One day during the week in January, my wife texted me to let me know they were going to try extubation again. I was hoping this didn’t turn into the chest-closing saga, so I prayed hard that this would work. And it did! He got the tube out of his throat and was on bi-pap for a little bit and did so well, they just put him on a nasal cannula for a tiny bit of oxygen. Success! Chest closed? Check. Breathing tube out? Check. Next up: get the heck outta the hospital!
But, as usual, that would take a little bit of time. Anyways, it was super difficult to concentrate on work because I couldn’t wait to go see Nolan and hold him. I got there and the nurses were happy and so was I. Even the doctors and nurse practitioners were happy with Nolan’s progress. Life was good. The best part: I didn’t have to sit next to Nolan, I got to sit with Nolan.
Life was really good. This is what I waited weeks for. Seeing him without that tube in his mouth that would make his lips look all twisted sucked, but now I could see his little lips and his little nose and even hear him cry. Oh the cries. Who would’ve thought that I’d be so happy to hear a baby cry! So that’s how it would go: I could hold Nolan and talk baseball, tell him my corny jokes, doze off together…whatever. It was just great we were doing it together.
While we waited for Nolan to be ready to finally breathe on his own, we noticed that he was becoming much more alert when we would visit. He would open his eyes sometimes and look at us and even squeeze our fingers. It was a really nice thing to see, plus respiratory said he was making some really nice progress on his breathing. Here’s Nolan with his big eyes open:
Of course, I have to begin training them early:
Nolan was especially happy to spend time with his mommy:
One thing that was the hardest during Nolan’s recovery was the fact that we couldn’t hold him. There were days where Bekah and I wanted nothing more than to scoop him up and love on him. One day we were telling one of the nurses that we couldn’t wait til he was extubated for good so that we could start holding him, and she said, “Wait, you haven’t held him? No way, we can make that happen.” So she did make it happen, and one day while I was at work Bekah got to spend some time holding her little Nolan:
One day I went to visit Nolan at the CVICU and one of the nursing supervisors was in there. I think it was a Saturday or Sunday because it was during the daytime, so it couldn’t have been a work day. Anyway, we were chatting about Nolan’s progress and pretty much they had been working with respiratory to wean him off the breathing machine in an effort to get his breathing tube out. And she said “I think we’re going to try to extubate him today.” And was like “Really? When?” I wanted to be sure to tell Bekah: she was home with Grant and Nolan. She said, “We’ll do it within the hour.” WOW. That was fast! I texted Bekah about it and then when the time came, I went down the hall to the Quiet Waiting Room.
The Quiet Waiting Room is the secret weapon of the CVICU floor. There’s a regular waiting area with TV and coffee and all that jazz. But the Quiet Room is a big open space with low lighting and it’s completely lined with comfy chairs and recliners. I have taken MANY a nap in that room because you can turn the lights out completely and almost no one ever goes in there. So this day I went down there and told the nurse just to call my phone when they were done. I couldn’t sit down, though, so I pretty much paced the entirety of that room praying really hard that this extubation would go successfully and that he would get so much closer to going home. Finally the call came and I could come see him.
I rushed to his room and saw my little guy in his bed. The tube was out of his throat and there was a different one on his nose called bi-pap just to give him a little help but that mostly he was breathing on his own. Poor Nolan looked really pale and his chest was moving up and down pretty hard. I held his hand and he looked at me and his eyes looked really sad and almost scared. I felt bad for him. I knew extubation was a good thing, though. He was making this little, quiet, raspy cry…which was the first time I heard him make a sound in over a month. While he was intubated, it looked like he would try to cry or cough, but the tube in his throat made it impossible.
Unfortunately, it was short lived. Over the next few hours, Nolan showed that he wasn’t quite ready to be off the breathing tube, so they would have to re-insert it. Somehow, it wasn’t as frustrating to me as the multiple attempts at chest closure, I was just sad that the stupid tube would have to do down Nolan’s throat again and I couldn’t imagine what it felt like. Sigh.
Now that Nolan had a successful chest closure, all we had to do was continue to get him off the meds and then get that breathing tube out. On one hand, it felt like the hard part was over, but in reality there was still a lot left to do. Nolan was doing well, though: he’d open his eyes and look around a little bit and some of the meds were going away. We all kept doing our routine of juggling kids and work to go spend time with Nolan. It was exhausting but necessary: I wasn’t gonna miss a single day with Nolan. Suddenly, though, a weird thing happened to me. I started to lose my grip.
I don’t know why, and it wasn’t tied to one particular event or circumstance. It’s just like I woke up one day and felt like I was completely unraveling. I would fell really bummed out, and even though Nolan was showing slow progress, it didn’t feel so great to me. I felt completely disinterested in just about everything, kind of like I was walking in quicksand or some crazy fog. The Children’s Hospital is attached to the main hospital here, so you have to pass by the main hospital to get to the entrance to Levine Children’s. And day after day I’d see happy parents trying to figure out their car seats so they can bring their newborn babies home. And I wasn’t happy for them, I was jealous. I just wanted Nolan to be home already so we can be home. The worst part was usually I would go and sit with Nolan and always pray for him. This time I found myself sitting next to his little bed and asking God just to help me get through it all. I felt like somehow it was my fault things were progressing so slow, and it was my fault that I couldn’t spend as much time with Nolan or with my other two boys. Then I’d go to work and feel like I couldn’t do anything right. Ugh, what a mess I was.
One day at work I decided to chat with one of our chaplains, whichever one happened to be at the office at the time. This time it was Carl. I explained things to him and he listened and just kind of nodded and said “You know, maybe you should try taking some time and write down something every day that you’re thankful for. That could help put things into perspective.” That’s all. No fiery scripture-quoting, no organ, no laying on of hands. So I did just that: I went to my office and grabbed a scrap of paper and began to write down a few things I was thankful for: my wife, my family, my home, working cars, a good hospital, food, running water, the ability to get out of bed in the morning, the ability to breathe on my own….
And just like that I felt WAY better. Ok so it wasn’t so bad after all, I was just being super-hard on myself due to all the stress we were under. That night, the visit – and future visits – with Nolan went much better. The drive to the hospital didn’t bother me, the parents loading up fresh newborns didn’t bother me, and I kept praying for Nolan and calling him my hero.
The HLHS journey is a very long one with lots of good moments and lots of bumps too. You can’t ever compare an HLHS baby and a healthy baby side-by-side, you always have to put things in perspective. Just remember: if your little one is doing well, and you’re doing well, then all is good. Everything else is a bonus.
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.
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 soon as we found out we were having twins, I decided to save as much PTO time for work as possible so I can stick around when and after the babies were born. This became even more important after Nolan’s HLHS diagnosis. Of course, things don’t always go according to plan, do they? After two attempted chest closures, I realized that Nolan’s recovery was going to take longer than expected and that I was quickly running out of PTO days and I would need PTO time for Nolan’s eventual discharge. Not only that, I’d need to build up MORE PTO time over the next 6 months in preparation for Nolan’s 2nd open-heart surgery. So…the dreadful time had come: I HAD TO GO BACK TO WORK.
I don’t really remember what day it was…I think it might’ve been a Wednesday or Thursday or something…but I didn’t tell anyone, I just showed up. People were surprised and asked me all the expected questions about the boys, and I repeated the same stuff about a thousand times. They even gave me baby gifts, which was REALLY nice. The problem? I wasn’t with any of my boys, especially Nolan. Why? I WAS STUCK AT WORK. And I was pissed. Unfortunately that made me really irritable. I tried really hard not to let that show, so I buried myself in catch-up work. And man, it took me so long to acclimate to being back to work. The hardest part was the new routine: go to work, come home and have a quick dinner, spend a short time with Hudson, Grant, and Bekah, then drive to the hospital to spend a few hours with Nolan, come home, be up at night with Grant, get up go to work, repeat.
Eventually I couldn’t stay cooped up in my office forever, so I tried my best to re-integrate myself into workplace society. That is, until I heard the first person say, “Oh man I’m so tired.” And I almost (ALMOST) went off like, “YOU DON”T KNOW WHAT TIRED IS!!!!! BLAAAAARRRGHHHH!!!!” But I didn’t….I promise, I didn’t.
It was really hard to sympathize for or empathize with people because in my mind, things for me were the worst they could possibly be. If someone was having a hard time with something, it felt so petty to me, and my mind would be like “Pfft…what a wimp…you don’t know what hard is.” And yes, that’s a wrong way to think. But I had to work those things out, big time. No, I didn’t want to be at work, but I had to be at work, so I needed to make the best of it. I remember I would sit in my car in the parking lot and pray “God let me be kind and bearable today and not an angry ogre. Amen.” Over time it got better and I fell back into the work routine. The good thing was that I had the CVICU phone number programmed in my phone and I could always call and immediately speak with Nolan’s nurse for an update (did I mention CVICU nurses are awesome?).
Have any of you fellow heart dads or moms experienced this before? This difficulty with seeing past your situation and treating people nicely at first? I really struggled with it, but it only seemed to happen at work. What got you through?
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.