Monday, March 28, 2016

Guest Blogger- Sara

I am thrilled introduce to everyone to another CF mommy! Sara is 35 years old and a mother to Wiley and Gunnar, ages 8 and 6. Sara, her husband Bill and kids are an outdoorsy family (just like mine!!) and they enjoy hiking, skiing, and going to the ocean! She is a fellow double delta F508 with a baseline of 75%. She stays healthy by doing the Vest and hypersonic saline 4x a day as well as running up to 4 times a week.

Everyone that has CF seems to have a very different experience. Share a little bit about your CF story or how CF effects you.

When I was born in 1980, I had a meconium ileus. I was being prepped for surgery when I passed it on my own, luckily! The doctors suspected I had CF. But didn't test until I was a month old. With a positive sweat test at that point, my parents were told that my health was in their hands. They began doing manual CPT twice a day and giving me enzymes. I was followed at a CF center that was 3.5 hours from my home, so that I could receive the best care possible. My FEV1 remained well above 100% until after I graduated college at 23 years. CF was more of a nuisance, requiring CPT, nebulizers, pills, visits to the doctor, and occasional 2 week stays at the hospital.  I was always full of energy and never felt sick. My parents and doctors were very proactive and aggressive with treatments. Unfortunately, during the transitional years where my care was turned over to me, it became  reactive and lazy. And my lungs paid the price. Although I had played  division III lacrosse all through college, I did not do much else to maintain my lung health during those 4 years or the 2years after. , and as a result I had my first case of pneumonia upon graduation and in the months after that I lost a lot of lung function. CF had little impact on my health or life until that time. I spent minimal time doing treatments and only thought about CF on the 2 days a year that I went to clinic. Now it seems I think about it everyday, and I spend hours doing treatments and trying to stay ahead of the germs my two sons are constantly bringing home to me. Although I have maintained my lung function at 75% for the past 10 years, I have had to work harder everyday for that 75% than I ever did for my 120%.
Deciding to have children when you have CF is not an easy decision. How did you and your husband come to the decision that having children was right for you?
We didn't really give it much thought. I always wanted to have kids, and I was going to do that. My husband had a genetic test done, and he was not a CF carrier, so we went for it.

How did CF play a role in your pregnancies with your sons? Were both pregnancies similar or were they different?

My first pregnancy had a rough start. I had a miscarriage just 2 weeks before I conceived my first son. When I was first pregnant I didn't know it. I suspected I might be, but didn't want to get my hopes up. I wasn't going to test until after I had gone past the point where  I miscarried my previous  pregnancy. However, I caught a nasty virus that had me coughing so hard I was vomiting, and delirious with a fever. I ended up in the hospital for an urgent clean out. At the time of admission, they did a pregnancy test and confirmed I was pregnant. I had lost a good amount of weight from the virus, so I had to play catch up all through the pregnancy, but I managed to gain about 40 lbs by the end. I did not need IVs again for 7 years.

Life is harder with CF than without. It was a drag  going to so many extra doctor’s visits. And the tone of the doctors detracted from the joy of being pregnant, particularly in my first pregnancy when I was a first time mom and was unsure of what it would be like. Rather than reassure me, they fed into my insecurities. The second time around, after having a successful  and uneventful first pregnancy, I had confidence and enjoyed the experience 100% more. Both of my babies were full term, big (8lb1oz, 8lb 2oz) and healthy, and I gained weight easily with both. The best part about my pregnancies was that my lung function actually improved throughout them. In the 8th month of my second pregnancy I hit an FEV1 of 88% !

While CF did not have much impact on my pregnancies, I would say pregnancy had a huge impact on my CF, in a good way. I think the combination of wanting my babies to be as healthy as possible as well as sharing life with a healthy being in my body are the two things that helped me gain health throughout both pregnancies. I controlled my blood sugars so tightly that the doctors told me to loosen up a bit. Or maybe I was just so full of happiness it literally brought me health.

Please share a little bit about the birth of both your children. Did CF play a role in the delivery or recovery?

Both of my babies were full term. They were both delivered vaginally. But other than that, I had two very different birth experiences. The first was induced, I had an epideral, and I had a lot of tearing requiring stitches. I pushed for a few hours on my back, at the doctors command. Recovery was hard because of the tearing and because I got very engorged when my milk came in. It took a few weeks to get everything under control.  The second time I mostly labored at home, and delivered him 16 minutes after arriving at the hospital. I pushed on my hands and knees for 30 seconds.  I  had no IV, no epideral, not even a heart monitor on my belly, and very minimal tearing, if at all.  Recovery was much easier the second time as well. I didn't have the tearing, and my milk came in just right, I never got engorged. Although learning to be a mom of 2 was challenging.

I didn't feel that I was limited at all from CF. But I did have the usual extra stuff to do to care for myself in addition to laboring, recovering, and caring for a newborn. I did my vest and nebs during labor both times. And continued to check my sugar levels, give insulin, eat and so on. Doing the vest when I was engorged actually didn't hurt because it promoted the milk to let down, and afterwards it was like I  had just pumped (but it was messy). I nursed my first son until he was 17 months old, and I was 3 months into my second pregnancy. I nursed my second son until he was 2.5 years old. And I still haven't lost all of my “baby weight”.

Caring for another person day in and out regardless of health challenges can be extraordinarily challenging at times. What aspect of CF and motherhood do you find the most challenging?

 I feel like I just don't have enough time or energy to be the kind of mom I thought I would be. So the hard part is being the best mom I can be, and trusting that is enough. I'm tired all the time, but I am very careful not to let myself get so run down that I get sick. Because being sick makes everything harder. So it seems like I am constantly choosing what is most important to do each day with the limited energy I have. I can't do everything that other moms do, and I feel like I am always letting someone down. Also, when I am feeling extra run down from fighting off a cold, or taking home IVs the whole family’s day needs to revolve around me. That makes me feel guilty, and inadequate as a wife and a mother. Thankfully my mom has stepped in whenever I need help. She will stay with us and do everything I normally do with housework, and watching the kids, as well as take care of me. But it is hard knowing I need help like that. Also, having my mom live with us for 2 weeks at a time has it's own set of challenges!

Kaylee is only 3 1/2 and is already aware that I do things that most moms do not have to do such as treatments, taking enzymes, etch. How do you explain your CF or tackle health questions your boys may ask?

From day one, my goal has been to include my boys in my CF care and decisions as much as possible. My goal was to normalize CF. And I realized that CF would be to them, whatever it is to me. So I had to decide what it means to me, then make sure my actions and words back it up. I brought them to all of my clinic appointments until they started school. They would sit at the doctors office with me for 2-3 hours 4 times a year. When they were small enough I would roll them in in the stroller and there they would sit, and take it all in. When they got older, they would walk in and sit in the chairs or my lap, and continued to be a part of my appointments. Sometimes they would ask what we were doing, or what something was. They asked small, simple questions, and I gave small, simple answers.

At some point, I brought up the fact that other people’s moms don't do the vest or have a port, or drink “milkshakes” (boost plus). We have participated in a large fundraiser for CF for as long as they can remember, and that has been a way to bring up CF as well. Through the event we have met other healthy Cfers who are thriving as well. We’ve had conversations about why it is important for me to do all my treatments everyday. And why I decided to have sinus surgery and go in the hospital for a clean out. The answer is simply because I have CF my body needs different things to keep it as healthy as possible. My sinuses and lungs were getting too filled up with germs, and I'm  going to clean them out so I feel better. To them, CF is just another part of who I am. I'm different from Dad because I have long hair, CF and a vagina. They ask all kinds of questions about all kinds of things, and CF is no different.

What advice would you give to other mothers that are juggling both CF and motherhood?

I think that growing up with a mom who has CF can be a great thing for a child. They get an excellent role model for overcoming adversity, demonstrating work ethic, and living a life with intention. Everyday I work for my health. Sometimes I feel lazy and start wishing I didn't have to do so much, but I never give in. They see that.  Sometimes I'm sick and I have to take IVs at home. I schedule my days in a way to get all my treatments in, get enough rest and still be emotionally present for them. I struggle, and I mess up sometimes, but I try again the next day. They learn that. They love me unconditionally, and I didn't even know what that meant before I had them. It’s their love that led me to love myself just as I am. I have a peace in my soul I didn't have before. I'm so grateful to have them on this journey with me. At the end of the day, life is the connections we have with those we love. Everything else is just trivial distractions.

It is our job as parents to teach our kids about life, and how to live. I like to include death in those discussions as well, because it is a universal truth that everyone is going to die. Death is not something to fight or avoid, but to embrace. No one knows when they will die, but when it is time, it happens. Until then, we live! We take care of the bodies we live in, we connect with our world, we laugh, we cry, we love, and we talk about death.

There is a parenting style that embodies the quote “never do for a child that which he can do for himself”. As well as “if he can walk, he can work”. I don't have the energy to parent any other way, but even if I did, I'd still parent this way. My kids are confident and capable little people. They are tuned in to what is happening around them, and excited to do their part for our family. You can learn more about it from Vicki Hoefle, and Parenting on Track. As well as her two books “ duct Tape Parenting” and “Growing a Grown up, the Straight Talk on Parenting”



To read the stories of other women with CF and their journeys with CF and pregnancy/motherhood please click here.

If you are a CF mother (though adoption, step children, surrogacy, fostering) or are CF and pregnant and want to share your story e-mail me at inhalinghopecf(at)


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