My daughter Lily was born still.
That’s what would have been my statement had we waited any longer. She was born blue and was resuscitated; because of her beginning without oxygen she suffered brain stem damage, she was frozen for 3 days to help heal her brain damage, the first time I held my baby girl she was 4 days old. But she was alive so I was grateful.
Weeks passed with so many tests, all with a negative conclusion and after having a feeding tube surgically placed into her gastro intestine we were able to take her home. What gets me is that even though they did 3 MRI’s and multiple other scans, they missed what would eventually kill her. That was her trachea. They were so close too, they found the holes in her heart, they found the valve that pumped the wrong way, all of these would need surgeries to be fixed but she needed to be bigger and stronger to endure them, had they looked an inch higher they would have seen her abnormal trachea.
The night Lily stopped breathing and I performed CPR on her plays out as a nightmare in my memory, for the longest time I wanted to move because every time I looked at that spot on the floor where she lay, my heart stopped, but then we replaced the carpets with hardwood and I was sad that that was now gone too, so I knew I couldn’t leave the one place she had been. When they found out about Lilys trachea, the doctor phoned and told me she would need a tracheotomy to live- that’s a hole in her throat to breathe, he said she would never have a good life, would never speak, would never taste anything and would have a shortened lifespan because of it. That surgery was on top of the other 4 heart surgeries she needed. This one would now be 1rst though. He said I will do it if you tell me to but even on a healthy baby the chance of survival is slim. What the fuck do you say to that!? We had company downstairs that day, I didn’t go back down.
We went back to the hospital 1rst thing the next day probably our 100th drive then. I suffered from ptsd every time I got into the car after she died. 4 days later we signed a do not resuscitate order, they took out her breathing tube and we held her until she died 30 minutes later at 4:55 pm on February 18 2012. I am forever haunted by this. What if we did the surgeries? Most likely she wouldn’t have died in our arms but on a table. What if we accepted the transfer to Canuck Place? We probably would have had a nicer end of her life together as a family. What if she was born still? None of these traumatizing experiences would have happened, we would have still grieved but differently I imagine. The hardest, what if she continued to breathe, what if she was that 5% that survived.
So as life goes on, as we try to understand the why’s of it all, we want to grow, we hope to learn, we try to accept, we continue to live. We chose to remember.