Everyone in the world is fearful at some point in their life. There are thousands of reasons why someone would be afraid of something. To some people that fear might feel like the end of the world, like nothing could be worse than what they are going through in that single moment. That’s a fear that myself and many others in my position of having a medically complex child have felt. The fear that I’m talking about is called Code Blue.
To give some insight, our son was diagnosed with Congenital Heart Disease when I was 20 weeks pregnant. Knowing your unborn baby is going to have to go through open heart surgery not once but multiple times shortly after birth would be enough dread in itself. However, looking back that was the easy part.
Fast forward through a premature birth by 10 weeks, two separate NEC scares, constantly needing the vent to breathe, brain damage due to consistent desaturation spells, doctors wanting us to withdraw, a flight across the country, and a cold. We thought we had finally made it, he was set to have surgery 4-6 weeks after he recovered from Rhinovirus. The hospital was moving us to the floor unit to wait out our time until the day our son was wheeled into the O.R. to receive his life saving surgery. Only it didn’t work out that way.
One of my greatest fears since starting this journey happened Sept. 30th 2018 at 7:30am. The type of gut-wrenching fear that no parent wants to (or should have to) endure.
While Jarryl and I were sleeping the hospital called. The beginning of the conversation is a blur now. All I remember is a woman telling me that Griffin had coded and they were in the middle of doing CPR. By this time he had been down about 10 minutes and they wanted us to get to the hospital quickly. I remember jumping out of bed and motioning to Jarryl that he needed to get up too, all the while listening to her say the words “we’re going to start him on ECMO”. For those of you that aren’t familiar with it, ECMO is life support, plain and simple.
Neither one of us understood why this was happening, we didn’t have words, we just went into auto-pilot. We got dressed, ran downstairs, and flagged down the shuttle to the hospital. Both of us were being as calm as possible until one of the cardiovascular surgeons ran into the hospital behind us at full speed. This was probably my waking point, not that I didn’t realize how bad the situation was before, but more that I was in a daze because I couldn’t believe it was happening. Seeing the surgeon sprinting through the hospital filled both of us with a dread that we almost couldn’t bare.
We took off behind him, running to the room Griffin was in last, but he wasn’t there. They had already rushed him back to the ICU. Making our way over, we were headed off by the charge nurse. At least I think so, honestly at this point I can’t remember who talked to us first, my memory of that day is foggy. Like my mind doesn’t want to remember. She told us Griffin had received CPR for 30 minutes…30 minutes of his heart not working and the nurses trying to pound the life back into him. No parent alive should have to hear those words, no one. She told us to stay in the waiting area until they were done connecting him to the ECMO machine. So we waited, and we waited, and we waited. During that time I called my mom, and the screams and cries from the other end of the phone just solidified that this was everyone in the family’s worst fear. Griffin was on the edge of life or death and Jarryl and I couldn’t do anything but hold onto each other.
Griffin survived that day. And he still continues to survive and fight for his life. Since then he has had his open heart surgery and he is still recovering. But I can’t say that for all of the babies and children out there. Not all of them are so lucky and some parents start to join other Facebook groups. Not groups for the condition their little heart warrior has, but groups for grieving parents. Parents that had children that lost their battle and gained their wings. Those are the groups that no one wants to become a part of but know that it’s a stronger possibility with how fragile our little ones are.
So we fight with every tooth and nail we have to make sure it doesn’t happen. We fly across the country to have the best surgeons, we sleep in hospital rooms day in and day out to make sure our child is being taken care of correctly. We learn about all of the medicines, machines, diagnoses, and treatments. We basically become nurses ourselves without having the degree. And we love them with everything we’ve got. Because at the end of the day we know that love is the best medicine they can get.
“To escape fear, you have to go through it, not around it” – Richie Norton