Guest Blogger- Kristen

I am so excited to introduce to you another CF mother, Kristen! Kristen has a unique CF story in that she was diagnosed with Cystic Fibrosis at the age of 31. She was already a mother of two children at the time of diagnosis. Six months after her own diagnosis her children were tested positive for Cystic Fibrosis as well. Below is her journey with CF and motherhood.

Like me, you had a late diagnosis compared to most people with CF. Can you explain how you were finally diagnosed with Cystic Fibrosis?

For many years I struggled with GI symptoms, chronic sinus infections and low weight. Doctors were unable to connect pieces until I was 31 and diagnosed with pancreatic insufficiency. After the pancreatic insufficiency results and a borderline sweat test, the pieces were put together.

I am sure getting a CF diagnosis as an adult was life altering. Your children were also diagnosed with CF which I am sure added to the shock. Do you mind sharing a little bit about what it was like receiving three CF diagnoses in one family over a short period of time.  

I was told the chances my children had CF were very slim, due to the genetics of myself and my husband. However, both my children were in fact diagnosed with the disease. It was shocking to say the least, but yet I felt that it immediately encouraged me to stay as positive about my disease because it was my children’s disease as well. And I did not want them to have any negativity associated with CF.

Cystic Fibrosis presents itself so differently in different patients. Can you share your biggest hurtle with CF?

My digestive system. Even with clean eating and digestive enzymes, I struggle with DIOS episodes, lack of absorption, and low body weight. And because of that, I can be weak at times.  I also have chronic pancreatitis which can cause pain many days and my blood sugar to be erratic

What are your children's biggest hurtles when it comes to Cystic Fibrosis?

We are very blessed that at the moment my children are only exhibiting mild CF symptoms. My son is very strong. He runs almost daily to keep lung function up. However, he does struggle with intestinal issues as well. He has had several “back-ups” as they are referred to and needs to be diligent with laxatives and enzymes.

My daughter is very tiny, like myself and struggles with her pancreatic function as well. She is prone to upper respiratory infections. We have had a good 6 months, but the 6 months prior to that, she had several cases of pneumonia.

Being a mother, regardless of health status, can be challenging at times. We all know CF can be extremely demanding and challenging as well. Does CF ever get in the way of the mother you want to be?

YES! There are times I am too sick to go into the schools for this or that for my children. There are times I am too sick to get out of bed and I hate not being present for my children. My own care takes a lot of time and that is time I have to schedule in my day and away from other things.

What advice would you give and adult that is diagnosed with Cystic Fibrosis.

To not let this disease define them. CF will become part of your life, but it does not need to be your whole life or define you negatively.

What advice would you give to a parent whose child recently received a CF diagnosis?

I would tell them to raise their child to be responsible for their disease, but to raise them with HOPE. Allow them to be who they want to be. CF is only one fact about them, it is NOT who they are!

You and I have very similar philosophies when it comes to food: whole foods, healthy sources of fat, and limited junk or processed foods. This kind of eating can be unusual among CF most CF patients who are told to get as much fat as possible regardless of the source. What made you chose this route when deciding what foods to put into your body?

It was as simple as trial and error. The bottom line is that I feel better when I eat clean foods. My weight stays more stable when my fat and calories come from natural sources. When I stray from clean eating, I suffer with pain and weight loss. I also believe that people with CF need to plan to live a long life (we are making strides that is a reality now) and I believe you should protect your heart, etc when caring for your body and meeting your CF needs

Please tell us about your website, http://amindfullmom.com/, where you share tons of amazing recipes.

A Mind “Full” Mom is a place where I share real recipes made from real foods that meet the needs of real families on real budgets. That breaks down to me sharing recipes that are family-approved, easy to pull off and won’t break the bank. I also share ways to be intentional with life and to not let the craziness of this world impact the memories you make with your family. And of course I share encouragement for staying positive when living with a chronic disease.





To read the stories of ten 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 have CF and are pregnant and want to share your story e-mail me at inhalinghopecf(at)gmail.com

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 8^th 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)gmail.com

 

Guest Blogger- Anika

It has been a while since I have been able to say this so I am extra excited to introduce another mom-to-be with Cystic Fibrosis. Anika is 26 year old and author of the blog, Faux Islander. She is more than half way through her pregnancy at 24 weeks!

 

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

At six months of age I was diagnosed with cystic fibrosis as I was not gaining weight or thriving as normal babies should. Other than not being able to digest food without taking enzymes, the CF didn’t start to affect me, well my lungs in particular, until I was 22 years old. I started getting reoccurring chest infections and had to be hospitalized for the first time with IV antibiotics at 24 years of age. As my lungs have always been healthy, it’s a bit scary for me now as I get older to see them deteriorate so quickly but I am very diligent in exercising and doing my nebulizers which helps to keep them infection-free. Regardless of the hospital admissions and lower FEV’s, I am very blessed to be as healthy as I am with CF; it is something I do not take for granted.

Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to ttc.

 Having kids and a family is something both my husband and I wanted, it was just the timing we were unsure of as we are newly married and didn’t know if we should work for a few years and then ttc or just go for it! In the end, we decided to just stop using protection and see what happened as I wasn’t even sure if pregnancy was possible for me due to my CF. It was definitely a surprise when, one month later, we found ourselves on the road to parenthood with a positive pregnancy test.  

 

What were some of your biggest fears regarding the pregnancy itself? So far have those fears been warranted?

 

Wondering how my lungs are going to cope is definitely the biggest fear I had, and still have with my pregnancy. I wasn’t sure if getting pregnant would cause my lungs to deteriorate faster and thus leave me worse off afterwards but the doctors and my CF team have told me there is no evidence to believe that getting pregnant takes years off your life in regards to the strain it puts on the lungs etc. I found this very reassuring and was thankful they addressed that fear because my lungs have suffered more infections during pregnancy than what is normal for me and it is easier to cope knowing that exacerbations during pregnancy are normal and will (hopefully) only be temporary. I am 24 weeks and have had IV antibiotics twice as, both times, I got sick with a normal cold and couldn’t get the infections cleared solely with oral antibiotics. I am very diligent in exercising and doing my nebulizer (hypertonic saline) with the hopes that I can prevent more exacerbations, or at least extend the times between them.

 

How has your pregnancy gone so far? What have been some of the biggest challenges in your pregnancy so far?

The biggest challenge for me has been trying to avoid getting sick. Ironically, the actual pregnancy itself has been such a pleasant experience; I’ve had no morning sickness, no nausea, no heartburn, and no food cravings or aversions. Sure I slept a bit more in the first trimester and I have the occasional ligament pain as the uterus expands but from some of the stories my friends have told me of their pregnancy experiences, I know mine has been a cake walk in comparison.

 

How do you feel your pregnancy is different that a non-cf pregnancy?

 I think the biggest difference (as best as I can theorize) is that moms without CF don’t have to worry as much about their own health; their stress and anxiety is aimed mostly towards the well-being of baby where as a mom with CF is hyper-aware of every little difference she feels in her lungs (or body in general) as it is hard to know if it’s just a normal pregnancy symptom or a CF symptom which needs to be dealt with.

 

What are your doctors doing in order to ensure your pregnancy is healthy (more doctor appts, change meds, etc)?

 Anticipating my need for more frequent IV antibiotics, my CF doctor inserted a PICC line in my left arm which will stay in until after I deliver as it allows for quick and easy administration of the meds. Having the PICC has actually been such a blessing by taking away a lot of my stress because I know that if the need arises for IV antibiotics, I can basically get them started instantly which is vital to managing lung infections; the sooner the treatment is started the better the results.

 

What are some of your concerns about mothering and CF?

Initially, I am quite concerned about the first few months of motherhood as the needs of the baby are in high demand which means little sleep for me and, inevitably, result in a weaker immune system to fight off colds. Once the baby sleeps through the night I am anticipating and hoping things will then stabilize and I can just carry on carrying on.
I do think about the future and the scary thought of leaving behind a young family if I die earlier than later but not doing things in life (like not having kids) because of fear or because of my CF is not the way my husband and I have chosen to live our lives. No one can know what the future will bring, so just be thankful for every day the Lord gives you…… and live!  

If you could give advice to a CF woman who is ttc or is pregnant what would you tell them?

 I would say, don’t lose heart or get swallowed up with fear if you are constantly finding yourself fighting off chest infections; frequent exacerbations are normal as making a baby puts huge demands on the body causing even perfectly healthy women to suffer more. Also, try and make sure you have supportive people in your life to encourage you and help you. My husband has done an absolutely amazing job at calming my fears and remaining positive when I hit some of those lows; he is my constant companion and helps out in any way he can. My family has also been a huge support and I am comforted to know they are here to help once when the baby finally arrives.
Pregnancy is hard on the body so take the time to care for yourself, whatever that may be.  

**Anika gave birth to a healthy baby boy July 25, 2015 at 36 weeks gestation. He was 5lbs 15oz ***


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)gmail.com

 

Guest Blogger- Colleen

Our next mommy-to-be CF blogger is Colleen! She is from the blog, *Live*Laugh*Love*Breathe, where you can follow her as starts her career as an elementary school teacher, starts Kalydeco, and goes through a complicated journey of trying to have a baby and IUI. She is 25 years old and 31 weeks pregnant with a little girl!

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

I was diagnosed with CF at birth due to a meconium blockage. I had surgery to get it fixed and had to stay in the NICU for about a month until I gained my birth weight back since I had lost about a pound from the surgery. Growing up, thankfully I was very healthy. I rarely did treatments and I felt like CF was kind of pushed to the sidelines and not really addressed in my family/home until I was in middle school & high school when the Vest came out. That’s when my parents tried to get me to do more regular treatments, which was not fun at that age!

I finally took charge of my own health when I went away to college and met my now-husband, Tim. I spent the next eight years doing all of my treatments, eating healthier, and exercising to be the best version of myself for him and our future family.  

Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to ttc.

For Tim and I, it was never a discussion of if, but more of when. After speaking to my CF doctor in college about getting myself healthier, we decided we’d start trying after we got married.

TTC can be a difficult journey for many women with CF, how was the ttc journey for you?

Long! We stopped all birth control and let nature do its thing after we got married and thought I’d be pregnant within a few months. After several months off birth control, I noticed that my periods were still very irregular,  so I talked to my OB who referred me to an infertility specialist. He refused to work with us until we got Tim tested to see if he was a CF carrier, which really made me mad because I felt that was our decision, not his. Either way, we finally got Tim tested and he is not a carrier.

How did you decide you needed intervention? What treatments did you receive?

Shortly after getting Tim tested, we moved three hours south where I got my first teaching job teaching Kindergarten! We started seeing a new fertility doctor, a much nicer and well-informed doctor, referred by a coworker. He did several tests and determined that my Fallopian tubes were filled with an embryo-toxic fluid (hydrosalpinx), that they needed to be removed and that Tim and I were only going to be able to get pregnant through IVF.

I had laproscopic surgery to remove my tubes, but thankfully only one needed to be removed. There was no sign of hydrosalpinx, but a significant amount of scar tissue (most likely from my meconium surgery at birth) around my tubes which damaged the one on my right side. My left tube was perfectly fine which meant we did not have to go through IVF to get pregnant!

After the surgery (February), we tried a few months with Fermara (drug to help me produce mature follicles & ovulate) with no success. Then we did three IUI attempts, and the first one (July) ended in a very early miscarriage, second one (September) didn’t work at all, and the third one (November) worked perfectly…and now I’m 31 weeks pregnant!

What were some of your biggest fears regarding the pregnancy itself? So far, have those fears been warranted?

I was very worried about being able to gain weight during pregnancy since that’s been a difficulty for me my whole life. I was also worried about losing a significant amount of lung function while pregnant. Thankfully, I’ve gained 17lbs so far and my CF doctor and OB are very pleased with that. I have lost just over 10% of my lung function, but surprisingly my lungs have been feeling excellent and I haven't really noticed.

How has your pregnancy gone so far? What have been some of the biggest challenges in your pregnancy so far?

My pregnancy has been absolutely wonderful! I have loved every minute of being pregnant! I didn’t have any morning sickness or nausea which definitely helped me gain weight from the beginning. I really didn’t even feel pregnant until about two weeks ago when I started feeling big and a little uncomfortable. But even now, I still have a good amount of energy and I really can’t complain.

The biggest challenge, for me, has been maintaining my lung function. I was on Kalydeco when I first got pregnant, and my CF doctor and I decided to stop it at 7 weeks, just to be on the safe side. I felt great for about six-seven weeks until I ended up getting sick and my lung function took a dip. My FEV1 went from, low 80s to 69% (lowest I’ve ever seen it), so I started the Kalydeco again (at 14 weeks) and did a round of Tobi, then Cayston which made me feel much, much better. My lung function, as of last week, still hangs in the 70% range, but my CF doctor is happy that I’m maintaining and not losing anymore.

How do you feel your pregnancy is different that a non-cf pregnancy? What are your doctors doing in order to ensure your pregnancy is healthy (more doctor appts, change meds, etc)?

I’m seeing a wonderful pair of High-Risk OBs. I was going every two-four weeks, but now that I’ve hit the 30 week mark, I’m now going weekly until I give birth. They are excellent doctors and are great at taking my CF into account with the pregnancy. They have told me multiple times that I’m the healthiest CF pregnant woman they've seen, and they're so proud of how well I take care of myself.   

I’m also monitoring my blood sugars very closely. I was testing four times a day (fasting & 2 hours post meals), but since I was doing so well, they let me cut back to twice a day. I am also going to see my CF doctor more often now, too. I saw her last week, then I’ll see her next month and possibly two weeks after that. This one's a little harder because she’s three hours away, but thankfully I’m on summer break.

What are some of your concerns about mothering and CF?

To be honest, I’m worried that I won’t be alive to see my child(ren) graduate high school, college, get married, meet my grandchildren, etc. This is something that’s in the back of my mind, but it’s also something I use to motivate myself to keep doing my treatments and take care of myself. For the longest time, my motivation to stay healthy was to get pregnant. Now that I’ve achieved that goal, my motivation is to be the best & healthiest version of myself for my husband and our daughter. 

I’m sure its going to be tough, especially in the beginning, fitting in treatments with caring for a newborn, but my husband understands the importance of my treatments and I know he’ll help me out whenever I need.  

I also don’t want my daughter to be scared of my CF. I wanted her to be well informed and well educated about my disease. I’m sure we’re going to have those difficult questions and discussions, but I plan on being open and honest with her.

If you could give advice to a CF woman who is ttc or is pregnant what would you tell them?

Take care of yourself first! Your (future) child deserves to have the best version of you possible. If you're in the ttc/fertility process, don’t give up! Reach out to anyone of us bloggers, or others in social media, because chances are someone has gone through a very similar experience and will help you not feel so alone. And as hard as it is, be patient... it’ll happen when its supposed to. Of course its easier for me to say that now that I’m pregnant, but trust me, it’ll all work out. And when it does happen, it’ll be SO worth the wait!

Colleen's water broke just 12 hours before her scheduled induction! She gave birth to a healthy baby girl on August 8th weighing in at 6lbs 7 Oz and 19 inches long.



To read the stories of ten 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)gmail.com

Guest Blogger- Beth

We have another CF mommy-to-be to introduce today! Beth is from the blog, The Overdeeps, where she chronicles her pregnancy journey. She discussed everything from dealing with CFRD while pregnant to nursery preparations. She has tons of cute pictures too!


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

I was diagnosed when I was 4, after my sister and I had been sick for years. She was 6 at the time of our diagnoses. My lungs were in pretty decent shape but I suffered greatly from being pancreatic insufficient. 

I managed to stay relatively healthy and avoid the hospital until high school. I started culturing MRSA when I was 18 and saw my health really take a hit. It took moving to a new state & clinic to really gain motivation to kick my sick butt into gear and I managed to get my health back up.

I continued to improve, especially since starting Kalydeco. I'm now the healthiest I've been since I can remember (we're talking numbers I haven't seen since probably I was 10 or 12) which is a good thing, since I'm pregnant!

Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to try to conceive.
I've always wanted children. From a small age I was always enthralled with babies. I started babysitting and nannying in high school, and I ran a few children programs out of the public library. I was just good at taking care of children, it was very natural for me. Having children of my own was not really an option in my mind; it was going to happen.

I met my husband in high school-- we started dating our freshman and sophomore years, but I dumped him a few times along the way and we ultimately got back together once we headed off to college. He was and is, my best friend. He always knew my strong desires to have a baby - but he is a very logical, sensible person and always reigned my "I want it now" madness in.

We had to compromise on our timelines. He wanted to graduate, get a PhD and work for a few years before having children -- with his timeline we were looking at early 30's. My timeline was "As soon as you graduate undergrad, knock me up!" Early twenties. Needless to say we both agreed that waiting so long was much riskier, but we needed to be very comfortable in a few areas before getting 'knocked up.'

We decided that once he had graduated undergrad and had a better idea of what our future held, we would talk about trying for babies. He ended up getting into a PHD program and I had our years mapped out to a T. That of course, never happens the way you plan, so my 1 year and then a baby plan turned into a 2.5 year plan. I worked as a nanny in the new city for 2 years and we saved every penny I earned. I concentrated on getting my health up, and with the help of Kalydeco I started seeing numbers I hadn't seen in over a decade. Things were looking good! In the end our decision to have children came down to a few major factors: 

1. Would we be settled for the next couple of years in one spot? (Passing a PhD qualifying exam was the dealbreaker for this question. He passed, so we knew we would be in one spot for at least 3 more years).
2. Did we have enough comfortably saved up to live off of for 3+ years while we cut our income from two down to one and upped our household from 2 to 3. -By saving my entire salary for 2 years, and being good savers from the start of our relationship, we felt we had a comfortable savings cushion to answer yes.
3. Was my health in stable condition? I had gone the longest without needing IV's since we moved and since starting Kalydeco. I went 18 months. I was averaging 6-9 months previously. We decided that yes, with my lung function as high, my weight was stable and I was the strongest physically that I had been in years we thought my health was spot on to support a pregnancy. The doctors I see at clinic were fully supportive and had no concerns about my falling pregnant and carrying a pregnancy to term.

This led us to getting pregnant at 24, and we'll be parents at 25. Mid-twenties: compromise!

Trying to conceive can be a difficult journey for some CF women. How was your TTC journey?

Our trying to conceive journey involved me being absolutely crazy. I started preparing WAY before we threw the condoms away. We're talking years of prep. I focused on getting my lungs healthy, my weight up and putting on muscle mass.

Once we knew we could answer yes to all 3 major factors of having a baby, I started charting my cycle. I did temperature charts noting my cervical mucus and body signs. I was able to track my ovulation within a few days, give or take. The month we decided to go ahead and throw away the condoms I added even more craziness! I took Mucinex to help thin out my cervical mucus, I drank more water to also aid in the thinning of mucus (and just because it's better for you!). I bought some ovulation prediction kits and a bunch of pregnancy tests. I was in it for the long haul!

We had sex every other day after my period ended, and every day the week around ovulation. I ended up feeling sick shortly there after so we stopped having sex. We figured we maxed out our chances and I was certainly not in the mood.

I got all the signs of a lung infection (and hadn't had IV's in almost a year) so I scheduled a tune-up because I knew I couldn't wait. I was in the two week waiting period when you're not sure if you're pregnant or not.

I figured a tune-up now would be good if I was pregnant since I wasn't yet sharing a blood supply and baby wouldn't have hunkered into my uterus yet. Or, if we weren't pregnant I'd be in tip top shape for next month of trying!

I was giving a pregnancy test the first day I was there, only to have it be negative. We treated my infection as if I wasn't pregnant and decided if my period was late we'd retest and reevaluate based on those findings. Lo and behold my period due date came and went and my charting temperature still hadn't dropped. I demanded a blood test (they also did a urine test) and it came back positive!

After one cycle of TTC we were successful. To say my husband and I were surprised is an understatement. We both were mentally prepared for MONTHS of trying, and here we were a mere 3 weeks later... pregnant.

To summarize, I had quite the easy experience getting pregnant and I can't begin to tell you how thankful we are that it worked out the way it did. We contribute a lot of the ease with Kalydeco since it helped regulate my cycles and thin out my regular cervical mucus. My husband however, likes to brag that he's just got good swimmers. ;-)

I think being at peak health- for both of us, and at an age where you're naturally more fertile really helped tip the scales in our favor.

What were some of your biggest fears regarding pregnancy itself? So far have those fears been warranted? / What are some of the biggest challenges of pregnancy for you so far?

Some of my biggest fears for the pregnancy had to be my health issue. Was I going to get morning sickness and lose all the weight I had put on? Was my CFRD going to be crazy and get so complicated? Was I going to need IV's frequently, are there any IV's I can have? Can I stay on Kalydeco? What if my health drops drastically and I miscarry? Etc. ETc.

I think being pregnant for the first time you naturally have a lot of fears and concerns. I mean, come on they tell you not to eat deli meat and sleep on your back! And all sorts of crazy things!! Now add ontop of that the fact that you take 15 different medications to control your CF and you have an issue with diabetes already... The fears were plentiful.

I think excitement really took over and helped me through the first trimester. I had stopped working, which was great, because my biggest symptom was exhaustion. I slept almost all day and all night. I lost some weight since I had no energy to exercise, my muscle mass that I had worked so hard to pack on was slowly decreasing.

I also was newly pregnant in the start of the flu season! Talk about paranoia! I hardly left the house, and one fateful day, when I ventured out, I brought home the flu (even after getting my flu vaccine).

The flu really did me in. Luckily I was out of the first trimester at that point, so a lot of the drugs that aren't safe were usable. The flu festered into a lung infection and I've been sick ever since. I've had another round of IV's and just having come off them 2 weeks ago I'm starting to come down with another infection.

I think overall it's been easier than I anticipated, but in some ways harder. I wasn't prepared for something like catching the flu -- it could have happened to anyone-- and then having that turn into this long drawn out battle of infection. My blood sugars have been a bit of struggle to figure out and tame, but so far so good. I think the hardest part so far has been mentally. I'm mentally exhausted by over analyzing and worrying. "I haven't gained enough weight, maybe if I had done extra airway clearance I wouldn't be sick right now, I'm not eating enough, I'm not exercising enough, what if all my coughing causes early contractions, how am I going to handle a newborn when I'm SO SICK?!"

Having a great husband has been my saving grace. He talks me down, reassures me, and gives me countless backrubs.

So while my second trimester has had a lot of bumps along the way and may be harder than I anticipated, my first trimester was SO easy that I think we're averaging out to be about what we expected or even easier than expected.

I'm currently only 2/3 of the way done baking my baby, so you may have to check back with me once I've finished the journey!

How do you feel your pregnancy is different than a non-CF pregnancy?

I think my pregnancy is different than a normal pregnancy (thanks to CF) for the following reasons:

1. Catching the flu turns into a massive infection!
2. Being exhausted in the first trimester was much more damaging than I would anticipate a normal pregnancy just because we already use more energy just doing simple tasks, add in not exercising and it really affects your lungs and muscle tone which overall affects your general health.
3. Diabetes is strange. I'm not following any sort of pattern; not CFRD not GD, just strangeness. My OB nutritionist and CF nutritionist work as a team so they've been amazing!
4. APPOINTMENTS! My schedule is crazy filled with appointments.
5. This last one may be controversial, but I feel very judged. I feel since falling pregnant (and now looking pregnant) I've been judged. By hospital staff to complete strangers, to even family. I think that was something unexpected and has been hard for me. I'm not sure how a normal pregnant woman would feel - I'm sure we all feel judged at one point "Why yes she did just order a regular coffee and she's pregnant! GASP" but I think having CF really amplifies those feelings for me.

What are your doctors doing to ensure a safe and healthy pregnancy?

My doctors are great. I see a high risk OB practice (who are SO much more relaxed than a regular OB) and I see my CF team regularly. In the first trimester since I wasn't having any problems I saw everyone at normal intervals.

Since catching the flu and then harboring a lung infection, I've seen everyone much more frequently. I'd say my CF team has been way more valuable than my OB team. In fact, I tend to call them first to see if it warrants a call to the OB. My clinic is pretty large (around 400-500 adults) so the fact that I feel like I get extremely personal care, even more so now that I'm pregnant is so reassuring. Now, if only they could deliver my baby too! haha

Overall, not many of my meds were stopped. I stopped a few things for the first trimester: pulmozyme, advair, flonase. We stopped an alternating month of TOBI, but continued all my other meds. Their philosophy is 'healthy mom, healthy baby.' So far it's been working well, baby is looking great and is right on track!

As I progress to the third trimester I'll see my OB clinic every 2 weeks, then every week, along with more frequent growth scans for baby. I'll see my CF team once a month and then every 2 weeks in the final two months. OR, if things get a little haywire I'll be seeing them as frequently as needed.

What are some of your concerns about mothering with CF?
Oh man, where to start! Concerns about mothering with CF. Being a nanny for so long (and working with plenty of newborns and infants) I know what's coming. Only this time, I won't be able to hand baby back and say "goodnight!" and go home to a baby free house. My main concern is sleep! As a CFer my mood and health truly depend on getting enough sleep. Infants and sleep don't really mix, so I'm most concerned with that.

On a larger, much longer timeline/scale I'm worried about how we'll handle hospital stays and getting sick. I'm nervous about taking care of someone other than myself on top of taking care of myself.... all the time! Our nearest family member is about 2 hours away and then the rest of our family lives about 7 hours away.

I'm nervous about not being able to provide adequate attention when I'm getting sick, and I'm afraid I'll be getting sick more frequently. And is it just me, or do we all get snappy and crabby when we're not feeling well? The thought of being snappy to my little girl is terrifying and something that constantly worries me.

Even though we did an amplified CF screening on my husband I'm terrified that our daughter will have CF. I'm not sure I could mentally deal with the fact that we were responsible for putting someone through a life that I wouldn't wish on my worst enemy- never mind our own child!

I have plenty more concerns but those seem to be the biggest ones so far for me: lack of sleep, running myself down, caring for someone while sick, and having a child with CF.

If you could give advice to a CF women TTC, what would it be?
My advice would be to plan, and talk! It's so key to be as prepared as you can, but also flexible in the fact that things don't always go to plan. I think talking is also very very important. Talking to your partner, your parents, your support system, your doctors... talk, talk, talk! The more information you have the less scary it seems. Good luck ladies (and men) it can be a daunting journey, but I'm sure the end result is so worth it. =) 

Beth gave birth to a healthy baby girl on June 18th weighing in at 6lbs 5 Oz.

Guest Blogger- Shannon

It has been a while since we have had a mommy interview so I am really excited to introduce our newest CF mother, Shannon! Shannon is from the blog, CF Happens which details her life as a wife, as a future author, a CF fighter, and a bonus mom to teenagers! I may some tips from her in about 12 years!!

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

I was diagnosed at 5 months old.  I didn't start needing IVs, "tune-ups" and hospital stays until I was 13 years old.  I am on IVs about 3-5 times a year.  Some years are better than others.  I have am very stubborn so that helps me push through at times.  My motto is "never give up."  I don't want to fail and let CF win so I push the limits.  I want to do all that I can right now because I know there will come a time that I am unable to do them.  I don't want to say "I wished I did_____."  I would rather say, "I did the best I could and got to experience a lot."

Tell me a little about the term bonus mom you use to describe your role as a parent.

We came up with the term bonus mom because step mom's in all the stories and movies are usually evil and mean and I am not.  We said bonus because that is what I am in the kids life, a bonus to the 2 parents they already have.

Tell us a little about your bonus kids and family dynamics.

My bonus kids are great!  I love them as though I gave birth to them.  I would do anything for them.  We have 1 graduating high school next month and going off to the college and going into theater which she loves very much.  Our youngest is turning 14 next month and going into 9th grade next school year.  He loves sports, anything sports.  Our family flows well as a whole unit.  We each have our roles and jobs to make it run smooth.  We have taught our kids that you have to do your part in the family to contribute, it is not all 1 persons job to take care of the house while the others do nothing.  We try our best to teach life lessons whenever possible because we want them to be able to survive in the real world when they are out of our house.  We are a team, no one is left alone. 

Falling in love and starting a new life with someone is a big change! Add kids to the mix and it is even more complicated. How was the adjustment going from single to an instant family of 4?

My husband and I grew up in the same town and went  to the same school.  We have known each other for 15+ years.  We both married other people, got divorced and reconnected after many years via Myspace of all places. haha  He was in Korea at the time, he is in the Air Force.  When talked while he was there and when he got home we went on a date and that was the beginning of forever!  I didn't meet the kids for a few months and when I did, I was dad's "friend" not girlfriend.  We were very respectful of the kids because it is hard enough when your parents are divorced but when one of your parents starts dating it can be devastating.  We slowly did things as a group with the kids as friends.  We didn't want to throw me in their life if we didn't know if it was forever or not.  Once we knew my husband asked the kids for their thoughts on us being boyfriend/girlfriend before we made it official.  They were fine with it so then it was official.  We were very careful when it came to the kids.  I always wanted to be a mom but I didn't know it was going to come this way.  I am very thankful and blessed for these kids.  I have been around kids all my life so going from single to family of 4 wasn't that big of an adjustment except for learning where I fit.  I am not their mom and never will be but I am their step/bonus mom and I take that very seriously and am very proud of that.  We just had to find the balance from when the kids were with us and when they were with their mom.  We have a good system after all these years.  It has been 7 years that I have been in their life.  I am very blessed that I get to be a part of raising them to be loving, caring, law abiding, thriving adults.

How did you explain CF to your bonus kids? How did they take it?

We explained CF to them this... I cough a lot, that's just what I do.  I have to go into the hospital sometimes and do medicine at home to make me better because the pills and liquid like you take don't work.  I have to do breathing treatments to help me breathe good.  It didn't even phase them.  They liked sitting next to me while I did my vest so they could fell the vest.  They liked to help me get my stuff ready for treatments and IVs.  Now that they are older they don't even notice or think about it.  When their friends come over and I'm doing a treatment my bonus son will say, "oh she has CF, she has to do these to help her, it's nothing big."  He then is on his way to play x-box or outside to play.

As the kids got older did your discussions of CF change? Do they share concerns or worries surrounding the severity of CF?  

We don't really talk about it, but they know that they can talk about it whenever they want.  As they got older it has become just like washing the dishes, it's something I/you have to do.  We have had some heart to hearts about CF and what it means.  They know that I am here and not going anywhere for a long while.  They know that it will get worse as I get older.  My bonus son told me once that I couldn't die until he got married and that he will never get married.  Well played child, well played.  We are a very open family and talk about anything so whenever fears or concerns come up they ask or talk about it.

Does CF ever seem to get in the way of your role as bonus mom? If so, how?  
It does when I am in the hospital and can't do the normal running around that I do for them.  I hate being in the hospital and missing life with them.  There are times when I am at home on IVs and not feeling well that I have to take more breaks and am not able to do as much.  They know that physical things are limited because I start coughing and get out of breath and have to stop.  With that said, I usually push the limits and do more than I maybe should because I don't want to miss out on anything.

In the book you are writing you talk about getting your tubes tied so you will not have any children of your own. What made you decide to take this step?  

We chose to get my tubes tied because my lung function was not what it used to be.  If I were to get pregnant it would possibly take a toll on my body that I may not be able to bounce back from.  I tried getting pregnant with my ex husband and it didn't take.  If I had gotten pregnant when I was younger it would have been a different story.  We just made the choice to hopefully avoid any problems in the future.  Once I had my bonus kids I was happy.  Of course I have second guessed my decision and thought that I could have done it, which I probably could, but we didn't want to risk it.  We talked about adoption, but decided that we are very happy and content with our 2.

What would your advice be to other CF moms or dads that are about to embark on the journey of being a bonus parent?  
My advice would be to take it slow and integrate the kids slowly or integrate yourself slowly.  It can be a scary adventure but it is very much worth it.  Maybe I am spoiled in the sense that my bonus kids and myself get along great and there is no hate.  It could be like you see in the movies where the step parent hates the children or the children hate the step parent and they make each others lives miserable.  Luckily that is not the case for us and I am so thankful for that.  Kids aren't dumb they know more than we give them credit for.  They know when mom or dad have a new "friend."  Just speak to them with respect to show them how they need to respect you.  Respect is a 2 way road even with kids and parents.  I would say jump in and love the journey.  There will defiantly be bumps in the road and lots of ups and downs but it is worth being able to love a child and for them to have another loving parent.  There is never too many people to love a child if you ask me.




To read the stories of ten 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)gmail.com