Life with Cystic Fibrosis means daily medication and treatments to prevent lung damage and other prescriptions to treat existing symptoms. Going into our daughter’s first clinic appointment, I was worried that I would be overwhelmed by all of the information and instructions for care that I received. Less than a week after our daughter was … Continue reading Take It One Step at a Time
I promised to tell you more about our daughter’s experience in the NICU in my last post. I will do my best to relate the whole story to you, but my memory is terrible lately. Taking care of two under 3 takes a lot of brainpower! I remember when the doctor came in to tell … Continue reading Our NICU Journey (Part 1)
After our daughter was born, I was on high alert. Because she has Cystic Fibrosis, there was a high likelihood that she would have a bowel blockage. So, I was looking for any clue that she may have a meconium ileus. I struggled to breastfeed her the whole first night after she was born. I … Continue reading Trust Your Gut
Every mom tries to imagine their baby’s arrival. For 40 weeks, we think about what our baby will look like, what our labor will be like, and when our little one will arrive. The waiting feels like an eternity when you are pregnant. When I was pregnant with my daughter, I felt like this eternity … Continue reading Our Daughter’s Arrival
Remember how I said I need to prepare for everything? Well, that was magnified with our daughter’s diagnosis. After receiving confirmation that she does indeed have Cystic fibrosis, I went on the hunt for all the information I could find. I wanted scientific information, I tried to find moms of children with CF, and I … Continue reading Let the Preparation Begin
When I first heard that our daughter might have Cystic Fibrosis, I was crushed. I knew in my heart that she did have CF before the amniocentesis confirmed it. I did not know how to feel. I never imagined I would have a child with any chronic health condition. I figured I would have at … Continue reading It is Okay to Grieve
We waited for what seemed like forever for results. My blood work came back and showed that I am a carrier for cystic fibrosis. So, my husband needed to get his blood drawn to see if he was a carrier. That meant another two-week wait. His results finally came back and confirmed my gut feeling: … Continue reading The Results are In
Here We Go Egan 