I definitely can’t write about Nolan’s journey without taking the time to speak about the staff at the Cardiovascular Intensive Care Unit. Everyone, and I mean, everyone there treated us like royalty. They were polite and thoughtful, they took time to answer our questions, and always asked if we needed anything. Shoot, CVICU even had free snacks and whatnot! Cartons of chocolate milk became my daily habit…yum. The nurses we had were amazing, every single one. We would talk about what the near future would look like for Nolan, we’d talk about what brought them to Charlotte (if they weren’t originally from here), we’d talk about music, tv, and movies. Sometimes things got funny: like when they’d ask me where I worked. When I’d answer hospice, they’d all act the same way: “Oh my gosh, I don’t know how you do it!” and I’d be like, “Really? Really. You got kids here with chests open and on fifty billion machines and you ask how I do it?!” Or even better, there was one night I was with Nolan and I was just WIPED OUT…so I sat in a chair in the room with my head on the window sill and I was out cold. So the nurse turned down the lights and stepped right outside the room to the nurse’s station. I awoke a little while later to overhear a couple of the nurses talking about their dating lives, and it made me laugh. They’re both human and superhuman at once.
I do want to talk in particular, though, about one nurse: Stirling. She was Nolan’s first nurse after his surgery and she did a lot to make us feel at home at the CVICU. The first thing you notice about her is that she works really hard, yet is always really happy and positive. And she loved the mess outta Nolan, you could tell. One day we were talking with her about how Hudson wouldn’t be able to meet Nolan for a long while due to the flu ban. So what did Stirling do? She made Hudson a little card and signed it “From Nolan.” It blew my mind. I mean, Stirling was busy keeping Nolan alive, and if that’s all she wanted to do, that would be a-ok with me. But she went way above and beyond that. It was so kind and thoughtful. And she kept on doing things like that: getting him socks or a little hat to keep him warm, or finding fun blankets to put in his bed. Even when Stirling had to rotate on to another patient, she always made time to come visit Nolan. We were blessed to have her as Nolan’s first nurse: she’s the prime example of what makes the CVICU at Levine Children’s Hospital so great: we really felt like VIPs there, even though we didn’t necessarily want to be there, if you know what I mean.
In the days following Nolan’s Norwood Procedure, we fell into a good routine: go see Nolan, come home, go back to see Nolan, come home for the night. The reason for all the travels was because a declared flu season left us in a tight spot
The hospital had a rule that in a declared flu season, no one under a certain age (16, if I recall) could visit, in an effort to keep everyone flu-free. This was a problem for us because we had a 2 year old and Nolan’s newborn twin at home. We did as well as we could, getting people to watch the kids so we could go spend time with Nolan, or Bekah and I would trade off during the day. Honestly, it was exhausting. Plus it didn’t help that Grant wasn’t doing the sleeping thing just yet. So there was a lot of getting up during the night with him and THEN running around back and forth. And even when I did sleep, I didn’t sleep well because I found that fairly often I would have really bad dreams about Nolan laying there in his condition or – God forbid – something bad happening to him. Over time, thank God, those went away.
Our first days post-Norwood were pretty nerve-wracking and somehow fascinating at the same time. Nolan had two nurses, and he was their only patient. That’s an important thing: he was pretty much their world for their whole shift, and it was good to know there was always a close eye on him. Anyway, I say it was fascinating because these two nurses were working non-stop…I mean NON-STOP. One would be checking the med pumps while the other drew meds and administered them, then the other would draw other meds. It was amazing, they knew EXACTLY what to do, they didn’t go off any set of instructions, they just did it. And they were constantly moving, never bumping into each other…it was like a kind of dance. And still, in the midst of this, they would always take the time to give us updates, and answer all the questions like “What med is that? What does it do? What’s that bubbling sound?” We got to meet some Nurse Practitioners and other cardiologists, and every morning and evening that team would go room to room for rounds to discuss patients. They would always take the time to give us an update and ask if we had any questions. It meant a lot to be part of the process.
Meanwhile, Nolan was still pretty swollen and his chest was still open. As the days wore on, I got more used to his chest and it became a lot less creepy. I would gently rub his foot and talk to him, even though he was pretty heavily sedated. There was even room for smiles here and there: one day we came in to see Nolan and one of the nurses used a piece of paper towel and cut it and decorated it to look like a little tuxedo shirt and bow tie, and just laid it on his chest. It was a nice way to cover things up and it was very cute and put a big smile on my face. It was just the beginning of the nice things the staff at Levine Children’s Hospital would do for us.
We also waited…a lot. Nolan’s swelling had to go down before they would attempt closing his chest, so we continued to wait. I would talk to him, just watch him, and pray for him so much.
Once we got word that Nolan’s surgery went well, all we had to do was wait for an ok to go up and see him. It seemed to take forever, but having our friend Marc there to keep us company helped pass the time. Finally someone came to get us and brought us up to the CVICU to his room. And what I saw shocked me:
My little boy. My 4 pound baby was hooked up to so many machines. I was shocked. Completely numb. I don’t even think I said anything, I just couldn’t. In my mind I prayed and prayed, then prayed some more. Meanwhile the room was buzzing with nurses moving back and forth rapidly, giving meds, checking machines, etc. It was nuts. I couldn’t believe how swollen Nolan was…it didn’t even look like him. And (WARNING: PHOTO AHEAD), as Dr. Maxey noted, his chest was still open and I could see his little heart beating:
It was all so scary. I vaguely remember speaking to one of the nurses, but most of it was some Charlie Brown-style wah wah wah. Something about them doing an x-ray or an echocardiogram to see how his heart function is. I was just in complete shock. I mean it was kinda freaky seeing his chest open like that…ok really freaky, plus I was just kind of amazed at our medical technology and skill: they could perform surgery on a heart the size of a quarter AND they have all these machines that keep him healthy through recovery. Man, I couldn’t begin to list all the meds he was in: pain stuff, sedatives, meds to help with fluids, stuff to serve as feeds, he had a chest tube that was draining lots of gunk, AND he was on a breathing machine.
Besides the shock, I felt really exhausted in that moment. It’s like so much led up to this point and when I walked into the room it was the crushing reality that so much more was ahead. We had this huge mountain to climb together, except it’s like we had to climb it in the dark, since we wouldn’t know what to expect on a day-to-day basis. I had to get used to the new reality: this room would become our second home, and we’d have to get used to the beeping and whirring of so many machines and the visible beating of our son’s heart.
People like to say that “being a man” means being tough. I promise you, Dads out there, the “tough” you’ve known your whole life is garbage when you go through this process. The moment I saw my son like this it sucked the tough outta me. I had to learn what tough really is. And how did I learn that? I looked at that 4 pound baby to lead by example. THAT’S tough.
The nurse who escorted us from pre-op took us to this large waiting area. We had to check in with a very nice lady at the desk, who gave us a number, which would identify Nolan on the big screen on the wall. It showed patients in pre-op, surgery, and post-op. She told us to have a seat and she would give us periodic updates on the hour. Surgery was scheduled to begin about 8 and it was still pretty early. We picked a couch to sit on and tried our best to relax. Once we sat down and had a good hug, we realized how exhausted we were. I mean we hadn’t slept at all. Before I knew it, both of us had dozed off. You know how you get that feeling that someone is watching you? Well I had it and popped my eyes open to see our friend Darren sitting there across from me. Dude scared me to death! I was like, “How long have you been there?” and he said, “Long enough,” which is code for dude you were drooling. Darren is a pastor and an awesome guy, and used his chaplain credits to get in to hang with us, which was really cool…we definitely didn’t ask him to do that.
And you know what? I’m thankful for him. He prayed with us and just was there as a friend. At 9:11am the lady from the desk came up to me, asked my favorite question (“Do you speak English?”) and then told us that the surgeons have made their first incision and everything is going well. Well that was late, but at least they got started. So while we waited and I drank like 40 cups of coffee, Darren entertained us with a bunch of hilarious stories about his father-in-law. I mean laugh-out-loud stuff. I know this is going to sound crazy, but for a little while, it took my mind off of what was going on, and I’m so thankful for that. I like to laugh…as much as possible, in fact, but laughter didn’t seem like it was on the menu this day, but Darren changed that for us. The lady came back every hour to let us know things were still going well.
Eventually Darren had to leave, and Bekah and I moved to a different couch up against the wall. We watched and listened as people received their updates, left to see their loved ones in post-op, and basically sat around waiting like us. I definitely didn’t feel like chatting with any of the other waiters, so I didn’t. Eventually Bekah fell asleep on my shoulder…and I think I might’ve fallen asleep too, because I don’t remember getting updates during this time. Finally after about 5 or 6 hours of waiting, my legs and back were stiff so I decided to get up. I got a drink of water and decided to mosey on over to the screen to see where Nolan was on there. I looked at my sheet with his ID number, then looked at the screen…then to the sheet, then to the screen…and again. Um…his number wasn’t on there.
“OH NO,” I thought, thinking the worst. I could immediately feel my body heat up like 50 degrees. I turned to the lady at the desk and frantically said, “My son’s not on there. Why isn’t he on there?!” She was checking…and I was freaking. I was fearing the worst. She said something like “It probably means he’s out of surgery, I should get a call real soon.” And I was like “Probably isn’t enough!!!” And so I stood there…staring at that screen, arms folded, hoping and praying for Nolan’s number to show up in the Post-Op column. Nothing…nothing…still nothing. God, it felt like hours.
Suddenly the doors behind me opened. I turned around and saw Dr. Peeler, Dr. Maxey, and the rest of the surgery team, still in their scrubs. I sucked in a breath and held it, and waved a feeble hello. Dr. Peeler said “Let’s go talk with your wife” and I said ok and walked across the room on the shakiest legs EVER. I sat down next to Bekah and nervously held her hand. The team sat across from us in a half-circle. Dr. Peeler was the first to speak and said, “The operation went as well as expected, and he’s going to post-op now. Any questions?” And I was like uhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh. Dr. Maxey chimed in, saying everything went well, but that due to swelling and Nolan’s small size, they were unable to close his chest, but that’s not uncommon. He then asked if we had any questions and I specifically remember saying “No…I am just SO happy to see you guys.”
What a relief…Nolan made it! Now we just had to wait for someone to get us and bring us up to his room at the CVICU. During that time, another friend of ours – Marc – came from work to hang with us. It was so good to see him too. And he brought Starbucks! My man! I remember he brought a chocolate chunk cookie and I ate the crap outta that thing, I was so hungry.
Thank God for good friends. Thank God for a great Hospital. And thank God for a great surgery team!
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!
On December 16th, at 6 days old, Nolan was finally broken out of NICU for good. He was on his way up to the Cardiovascular Intensive Care Unit (CVICU) for some observation and so the team can get ready for him post-surgery. As we inched ever closer to surgery day, things felt incredibly tense, and I was just trying to keep my faith up and be strong. We got to CVICU about mid-day and it was an opportunity to see Nolan without that stupid bili light mask on, though they said he’d need to continue to light treatment as soon as they settled him in, which sucked. A nurse was getting him situated in this huge room and eventually a Nurse Practitioner named Lindsay came in. She noticed I was wearing a shirt from church and noted she went to the same church but a different campus. That was cool and helped cool things down a bit. Meanwhile, Nolan was just being SUPER fussy. My wife and I felt like he was just miserable with the mask on and wanted to be held. Finally Lindsay just picked Nolan up in her arms and gently rocked him back and forth. It’s funny: I can close my eyes and picture this part so vividly and I don’t know why. Maybe because it was so unexpected? I don’t know. I just think it was awesome to see this complete stranger show complete human care for our son. And you know what? He calmed down. So Lindsay said no more bili light…he’d had enough and was fine enough to be with his parents for the day. And she was instantly my hero.
They got Nolan all snuggled up in bed to rest for a bit, then brought in a couple chairs to sit in when we decided to hold him.
And that was it…we waited. At 6am the following morning they would come for our one-week old and whisk him away to some of the most serious surgery possible.
In the meantime, though, I definitely wanted to take advantage of my time with him, so Bekah and I took turns holding him…all night.
This is one of my favorite pictures of me and Nolan. I love looking back on it and I’m amazed at how tiny he was. And even better, he chose just that moment to open his eyes and look up at me. A great moment, indeed…
The Norwood Procedure is the first surgery for all HLHS babies and usually occurs sometime during the first week of birth. It is the most complex and highest-risk procedure that an HLHS baby will go through. Since the heart’s left side does not pump well, the heart is rebuilt so the right side of the heart becomes the main pumping chamber.
The blood vessel leaving the right side of the heart called the pulmonary artery is divided. The far end (the end closest to the lungs) is sewn shut. The near end (the end closest to the heart is sewn into the aorta, which is the large blood vessel leaving the left side of the heart. A patch is sewn in this area to make the “new aorta” or neo-aorta bigger and stronger. Now all the blood leaving the heart goes from the right side of the heart through the pulmonary valve and out to the body through the new aorta. The wall between the heart’s two upper chambers is removed. This allows red blood coming back from the lungs to flow from the left upper chamber to the right upper chamber. The blood then goes to the right lower chamber and out to the body.
After the Norwood, the right ventricle pumps blood to both the lungs and the body. The Norwood procedure re-routes the blood flow around some of the defective areas of the heart by creating new pathways for blood circulation to and from the lungs. Nolan will be having a variant of this procedure called the Norwood-Sano, which means that a Sano shunt is being utilized. The Sano Modification of the Norwood involves the placement of a conduit (light blue tube in the picture above) between the pulmonary artery and the right ventricle.
The recovery period for the Norwood procedure averages 3 to 4 weeks, but please don’t be surprised if it’s longer (you’ll see). I can’t stress enough how serious of a procedure the Norwood is: it’s not a simple 1-hour fix, and it’s only the first of 3 surgeries an HLHS baby will need.