My Little Heart Warrior

“I have to admit your son to Loma Linda Hospital for an open-heart surgery, immediately.” Those words changed our lives’ forever. My wife Izumi and I were expecting to hear good news during our follow-up cardiology appointment. Instead, when Dr. K (pediatric cardiologist) reviewed the results of our son’s echo cardiogram with us, our souls were rocked with the heaviest fists you can imagine. The day was Monday April 24th, Zack had an 8 am cardiology appointment with Dr. K. We had been warned to be ready for a 2-3 hour long appointment, but little did we know the kind of week, really months, we were about to have.

Here’s a little backstory first. When ZKR was born the NICU staff had found that he had a Ventricular Septal Defect (VSD), in layman’s terms a hole in the heart, but we were told that the VSD was medium to a small size and he could grow out of it in a matter of months. You can read all about ZKR’s Rough Landing on my first Life of Dad blog at (https://www.lifeofdad.com/a-newborns-rough-landing/).

Fast forward to Monday 4/24/17, a couple of months later, Zack was three days away from being four months old when we got news that would change our family’s life forever. Zack had an extremely rare and life-threatening Congenital Heart Defect called Total Anomalous Pulmonary Venous Connection/Return (TAPVC/R). The Center for Disease Control uses the statistic that 1 in 10,000 births have have TAPVC (https://www.cdc.gov/ncbddd/heartdefects/tapvr.html). My wife and I began to understand the severity of the situation when we overheard Dr. K asking his staff to cancel the rest of their appointments for the morning. Simultaneously, he called in his colleague Dr. L to assist with a follow up echo cardiogram and confirm his suspicions of a TAPVC. Dr. K notified Loma Linda Hospital’s 5800 wing (Pediatric Cardiac Intensive Care Unit) and had them prepare a bed for ZKR. In less than an hour we were in the unit speaking with Dr. R (surgeon) discussing the impending open-heart surgery that Zack was preparing for. Please understand that this whole situation developed in a matter of 5 hours. Which in retrospect, seems like a lot of time but when we were in the middle of it, the hours felt like minutes because there were so many situational unknowns. The most pressing concern running through my head was “is he going to be okay?”.

If I was being completely honest, the moment felt unreal. In less than 48 hours Zack’s symptom’s had progressively got worse. After looking considering the whole situation, the surgeon and cardiologist decided that the surgery had to happen that evening. Up until Sunday, 4/23/17, Zack was a normal little boy that just living and doing his thing with his momma and me, but that Sunday things started to change. The first sign that we shared with our doctors was vomiting. Zack used to burp and throw-up occasionally after drinking too much milk, but on 4/23 and 4/24 Zack literally vomited the contents of his stomach in their entirety. The second concern was that Zack had stopped gaining weight even after his pediatrician asked us to add extra calories to his diet. The doctors summed up the symptoms in three words “Failure To Thrive”. From a dad’s perspective, hearing the words “Failure To Thrive” coming from your doctor’s mouth was like a blow to the gut. Again, I just stood there with my wife asking the doctors “what does this mean for Zack?”. The general response that we got was that something was causing our son’s stomach to not digest food properly, and the cause has something to do with his heart and the way blood flows through his body. They explained to us that for the stomach to digest food blood has to be pumping and circulating, but the TAPVC/R was having a negative effect on Zack’s ability to digest food. What this meant for Zack was that an open-heart surgery was not an option, but necessary.

I remember the moment Dr. R came into the room and he told us that he would be able to perform the surgery that evening. He had shuffled around his schedule to prioritize Zack’s surgery. The procedure would be anywhere between 5-7 hours, as he finished explaining the procedure to us something unique and profoundly emotional occurred. Dr. R, grabbed my hand, I grabbed my wife’s hand, and he told his team that they were going to pray for Zacharias. As parents, when Dr. R prayed for our boy, my wife and I had an untimely sense of relief and calmness that came over us. Now i’m not here to get religious on anyone. All I can say is that, my wife and I were so grateful to have a doctor who we felt really cared about our son. Once the prayer ended, we knew it was “go-time”. Around 5:00 pm we rolled Zack into the lobby of the surgery floor to the point where we couldn’t go any further and kissed him goodbye. Throughout this day there were two points at which I was terrified that I wouldn’t see my son again, and this was one of them. Imagine for a minute seeing your 25 inch, 11 pound child in a full sized hospital bed being taken away for a surgery that would remove his heart from his body for some moments. Now, understand that there was nothing you could physically do to make the situation better, except for waiting it out. With that in mind, we kissed him goodbye and sat in the waiting room.

During the surgery my parents, an uncle and aunt were able to spend the time with us. We waited, and passed the time on our phones and reminisced of the time when I had double kidney surgery as a teenager. Believe it or not, we joked a lot during this time. During the middle of the surgery my boss had called and asked me if there was anything that I needed. You need to know my boss is literally the kindest, coolest, and most caring supervisor I have ever had. When she asked me for anything, I said “It’s been a long day, and I could really use a lemon meringue pie right about now”. About an hour later, she got to the hospital with a lemon meringue pie in hand. I remember being so shocked that she found a lemon meringue pie at like 8:30 at night, but she did. We chatted for a couple of minutes, but I got the call to go to the consultation room.

The consultation room was small, 4′ by 6′ and it had dark overhead spotlighting. The walls had word art with words like “hope” and “love”, but to my right there was a painting. This painting had people from diverse backgrounds all around an image of Jesus. In the center Jesus was cradling a child looking pensive, not smiling, but as pensive as I’ve ever seen him. Remember I was telling you about the two times I was truly terrified during this experience, well this was the second. I was alone in the consultation room just waiting. My wife had been on the floor for about forty minutes in the unit’s pumping room when I got the call to head upstairs. It was just me and this painting of Jesus just looking at me. I remember thinking, “Fuck. He died.” I started sweating, and had a minor panic attack. I remember talking to myself and saying “please be alive, please be okay”… and then someone knocks on the door. I’m hoping it is the doc, but it’s my wife instead. First thing she says is “why are you so sweaty?”. I told her how worried I was, and she says “you mean they haven’t come by yet? I already saw Zack and the surgeon, the surgery went great.” In that moment the weight that had bearing down on me in the last 30 minutes (felt like 2 hours) was lifted. A couple moments later Dr. R came in and told us that the surgery went well. He said we’d follow up in the morning.

I’m sharing this experience because I want other dad’s and families to know that it’s going be okay. If I’m being honest, my wife, Zack and I weren’t ready when we got this news almost two months ago. I remember the day, and the line of events like the back of my hand. How do you get ready for your baby to have an open-heart surgery or any other major surgery for that matter? You can’t be ready for that. What you can do is be in the moment with people that you love, and surround yourself with people that love you and your child. When the shit hit’s the fan, cut any relationships that aren’t helping the moment, and continue to surround yourself with people who are going to uplift you. For me, that was my wife, our family, and my work family. My wife and I used our sense of humor to get through the greatest challenge we had faced yet. I don’t know how I could have done it without her. I don’t know how Zack could of have done it without her. I love you Izumi. Also, In the middle of crisis, positivity and laughter go a long way. Through this challenge all we could do was take the situation moment by moment, and do our best to be positive. This is what worked for me, I hope my story can help others going through similar situations. Life of Dad Users, if you have any questions please feel free to get in contact with me.

Pretty much the entire month of May was a constant check-up with either the pediatrician, the cardiologist, or the surgeon. Zack is doing great now, and I mean really, really great. Zack is our brave Little Heart Warrior.