Our CF Journey

Me with my mom on my birthday 10/11/1981

"You made all the delicate, inner parts of my body and knit me together in my mother’s womb." Psalm 139:13

I sit here in awe! He had a plan for me long before I was even born. As I sit here thinking about Mother's Day I'm so thankful God has given me four amazing children on earth and one in Heaven.

The life events that have happened over the past 37 years of my life all bring me to a beautiful story and the most amazing part is that it's not finished.

Rylee on her birthday 10/12/2018

Seven months ago today we welcomed a little girl into our life and we would soon learn she had something called Cystic Fibrosis. The day we found out, just seven days after she was born was overwhelming to say the least. Marty received a phone call from the pediatrician's office saying they found two mutations in her newborn screening test that could possibly be Cystic Fibrosis. At the hospital they pricked Rylee's foot and dropped some blood on a small piece of paper. Who new that these few small drops of blood would have such a huge effect on our life? Rylee was born with this. It's something that doesn't go away. Something that was carried to her from Marty and me. It's in her biology. It's in her genes.

She has two specific mutations of her CFTR gene which prevents the chloride in her body from moving back and forth and causes a sticky mucus to build up in various organs like the lungs and digestion system. CF causes a wide spectrum of various symptoms in CFers. For Rylee, she's pancreatic sufficient so her body absorbs nutrients. A lot of CFers have to take enzymes before they eat, to allow the body to absorb the nutrients. Based on one of Rylee's gene mutations she's able to take a very special medication that fights the actual build up of mucus. Everyday she takes a little salt and vitamins with her milk and we do chest physical therapy (CPT) on her every morning and night. She goes to clinic every two months. At these visits she meets with her pulmonologist, physical therapist, dietitian, nurse, pharmacist, and social worker. She also sees the pediatrician for her continued checkups and to keep her updated on her immunizations.

Over the past months we have learned so much about the words Cystic Fibrosis. Some days I want to just close the door and not take in any information and I do that but others days it's a huge pile of mud that I can't seem to get away from.

Rylee is so special to us, she is a miracle from God.

God places various people in our walk for a reason. Sometimes we never know why but other times we do!

About nine years ago I met with a pulmonologist because I had a nasty cough that I couldn't get rid of and I wanted to know why. After meeting with him many times and trying various treatments I honestly left without any answers. My cough continued and several years later I developed GI issues.

About two years ago I went to Brody's seventeen week ultra sound and his little heart stopped beating around fifteen weeks. Two years ago today I walked into a hospital room and delivered him into the world. We had all the tests done. Everything came back normal. I remember telling Marty weeks later that I thought maybe something was wrong with me. Maybe I was meant to learn something from Brody's passing. Pregnancy related issues are consistent with CF. 

Which brings us to two months ago when I met a special person while we were visiting a hospital. I was telling her about this cough that I've had for years and my gastrointestinal issues. She told me that they treat some people that only have one mutation. They have a mutation that's symptomatic. After hearing this, I went to Rylee's CF team and asked if I could have a sweat chloride test done. This is pretty much the gold standard test to see if you have CF. I scored a 47. Twenty-nine and below is unlikely you have CF, 30-59 you have a possibility of having CF, and anything 60 and above is consistent with CF. After getting this number I honestly was so relieved to finally see that my one mutation was probably causing my health issues. We decided to take it a step further and get a genetic screening test done just to make sure I didn't have another mutation.

We found out just two weeks ago that I do have another mutation. I have Cystic Fibrosis. Yes, it's crazy to think I've lived my whole life not knowing that I was carrying this in my biological makeup but I'm so thankful that we're now finding out. If I knew nine years ago, my life could have been much different. Would I even be celebrating Mother's Day now? These are thoughts that have run through my mind over and over in the past weeks. I think about all of the doctor's that I've seen over the past nine years. Pulmonologists, gastroenterologists, obstetricians, primary care physicians, and none of them were able to give me answers for my issues until now. I have an answer finally and we couldn't have found out at a better time in our lives.

In one week, my family and friends will be walking on a team named Rylee's Sweet and Salty Crew for the Cystic Fibrosis Foundation! Each CFer will have a special shirt designating them as having CF. Rylee will have a shirt and I will have a shirt now too. We are a team!

We are so appreciative of all of our family, friends, and complete strangers that have walked the past seven months with us! Your love, your hugs, your prayers, your listening ears, your help with the kids, your questions, your smiles, your meals, your positive words, none of it has gone unnoticed. We thank you so much! So from my heart to your heart if you haven't heard that you are loved today, we love you! Thank you so much for loving us. 

Pregnant with Wyatt

Pregnant with Haylee

Pregnant with Garrett

Pregnant with Brody

Pregnant with Rylee