Guest Blogger- Megan

I am so excited to introduce another wonderful CF mommy-to-be, Megan! She has a wonderful and candid blog, Breathing Deeply, Laughing Loudly, Living Fully, that follows her journey through infertility, IVF, and finally pregnancy. She is 25 years old and 18 weeks pregnant. She is due right around my own little Kaylee's birthday (but will have baby around 38 weeks due to CFRD) so I feel I am re-living my pregnancy through her.

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

I have been very blessed in terms of my CF. I was diagnosed at birth due to a bowel blockage, and I have been under the care of fantastic doctors since 6 weeks of age. My lung function has been stable over the last five years or so with my baseline FEV1 of 84%. Around 5 years ago, I was also diagnosed with CFRD (Cystic Fibrosis Related Diabetes), and that has actually been one of the hardest parts of my CF to manage.

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.

This was a very long and hard decision for me. I always knew I wanted to be a mom, but for many years I never even thought it was possible. Once my doctors gave me the green light, I still struggled with the idea of dying young, being too sick to enjoy my baby’s childhood, or even not being able to make it through the pregnancy. I can’t say these fears have really left me, but I ultimately came to the decision that I needed to be a mom. I thankfully became part of a group of CF women who were TTC or already had kids and they really reassured me that I could handle the journey.

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

Difficult. We began trying naturally and we quickly realized it wasn’t happening for us. My doctors said that if we were still not pregnant after 6 months, it would be something to look into. I then went for my pre-pregnancy consult with my (current) high-risk OB, and he suggested a baseline ultrasound. The baseline ultrasound showed many small cysts in my right ovary and my left ovary could not be found. I was immediately referred to a reproductive endocrinologist. Within weeks of that appointment, I was started on the IVF journey. We were actually very blessed because things moved quite quickly. I had a lot of set backs, but just under a year from my first visit to the R.E., I was undergoing my egg retrieval. My first cycle did not work, but we were lucky enough to have 3 embryos frozen, and my first frozen transfer resulted in this current pregnancy.

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

Oh what wasn’t I afraid of? I was terrified about my sugars since I’m diabetic and I know how those can harm the baby. I was also quite nervous that I wouldn’t be able to gain weight, and I was even more hesitant about how my lungs would handle pregnancy. So far, I’ve been extremely lucky/blessed. My sugars have been managed very well with very few high numbers! I have put on 12 pounds so far (I can’t even believe it)! And, my lungs have remained pretty stable. I’m still nervous about my lung function as the pregnancy progresses though.

How has your pregnancy gone so far? What have been some of the biggest challenges in the past 18 weeks?

Surprisingly, my pregnancy has been much easier than I expected. Once I got through the first 12 weeks, I started to feel much better. I now have a lot of energy and I feel better than I’ve ever felt. I thought I would really struggle with all things pregnancy-related, but I’ve been fortunate to be able to enjoy every second of it. So far my biggest challenge has actually been heart palpitations (which I’ve recently found out are completely normal in pregnancy). They have been keeping me from getting the sleep I need at night, and I’ve been feeling run-down because of it.

How do you feel your pregnancy is different than a non-CF pregnancy?
In some ways, I feel it’s quite different and in others it’s very similar to a regular pregnancy. I think the biggest difference from a non-CF pregnancy is that there are so many other constant worries/considerations. Worrying about how my lungs are holding up, watching my sugars carefully, and being prepared to be induced no later than 38 weeks due to diabetes. Also, I have found this pregnancy to really be a full-time job. Between my regular OB, my high-risk OB, my diabetes doctor, and my CF team, I’m up at the hospital for appointments about once a week. It seems non-stop, but I take refuge in the fact that I’m doing what’s best for myself and baby. Other than that, I feel like I have had a pretty normal pregnancy. I have the same fears of almost all moms, and I relish each time I hear the heartbeat or see my baby on the ultrasound screen.

What are your doctors doing in order to ensure your pregnancy is healthy (more regular appointments, change meds, etc)?
Thankfully, all of my meds were safe for pregnancy so nothing has changed in that regard. I do, however, see my CF team monthly now (as opposed to every 3-4 months). Other than that, nothing much has changed. We’ll see how that continues as the pregnancy progresses.

 What are some of your concerns about mothering and CF?

I have a lot of concerns. I would say the majority have been eased by reading stories of other CF mothers, but I still worry a lot about how my CF will impact my child. From the time I spend on nebs, to the constant doctors visits, to getting sick…it all worries me. I also am concerned at how well I will cope with parenting and keeping up my rigorous treatment schedule. Thankfully, I won’t be working which will increase the amount of time I will have to achieve all my necessary goals per day, but I still hope I am able to cope. I also hope to be able to breastfeed. I have always been concerned my weight wouldn’t hold up, but it’s a big goal of mine. After the infant stage, I’m mostly concerned about handling the big questions my child will have about my CF. I want to be honest but not scare them. I still have no idea how I will do that, but thankfully it’s years down the road.

If you could give advice to a CF woman who is ttc or is pregnant what would you tell them?
In a word: Prepare. Make sure to see your CF team so that they can go over your health with you and what their concerns are over the pregnancy. If you have the ability, seek genetic counseling for your significant other to see if he/she carries the gene. Also, get your body in the best shape you can. Run, do the elliptical, swim..just get fit. I wish I had worked on that more before my pregnancy. I’m doing yoga now, but it doesn’t compare to the ability to run. Other than those things, take it easy and treat yourself well during pregnancy. It’s definitely not the easiest road (especially those first 12 weeks), so make sure to listen to your body and its needs. Wash your hands CONSTANTLY to avoid getting sick as much as possible. And finally, enjoy every second of it. I never thought I’d get to experience this, and I am so proud of how well my body is doing with his pregnancy. Each day is a miracle to me as I watch the changes my body is making, or I feel those tiny flutters of the baby. It’s perfection.

Megan gave birth to a healthy baby girl on May 17, 2013. She was a little early, but a good size at 5lbs 14oz and 18 inches long.