I always dreamed of becoming a mother, but growing up with cystic fibrosis, I wasn't sure that dream would ever become a reality.
Today, because of advances in CF care and the availability of CFTR modulators, I'm living a life that once felt impossible. I became pregnant with twins — a milestone I never took for granted. Throughout my pregnancy, I felt incredibly grateful for the progress that has been made for people with CF.
Then, my babies arrived earlier than expected.
Instead of bringing them home, my husband and I found ourselves spending our days in the NICU. My postpartum journey didn't look anything like I had imagined. Rather than learning how to care for newborns in the comfort of our home, I recovered from childbirth while navigating monitors, feeding schedules, pumping sessions, and the emotional roller coaster that comes with having two premature babies in intensive care.
The postpartum period is challenging for every new parent, but adding cystic fibrosis to the equation creates another layer that isn't often talked about.
One of the biggest misconceptions I encounter is that because I'm taking a CFTR modulator, my cystic fibrosis no longer affects my life. The reality is that while modulators have transformed my health and given me opportunities I never thought possible, they haven't erased my disease. My body is still healing from pregnancy and delivery while managing a chronic illness that requires daily attention. Each day is a balancing act.
I want to spend every possible minute with my twins in the NICU. I want to be there for every feeding, every milestone, every cuddle, and every ounce of weight gained. But I also know that my own health can't be put on hold. My airway clearance treatments still need to happen. My medications still matter. Nutrition, hydration, and rest aren't luxuries — they're essential to keeping me healthy enough to care for my children.
That balance hasn't been easy.
There have been days when I've felt guilty for leaving the NICU to go home and complete my treatments. Days when exhaustion made me question whether I was doing enough. Days when I wished my body didn't need so much care while my heart wanted to be somewhere else. I've learned that caring for myself isn't taking time away from my babies — it's investing in the mother I want to be for them.
Cystic fibrosis has taught me resilience my entire life. The NICU has taught me patience. Together, they've reminded me that strength isn't about doing everything on your own. It's about accepting help, adapting when life doesn't go according to plan, and continuing to move forward, one day at a time.
As more people with CF become parents, I hope we continue to talk about what happens after pregnancy. Thanks to groundbreaking therapies, more of us are reaching milestones that once seemed out of reach. But motherhood doesn't erase CF, and CF doesn't disappear after delivery.
The postpartum journey deserves more attention, research, and support, especially for parents balancing their own health while caring for medically complex or premature babies.
To anyone else with CF who finds themselves navigating postpartum recovery, a NICU stay, or simply the overwhelming transition into parenthood, I hope you know this: you are not alone.
It's OK to grieve the experience you thought you would have. It's OK to ask for help. It's OK to celebrate the small victories — whether that's a good pulmonary function test, a successful treatment, your baby's first bottle, or finally bringing your little one home.
My story is one of gratitude — for the researchers, clinicians, and advocates who made modulators possible; for the NICU teams caring for my twins; and for every member of the CF community who continues to share their experiences.
Because every story helps us better understand what living with cystic fibrosis really looks like.
Mine just happens to include two tiny fighters who remind me every day why taking care of my own health is one of the greatest gifts I can give them.
Interested in sharing your story? The CF Community Blog wants to hear from you.
