On July 17, 2013, after all his necessary pre-sugery work, we brought Nolan to Levine Children’s Hospital. I was pretty tense. Deep down, I knew and had faith that everything would be ok, but there was also the memories of the long recovery last time, with all its ups and downs and the fear that came with it. Luckily for us, Bekah’s college roommate Arianne came to stay with us and support us through this time. It was good to have someone there.
We took Nolan to the same room that he was in before his cath. They took all his vitals and we worked on keeping him happy. At this stage he was such a smiley little guy and whenever he was happy, be would kick his feet rapidly: I called it the Happy Bike. The anesthesia team came in to meet us and chat with us a little bit about the procedure. From there we prayed for our little guy and then it was time.
If you remember from way back in this blog, I talked about us walking with the nurses all the way down to pre-op with Nolan before his Norwood Procedure. We wouldn’t be doing that this time, and I wasn’t sure why. Instead one of the anesthesia team members held out his arms and I handed over our 7 month warrior…my hero…to be cut open for yet another time. While I was clinging to the faith I had, it was no less heartbreaking to see my little guy go. Next, though, it was time to go to that stupid waiting room that I hated so much. We checked in with the lady at the desk and saw that another of our friends, Karen, was already in there waiting for us. It was quite the surprise because we weren’t expecting her. It’s always good to have company during this stage.
And just like the first time we waited: we talked, we read, we watched tv, surfed the interweb, stared off into space. And periodically we’d get updates from the O.R.: anesthesia was completed, the first incision made, everything’s looking good, etc. Finally we got word that the procedure was complete and that Nolan was doing well, but it would be a little bit before we got to see him. I took that opportunity to go to our favorite Malaysian Restaurant to pick up some lunch. We ate and were very happy, but we were dying to see Nolan.
Finally we were allowed up to see him in the CVICU. It was crazy being back on that floor with its familiar sights and sounds and people. What was different this time was that Nolan was doing AWESOME and all those nurses were thrilled to see him and how well he was doing! Nolan was still a little out of it and was intubated, but all signs pointed to him doing well…AND His chest was closed! YES!
We held his hand and talked to him as he came to. He was in some discomfort, but he was looking great…even his color was amazing. The nurses and the rest of the heart team were very happy with his progress and the goal was to remove his breathing tube and get him up to Progressive Care within a day. And that’s what happened! Less than 24 hours after surgery, Nolan’s tube was out and we were already out of CVICU, which was bittersweet. Back to Progressive Care, where things were a bit more challenging. This time, though, we knew what to expect.
It was amazing how much better Nolan looked after the Glenn Procedure: his color was much better and not so pale, and his oxygen sats went from low 70’s pre-surgery to 85 post surgery. YES! Now for the recovery phase…one day at a time…
One of my hobbies is photography: it’s just something I love to do. I had the great opportunity to join the photography team at my church as a volunteer, which I REALLY loved. It gave me an opportunity to have free reign of the place, to wander around and capture some great images. Of course, with the birth of the twins, all photography activities were on hold.
In February, however, I received an email from the photography coordinator that there was an upcoming event at our church mid-week called Code Orange Underground. This was an invite-only special event for church volunteers and leaders. The coolest part of it is that you never know what will happen that night, it’s always a surprise. Sometimes it’s guest speakers. Sometimes it’s bands. You never know. I talked with my wife and she said it would actually be a good idea for me to do it: I had the day off work (can’t remember why exactly) so I could go see Nolan much earlier than I usually do, and would have time in the evening to go to church. So I signed up and got the ok to shoot for the event.
I spent the earlier part of the day visiting Nolan, which was really nice: he was very happy and playing with some of the toys that the staff brought to him. At night I loaded up my equipment and headed for church, which was PACKED. I got there early for the sound check to find out that the surprise guest for the evening was none other than well-known worship leader Matt Redman! I was very excited because Matt wrote and performed a song called “Never Once” that has resonated so much with me before, during, and after Nolan was born. The lyrics say, “Never once did we ever walk alone, never once did you leave us on our own. You are faithful, God you are faithful.” TRUTH. And it was a truth I constantly needed when I was down or when things got tough. We sang it a lot in church and I was hoping he’d sing it that night. Here’s the song if you want to hear it: http://www.youtube.com/watch?v=722zPX1npcA
So the night was an awesome one, though there were way too many people there and a bit too many photographers. But I still enjoyed the opportunity to break from my little routine and do something I loved. And yes, Matt did perform “Never Once” and it was amazing…I just put the camera down and joined everyone else in worship. I was really blessed to be there. As a heart dad, I think it’s important to know your responsibilities, but it’s also important to remember that you’re only human. And you need to take some time to do the things you love, even though your life and your schedule will be crazy. If you ignore those things you will lose your mind and become just like your schedule: crazy.
One of the cool features of Nolan’s Progressive Care stay was the TV in the room. Sure, it had your standard remote/call button combo, but you could also plug it in to a keyboard and access movies, music, and websites. That was pretty dope, so I worked it into my visits with Nolan. I’d go to see him, turn on Pandora on the TV, and turn on the station for my church’s worship band: Elevation Worship. Then Nolan and I would sit in a rocking chair and just rock and listen to some worship music for hours. It would become the best part of my day by far. Most of the time Nolan would sleep, but sometimes he’d just look at me for long periods of time.
One day, though, things were different. It’s funny because there wasn’t anything inherently different about that day: I wasn’t having a bad day, I wasn’t bummed out about anything…it was just a regular day in the neighborhood. I had Nolan in my arms and we were rocking away in the chair. At one point I just looked at him: marveling at his big eyes and his cute little nose. And I whispered to him, “I love you so much, I would do anything for you.” Then BAM. He did it again, God decided to show up. Not physically show up, but more like make a PSA in my heart. You’ll remember from https://hlhsdad.wordpress.com/2013/11/03/dear-god-its-3am-im-scared-and-i-dont-like-you-right-now/ that God did the same thing when I was struggling before Nolan’s surgery.
Just like last time, the word was very still and quiet: “Now you see how much I love all of you, and you are all born broken.” WOW. And then – this is gonna sound weird – it’s like God gave me some kind of deep understanding of His love. You know, we all know John 3:16…we memorize it, we see it on signs at football games, people put it on business cards. But do we really know what it means for God to love with an overwhelming, totally-forgiving love? Like do we REALLY know what that means? I loved my son so much, I just wanted to pour out every bit of me to make him feel loved and whole, even though nothing I could do could make him whole. But in that instant God used that example to show me what His love was really like. All I can describe it as was heavy. Really, really heavy, like the vastness and greatness of His love was bearing down on my shoulders to where I couldn’t stand the presser and was overwhelmed. And that was just a glimpse.
And just like that, I was back in the rocking chair in Nolan’s room with him in my arms asleep. And on Pandora, the song “How He Loves” by John Mark McMillan came on. Almost as if right on cue. I was completely speechless. And overwhelmingly moved. I listened to the words of the song and played that whole experience over and over in my mind. Oh how we take God’s love for granted, especially since we’re all messed up: not always physically. I think no matter what we’re going through, we need to stop and really think about God’s love. About how much He loves us in spite of the abuse and rebelliousness we hurl at Him. His love is so strong and only He has the shoulders to bear it all. Thank you God for your love. Thank you for showing me your love in a hospital room. Thank you for showing me there’s so much more than what’s in front of me.
After my little (big) 3am moment with God, 6am finally came…and way too soon. The nurse came in and in the nicest way possible, told us it was time for Nolan to go down to pre-op. She did say we could go with him, though, which I’m not sure is a good or bad thing. I begrudgingly handed over my son as two nurses got him situated in his little bed, packed everything up, and whisked him down the hall. And let me tell you, these ladies were HAULIN’. I have a pretty big stride and I was struggling to catch up. Not to mention I hadn’t slept in Lord-knows-how-long and I probably smelled like a bad fungus. Anyway, we walked down several hallways and seemingly took like 3 elevators…and the whole time I walked in silence, but inside I was absolutely scared to death.
How scared? Back when I graduated 8th grade, I got one of those portable basketball hoops as a gift. We used my uncle’s truck to bring it over to my cousins’ house for a graduation party at their pool. To weigh the hoop down in the back of the truck, we all sat on the base of it (the part you usually fill with water). When the party was over, it was time for me and my hoop to go home, but my cousins didn’t feel like helping. So I was like, “Fine, I’ll do it.” And off we went. At some point on the highway, we hit a bump and the hoop – and I – was airborne. The hoop pretty much flipped up from under me and the basket was scraping along the road. I would’ve been tossed from the truck if I hadn’t crashed into the tailgate…thank God it held. So yes, THAT was the scariest moment of my life…until now…
The whole time I kept thinking in my head “Be strong and courageous. Be strong and courageous. Be strong and courageous.” But you know what? It was really hard. If I hadn’t had my moment with God and without His guidance, I would’ve been a hopeless wreck. We got to the surgery floor and there were people EVERYWHERE, it was like Grand Central down there. They pushed us into the Pre-Op area, where we consoled our little baby, and each other, and got to speak briefly with the anesthesiology team about what would be going on. I tried my very best to look strong even though inside I was crumbling. Finally the time arrived and the medical team to get Nolan and we couldn’t follow. I leaned down to kiss Nolan lightly on the head and I tried my best to say “It’s ok buddy, be strong” but I’m not even sure I got every word out, because I was so choked up and my eyes were tearing. I reached out to gently stroke his cheek, possibly for the last time, and my hands were shaking uncontrollably. I remember walking over to this little sink area there and grabbing some paper towels…my immediate thought was that they would be for my wife. Yeah right, they were for me. They wheeled our 7-day old away and that was it…we stood there without our son, leaving him in the hopefully-capable hands of strangers. A nurse came to take us to a waiting room, and I put my arm around my wife and just cried.
The male mind is pretty basic…whether you’re a handyman or not (I’m not), your mind always goes towards “fixing.” You want to fix what’s broken, find the problem and repair it. Here, I had something I couldn’t fix…and never could. I was absolutely, positively, helpless and I didn’t know what to do but wait…and have a lot of faith. And that’s all you can do too. I promise you, the HLHS experience is absolutely terrifying, and I’m not being dramatic. You will have spent your whole life seeking control, in some fashion, and then that control goes out the window in a flash…as quick as a diagnosis. So you’ll have to learn to cope, learn new strategies, look for small victories, etc. It’s a journey, but please remember you’re not in it alone…
Yes, the title of this entry seems a bit extreme, but it’s the God-honest truth, so hear me out. I personally feel like this entry is one of the most important ones in this whole journey because of what it represents, so don’t let the title scare you away.
Prior to arriving at CVICU with Nolan the day before his first surgery, I had gone through a lot in my head. I was sad when we found out about Nolan’s heart, I was scared, I was hopeful. Pretty much by this stage in the game, I was working really hard on having the faith that God would get Nolan – and us – through this. I remember sitting in this horribly uncomfortable rocking chair in Nolan’s room, with a pillow under my arm, and I had been holding my sweet Nolan for hours. We just hung out together: I talked to him, I hummed songs quietly to him, I prayed quietly…a lot. All in all, I was nervous but feeling pretty good. Then 3am came.
I know it was 3am because I remember looking at the time and thinking “Geez, 3am…3 hours to go.” Then it hit me: DOUBT. FEAR. As I sat in that chair the words from the heart surgeon boomed in my head: “20% of kids don’t make it through this part.” And I freaked. And then I got pissed at God. In my mind I was furious, I remember thinking “How DARE you, God? How dare you put us through this? Haven’t we been through enough? Why would you let me bond so well with him if there’s a chance I don’t ever see him again past tomorrow?” I was beside myself, I was shaking, trying to have this mental/verbal spar with God, all the while “20%” kept chanting in my head.
As soon as I said my peace, the doubts went away. And not faded away, it was like BAM, gone. Then this incredible peace came over me, it was almost warm. Then a voice came…not an audible one, but one that spoke to my heart and quoted Deuteronomy 31:6, “Be strong and courageous. Do not be afraid or terrified…For the Lord your God goes before you. He will never leave you nor forsake you.”
And that was it…
Wow. WOW. So here I was, broken down to nothing, having this toe-to-toe with God and God showed up and basically said “I got this.” I’m sure some of you will read this and think I’m nuts. That’s ok. Some of you will read this and thing it’s sacrilege to be so angry at God. That’s ok, too. But if you want my honest opinion, I think God’s ok with anger sometimes. Of course, it’s not ok to get angry and kill someone or anything like that, but this is different. Anger is an emotion all humans have…and God created us. I think in that moment, my 3am moment, I was trying SO hard to have strong faith, but I’m sure a lot of it was my own efforts instead of just trusting God. So I got angry…and by getting angry, it stripped away every wall, every pretense between me and God. So it was just me and Him, nothing else in the way. And He spoke.
Tony Evans once wrote something to the effect of “When you hit rock bottom, you find God is the rock at the bottom.” That’s for darn sure. So I knew from that point forward, “Be strong and courageous” needed to be the thing echoing in my head…not doubts. I was still a little scared, no doubt about it, but it was different this time. My faith had teeth. See, I think all I wanted was to be in control…until I was reminded that was impossible. Then God reminded me He’s in control.
So when is a time you broke down and were honest with God? Maybe you need to have that honest talk where you bare your soul honestly before him, whether that looks like anger or “Hey God, I just don’t get it.” Either way, do it. God is God, I doubt he’s gonna be offended by you. In my case he showed up BIG…I think if I didn’t have that moment, I would’ve missed out and would’ve been a TOTAL wreck during Nolan’s surgery and recovery.
Side note: thanks to everyone who’s been reading, following, and sharing this blog. My hope is that through sharing my journey with Nolan, that I can help people cope through their journey or learn about the journey they’re about to go through. Please feel free to comment whenever you like!