In all of my wildest worries about pregnancy and childbirth, prematurity never occurred to me. But, after my daughter was born three months early and just a pound and a half, I was faced with a micropreemie, a months long NICU stay, thousands of miles of driving, hundreds of hours of pumping, and the scariest nights of my life. In the end, we all survived the NICU, and the nearly two years that have passed. Love for Lily, Sahra, and all who support this wonderful organization helped me that survival.
“I just couldn’t imagine facing any other moms”
There were many moments, both in the NICU, and after we were discharged where this organization lifted me up and enabled me, but one in particular always speaks to my heart. It was Tuesday, the day of the regular Love for Lily meetings in the NICU, and I didn’t go. I didn’t go because it had been a horrific weekend, and I just couldn’t imagine facing any other moms. My daughter had coded after very poor recovery from a fairly simple eye surgery. My husband and I had watched her steadily decline until we stood in the doorway to her room watching helplessly as the team performed CPR and worked tirelessly to intubate her. Come Tuesday morning, she was extubated again, and things were looking up slightly, but there was still the potential for months more in the NICU, though we were already weeks past her due date, and a lot of questions waiting to be answered. I sat by her bedside, overwhelmed with joy at her extubation, fear of what might come, and sheer exhaustion from the previous days’ events. Sahra had missed me at group, and came looking for me in our new isolation room. She brought donuts. A little sugar always helps. I told her the ridiculous events of the weekend, and she shared Lily’s story with me. We cried.
“…to wait weeks to hold your child”
The simple act of having someone at your side, who truly knows what it is like to live within those walls, to wait weeks to hold your child, to live in constant fear of that call from the hospital, to have someone who has been there, be there for you, and hold your hand as you walk this dark and winding path. To have that person is a true gift. A gift for which I will be eternally grateful.
My little girl came home two weeks later. We left the NICU and have muddled on through regular life as well as any new parents. And though there are still myriad appointments and therapies, quarantine during cold and flu season, and the near-constant worry of the effects of extreme prematurity coming to light, the community that Sahra has built through Love for Lily brings a strength, and knowledge, and purpose that makes it all just a little bit easier.
– Effie’s Mama