In November 2020, I unexpectedly found out that I was pregnant. This came as a total shock because my husband I were not trying to have a baby just yet. I surprised him with the news when he returned from work that day. To our sorrow, this was a chemical pregnancy that failed shortly after implantation. However, this sparked the conversation between the two of us about expanding our family. We both decided that we were ready to seriously start trying.
Then, in September of 2021, our efforts finally paid off! We were pregnant for the second time, and once again, immediately loved this baby. We found out we were having a girl and named her Noelle Harper. Our pregnancy progressed without complication until our 20 week anatomy scan. The ultrasound technician could not get a good view of Noelle’s heart. She assured us that everything looked like should, and invited us back for another ultrasound four weeks later.
That appointment came on Valentine’s Day 2022, and was when the doctors discovered the most devastating news: Noelle had a rare and frequently fatal heart abnormality called Ebstein’s Anomaly. The tricuspid valve was deformed, the right atrium was enlarged, and the right ventricle could not effectively pump blood to the rest of her heart. We met the fetal cardiologist who had never seen a case this severe. We had to temporarily relocate to another city so that Noelle could receive neonatal treatment at a larger hospital. Her Ebstein’s Anomaly led to a slew of other diagnoses: lungs that were too small because the heart took up too much space in the chest cavity, a placenta that was too large because it was overcompensating for a lack of blood flow, lesions on the brain due to a brief period of distress, a lack of amniotic fluid because the placenta was too large, poorly functioning kidneys due to the experimental drug treatment that they put me on in order to prolong Noelle’s life in utero.
We had appointments twice a week, and the “good” appointments consisted of seeing Noelle’s condition remain the same. We rarely saw improvement. The medication trial they had me on worked for a while at keeping Noelle stable. Until it suddenly stopped working. Just before Noelle’s 36th week of gestation, she failed her biophysical profile exam. Her movement had slowed down significantly and we decided that if we wanted to meet Noelle alive, that we could not wait any longer.
The next day, we went in for an emergency C-Section. At 10:06am on May 10th, 2022, Noelle was born. She was 4lbs, 3oz, 17 inches and had a head full of fiery red hair. She survived for 62 minutes before passing away in my arms due to heart failure. We did a blessing for her in the hospital room, gave her a bath, gave her a haircut, danced with her and sang to her for as long as we could while we remained in the hospital. Those are memories that will never be forgotten. We spent countless hours in Noelle’s fully decorated nursery that she never got to see. We read her stories that she would never hear and listened to music that she would never get to enjoy reflected on the brief life she had and the future that fate stole away.
After lots of discussion, lots of time, and lots of genetic testing, we decided it was time to give Noelle a sibling. Two weeks before Noelle’s first birthday, we found out we were pregnant again. We have named this baby Lillian “Lily” Piper after Noelle’s birth flower, the Lily of the Valley. As we progress through this pregnancy, it is impossible to avoid the crippling fear that one of our ultrasounds will end in a fatal diagnosis. Or that our time with Lily will be cut short, as it was with Noelle. But we also know that she is different than her sister. She has a different personality, she reacts to different foods, and she causes different pregnancy symptoms. We have decided that the best thing we can do for our babies is to love them for as long as we can. And more importantly, to find beauty in the rainbows forever, not just when they appear in the sky.
Photos taken by Mabel J. Carrillo.
Find out more about Project Finding Your Rainbow.
Pin and help spread the project!