I haven’t posted in almost two weeks but I’ve had this post sitting in my draft bucket for longer than that. I don’t know why I haven’t put it up. I’ve edited it so many times that I’m actually just reading it over and over without making any changes, but still I’m hesitant. I’m not ready to tell the story of my c-section and Ava’s brief life before everyone reading has some understanding of what we were thinking and feeling about the possibility of her death. This is that post. This is where I discuss our process for deciding on resuscitation measures for our daughter. It feels strange to tell this part of our story because this is the part so few people share. I think this is the part that makes people the most uncomfortable, even more so than the part where she actually dies. But this is what happened, and it is real. This is a part of my grief and a part of my unending cycle of “what-ifs” and “should haves.” It is a part of the lifetime of worry I will endure as I wonder if I did what was best for my child. I’ve decided to finally share this part of our story so that I can move on from the guilt and even the shame that comes with declaring that I chose death over suffering for my child.

I was ashamed about a lot of my thoughts and feelings I had while I was in the hospital, but I never had to hide them from Travis. We talked about everything, no matter how horrible it felt, and I’m thankful that we are able to communicate so well with one another. Yes, we argue or get upset about stupid stuff now and then but when it comes down to it our marriage is full of understanding and grace. I have never felt judged by him and we have never felt a need to hold back or protect one another from our demons. The transparency in our relationship made having the difficult conversations just a little bit easier, and for that I am grateful because we had many.

Multiple times a day a specialist of some sort would come to my room to check in and to answer questions or update us on any changes. These days and meetings all started to blur together. It was a lot of questions without answers other than we would just have to wait and see. Our first night in the hospital we were given the impression that we may not have a lot of control regarding interventions for the baby once she was born. This was something that really scared us. We didn’t want our baby to be needlessly poked and prodded. We certainly didn’t want our baby to die but it was more important to us that she not suffer. The irrational, anxious part of me didn’t want to think about or mention death. Long ago I convinced myself that thinking about bad things would somehow will them to happen, but logic took over and we had the difficult and necessary conversations.

Ava had continued to look fine on the monitor until the night before she was born, and everyone was very optimistic that she would survive if her lungs had developed enough, but we wanted to talk about every possible outcome. We wanted to be prepared. We both had pretty good ideas about what kind of interventions we would and would not want for ourselves but I had no idea how to approach this with our baby. The easiest place for me to start was to talk to the neonatologist.

I can’t remember if it was day one or two or three but at some point, before she was born, we discussed resuscitation and end-of-life with the neonatologists. This was not something that they brought up. It seemed like death was a scenario nobody wanted to mention to us ahead of time, but it was something we wanted to discuss. As I said before we are both health professionals and we didn’t want anything sugar coated. We wanted to have factual and truthful conversations that would allow us to do what was best for our child.

My first question was, “what does a ‘normal’ resuscitation look like for an extremely premature baby?” The neonatologist explained, as he had before, that the biggest challenge to a baby born this early was lung development. There are some babies that come out screaming but there are many that require breathing assistance. This could be in the form of a simple oxygen mask or as invasive as intubation, where they would put a tube down the baby’s throat and into the lungs to breathe for them. He explained that intubation was not uncommon and would not be seen as a ‘heroic’ or unusual measure. “What about chest compressions?” we asked. “Is it ‘normal’ to give a neonate CPR?” The answer was no. He explained that it is very rare for a baby to require chest compressions and a baby requiring CPR is unlikely to survive in the long run. Travis and I are both certified in Advanced Cardiac Life Support so we then inquired about medications that are commonly used during resuscitation. The answer again was no, this is not normal. It is very rare for a baby to require medications and there is not much evidence that it helps. If medication was indicated during our baby’s resuscitation it would be unlikely to make a difference, and the chances of long-term survival would be very low. To sum it up, we expected that the baby would need oxygen and most likely intubation due to immature lungs. If the baby required more support than that it was unlikely she would survive. They would do everything possible to save our child but we were told that ultimately we would have the final say in her care. We didn’t need to make any decisions until the baby was born, but we both already knew what our decision would be.

We knew we would decide not to resuscitate her beyond breathing assistance, meaning we would decide not to allow chest compressions, but it was a decision I didn’t want to make. The dream of a full-term, healthy newborn had died when we arrived at the hospital. My biggest fear now was that she was going to survive for a short time, but long enough to cause her pain, and to tear my family apart with grief. I didn’t want to push her to keep fighting when it would mean she had to suffer, but I also didn’t want to make the choice to end her fight for her. I was a coward and I didn’t want to make a choice so a part of me wished the choice would be made for us. A part of me wished the baby had already died inside of me. And this is what I meant when I said, “I’m not sure what I’m hoping for.”

I understand if you’re judging me, I judge myself too. It feels horrible to say I didn’t want every possible life-saving measure performed on my child, and it feels even worse to admit that at times I welcomed death. I am her mother and it seems like the obvious choice would be to never stop trying to save her. When it came down to it though, the thought of torturing our child in order to prolong her life for minutes or hours or even days was something we could not bear.

Some may have seen our discussions before her birth as pessimistic or perhaps inappropriate. I see them as lifesaving for me and my husband, and for our marriage. I am grateful we had a chance to prepare ourselves and form a plan before she was born so that while I was still splayed open on an operating table Travis had the confidence to make important decisions on the other side of the room. I could not see what was going on and even if I could I was not in a state of mind to be able to make decisions for myself or my family, but Travis was. He did not have to guess about what I would have said or wanted, he did not have to worry that I would be angry with him or resent him for the decisions he made because he wasn’t alone in those decisions; we made them together.

I wanted so much in life for Ava. I wanted to watch her grow into the beautiful person I know she was. I wanted to take her on amazing adventures and watch her eyes light up with excitement when we taught her something new. I wanted to see her fall in love and start a life of her own. I wanted to dance at her wedding. Most importantly though I wanted her life, no matter how brief, to be filled with love, and free from pain and fear. I hope that is what we gave her. My daughter’s death was not in a frenzied operating room full of stress and decision making. She did not die after having painful and futile procedures. She did not die naked on a table with strangers’ hands on her. She died quietly, wrapped in a warm blanket, held by her family. I couldn’t give her the life we had dreamed about so we were forced to give her the next best thing. We gave our child a peaceful death in our arms, and I hope she felt our love.