While we were chugging along with Nolan and the rest of our gang, we were told by our cardiologist that Nolan’s second open heart surgery was coming soon, but that he would have to undergo a cardiac catheterization first. The 2nd surgery was already this monster looming ahead of us, so another “procedure” is definitely not something we were looking forward to. We had an appointment with another cardiologist who worked in the cath lab. He was actually a really nice guy…and come to find out he was from Connecticut just like me! Of course, I had to ask him about a pizza place I love called Pepe’s Pizza in New Haven. This is my fav restaurant EVER. He said he was sorta related to the family that owned the place. I was floored…I instantly liked this guy. But anyway, on to the serious stuff: the cath was important because it allowed them to look at the heart’s functioning up close to see if he’s readyf or the second surgery. They would look at his arteries, the Sano Shunt that was put in during his first surgery, and his heart pressures.
Nolan would be brought in to the hospital for the cath and would be placed under anesthesia before the GI team would come in. Why GI? Well to this point, if you recall, Nolan has had a feeding tube since he hasn’t been eating by mouth. The G-Tube he had isn’t a long-term tube and would eventually need to be replaced by one called the Mickey Button (more on that in another post). The GI Doctor would remove the old G-Tube and put in the Mickey button before the cath team comes in to do the cath procedure. This involves entering an artery through the leg and moving a little camera up to the heart to have a look around. It wasn’t a lengthy procedure, but it was a necessary one…no way around the cath.
The doctor told us that occasionally they’ll see some things like narrow arteries or something like that, and it’s something they can repair right there in the cath: just open it up with a balloon. They can close things off too if need be. Of course, if that would be done, it would delay his 2nd surgery until that was fully healed. The goal of the cath is to ensure everything is a-ok before proceeding with another open heart surgery. The doctor also said that Nolan would probably be kept overnight at the hospital since most heart babies are slower to get their sats back to normal after the procedure so they give them some time and observation. The doctor did also say that eeeeevery now and then the sats don’t come up the way they want and they will go ahead and do the surgery within a couple days. That freaked me out. It’s enough trying to build yourself up for a surgery, but knowing the possibility it could be in a couple days? Yeah, scary. But the more I thought about it, the more confident I felt that Nolan was going to be ok. We just had to keep praying hard.
They set an appointment for Nolan’s cath and all we had to do was wait…
Ok, you’re probably thinking, “Here he goes talking about football one post after talking about his son’s surgery!” And yes, I’m gonna talk football, but not in the way you think. This was special.
Towards the tail end of Nolan’s first day at CVICU post-surgery, the staff at CVICU gave us a sleep room. This was AWESOME. It was a private room with a big bed and private bathroom, on the same floor but set away from everything. It was nice and peaceful and it was SO needed. We were wiped out and slept like rocks. If your hospital offers you sleep room, USE THEM. Seriously!
Anyways, the next morning, we went to check in on Nolan (he was status quo) before making the tough choice to leave him for awhile to go home and check on Grant and Hudson and get some fresh clothes and whatnot. We rode the elevator down to the lobby, still kinda in a fog from the day before. As soon as we stepped off the elevator, we were greeted by a bunch of Carolina Panthers Cheerleaders and staff. Don’t get ahead of yourself, this is not a “hurrr hurrr cheerleaders!” post; they were actually inviting us to a Christmas party the Panthers were throwing for patients and families. While that was cool, I politely declined, saying our son just had heart surgery yesterday. One of the cheerleaders asked how old he is and I said 8 days old. And then they all insisted we go in to the party. INSISTED. So we went. It felt kinda weird, actually…we didn’t have a kid with us and we were all ragged from the previous days. But I’ll tell you, the staff really went to a lot of effort to make us feel welcome. They were giving out toys to all the kids and they told us to pick out a toy for Hudson and to bring it home to him. It was so nice…and we needed that outpouring of love from complete strangers.
We got to see kids really enjoying Sir Purr, the mascot, and to see a few of these GINORMOUS football players trying to do Christmas crafts with the kids…it was hilarious. One behemoth of a man was trying to stuff tinsel into these tiny glass ornaments. It was the funniest thing I’d ever seen. There were kids there in wheelchairs and whatnot and they were having a ball…and that brought me joy. The players helped us make some ornaments for all 3 boys and even stockings for them too. To be honest, I can’t remember which players were there. It didn’t really matter, they were just so kind. Everyone showed genuine support for us.
And even better, it helped that one of their teammates – Greg Olsen – was going through the same thing as us. So when the players or staff would ask “Is it the same thing as Greg’s son?” we’d say yes and they would immediately understand. As we left the room so we could finally go home, the staff and cheerleaders said goodbye and that they’d be praying for us and Nolan. Wow. What a cool day that was. And what a blessing the Carolina Panthers were that day. I know football players and other professional athletes get a bad rap sometimes, but these guys were all class and meant the world to me that day. To this day the Panthers remain very involved with Levine Children’s Hospital: they frequently visit kids and bring gifts, and they absolutely model some incredible support for their community.
As we made the drive home to see our other kiddos, we talked excitedly about what just happened: we were blown away by the generosity and kindness of the Carolina Panthers!
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…
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.
This was a big day: the day to meet the renowned heart surgeon who would be working on our son. We’d heard a lot about Dr. Peeler, so I was looking forward to meeting him. We both took time off work to be there at like 8am on a Friday. Dr. Peeler was very straightforward…no flash, just facts. He talked about HLHS and then spoke about the first surgery that Nolan would be having, which is called the Norwood Procedure. Up until 30 years or so ago, there was no treatment for babies with HLHS. Zero. Survival rate? Zero. So basically this procedure was devised which would re-route some of the plumbing and make the heart function ok for a second surgery at about 6 months old (more on that way later). Interesting. And scary. I mean, this is relatively new stuff.
The good news is he told us that he’s done many of these surgeries and has a much higher success rate than the national average. That was really REALLY good to hear.
Whew. I went home and did my homework and found out that Dr. Peeler is good at this. Really good. Like, he’s the Babe Ruth of HLHS surgeons. Yeah, and he’d be working on our son. That felt really freakin’ good. And you know what? It’s good that he’s about his business…I want someone that can focus on my boy and do a great job at it…and he was just the one to do it. So Nolan’s life was practically in his hands…crazy, right? But Dr. Peeler is 50 kinds of awesome…and in future posts you’ll see why. Needless to say, I’m proud to have Dr. Peeler on Team Nolan! You’re the man Dr. P!