As a heart kid, it’s a near certainty that at some point you’re going to crash. The halls are lined with crash carts in the CICU for that very reason. While there were many times my daughter danced on the edge of that dangerous territory, there was only one time she truly crashed. I happened to be there for it and as scarring as that event was, I’m so glad they let me stay in the room. 

She was two days post op for her second open heart surgery, her chest had been closed the day before and she was still intubated. She had gotten a little fussy and then started crying. She kept crying and her face turned from red towards purplish grey. Her nurse had told a student who was shadowing her to go get the floor doctor. The student never came back. I saw my daughter’s nurse’s expression change to …not panic, but the adrenaline pumping focus that comes when life is threatened. She called out from the room “Help! Need help in here”!

I moved a garbage can out of the footpath and handed a nurse a paper towel to use as a makeshift note pad before stepping out of the way myself. Nurses, doctors, respiratory therapists, and an entire surgical team including the anesthesiologist all came pouring in. Madeleine’s nurse for that day had picked her small body up and was doing CPR, meds were being pushed through lines, timers were being set, pace wires were hooked up to their box, orders were being shouted out. Doctors stared intently at the monitors and at my daughter, spoke amongst themselves but loudly enough for all to hear before issuing an order. Staff that couldn’t be of immediate assistance lined up outside her room ready to jump in if someone got tired or ready to run if more supplies were needed. I don’t recall how long that went on but at some point I realized I was about to faint so I sat down, tears rolling down my face, and I prayed. A few seconds later my daughter came back. Her body regulated and systems balanced out. She was no longer on the edge of death. 

Possibly one of the worst parts was them calling out that someone specific needed to be there. My daughter’s nurse kept calling out that whoever this person was needed to get there right away. One of the nurses who wasn’t helping with my child had come over to check on me so I asked her who this person was that I wasn’t familiar with. We had been in the hospital with my daughter for a few months at this point so it was weird that I didn’t recognize someone by name. She informed me it was a social worker. It immediately clicked in my head, they wanted the social worker to be in the room ASAP in case my daughter died. My baby’s nurse was fighting like crazy for her, certainly not giving up but some part of her had to think my daughter wasn’t going to make it otherwise there wouldn’t have been the urgent need for the social worker. Once she did eventually come, her presence wasn’t comforting. I hadn’t met her before so talking to a stranger in a moment of crisis wasn’t helpful. I know this isn’t the case for everyone, but hearing the medical details is better to calm me than random small talk. I like the information, it gives me a sense of understanding and if I can understand something then it isn’t so scary. 

Even after my kiddo settled out there was still plenty to do. The room had to be cleaned up, the crash cart had to be restocked, they had to properly document what happened, they did a team debrief, her nurse and one of the doctors stayed back to try to secure an arterial line that was nearly popping out. As they tried to fix it, it accidentally came out because it got hooked on the nurse’s glove. They got a new one in but as they worked the nurse began crying. She wasn’t crying because she’s new or had done something wrong or is in any way weak, but because the nurses love the kids they care for. We had been in this unit with this small group of specialized staff long enough. My daughter had been given nicknames, they had decorated her bed, they came to talk to her in between their busy schedules. As a mom it was hard to watch her crash but that nurse had to be hands on trying to save a little life that she loved and then when it was all over another hurdle popped up so of course she cried, but she carried on. We love that nurse too. She didn’t get to eat that shift because she was so busy taking care of our daughter and the next day she came back to be with my daughter again (she didn’t get to eat that day either). Nurses endure a lot, and we never know what other situations they are dealing with so we treat them with kindness.

I am still haunted by that day. When my daughter cries, I’m thrown back into that room watching her turn colors. I get anxiety attacks thinking about it, my heart races, I feel sweaty, nauseous, and dizzy (writing this has been a challenge). I have to pull myself back to reality. She’s doing just fine now. She’s been out of the hospital for a year, her heart is strong. She’s playing, developing, and socializing. She’s had other hospital stays and surgeries since then and she will have more in the future. We might have even worse days than that one ahead of us but we’ve certainly had great and glorious ones since then. Not everyday or every hour is like that as a medical mom. We have really hard, bad days but that doesn’t mean our lives have no joy, peace, or hope. 

My daughter is severely developmentally delayed. She’s nearly two now and doesn’t sit independently but the other day she started making a “b” noise. A constant. It’s the difference between cooing and babbling, a major milestone for her. She kept doing it as we “talked” back and forth taking turns making a “b” noise while I held her. That day I cried again, happy tears this time, it was precious. Life as a parent means both the hard and the beautiful. I’m so glad I get to experience it all and that we were given more time with our daughter that day.