The neonatologist focused on code status while I focused on getting to know Eloise. Sure, I had known her for nine months, seen her black and white ultrasound pictures, shared my body with her and felt each kick, rested one hand on my heart and one hand on my pregnant belly during the prenatal yoga class feeling myself relax and come to peace with the reality of her diagnosis, but I hadn’t met her yet. I asked the doctor my walking-talking-seeing-hearing questions because, at the time, I thought those were basic human achievements. The kind of achievements on the NICU screening test or milestone checks at the pediatrician’s office. The doctors answered me with certainty for the first time since finding out Eloise’s diagnosis, so I asked every question I had spent the second half of my pregnancy wondering about – whether my questions made sense or not.
I think it’s unfair that the neonatologist expected us to make a decision, a literal life or death decision, at only two days old. I felt the doctors answered my questions with a false sense of certainty, as there was still so much to know. One significant missing piece was the cause of Eloise’s holoprosencephaly. When we received her diagnosis, the doctor shared that the cause would largely determine the severity. The finish line of birthing Eloise involved collecting cord blood in purple and forest green topped tubes. It’s funny the small details I can’t seem to forget, like the color of tops of tubes. We had not yet received the genetic testing results from the blood in the colorfully topped tubes that would point to the cause, nor did we have complete imaging of Eloise’s brain. She had a brain ultrasound, but the MRI results were still pending. We were faced with an impossible decision, and we did not feel ready to make a decision of this magnitude with limited information and while, more importantly, we were still getting to know our daughter.
Contrary to the neonatologist’s opinion, I understood the implications for Eloise on her second day of life.
I felt grateful my daughter was born alive. Period. She wasn’t born healthy. She was born alive. And I was happy. I exhaled an audible sigh of joy and relief when I heard Eloise cry for the first time — after 19 weeks of wondering if she would survive. I knew the love I had for my daughter. I knew that her disabilities didn’t affect my love for her.
I express my gratitude while also recognizing the fragility of life. Eloise coded nine hours after birth, and I understood that we could lose her at any moment. I live with the traumatic memory of hearing my daughter’s code blue over the hospital intercom while I stood outside of my mom and baby room impatiently staring down the hallway. The mom and baby unit and NICU are on opposite sides of the hospital. I couldn’t walk the long distance to the NICU yet, and I had been waiting on transport for over an hour when Eloise coded. To this day, I panic a little every time I hear a code blue.
When Eloise continued to have apneic episodes and we had more test results and images of her brain, we changed her code status to DNR. As soon as we made our decision with the doctor and nurse in the room, she had an apneic episode. I think everyone in the room held their breath as our eyes shifted back and forth between Eloise and the oxygen saturation number on the monitor. We immediately faced the reality of our decision and understood the implication that she would not be resuscitated. Our decision was made out of love for Eloise and respect for her quality of life. Zach and I are committed to following Eloise’s lead, and her health determined this was the correct decision for us to make at the time.
Toward the end of our NICU stay, once word got around that we were bringing Eloise home on hospice, the neonatologist came by our room to wish us well. She told me something about snuggling Eloise and wearing her while vacuuming, as this is what she did with her babies. I smiled and nodded while thinking, “How the heck am I supposed to wear Eloise with her NG tube connected to the feeding pump, which is connected to a big IV pole and wheel that IV pole around while not going too far so that the NG tube doesn’t come out ALL WHILE VACUUMING?” You tell me who didn’t understand the implications.
Eloise’s life has shown us what it means to be human. We met with palliative care for the first time while I was pregnant, and the doctor asked us to describe our goals for Eloise. Zach and I tearfully answered, “We want Eloise to feel loved.” That’s it. We had let go of whatever preconceived ideas we had of parenthood, and we discovered that at the core of Eloise’s life, we wanted her to know she was loved.
And I think there’s a little extra beauty because of her “very abnormal brain.” She’s protected from some of the ugliness of being human — like thoughts of judgment, comparison, or negativity. She will never tell a lie, and I don’t believe she’s capable of hate. When I look into her eyes, I am sometimes overwhelmed by her beauty and innocence.
Loving Eloise has been both beautiful and heartbreaking. It’s the easiest and hardest thing I’ve ever done. It gives me purpose and makes me question my purpose. But isn’t this the beauty of being human? To experience two opposing emotions that stretch your heart wider than you thought possible? I wholeheartedly believe this little girl who received an “incompatible with life” diagnosis beautifully showcases life.
To the youthful grandmas and others like them (because aren’t we all a little like the youthful grandmas?),
What if it’s not reading before kindergarten? Or walking or talking? Or seeing or hearing?
What if life is to simply just be who you are? A human. A human who is loved. A human who loves. Being loved and loving others allows us to know the depths of joy. And the depths of grief.
To love is to stretch your heart so wide that it must overflow with uncontrollable belly laughs or on-your-knees crying or dancing in the kitchen or staying in bed or marveling at the beauty of a sunrise or driving with the windows down or anxious thoughts keeping you up all night or waking up early with excitement. Being human is beautiful.
