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…
I hope everyone had a great Christmas and New Year! Thanks for your patience while I took some time to spend with my fam. Now back to it:
While in Progressive Care with Nolan, we were introduced to one of the cardiology Nurse Practitioners, who told us about a program called CHAMP. This stands for Complex Congenital Heart At Home Monitoring Program, and she told us that this was a program we would use to “ensure he lives until his next surgery.” WHOA. That scared me because I really didn’t want to think about the possibility of something happening to my boy at home, but I knew it was something we had to do for him. What I eventually learned in the long run is that there is a percentage of kids who will survive the Norwood Procedure, but will not make it to the 2nd procedure (the Glenn). The CHAMP program is an effort to lower that number and get HLHS kids to that 2nd surgery. I’m all for it!
The gist of the program is that eventually you will go home from the hospital with your child…there will be no doctors or nurses around…there will be no one checking his vitals…there’s just you, the parents. So the program sends you home with an oxygen saturation reader and a scale. Everyday you are to take the baby’s sats and weigh him and log both numbers in a binder they give you. Not only will that allow you to track and show weight gain, it allows you to see any trends that are happening, whether positive or negative. For example, you will be able to see – over the course of several days – whether oxygen saturation has been trending downward and/or weight gain has been stagnant. You can then call the cardiologist and say, “I’ve noticed that on this day he was at this and today he’s at this.” It gives a much better picture to your medical team as opposed to you calling out of the blue like “OMG OMG OMG he’s breathing hard, AHHHHH!” A better picture gives doctors better options: they can choose to have you come in, admit the child back to the hospital for observation, or just have you wait and do more observation at home. But it must be consistent: everyday at the same time.
So part of what we had to do at the hospital was learn how to use the scale to properly weigh Nolan and how to use his sat reader. It was relatively easy, we just had to be diligent with it. I think, far and away, the worst part of the CHAMP binder is the “Red Page of Doom,” as I call it. This is a page that gives you all the warnings, the “if you see this, call us IMMEDIATELY” kind of things. And it’s quite a list. If he has labored breathing, if he turns blue, if his sats drop below 75, if he doesn’t gain weight, if he’s sweaty, if he’s clammy, and on and on and on. It’s enough to make you paranoid, honestly, especially when you turn on his sat reader and it starts out at like 72 before slowly and eventually climbing up to 76. It’s like 45 seconds of terror. A bit of a spoiler alert, though: we learned, after a few freak-outs, that sat readers aren’t perfect machines. You need to use a combination of the machine and your two eyes. Sometimes the sats can read low, but if you look at the child, he isn’t in any kind of respiratory distress. It took a few phone calls to the doctor to learn that lesson, so hopefully I’ll save you a freak out or two!
Anyway, while the CHAMP Program was a big responsibility, it was a necessary step to Nolan’s survival AND a necessary step closer to getting out of the Hospital.
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…
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.
After a couple days of both boys being in the NICU, we were told that we were going to speak with the surgeon. Well we already did that, right? Well yeah, we did meet Dr. Peeler, but this time we’d meet the other surgeon, Dr. Maxey. My first thought was “Ok, what can he tell us that we don’t already know?” but we agreed. Dr. Maxey chose to meet us in the NICU so we could be close to our kids…definitely a nice first impression. He was very kind and personable and pulled up a chair and said, “I’ve cleared up my schedule to be sure I give you all the time you need to have your questions answered.” WOW! That’s pretty special, right?
So Dr. Maxey gave a quick rundown of what HLHS was, which we were pretty good with, and then began to describe the initial surgery, which was called the Norwood Procedure. He was very, VERY clear that the Norwood Procedure is a very serious open-heart surgery. It is intricate and challenging and a baby’s heart is roughly the size of a quarter. A QUARTER. How the heck do they do surgery on that?! Then he said something that absolutely wrecked me: nationally about 20% of kids (1 in 5) do not make it through the Norwood Procedure. Oh my God. BUT, he said, he and Dr. Peeler have a ton of experience on the Norwood and do each Norwood Procedure together. He said their rate of success is 97%. Whew, that’s much better. But…what if Nolan ends up as that tiny 3%? How would I cope? What would I do? Is that even fair?
Dr. Maxey was such a nice guy. He did a great job of reassuring us we were in the best place for Nolan, but still reminded us that this surgery was very serious and could take upwards of 6 hours or more. He said sometimes they won’t be able to close the chest post-surgery due to swelling and that’s ok. He said he had time and asked us if we had any questions. I’m not sure if I even asked him any…honestly I was nervous for my son and just as much nervous for myself because I realized I’d never been so anxious in my life. Surgery was set for the morning of December 17th…7 days after Nolan was born.
I enjoyed meeting Dr. Maxey: he does a great job of being informative and reassuring. He and Dr. Peeler make a great team.
When you’re preparing to deliver a HLHS baby, there’s a really good chance you’re going to hear a cardiologist mention the ductus arteriosus, or just ductus for short. When babies are in the womb, their oxygen is provided by the mother’s lungs and placenta. So to save energy, blood doesn’t need to be pumped to the lungs, so the ductus arteriosus allows the blood to bypass the lungs and get out to the rest of their little bodies. Again, this is present in ALL babies. When your little one is born, though, they need to use their lungs, so this ductus typically closes within the first few hours of life. For a fully healthy baby, that’s normal and no big deal. For an HLHS warrior, though, this is pretty important to monitor. In HLHS babies, the right ventricle has to do double the work, of pumping blood to the lungs AND out to the body. An open ductus allows it to pump blood to the body, but once that closes up it really diminishes the amount of blood flow to the body, which is very dangerous.
But before you freak out, this is something cardiology looks out for…or at least, they should. And if they don’t mention it, ASK. Anyways, if the ductus does look like it’s closing up, they can use medicine called prostaglandins to keep that ductus open until they’re ready for the Norwood Procedure.
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!