Tuesday, February 5, 2013

Guest Blogger- Jenny

I am thrilled to introduce my next CF mommy guest blogger, Jenny, from My Life as a Livingston. Jenny is 25 years old and has an adorable 3 1/2 year old daughter named Morgan. I love visiting Jenny's blog as she can always make me laugh Behind all her humor she is always honest which in a world full of "fake" bloggers her blog is a breath of fresh air. As a bonus her little girl, Morgan, is beyond squeezable!

Everyone that has CF seems to have a very different experience. Share a little bit about your CF story or how CF effects you.
I was diagnosed at birth after having two older sisters born with cystic fibrosis (I also have two brothers, both CF-free). My oldest sister, Shannan, passed away when she was just 14 years old. Obviously because of that I knew how ugly this disease can be, but it wasn't until I was a little older that I really realized what having CF would mean for my life. 

Growing up, I was pretty healthy. I had CF related sinus and digestive issues, but I usually felt pretty good and I could definitely keep up with the neighborhood kids. My sister, Teresa, and I would go into the hospital about once a year for a scheduled "clean-out" but other than that, CF played a fairly small role in my life throughout my childhood and early adulthood.  

The first time I really started struggling with CF was after I had Morgan, my daughter. When she was three months old, I experienced my worst exacerbation and most serious decline in lung function to date, and really, things have never been the same since then. Now I feel like I'm playing in an entirely different ball game. During the past three years my health has become increasingly harder to manage. My lung function is significantly lower than it was pre-pregnancy (about 25-30% lower) and about every three or four months, I'm admitted for another exacerbation. Treatments that used to be optional or that I only did when I was sick are now an everyday necessity. Long gone are my days of ignorance and denial. CF is definitely a big part of my life these days and like it or not, it's here to stay. 

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 always knew I wanted to have a child, and deep down I always felt that I'd be able to. As I got older and my health care providers began talking about the potential risks and challenges associated with CF pregnancy, I never really took it to heart. Because my health had been so good up to that point, we actually never considered NOT trying to have a baby. 

 TTC can be a difficult journey for many CF women, how was the ttc journey for you?
Adam and I had been together for about three and a half years (actively trying to conceive for about a year of that time) when I got pregnant. Though we sometimes got frustrated and discouraged, we never sought fertility treatments and eventually things just happened naturally. We both feel very fortunate that this was the case. 

Tell me a little bit about CF and your pregnancy with Morgan. What were the biggest challenges caused by CF in your pregnancy?
My pregnancy was quite a roller coaster, but not necessarily due to CF. I had unexplained bleeding for almost the entire duration of my pregnancy. I was on pelvic rest for my entire first trimester, then off and on for the rest of my pregnancy. When I was 19 weeks pregnant I was getting ready for work one morning when I felt a sudden gush of fluid running down my legs. My first thought was that I was experiencing that delightful "urinary incontinence" I'd heard so much about, but when I looked down, I discovered that the warm fluid was actually blood. I bled so heavily that my socks were literally soaked. 

Ultimately, I went on to carry full-term and deliver a healthy baby, but it was quite an adventure getting there. Looking back, I think the only issue I had during pregnancy that could be directly related to CF was the difficulty I had in gaining weight. Even with a good appetite and increased calorie intake, I only gained about 17 lbs throughout my whole pregnancy. 

I know you do a great job retelling Morgan's birth in your blog. I remember reading it before I had Kaylee. Tell us a little bit about the birth. Did CF play a role in the delivery? How was recovery in terms of pain management when coughing and doing treatments?

I was induced at 40 weeks and 4 days. Which, for those of you counting (I know I sure was!) put me four days past my due date - something I was told from the very beginning would NOT happen! If anything, my doctors expected me to deliver early (perhaps too early) and if that wasn't the case, there was talk of inducing me around 37 weeks to relieve the pressure that Baby was putting on my lungs. But as my due date neared, I had one doctor in particular who became very adamant about holding off on the induction. She was afraid that if I was induced before my body was ready, I'd end up having a C-section and she felt that, for many reasons, a natural delivery would be easier for my body. Looking back, I'm glad she was so firm and I believe her decision was very wise. When I finally was induced, my body responded well and I had a safe and (relatively) easy vaginal delivery. 

The pain from delivery was pretty rough at first (episiotomy, anyone?) but after just a few days I was feeling much better. From that point on, I had very little pain or discomfort when coughing or doing treatments. I can only imagine how much more difficult it would have been if I'd had a C-section. I'll say it again: my doctor was a very wise woman! 

 Adjusting to a new baby is a challenge for any mother. Add treatments to the mix and it can be chaotic. What advice would you give to a brand new mother with CF?

This is something I really struggled with. I was a brand new mom, I was breastfeeding, I went back to work full-time when Morgan was 6 weeks old, and I was expected to fit treatments into the mix somehow? It was a challenge to be sure! I would always try to justify not doing my treatments by telling myself that sleep was just as important for my health, or that feeding the baby was a bigger priority. There was always something else that needed to be done and unfortunately that meant my health got put on the back burner sometimes. 

But then I got sick. REALLY sick! And when I was lying in an ICU hospital bed seriously wondering whether or not I'd wake up the next morning, I realized something needed to change. 

When I returned home, I began making myself do treatments... whether or not I felt like I had the time or energy, and even if it meant leaving the baby in her bouncer crying for an extra ten minutes or so while I finished up my treatment. I had to re-prioritize and make treatments much higher on the list. I told myself that, yes, all the other things I had to dowere important (and they truly were, it wasn't as if I was just slacking for no reason; being a mom is hard work!) but my treatments were absolutely vital in order for me to be alive to get all that other stuff done. It'd sure be hard to nurse the baby if I were dead, huh? And who would change her diaper if I wasn't around? 

Tough love? Definitely. Morbid? A little. But it worked for me! That's not to say I never missed a treatment again, because I did (and still do sometimes). But I found myself doing them a lot more frequently when I started thinking of them as "necessary" instead of "optional". 

Was your health permanently affected by the pregnancy and motherhood? If so, how? If not, how did you ensure your health returned to your pre-pregnancy status?

This one is a little more difficult for me to answer. Yes, my health has changed since having Morgan, but I don't blame just pregnancy (or motherhood). 

As I've already mentioned, I wasn't 100% compliant after giving birth. I was honestly trying, but it was very difficult for me to juggle everything and unfortunately, my treatments were usually the ball that got dropped. Also, going back to work so soon after giving birth was very hard for me. I wish I'd had a longer maternity leave or that I could have just gone back part-time, but circumstances being what they were, I did what I felt I had to at the time. And to top it all off, my doctors and I are pretty sure I caught swine flu (all of this was going on during that wonderful 2009 epidemic). All of these things were factors that contributed to me getting so sick shortly after having Morgan, and I think THAT is what I've had a hard time recovering from, not necessarily motherhood itself. 

How do you manage your health now that Morgan is a little older?
Well, the good news is that it get's easier. Now that Morgan is three, she is easily entertained by the TV, a book, or an art project while I do treatments. She also loves to exercise with me. This makes taking care of myself a much easier task! 

How do you explain your CF to your daughter?
It's only been recently that Morgan has begun questioning things. I think she's finally beginning to realize that not everyone wears a silly jiggly vest and not everyone takes a handful of pills everyday or spends so much time in the hospital. I've explained to her how the things I do at home help me stay healthy, but sometimes I get sick and need my doctors to help me feel better. She obviously doesn't understand what CF is, but she does realize there is something different about me and often calls me her "special" Mama. 

I've thought a lot about how I want to approach this subject as she gets older. The best I can come up with is to let her ask questions as she has them, and then try to answer those questions as openly and honestly as possible. I never want to hide my CF from her and I want her to understand all that it entails, even the ugly parts. But I think it's important to do so when the time is right and she is old enough to handle that information. I just pray I'll recognize the time when it comes.  

If you could give advice to a CF women who is ttc or is pregnant what would you tell them?
                  I think my advice to other women on this journey would be pretty much the same, regardless of                       whether or not they have CF. That advice would be first to trust yourself, trust your instincts, and trust your body. You know better than anyone else what your body and soul are capable of. Don't let anyone say you can't do something if you know in your heart you can, or that it's at least worth a shot. A mother's intuition begins before long a woman "technically" becomes a mom. 

Second, educate yourself and know that there are ALWAYS options. I think it's easy to become intimidated throughout this whole process and when that happens, I think we sometimes let others make our decisions for us. I often hear of women who agree to be induced early simply because they have CF, or who are told over and over that they won't be able to breastfeed/carry full-term/have a natural delivery, etc. simply because they have CF. The truth of the matter is that there are so many options for us and we are strong women who are capable of almost anything! While it is true that having CF can make it harder for a woman to do certain things or may put her at higher risk in some situations, there is NO hard and fast rule that we CAN'T do these things. Often it's just a matter of being educated and making a wise decision based on our individual circumstances. 

And finally, have fun! Cherish every single moment. And don't blink, not even for a second, because one day you'll wake up and realize that your sweet little newborn has suddenly turned into a wild and crazy three year old. The time goes too fast... but there's so much fun to be had along the way! 

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


  1. Yay! I'm so excited to be part of this! Thank you!

    Oh, and I found the post you mentioned about my labor experience, if anyone is interested in reading that:


    Thanks again!

    1. I am so glad you added the link about your birth story! I was going to look for it last night to link it, but my daughter has decided that she does't need sleep anymore. Sigh!

      I also wanted to say I can't believe you went back to work after 6 weeks!! I probably read that in the past, but now that I have had a 6 week old I realize how hard that must have been. I remember freaking out when I had to go to my 6 week post partum check up because just getting out of the house was a challenge. Basically, you are amazing!

  2. Jenny your such an amazing person i know i tell u all the time but u truly are. im so glad i got to meet u and be apart of ur family. i love reading your blogs i never read anyones but i always find time to read your :)

  3. Loved the honesty and courage exuding from this post. As always, well done Jenny!

  4. I just wanted to say I adore Morgan (my neice) and am glad you brought her into this world : ) (and good job--great post)

  5. Jenny, you are the youngest of my five children. When your oldest sister was diagnosed with Cystic Fibrosis, it took a lot of faith and courage for us to go on having children, knowing that each one of you could also have CF. Each one of you has given me a different kind of joy, and have made me so happy in our decision to continue on with our family. I am also thrilled to have the grandchildren that I have, and to watch each one of you as parents.

    As a young mother, I struggled with the heartache that comes to parents of children with CF. I didn't realize the heartache that would also come in watching you and Teresa deal with CF as a parents with children of your own. My heart breaks along with Morgan's each time you have to leave her to go back to the hospital.

    In spite of the heartache, I do not regret for a moment our decision to give life to each one of you. I'm thankful to know that none of you regret it either. That has been a great blessing to me. I'm grateful to see how much you and Teresa have truly enjoyed life, and how strong you have become; how sensitive to other people you are. I dare to say that Cystic Fibrosis has molded our entire family into better people than we might have been with out in our lives!

  6. Thank you so much IH for doing this series. It sometimes feels so lonely being out there with CF since when we go to clinic we're shut up from any of the other patients and can only hear the coughs. It's wonderful to be able to connect and see yourself in other CF mothers stories.
    Thanks Jenny for telling your story. I can totally relate with having to come to terms with CF after motherhood!