Twelve years ago, I woke up early to go to the hospital to have Mighty Z. Like all expectant mothers, I was so excited to meet this sweet angel that I carried inside me for 9 months. The bags were all packed, and Lala (who was two years old at the time) was safely entrusted to my mom and dad. I remember the excitement and anticipation my husband and I shared as we backed out of our driveway, never knowing how much our world would change forever. Labor was typical and uneventful, in fact, when Mighty Z was born, they gave her straight to me. The nurses declared her almost perfect by giving her an abgar score of 9.5.
Everyone says that hindsight is 20/20 and they are right. Even right after birth, Mighty Z wanted to fall asleep and would turn gray. I can still hear the nurses saying over and over, “Keep patting her to keep her awake, she needs to cry.” It was less than 3 hours after delivery that Mighty Z made her debut into the Neonatal Intensive Care Unit (NICU).
If you have ever graced a NICU’s threshold, then you know how eerily quiet and dark it is. All you hear is the swooshing of ventilators, the beeping of machines and the gurgle of chest tubes. This was all new and scary to me…I had never seen a person, let alone a baby, intubated (the placement of a flexible plastic tube into the trachea (windpipe) to maintain an open airway). All of a sudden, here was my baby, lying in this foreign place, with a tube going in her mouth and down her throat. The devastation, bewilderment, lack of control, and horror was immense.
That night as I lay in my hospital room on the labor and delivery floor while my newborn baby was in NICU, the nurses came and knocked on my door. “Mrs., your baby needs to be fed” the nurse said as she opened my door. With confusion and excitement, I popped right up and overheard another nurse say “You got the wrong room, this one’s baby is dying.” What?! My baby? The tears flowed as my mother (who stayed the night with me) held me as sat up in my hospital bed and wept tears from my soul. The tears of pain that one never knows they could ever feel and the ache of the heart was beyond description. My mother sat on the bed with me,gently rocking me until the there were no more tears that would flow,only the dry retching sobs that racked my body. No words were spoken by me or my mother that night. What does one say to another about your baby dying? Did my mother cry? I don’t know, I am sure she did, but I was so caught up in my own pain and grief that I couldn’t spare a thought to what was going on around me. I remember the dark cold of a hospital bed and the thoughts of having to bury my baby.
The next day the doctors told me that Mighty Z was fine and that the nurses had made a mistake. They told me Mighty Z was healthy. But over the next7-14 days, this would just become a bad memory. After two weeks, the doctors told me Mighty Z was winning “stump the doctor.” A game no parent wants to play. They had no idea why Mighty Z wouldn’t breathe. The Director of the unit said that he thought it was something called CCHS (Congenital Central Hypoventilation Syndrome), but I was more likely to win the lotto then to have a child with this disease. Only two or three cases of CCHS are diagnosed each year.
After three long years, it was finally confirmed that Mighty Z did have CCHS. By then, I had come to accept (as much as you can) having a baby with a rare disease who is permanently trached and placed on life support machines every night to keep her alive
I have learned so much since Mighty Z was born. Some things I have learned from Mighty Z. Other things I have learned from my husband, from Lala and from the many, many people who have touched my life over the past twelve years
Lala has taught me to look at things from a different perspective, or with a different attitude. Once when she was little, about 4 or 5, Lala said “I am so glad Mighty Z was born with this disease.” I was speechless and my immediate response was “What?!! Why?!” Lala took my hand and said that if Mighty Z hadn’t been born with CCHS, she wouldn’t be the Mighty Z we have and Lala was glad to have met this Mighty Z.
More recently, Lala has taught me how differently we view this disease. In talking with one of Lala’s friends who was spending the night, Lala was trying to explain why Mighty Z needed to be on a life support machine. Clearly the friend wasn’t getting it, so Lala simply said that “Mighty Z was genetically enhanced.” And you know what? Mighty Z is…
By the way, we always buy lotto tickets, but have never won. Then again, maybe we have.
Miracles do happen
Zoe January 22, 2001
Zoe January 22,201301