Category Archives: CVICU
Christmas is my favorite holiday, by far. I love the time of year and I love giving gifts. This Christmas, however, was a bit different. Yes, the tree was up and we had gifts bought and wrapped, but having Nolan in the hospital during Christmas made things feel just a tad off. We did get to take Hudson to see Santa at the clubhouse in our neighborhood, and that’s always fun
He’s so big and such a good big brother. The great thing was that he’s at the age where he can start to get into Christmas, so unwrapping gifts with him was a lot of fun. Even Grant got into the festivities:
Otherwise, Christmas was a blur. I can’t remember what we ate, I can barely remember what people got. It was a complete blur. Of course the other thing is that we had to make time to go to the hospital to see Nolan. At this stage he was starting to slowly come out sedation and would open his eyes from time to time. It was good to see those beautiful eyes, but sometimes they just looked so sad and it broke my heart. Sometimes his mouth would open like he was trying to cry, but nothing would come out due to the breathing tube in his throat. As we prepared to head to the hospital, the first thought in my mind was that this Christmas kinda sucks because Nolan was still in the hospital and we couldn’t have him home and be celebrating all together as a family. On the long drive down, it didn’t help that no one was on the road and nothing was open. It was Christmas after all. We got to the hospital and did our normal routine of riding the elevator to the 6th floor and being buzzed in and making our way to Nolan’s room. When we got there is when my tune changed. Nolan’s room was facing the front of the hospital, so it had a really big window, and all along the window sill were Christmas gifts from complete strangers. There was little stuffed animals, a pillow pet from another heart family, some books, and even a stocking of things for us. I was just completely blown away. Whoever left these things didn’t know us, but did it out of kindness. And you know what? I really needed to see those things there; not because it was free swag, but because it was done out of love. I started to count my blessings: I had to healthy boys at home, and Nolan was doing better and better in the best hospital around. I realized that in spite of our troubles, we had it real good. We had a home, we had food, I had a job. Thank you God! It was a great Christmas after all. And even better, Nolan’s nurse took a picture of Bekah and I with Nolan, which was our first picture together with him:
Now in a totally non-serious note, I do want to take a second and highlight my fav gift that was in Nolan’s room that day. A church (I don’t remember which one) brought Nolan this stuffed animal and blanket combo, and if you squeezed it, it would make the sound of the animal. Nolan’s animal? A GIRAFFE. What sound does a giraffe make? I just had to know, so I squeezed it. And I was TERRIFIED. Apparently a giraffe sounds like a combination of of a chimpanzee and a kookaburra both being set on fire. It was one of the funniest things I’ve ever seen/heard and I couldn’t help but show it to like every nurse and staff member at the CVICU. That thing was hilariously freaky and I am SO thankful to that church for bringing it lol.
As promised, Dr. Maxey waited about 10 days or so before attempting to close Nolan’s chest again. Again, we gave authorization and made our way to the hospital. When Dr. Maxey came out, he once again told us that Nolan wasn’t yet ready. He closed the chest, Nolan didn’t like it too much, so he re-opened it most of the way but left in 2 sternal wires holding it together. But after observing him for a little while, those wires had to come out and the chest had to be re-opened. UGH. In a moment of incredible honesty, Dr. Maxey said to us, “You know what, I blame myself. I rushed him and we could’ve just waited. So we’re going to wait until he’s ready.” Talk about deflating…AGAIN. The darn kid needs his chest closed so he can begin making some progress in his supposed 4-week recovery, but here we are something like 2 weeks in and we’ve gotten nowhere. ARGH!
Well this sucked. Again the nurses tried to be hopeful, and I was left wondering how many times we’d have to try this. Each time you build yourself up, you become hopeful and then it’s all deflated. Then you realize just how stinkin’ exhausted you are, but you feel bad for even wanting to mention it. The thing is, this wasn’t going to our plan, but I had to believe the doctor’s know what they’re doing…so if they wanted to wait, then we were going to have to wait. It was starting to feel like this was going to be a very, VERY long road.
I believe we were at home, preparing to head down to the hospital, when we got a call. We always knew when the hospital was calling because it shows up as something crazy like 1-9380993908230983098 on our phones. Anyways, it was Nolan’s nurse, who told us that Dr. Maxey wanted to attempt to close Nolan’s chest and would need our authorization. We gave it and quickly hit the road for the hospital. The cool thing about Nolan’s room in the CVICU was that it could also serve as an operating room, so that for procedures like this, he doesn’t have to be moved and unhooked from anything. We checked in at the nurses station, then waited in the waiting room. We were told it would take like 40 minutes or so, but I we were waiting well over an hour. Finally Dr. Maxey came out…when I saw him, I was hopeful. He sat down across from us and said that he attempted the chest closure, but that it didn’t agree with Nolan and he had problems with his pressures, so they had to open the chest back up. Talk about deflating. He said he would wait about 10 days or so, to let him get more fluid off. We went back to see Nolan and the room was busy with nurses. One thing of note was that Nolan had a bunch of ice bags around him…because he actually coded for a brief moment during the closure. But apparently God didn’t want him yet and everything turned out to be all good: his brain function was fine and his heart function was good too. We just had to continue to wait.
This day kinda shook me because of how real this situation continued to be. Nolan was so fragile in his condition and it could change any minute. I continued to try to hope that things were improving, but honestly everything looked like it just stayed the same. The nurses re-assured me that things were ok and that this wasn’t totally unusual, so I tried to keep that in mind as I continued to shuttle back and forth between home and the hospital. Sometimes it was hard to come home to a completely healthy twin after leaving a twin hooked up to so many machines for his survival. It didn’t seem fair. Other times, I was thankful for a healthy Grant and a healthy Hudson, who took my focus off the bad and put it on the good.
Being a heart dad is definitely a marathon, not a sprint. And unlike a real marathon, I don’t really think there’s any way to prepare for it, not completely. I mean you can read up about it and talk to other heard dads (and I hope you do!); but there’s no anticipating the emotion that comes with it until you’re in deep. And fortunately, that’s where having connections helps…you’ll need people to fall back on.
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.
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…