I remember being at work one day when I got a call from the weird 1-390340928302984 number, which meant the hospital. Usually these make me briefly nervous as I never know what to expect. I answered and it was Nolan’s nurse, she was like “Hey Chris, Dr. Peeler would like to speak with you.” I became more nervous because I was worried something had gone terribly wrong, I remember that I suddenly stood up in my seat in the middle of my office. Dr. Peeler came on the line and was to the point: “I’d like to close his chest up and need your authorization.” I was like:
There was a long pause before I was like “Ummmm….so what makes you think he’s ready now? I mean, this is the third attempt.” Dr. Peeler gave is own long pause, “Well…….the swelling has gone down. It’s as good a time as any.” I sighed loudly and gave him the ok. I figured that if anyone knew what he was doing, it was Dr. Peeler, but I just had my doubts due to the past 2 attempts. Then I waited….and waited. I definitely couldn’t concentrate on my work, so I decided to have lunch in the conference room with some co-workers in the hopes they’d keep my mind off it for a bit. Yeah right, all I did was push around my food with my fork and my co-workers knew what I was waiting for. Finally the phone rang: 1-3907239071241242114. I jumped right up and ran into the closest empty office. Before answering the phone I was like OHGODOHGODOHGOD.
It was Dr. Peeler. “Mr. Perez, we successfully closed the chest.” I was blank. Say what? The first thing out of my mouth was “Are you sure? Like…are you SURE?” As if Dr. Peeler is not some world-renowned pediatric heart surgeon but some dude off craigslist or something. His answer was something like “Yes, he’s stable and it looks good.” He could’ve easily said “Hey moron, I know what I’m doing, ok?” and I wouldn’t have been offended because I was PUMPED. I thanked him a billion times before he handed over the phone to the nurse. I thanked her too then excitedly called my wife. We were both still a tiny bit skeptical considering the past attempts, but it was hard to keep in the joy. I walked into the conference room, where my co-workers waited anxiously and I said two words: CHEST. CLOSED. And they cheered. And I was like:
I couldn’t wait to get to the hospital that night. The first big step post-surgery was done and he was looking strong. I also realized that it was January 10th, which was Nolan’s one-month birthday:
Yeah that was pretty much me over the course of some weeks. Christmas was over and I was basically in the same routine as always: work, home, hospital, home, repeat. And I was like out of my mind completely. Some days I was exhausted. Some days I was irritable. Some days I was none of the above, I just kinda stared off into space. I found myself getting super forgetful: like I’d step out of my office, go 20 feet down the hall, then completely forget what the heck I was just about to do. Parts of my work day were routine too: call CVICU, ask for Nolan’s nurse, get an update. It was my way of keeping connected so I didn’t feel so off the deep end. I really wished I could spend more time with Nolan…but I had to work, there was no doubt about that.
Meanwhile, the heart team decided a different tactic with Nolan’s chest: as the swelling went down, they would basically push both sides of his chest together little by little every few days and then put this bandage over it to hold it in place. Inch by inch it went and his numbers kept holding steady, so that was awesome. All the while, Nolan kept improving enough to lose one med here and another med there, so that instead of like 20 pumps he was down to 10 or something. Hooray for improvement. Each night was the same, though. I’d go in and check in with his nurse, then wash my hands, then pull up close to Nolan and talk quietly to him. I’d pray for him, and most importantly I would always tell him he was my hero. I couldn’t imagine if it was me in that bed: I know for a fact I wouldn’t be strong enough. Some nights I would read or surf the web on my tablet; some nights we would jam out to Needtobreathe. Whatever I did, though, I always did it close to Nolan.
I tried to maintain a festive atmosphere in Nolan’s room, if all else for my own joy. We put up signs and pictures of his brothers, and I even went on the interwebs to look up how to make paper snowflakes, and I spent a couple nights doing that. The first one, I gotta tell you, came out kinda ghetto looking. And I mean GHETTO. It was squat and weird, but once I got the hang of it, those snowflakes looked dope. Nolan’s nurse (can’t remember which one at the time) tried to laugh at my ghetto snowflake…I called it unique. I even wrote out Deuteronomy 31:6 on a card and attached it to the side of his bed. I’d like to think that it was to encourage him to be strong and courageous, but you KNOW it was really more for me. I constantly needed that reminder.
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.