused on finding a job near family it made me consider places in Florida, and not just Texas. Little did I know that FPL which owns a few nuclear plants in Florida was owned by a parent company that owned power plants all over the U.S., including Forney, Texas. While searching their employment website for jobs in Florida I found an opening in Texas and applied, because why not, the worst they can say is no. I would not have found that opening if I had just been focused on finding a job in Texas, it was because I was searching in Florida that I came across it at all. And, strangely enough, the plant in Texas wanted me. So we moved.

But it was piece-meal. I moved first and lived with friends, and the wife and daughter moved out a little later and lived with her parents in Southlake while we put the house up for sale. Once everyone was in the DFW area we started looking for places to rent, but the rental market was crazy. In the mean time, we became pregnant with Micah (a name we finally settled on the day he was born). Since the wife was living in Southlake she found an OB in Southlake. And since they got along well she kept the same doctor through the whole pregnancy even after we moved clear across town to Rockwall. And since she kept the same OB we decided to have Micah on that side of town. So Micah was born at Texas Health Methodist Hospital HEB.

The next day the wife’s OB said she and the baby looked fine and we could go home if we wanted to but there was no pressure. The wife decided we should stay till the next day. It was the next day when the nurse noticed Micah’s color and decided to check on it. It was then that he was diagnosed and because we were there, instead of somewhere closer to Rockwall, we were transported to Cooks, instead of Dallas Children’s. The doctors at Cooks kept him alive and Dr. Tam saved his life, twice.

What if we hadn’t had been at Cooks? I’m sure Dallas Children’s is awesome, but so was Cooks, and Cooks worked for us. What if we hadn’t had had that nurse? What if we had gone home early? Would we have seen the signs, would we have responded in time? These two what ifs specifically have a tendency to reach out and slap me occasionally and grip me with terror at the unknown and thankfulness that things went the way they did. What if we had move immediately to Rockwall? Different OB, different birth hospital, different nurses, different doctors, who knows how it would have gone. We know it went well the way it did go.

And then the big one. What if we had still been in Mississippi? So much would have been different and in the end we still may have ended up in Dallas or Houston. But it would have been so much more difficult, so much more strain and stress, maybe Micah wouldn’t have survived the journey. Maybe, maybe, maybe…

Ultimately, though, we were in the right place, at the right time. Thank God.

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Hotel Hospital

The drive back to the hospital was very similar to the first drive, except there was more music involved. A song by For King And Country had just become popular and came on the radio shortly after I fired the truck up and got moving back toward Cook Children’s.

It’s Not Over Yet

“They are inside your head
You got a voice that says
You won’t get past this one
You won’t win your freedom

It’s like a constant war
And you want to settle that score
But you’re bruised and beaten
And you feel defeated

This goes out to the heaviest heart

[Chorus:]
Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over ye-et
And even when you think you’re finished
It’s not over yet
It’s not over ye-et

Keep on fighting
Out of the dark
Into the light
It’s not over
Hope is rising
Never give in
Never give up
It’s not over

Yea-et-et, woah
Yea-et-et, woah

Oh, game set match
It’s time to put it in your past, oh
Feel the winter leavin’
It’s redemption season
Long live the young at heart (Here we are)
Cheers to a brand new start (Here we are)
We’re revived and breathing
To live a life of freedom

[Chorus:]
Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over ye-et
And even when you think you’re finished
It’s not over yet
It’s not over ye-et

Life is a race we run
So run till the race is won
Don’t you ever give up (Here we are)
Oh no never give up (Here we are)
Life is a race we run
So run till the race is won
Don’t you ever give up (Here we are)
We will never give up (Here we are)

[Chorus:]
Oh, to everyone who’s hit their limit
And even when you think you’re finished
It’s not over yet
Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over ye-et
And even when you think you’re finished
It’s not over yet
It’s not over ye-et

Keep on fighting
Out of the dark
Into the light
It’s not over
Hope is rising
Never give in
Never give up
It’s not over

Yea-et-et, woah
Yea-et-et, woah
Yea-et-et, woah
Yea-et-et, woah”

It was something I needed to hear, and yes, I did tear up again, something else I needed to do. I later found out the song had been written for the band member’s sister, who is battling Lyme disease, something a good friend of ours is also battling. It’s a good song for expressing both the feeling of loss (and I mean more like the loss you feel after you lose the Superbowl for the 4th time in row, poor Buffalo, and not as much the feeling of loss when you lose someone dear to you) and the feeling of hope that can come from accepting a new path and moving forward on that path . So many things were different now. So many preliminary plans about the next year, about the remainder of the current year. About what I, and My wife, and our daughter, and our newborn son were going to do and accomplish. The travel, the visits to grandparents and great grandparents. All suspect now. And what about all the money I was now missing. I was supposed to work the next month straight…crappy hours for sure, but excellent for the pocketbook and amazing for trying to get out from under student loan and mortgage debt. Gone now, and double gone because instead we were now going to be inundated with medical costs. How about going home, being with the whole family in the same room at the same time. Not today…or tomorrow either.  Where was Maria going to live? With Grandma and Grandpa, sure that was a blessing, but it was without us. She was already super unhappy about the two days she spent without us. What was she in for now…a month…maybe more…What about long term? There would be more surgeries, more hospital. I just felt beat. Like Life had pulled out the monkey wrench from the tool bag and slammed it across my face in an upward arc. I was reeling…so many things were different now.

But it wasn’t over yet, never give up, never give in. We could do this. Yeah, there were a lot of doors that were closing. Let them close, maybe come back to them later when we knew more. For now, give me my daily bread, and let’s do what we can. My son needed my wife and I. My wife needed me. We could do this. Between us and our family and our friends we could deal with these challenges. New life happens, when it happens, accept, deal, and move forward. I know, harder done than said, but ultimately it is what needed to be done. Normal was different now, and different from how we were expecting it to be. But the stuff that mattered, that truly mattered, was still there. My wife and I loved each other, we loved our daughter, we loved our son, our parents loved us, our friends loved us. We loved them. That’s what was important. Come what may, all you need is love.

And I was back. They were still working on Micah and we were still just sitting around the waiting room. We waited. We talked with my wife’s parents about the plan going forward. They were going to keep Maria and the dogs for as long as they needed to, Grandma and Maria would come up to the hospital the next day. Which was good. At least we would be able to see Maria for some amount of time during the day, and the hospital had a playground and other stuff for her to do. I checked Facebook, and was overwhelmed by the loving and prayerful response we had received. I teared up whenever I looked through all the messages of hope and love and support we were getting. We felt, and still feel, very loved.

Then they were done and we were back in the room with our night nurse Dan, who was awesome. Micah was hooked up to a lot of machines, he had a lot of tubes in and out of him, a lot of pumps pumping things, a lot of monitors showing a lot of stuff. Dan took us through all of it, what it all did, how it worked, what was important about it. Every question we asked he answered. It was a good feeling knowing as much as we could about what was happening, made things seem more handle-able. Micah for his part was sedated and doing okay. We spent the rest of the evening in the room with him. I read the bible on my phone and updated Facebook and then the exhaustion hit and my wife and I fell asleep. That first night we tried to share the couch-bed. It didn’t really go well, given my size, but ultimately we got some sleep. And that was our first night of what would become two months in the hospital.

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Dang you Adam

We ate, we called people, I posted to Facebook. We talked some. We watched some waiting room TV. We decided I should probably go get my truck so that both our vehicles were at the hospital. My dad drove me back to the original hospital to get my truck, my wife stayed at the hospital so she could pump and be there in case they let us back in. It turned out to be about a 20 minute drive from the Children’s hospital to the one where Micah was born. My father and I talked a little.

“How are you doing?” he asked.

“…”, i sighed. Internally I struggled to answer that question truthfully, because honestly there was a lot going on inside. Ever since I was in middle school I became very good at compartmentalizing my thoughts and emotions. If I didn’t want to feel something, I would put it in a box, close the box up, and go on with my day. I could open that box and then feel it later. This was all something that took some learning on how to do and learning when and how to appropriately open the boxes was a good deal of my early twenties. Eventually I learned to do the same with my thoughts. These skills let me take in tragic events or painful moments without much of a reaction, box them up, label them “To think about later” and move on with my day. It lets me move into action quicker and get down to “doing something about the problem.”

This day had been a day for a lot of boxes. I’d made several, and like I said before, I didn’t really feel the full brunt of what was happening until I was alone in the car with my wife. In the car, with my soulmate, with only a single thing I could do at the moment, in that case drive the car, I opened some of those boxes and felt the pain and fear and terror and anger and joy and sadness that all came rushing out. Once we got to the hospital, it was time to close them up again and get back to doing. Figuring out where to park, finding the room, talking to the doctors and nurses, deciding what to do with the rest of the day: getting the car, if we were going to see Maria, informing work, etc, etc.

Now I was in a car again, and I wasn’t even driving. I was riding shotgun with my dad. A man I had had a thousand conversations with, while he drove and I sat shotgun. I grew up driving back and forth to and from airports with my parents, my mom letting me go to stay a month or so with my dad, and then my dad letting me go back. Between my mom and my dad I have had every conversation you could imagine while sitting in the passenger seat of a truck or car. We have talked about everything, from how a nuclear power plant works when I was a kid (him explaining it to me) to how a nuclear power plant works when I was an adult (me explaining it to him). Girls, music, politics, drugs, history, family, God, we have talked about everything.

At this point I had processed some of my emotions. Or parts of some of my emotions. Between the love that was flowing in from our friends and family and the admonitions of the medical staff the sadness, the fear, the terror, the joy, most of them had been addressed. Anger on the other hand, anger was still hanging out. And along with all the other boxes which were open, it wanted out. So I opened that box up.

“I’m a little angry, to be honest.” I said. There was a pause.

“At God? It’s okay to be angry with Him right now.” he said.

Which is true. If you doubt that go read Lamentations or some of the more somber Psalms. You can be angry at God, you just can’t stay angry at him forever. But that wasn’t who I was angry with. I knew it wasn’t God’s fault. Micah’s condition was caused by living in a flawed world, by living outside of God’s presence, by living in a world of material dynamics and consequences, and by living in a world with death. The person responsible for that was Adam, not God. Adam, or the original human or group of humans whose existence was spent with God, took the raw deal of death in exchange for the knowledge of good and evil.

This was a topic I’d thought a lot about leading up to Micah’s birth. It stems ultimately from the question “Why do bad things happen to good people.” and can be phrased many ways “Why is life so hard?”, “Why do bad people seem to have it so good?”, “What the hell did that happen for?”, “Childhood cancer, really, what the hell do we have that for?”, and so forth. And these are very important questions. If God is good, why is so much of his creation bad? Or at least, why is so much of our experience of creation bad?

Every year I go on retreat to Manresa house of Retreats with my father and sometimes other family members. It is a silent retreat focused on the Ignatian Spiritual Exercises. For me, for these past five years, it has been a time of discernment. A time when I ask God, what should I do, what should I work on, where should I go. Sometimes I don’t come away with a very clear answer. Sometimes I do. One year I joined the Knights of Columbus, another year I started actively professing my faith. This last year, I read the book of Job. I read it while at the retreat. I can’t tell you why I read that book in particular but I can say that I have always been fascinated by it and during that retreat it was very obvious to me that that was what I needed to read. Job is about “Why do bad things happen to good people.”, it’s not about getting your just reward, or staying faithful no matter how bad things get (at least not necessarily, those themes are in there). Job solidly and firmly asks the question “Why do bad things happen to good people?”. I won’t give you the answer it gives either, I will suggest reading it, and I will suggest you read an annotated version where the translator explains what is going on in each passage. From what I can tell the literal translation of Job loses a lot between Hebrew and English, especially if you aren’t familiar with ancient Judaism. The reason I won’t give you an answer though is because there isn’t really one in there that I can express here. Not a cookie cutter, reading of the day, self help friendly, bumper sticker answer to that question.

Ever since reading it I’ve been thinking a lot about it. Ultimately for me, it comes down to two things. God made the world good, and gave us free will, but in order for our free will to matter, in order for it to actually be free and actually be willful, it had to be consequential. Our actions had to have consequences and those consequences had to be real. And with our free will we did evil and so, shocker that it is, the consequences were evil. That’s the world we live it. Adam chose a world of consequences and evil over perpetual good and adherence to God. And I have too, every day I sin, that’s the choice I make. This world over the better one. And really, the better one would be this one, if we were all faithful, if we were all good. But we aren’t, so it isn’t. Bad call Adam. Bad call…me.

“No, I’m not angry at God. I’m angry at Adam.” I said.

“Oh?” he said.

“Yeah, he took the raw deal that stuck us with this world. We’re supposed to be in paradise. We’re supposed to be with God. Instead we get this. Micah gets born with half a heart. Adam can suck it.” I said.

A little bit of silence followed. Dad got a contemplative look on his face. I was quiet. And just as quickly as the anger had come on, it was mostly gone. It was still residually there, I would still need to deal with it later, but right then I was left feeling tired. Dad and I talked about logistics for the rest of the ride. Where he was going after he dropped me off, where I was going, what the plan for the next day was. And then we were there.

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I Need to Sit Down

One of the individuals in the room with Micah was a well dressed man who introduced himself as Dr. Levy. He was the neonatologist, or baby doctor, for Micah. He started going into detail on what was going on with Micah and what they were doing to/with him at the moment. The bag I was carrying on my shoulder was getting heavier. The room was slowly getting hotter. My hearing started to get a little fuzzy and unfocused. I stopped really hearing what he was saying. I started feeling heavier. I set the bag down.

“I need to sit down.” I said. I got ushered over to the couch in the room and quickly took off my sweater. A very kind nurse brought me some water. If you remember from before. I don’t have the best reaction to talking about the circulatory system from a medical standpoint. This extends somewhat to medical situations and especially to IVs and tubes going into and out of a body. Seeing my son like he was and hearing all kinds of things about the heart were enough to trigger my typical response. Had I not sat down when I did, I probably would have passed out in short order. Everything came back fairly quickly. Vision, hearing, feeling. All okay. Then it was down to what was going on. My wife was mostly talking to the doctor. She’s a vet, she understands the medical stuff much better than I do. I told the doctor she was a vet so that they knew they could tell her things in technical terms. Maybe that was a little bit too forward of me, but I felt like the doctors and nurses needed to know that she was the one they needed to talk to more than me. She had a better grasp of what was happening. She was a doctor too.

To be honest I don’t remember of lot of what happened next. I know they told us things about what was going on with Micah. I know I tried to find places for the stuff we brought with us in the room, which was fairly small. The next thing I remember was meeting Micah’s nurse for that day. Later we found out she was a charge nurse normally. She was a kind lady that looked like she was in her 40s. My wife and I both sat in the couch and she crouched down and grabbed our hands. Below is not an exact transcript of what she said. It never is, I have a decent memory but not perfect (and really not that decent either). But it’s close enough.

“Micah is doing much better now than when he was brought in. When he was brought in he had one number that was very high (we would find out later that it was his lactic acid number), around 14 which is high enough to really worry us. Now he is down to 4, much better. In a range we can deal with and handle. We are going to do everything we can to help your son get better enough for the surgery (the first real notion I had that the surgery wasn’t imminent). Right now we have him intubated and sedated. Before, he was breathing so much that too much of his blood wasn’t going to his body. So we intubated him and sedated him to control his breathing. He is getting a drug called progesterone which is keeping the blood flowing from his heart to his body right now, but it is not a long term solution. He will need surgery. Right now our goal is to get him well enough to have that surgery. You guys be brave, we are with you through this, and we are here for you and for Micah.”

I misted up, my wife cried a little, it looked like the nurse misted up a little to. I honestly don’t know how the nurses in the NICU handle it. So much emotion coming in and going out of those doors every day. New parents, worried about their child, angry at the world, sick with fear, coming in every day. Seasoned parents, still worried, still angry, still sick, but hopeful, joyous, but also tired and weary. Everyday the nurses and the doctors have to be with us parents, dealing with us and our extreme emotions. I don’t think I could handle it. The technical part of the job, not so much of a big deal. It’s the emotional trauma you would have to deal with, day in and day out, that would get me.

Then it was time to leave. Micah was having a number of lines put in, a PIC line and an Art line that required that the rooms be sterile for. Meaning we had to leave, since we were definitely not sterile. I prayed a little over Micah and then we left. My dad was in the waiting room.

“Let’s get you something to eat.” He said. That was a lot of what dad did for us in those early hours. He made sure we ate. The honest truth was that worrying ourselves sick did no one any good, especially not Micah. He needed us good and strong when we finally got through this. When he finally got to wake up. When he finally got to come home. Whenever that would be.

Luckily, if we were gonna be there a long time, the pizza in the cafeteria wasn’t half bad.

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You’ve Got the Wrong Garage

I have spent a decent amount of my life in cars, trucks, and vans over the years. I like driving, not quiet as much these days as I used to, but I still do to a certain extent. I enjoy the feel of the road, the feel of the vehicle, and the feel of the music. I find driving a car is one place in which musical integration into a life is not only okay, but expected. And I love music, I love how it makes me feel, and how I feel the music. I spend a lot of time listening to music, driving, and thinking. In fact, on the road is where I do a lot of my thinking. Partly because the road is also a somewhat solitary place to be, even with passengers, the car has a tendency to turn into its own little bubble. Very shortly into our drive to Cooks from the first hospital in Bedford, I started thinking about everything. I started processing what all of it meant, especially what it meant for Micah. Even if all the surgeries went well and everything was as best as it could be, Micah would be limited in what he could physically do. No competitive sports, no hard physical activity. Maybe he wouldn’t even be able to do sports at all. Maybe he would never be able to run with me and his Mom and Maria. And what about long term, nothing but uncertainty there, people talk about transplants into adulthood, but transplants are risky and often don’t last long. How old was Micah going to live? Would I outlive him? Dear God please don’t let that happen, and not because I die anytime soon. And what if things don’t go so well? Does my son have a long term future? COOL-AID MAN!

My wife was on the phone with her mother. When the Cool-Aid Man struck I didn’t fight him. I cried, pretty hard for me. Not hard enough to stop me from being able to drive but hard enough that I felt my wife’s hand go to my arm and her loving voice say “Are you okay?” It was rhetorical, she knew I was not okay, but we both needed her to say something. I shook my head and let the tears come. It was what I needed to do at that time. If I had fought the years and tried to keep a smile on then what was coming out then would only get bunched up and come out later, maybe in a bad way, maybe in a hurtful way. Crying when you need to, letting yourself feel the emotion despite the potential negative societal implications is the strong thing to do. A man is not a rock, God did not build us to be that way. We are supposed to be compassionate, kind, and sympathetic. Sometimes that means we might cry. I did. A couple times on the way to the hospital. Honestly I felt overwhelmed by the enormity of the situation. Too many what ifs. No ability to plan for any of it. All centered around a little guy who had only been alive for nine months, and had only been breathing for one and a half days.

Eventually the tide subsided. I mopped up the tears that were still streaked on my face and got back to driving. The route we took would become all to familiar over the coming weeks and months. Since the original hospital in Bedford was fairly close to my wife’s parent’s house the drive from there to Cook Children’s was almost the same as the drive from Cooks to her parents. And that was where our two and half year old daughter was when all of this happened. At her grandparents. Waiting for her mom and dad to come home with her baby brother, who she had met the day before. Who she had sung a song to and tried to give a piece of a grape to. I cried a little more later down the road.

I don’t remember much else from the drive. We arrived in Fort Worth, just south of I-30 and west of I-35 to a massive conglomeration of hospital buildings. Little did we know at the time that Cook Children’s was centered in the middle of other hospitals and a wide range of hospital support buildings. There is a Texas Health Methodist hospital there, a Baylor hospital there, Kindred hospital. Hospitals all over the place. We followed the GPS as best we could and eventually found a Cooks parking garage. We parked, grabbed our bags and headed into the stairwell. Immediately we realized we had no idea where exactly we were going. We knew Cooks and we knew surgery and we knew NICU, but we didn’t know how any of that related to where we were, or really where our son was. Luckily for us we happened by an employee who quickly explained to us that we had parked in the Emergency parking garage and that unless our kiddo was in the emergency room then we needed to park in the Patient and Guest parking garage. Back to the car, back down the ramps. “No, we parked in the wrong garage.” Back onto the street and then to the right garage.

And thank goodness we didn’t try and walk it, the portions of the hospital Micah was in is not near the Emergency room at all. Completely opposite sides of the complex, in fact. After fumbling around the building we eventually found the NICU, but we weren’t sure it was the NICU. There was a small sign, and a reception desk, but the desk was unmanned and the only people we saw were through a small glass window that was marked with the words NICU Milk Bank. We asked someone for help. “He was brought here from another hospital, he’s supposed to go for heart surgery.” That caused us to end up at the Cardiac ICU (CICU). The lady went inside to ask about him and determined that he was actually in the NICU, so back we went to the same area. This time we were directed to try the button on the wall next to the big unmarked double doors.

They let us in and we registered at the reception desk in the NICU, which was personed, and then taken to our son. There were a lot of people in his room, at least five or six, they all were doing something, and I needed to sit down.

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Which way to the Cooks?

Hypoplastic Left Heart Syndrome, or HLHS is a congenital heart condition that has no known cause. The left ventricle, which pumps blood to the body from the heart, does not develop. The condition is usually accompanied by aorta issues as well. The result is a heart that can pump blood to and from the lungs but not out to the body. In infants the problem is sometimes not caught right away because the ductus arteriosis remains open for a little time after birth. This ductus thingy is a tube that runs from the pulmonary artery (blood going to the lungs from the heart) to the arteries going out to the body. It means that at birth, and before birth, blood is supplied to the body via this duct, cause you know…the lungs aren’t being used in the womb. So once this ductus starts to close, the infant gets blood starved in his body. This causes the body’s organs, which want the oxygen transported by the blood, to go through alternate metabolic processes in an attempt to stay alive. These processes produce acid: hence why his blood acid was high (later we would discover that it was very very very high, not quite lethal but on the edge).

Without intervention such as surgery or a heart transplant the condition is 100% fatal. However since the 70s a series of surgeries have been developed that children get over the years. The first is done very soon after birth, the next one after several months, and the one after that in 1 to 3 years. Currently the outlook for patients making it to adulthood is 85%.

And now you know what I did after I did a Google search and an article reading or two. My wife had gone to get ready at this point. We wanted to be able to go when he did.

Right after the news from the doctor my wife and I held each other. I didn’t cry. I can’t tell you why I don’t cry in general, but I usually don’t. Typically when I do they are happy tears, and when they are sad it’s typically at a funeral. But not all the time. I do know that the more people that are around me the less likely I will cry. It’s not a macho thing. It’s not a strength of will thing. I don’t fight back tears when other people are around. I just don’t have the inclination to cry. Maybe inclination is the wrong word, I’m not sure what word is, but tears don’t come on by knocking on the door and asking if they are okay to come inside. Tears explode through the wall and announce their presence, like the Cool-Aid Man. I had no Cool-Aid Man at that moment. So I sat there and held my wife. That was a strength thing. I know she needed me to hold her and the God’s honest truth is I needed to hold her. After a little while a nurse came in, she said they had started to get the ball rolling on transport and had notified Cooks. They had been trying to get ahold of my wife’s doctor for discharge but had so far had no success. They were sure there would be no problem since they had been willing to discharge us the day before but we had opted to stay, thank God for that.

If we hadn’t stayed, the nurse wouldn’t have noticed his color getting a little blue and we wouldn’t have been in as good position to make the move to Cook’s. A lot of that 15% mortality rate I mentioned earlier is due to children that went home and who only made it to the hospital days after their ductus arteriosus closed. If you are a parent at home you might not notice the problem quickly, they turn a little blue, get lethargic, and start grunting. You take him or her to the ER, they aren’t baby doctors, maybe they have a NICU, maybe it takes many hours for people to figure out what is going on and to get your baby where he or she needs to go. I am not confident that Micah would have lived had we gone home the day before. That thought threatens to overcome me with fright occasionally. I am glad we stayed the extra day.

So the wife went to change from her hospital gown to real clothes. I got busy texting, facebooking, and googling. I wanted to know what we were up against here. Then I needed to let everyone else know. Again, needed. Letting other people know what was going on was important to me. I’ve seen the power of prayer at work first hand, I know what it can do, it was important for me to reach out to get that power on Micah’s side. It was also important to me to get everyone up to date. I knew from the comments I had seen that other people were worried.  Better to know what to be worried about than to be in the dark. I called my dad, he was almost there. I posted an update on Facebook. I waited to text my coworkers, some of them were on days and some were on nights so I didn’t want to wake anyone up, I waited till 6pm to text them.

Soon after that Janel was ready, but we had no word on what was going on. It had been forever, or 45 minutes, which at the time might as well have been forever, since we had had word about Micah’s condition. I went in search of a NICU nurse. It didn’t take much and I actually got the doctor as she was going by the NICU doors. She told me the transport was on the way, it would take 15 minutes or so to go from HEB to Cooks and the transport team would stop by our room with Micah before leaving.

Dad showed up. There were a series of hugs exchanged. I sort of explained what was going on to him, more focusing on the “what we are doing now” and less on “what the medical issue was.” Then the nurse came and said the transport was ready. They came to the room, we walked outside, I thought it was going to be a, see him on the way past kind of thing. They told me, “No, no, let’s go in the room.” We all retreated back into our hospital room. He was in a glass box, five people wearing professional looking blue jumpsuits wheeled the gurney holding the glass box into our room. Teddy Bear transport. He was passed out, or knocked out more likely. He was intubated as well. It was a little scary. No wait…it was intensely terrifying. Numbing though, so instead of freaking out we held his hand for a second and then he was off.

We stood around looking at each other for a minute or two. I was about to hug my wife and say goodbye and drive to the hospital alone, because she hadn’t been discharged yet. Luckily at that moment the nurse walked in and discharged my wife. It took a minute, there were a number of instructions she was obligated to read out loud to my wife. And then we were off.

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The first 5 hours

My wife had gone to sleep. I was holding my son, Micah, now a day and a half old, in my arms, while sitting in a chair in our room at the hospital, reading things on my phone. He had drifted off to sleep, something he was very good at, and did quiet a bit even while eating. I started to drift off too, and decided it was time to put him down in his mobile crib. I placed him in the crib and bundled him up and rolled him over to the couch/bed that I was sleeping on so I could watch him as I laid on my bed. He was a little above eye level laying there, but I could see him enough to tell the most important thing, whether or not he was breathing. Because that is what you do with babies who are sleeping, you watch to make sure they are breathing. Every once in a while, even when sleeping. You just wake up and look and you look and you look, because it is dark and they breath so fast and shallow that it is hard to see the movement. And you pray and you look and then you see the rhythm, you catch it, and you sign and close your eyes again and fall asleep for a little while. At least that is what I did with Maria, our firstborn, and what I did with Micah too, you know, before he had a breathing machine.

Two hours later we were awake again, Micah was feeding a little with mama. As had been the case several times the night before, he got tired while eating and fell asleep. We put him back in his crib. He made some whimpering noises but besides that wasn’t really fussy or crying. He’d been making the same whimpering noises the night before as well. It was a vast difference in comparison to our daughter. She did not like being put down, she would last a short while in her crib but then, sometimes only moments later, would burst out crying and demand to be held. Micah wasn’t like that, he was cool with being in the crib by himself. It was okay with him. The nurse came in shortly after that and took him to do his morning tests and review.

He was gone for a little while. I went back to sleep. My wife did as well, or she got up for a little bit…I honestly don’t remember. I was tired. Shortly after that, say 8am or so, the nurse came back in, but not with Micah. Micah had looked a little blue to her and his blood sugar had been low so she had run a blood acid test to check the level of his blood acid. This test came back with a low pH, which is not good for infants. So not good that he was immediately admitted to the Neonatal Intensive Care Unit (NICU) at the hospital. They were checking him there to see what was wrong and would be back shortly to tell us what was going on.

As you would naturally suspect nervousness set in, and worry, and a tiny bit of panic. Luckily the lack of sleep and caffeine does wonders to suppress the urge to go crazy with worry, and coupled with my usual calmness I took a step back and looked at the situation as best I could. So I prayed. In all reality it was what I could do given the situation, which was in the hands of highly trained medical professionals and God. Not mine. Therefore I prayed. I also called my dad and told him the situation, which prompted him to start driving our way from his hotel, about 30 minutes away in traffic. I also got on facebook and told people he had been admitted to the NICU.

This last step was very important to me. I don’t live in a vacuum, and I don’t want to. I know my friends would want to know. I know they would want to help. I know like me they couldn’t do anything physical at that moment, right then all they could do was what I could do: pray. I wanted to let them know that we needed prayers. This was important to me.

Some time went by, my wife got up to go to the rest room. I checked my phone. Someone came in who I hadn’t met before. She was the NICU doctor. She introduced herself and asked where my wife was and I told her she was in the bathroom. She took a seat in the chair I had vacated when she came in and I sat down next to her. She wasn’t telling me anything. She looked anxious and worried. I could feel the anxiousness and worry coming off of her. I can’t remember exactly what I said, but it was one of the following:

“Good news or bad news?” , “Is it good news?”

She shook her head from side to side. I signed.

“Is he alive?” I asked.

“Yes, but there is something I need to talk to you both about.” she said.

I signed again, in relief this time. My wife came and sat next to me. The doctor had been holding something in her hand, a piece of paper.

“Okay, I wanted to let you know that Micah has a heart condition. It is called hypoplastic left heart syndrome.” Here she gave us the paper, it was a picture of a heart with the words hypoplastic left heart syndrome written across the top of the page. “His condition is a congenital heart defect with no known cause. It affects the left ventricle of the heart, see,” here she pointed at the picture of the heart on the piece of paper, “this part of his heart should be as large as the other side. His did not grow, sometimes the doctor will catch it on the sonograms but just as often they won’t.”

We looked at the picture. It indeed showed a heart, except the left ventricle was shrunken.I honestly had no idea what that meant. I have always had a bad time with the circulatory system. Not from an understanding perspective, but from a staying-standing-while-people-talk-about-it perspective. In biology class in high school, the teacher said I turned as white as a sheet when we started talking about the circulatory system and was surprised that I took as long as I did to raise my hand to be allowed to go to the bathroom. I don’t have this response to the sight of blood or anything like that. Just the medical explanation of the heart and its system. So I knew basically nothing about the heart. And I only was able to grasp what she was telling me directly.

“Up till now he had an artery, the ductus arteriosus that was open which was keeping blood flowing to his body. It is open while we are in the womb and then a few days after birth it closes, since by then we are using our lungs.”

We nodded. I still really didn’t understand. But the why was not important to me yet. In the moment I don’t like to ask the why question unless it will inform a decision I am going to make. I knew at this point we weren’t there, we were at “This is what is going to happen” and that’s what I wanted to know.

“We have him on a drug now, progesterone, that works to keep that artery open. However, it is not a long term solution. He will need surgery for his heart, several actually, and that is where we are headed now. We are going to move him to Cooks Children’s in Fort Worth for the surgery. You can of course tell us to move him somewhere else, that is your right, but Cooks is closest and honestly the doctors that will be looking after him there and the surgeons are the ones I would want if it was my baby.”

We nodded. The thought, ‘Chicks dig scars’ flashed across my mind, knowing that Micah would have a pretty massive chest scar from this. Seriously, that was my gut reaction.

“Do you have any questions? Is the transport to Cooks okay? If so we will get all the paperwork going and get the transport team notified.”

I don’t remember asking anything beyond wanting to know when we would hear about the timing of the transport. My wife hadn’t been discharged yet, we needed to know if we were gonna need to split up or drive together. We gave them the okay for the transport.

The doctor had been good about the news, she looked us in the eye, she was sympathetic, she held our hands at the end.

“This is going to be a long road, but you are in good hands.” She said, and then she left us to go back to our son.

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