Having experienced a pregnancy loss, we came into Quinn’s pregnancy with a lot of anxiety but determined to soak up every moment in getting to know her. Loss can do that. It forces you into the details, causing you to flip back and forth between hyper fixating on what you could have done to cause it and trying to ingrain every special moment to memory. For Quinn, we tried to lean into the latter.

When we found out we were pregnant again, a fear rose up in us anticipating the first ultrasound since that is when we learned of our first loss. If we could hear her heartbeat, then our anxiety would abate. The sound came and our fear left. This was real; we were having a baby.

In order for us to fully celebrate and know our little one, we wanted to know the sex. To make the moment less medical, we decided to go to a private ultrasound that was much more comfortable and less triggering due to our previous ultrasound experiences. At 15 weeks, we found out our baby was a girl. Names have always been important to us, so we were very particular in naming her. Quinn Lucille means “counselor of light.” She was helping us walk out of the darkness of miscarriage and pointing us to the joys in life. What we didn’t know is she had more to teach us.

At our 20-week anatomy scan, everything was progressing as normal. We had no indicator that something was wrong. At the time, I was a high school teacher preparing for the upcoming school year. During a staff meeting, I received a phone call from Ginger, my wife, about an anomaly the doctor saw with Quinn’s heart on the ultrasound. We were to drive into San Francisco to have a more in-depth scan. From that scan, we received a diagnosis: atrioventricular (AV) canal defect. This was another dark moment with Quinn that was teaching us how to look for the light.

After many appointments, we felt as prepared as we could be to parent a child with a significant heart defect. Our goal was to reach 37 weeks (term) in the pregnancy and deliver at a higher acuity hospital that would evaluate when Quinn would need her surgery. The best news was that we lived right near one of the top hospitals in the country for pediatric heart surgery. Yet, more darkness was waiting around the corner. 

At 24 weeks, Ginger was experiencing back pain and woke up that night with signs of labor. We drove into San Francisco to the hospital to confirm we were in labor. Because of Quinn’s heart defect, all of her doctors were trying to prevent her birth. Having been in antepartum for a few days, it came to the point where the doctors couldn’t stop the labor and wanted to deliver her in a very controlled manner. On September 28, 2016, Quinn was born at 2:26 AM at 25 weeks gestation and weighing only 1lb 10oz. We were able to see her for a very short period before she was passed to the neonatology team.

I went to the Neonatal Intensive Care Unit (NICU) to see her shortly after, while Ginger recovered. She was so beautiful and was sleeping just like I do with one hand under her head. During morning rounds, the doctors talked about how well Quinn was doing. She was on minimal settings for her breathing and was able to have some milk through her feeding tube. Ginger was able to meet her for the first time and hold her hand. As little as she was, Quinn was very poised in how she dealt with her team evaluating her and waking her up for scans and vital signs. She gets that from her mom.

Since she was so stable, we felt comfortable for both Ginger and I to go eat lunch. When we returned to Quinn, her entire team was surrounding her isolette and alarms were going off. My instinct was to run in, but the team pulled me outside. They eventually stabilized Quinn on a higher level of breathing support. The neonatologist invited us to another room to discuss what was happening. She told us that Quinn had blood in her breathing tube, which can be a sign of a brain bleed which is common in extremely premature babies. They needed to ultrasound her head to make sure.

Our next dark moment came. The ultrasound showed the highest grade of intraventricular hemorrhage (IVH) on both sides of Quinn’s brain. The best we could hope for was a life of severe disability, but the most likely scenario would be that she dies in the night. Parents shouldn’t have to decide about how their child dies, but here we were. We decided that the best death we could provide was one in the arms of those who love her. Our hearts broke at the only time holding our daughter was while she was dying. But, we chose early on with Quinn to always celebrate her, so we did. We filled our time by talking to her, trying to fit a lifetime of “I love you” into this moment, and playing the songs we played her while she was in Ginger’s belly.

Quinn’s doctor asked about having photographs taken during this time by Now I Lay Me Down to Sleep. Initially, we didn’t want to share this moment with anybody. However, we also knew we wanted to remember our only time together with Quinn. We didn’t know what to expect. Nano Visser, NILMDTS photographer, came to our room and navigated this very difficult moment with such empathy. She would quietly move around the room and encourage us to continue bonding with our daughter. Nano normalized the experience with wanting to know Quinn’s name and calling her by name. She continued to comment on how she looked like each of us and how cute her feet were. As new parents, we didn’t realize how desperate we were to be validated as parents.

We weren’t ready to compassionately extubate Quinn while Nano was with us. Thankfully, our neonatologist offered to bring her camera and a nurse took more photographs. We are so thankful to have these to look back and remember our precious moments with Quinn. Our family wasn’t able to meet Quinn, so it also helps them have a connection to her. Quinn died on September 29, 2016 late in the evening while in my arms.

After Quinn’s death, we had a burial ceremony for her. Celebrating her life with people that loved all of us was really important. Our choices for her ceremony were purposeful. We chose to decorate with cherry blossoms because they are so beautiful, but fleeting like Quinn. Music was a big part of our bonding in pregnancy and during her death. We sang at Quinn’s gravesite to show that death wouldn’t steal our joy of knowing her. Surrounding ourselves with people who loved us kept us going that day.

We took time away in order to process and grieve. Everything was a reminder of no longer having Quinn. Our home had a half finished nursery with all the baby items that she would never use. We had people pack it up while we were gone and ended up moving to another place, our grief apartment. Since Ginger and I both worked with kids, our jobs reminded us of how Quinn’s life was cut short, and we wouldn’t see her at school age. So, I quit my job as a teacher and Ginger started working with adults. My goal was to work with parents in the NICU going through loss. The quickest way was starting an accelerated BSN program to become a nurse.

Since I knew where I wanted to be, I poured all my effort into training on how to best take care of NICU patients. I sat on a bereaved parent panel for a hospital training neonatal nurses on loss. Coincidentally, they were offering training by a NILMDTS photographer on how to take bereavement photographs. I was elated when I saw Nano Visser teaching the class. We reminisced about Quinn and she taught me how to enter a sacred space with families without disrupting their bonding time together.

I’ve since become a NICU nurse at the very hospital Quinn was supposed to have her heart surgery. One of my first times taking care of a family going through loss, I called NILMDTS to set up a photographer to come. Who answers? Nano. She wasn’t available, but she lovingly reminded me of the training that I did and how I could take the photographs. I’ll be forever grateful for that encouragement. Almost 7.5 years after NILMDTS provided us with everlasting memories of Quinn, I get to partake in the work of entering sacred spaces with families and helping them build the only memories they will have with their child, sometimes even with Nano.

Ginger and I continue to incorporate Quinn into our family. We’ve since learned a lot about the complications of our pregnancies. Through a lot of medical intervention and prayer, we’ve welcomed home Quinn’s brother, Amos. This year, through adoption, we’ve welcomed a sister, Hollis.

Grief has been described to us as a backpack full of bricks. Initially, it feels overwhelming and too heavy to carry. It doesn’t go away, but eventually you get stronger and used to its presence. Quinn continues to teach us a lot, but she continues to point us to the light and through us, brings light to others.

Now I Lay Me Down to Sleep, a dedicated 501(c)(3) non-profit, offers families experiencing pregnancy and infant loss with complimentary remembrance portraits, capturing precious moments with their babies. Your generous donation can help us extend this heartfelt service to more families in need. Please consider supporting us here.