Thursday, March 18, 2010

My Life as a Pregnant CFer: A Novel

PREGNANCY, in and of itself, is a complete unknown. It's impossible to predict how any woman's pregnancy will play out. Things don't always happen the way we think they "should". Each woman has an experience of her very own.

Kind of how CYSTIC FIBROSIS, in and of itself, is a complete unknown. It's impossible to predict how one person's symptoms will play out. Things don't always happen the way we think they "should". Each CFer has an experience of their very own.

Now, add the two together and what do you get? An insane amount of uncertainty, to say the least.

I've recently received quite a few questions regarding CF and pregnancy , so I decided to write a post about MY experience. Please understand that this is just ONE PERSON'S experience. I can't possibly know what pregnancy might be like for anyone else, regardless of whether or not they have CF. If, by sharing my story, I can answer anyone's questions or give just a little insight on the topic, or if reading this gives even one person something to do other than watching Jerry Springer while eating day old macaroni and cheese straight out of the pan, then my work is done.

Consider this your FAIR WARNING: I'm totally comfortable talking about things like boobs, vaginas and the consistency of cervical mucus. So if you're the extreme conservative type, you may want to stop reading this here and now.

First of all, I've never ovulated or menstruated regularly. I'm not sure if this is related to having CF, or if it's a defect specific to my body. In a typical year I have six or maybe seven cycles. Even though it's always been completely normal for me to be "late" or to skip a period or two entirely, any time I ever thought there was the slightest chance I might be pregnant, I took a home pregnancy test. I'd taken so many by this point that I'm pretty sure I'm solely responsible for getting First Response throught the recession. But each time the answer was the same, a big fat NEGATIVE. By early December (2008), I hadn't had a cycle for over three months. My boobs were a little sore, sure, but that wasn't really out of the ordinary for me, either. As I was cleaning the bathroom one day I stumbled upon a couple pregnancy tests that had been pushed to the back of a drawer. Yes, a couple. I was buying in bulk by this point. I looked at them in my hand for a few second and figured WHAT THE HECK, and peed on one.

A few minutes later I sat on the bathroom floor staring at those two pink lines through tear filled eyes. There were so many things going through my head: excitement, disbelief, fear, disbelief, sheer happiness, disbelief. After the initial shock passed, I gathered myself up enough to pee on the second test, just to be sure. Still positive. But because I still wasn't convinced, I had to be sure it wasn't a faulty brand (because how likely is that?). So I drove to the store, bought another test-of a different brand-quickly drove home and peed on that one, then waited. But the answer was still the same. Still POSITIVE.

The next few hours consisted of countless tears of happiness mixed with phone calls to Adam, my mom, my sister and even my pharmacist. He had to reassure me, multiple times, that the label of a medication I was taking that read 'MAY ALTER URINE TEST RESULTS' applied only to drug tests, not pregnancy tests. Over the next few days (after two more trips to the store for more pregnancy tests) things started sinking in. I was going to have a baby!

My pregnancy was considered high-risk from the very beginning. However, I chose to be seen by a doctor here in the county which meant, because the county I live in is so small, I was treated by a Family Practitioner. We don't have an OB-GYN in the entire county. My doctor had recently delivered two of my nephews and both my sisters-in-law were very satisfied with the care they received. I'd also seen her in the past for minor things, and had become very comfortable with her. The bottom line was that I trusted her. Although she had never treated someone with CF through a pregnancy, so it was a learning experience for her as well as for myself. She kept very close contact with the high-risk specialists and a pulmonologist at Utah Valley Regional Medical Center in Provo, UT. Should I have been treated by a specialist? Probably. If I were to do it all again, would I choose a specialist over a family practitioner? It's hard to say for sure, but most likely, yes.

My first appointment was very routine, and things appeared to be fine, which was very encouraging. But, just a few days later I started bleeding heavily. I was told that I was most likely miscarrying and that, quite frankly, there was nothing I could do about it. However, my blood tests the next day revealed that the pregnancy hormone (hCG) in my body had continued to rise, which was a good indication that the fetus was alive and well. An ultrasound later that day confirmed that was the case. Baby was fine. I wasn't miscarrying.

I bled regularly from that day on, often times passing blood clots that ranged from the size of a pea to the size of a quarter. Each bleeding episode was followed by more blood tests and another ultrasound. Since I was bleeding at least once a week, that means I had...well let's just say several...ultrasounds. There was never an explanation for the bleeding. All of the common, and several not-so-common causes for vaginal bleeding during pregnancy were investigated and eventually ruled out. At 13 weeks, it appeared that I had a very minor case of placenta previa (where the placenta covers all or part of the cervix) but it resolved itself within two weeks. However, the bleeding continued. I was put on "pelvic rest", which meant that I was still allowed to go to work but couldn't do anything that required any kind of physical labor: vacuuming, dusting, carrying groceries into the house, etc. In all honesty, pelvic rest wasn't half bad. We were hoping that by taking things easy for a while, whatever issue my body was having would resolve itself and the bleeding would stop. My doctor was threatening me with bed-rest if it continued much longer.

Early one morning, when I was about 19 weeks pregnant, I was getting ready for work when I suddenly felt a warm sensation running down my legs. I figured I must be experiencing that urinary incontinence I'd heard so much about, but as I looked down I realized that it wasn't was blood. I watched in horror as the blood soaked my pants and continued running down both legs until even my socks were saturated. In reality, it only took a few seconds but I felt like it was happening in slow motion. Adam wanted to take me to the ER, but I insisted he go to work. Looking back, I'm not sure why, but at that moment I just knew things would be alright. Not necessarily that everything would be okay with the baby, but that whatever were to happen, I'd be strong enough to handle it. I called my doctor and she immediately ordered another ultrasound.

Although I'd seen our baby through ultrasound several times before, there was something remarkably different about it that day. Suddenly there was more than just a little peanut in there. I could see functioning arms and legs, delicate fingers and toes, a mouth and tiny little ears... there was suddenly a BABY inside me. A beautiful, perfect baby. And my heart was suddenly filled with a kind of love I'd never felt before. A mother's love. I called Adam as soon as I left the hospital to tell him we were having a BABY GIRL.

After that day, just as unexpectedly as it had begun, the bleeding stopped. The threat of bed-rest was thrown out the window and I was slowly able to resume my normal activities. It was like I was finally able to take a deep breath and relax. For the next three months, I was able to REALLY ENJOY my pregnancy.

The fatigue that had plagued me for months was replaced with an insane amount of energy. Morning sickness, which was never a real issue for me (I can count on both hands the times I felt nauseated and on one hand the number of times I actually threw up) was completely non-existent by now. I'd spent the entire first trimester of my pregnancy with some kind of cough or cold. I'm always prone to catching whatever is going around, and since the immune system takes quite a hit during pregnancy I was even more susceptible for a while. But, I had finally kicked that cough and my lungs were feeling great! I was slowly gaining weight, although I did have a hard time hanging onto the pounds. I'd gain a few, then lose one or two, then gain two more and lose another. Overall, I gained 16 pounds. Not as much as we'd hoped for, but since gaining and retaining weight is such an issue for someone with CF, we were pleased with whatever extra I was able to pack on. I was regularly tested for gestational diabetes, and although I was borderline the entire time, my levels were never high enough to be considered an issue. Aside from a bout of dehydration that landed me in the hospital for a night, getting pumped full of IV fluids, things were going well. I was loving being pregnant!

I'd been told from my very first appointment that under NO circumstances would I be allowed to carry past my due date. In fact, the plan was to induce labor before I reached 40 weeks. After visiting the perinatologists (high-risk specialists) at Utah Valley for a "good once-over" and brief genetic counseling, they decided that a sample of my amniotic fluid would be taken at 37 weeks to assess the development of the baby's lungs. As long as they were mature enough, my labor would be induced as soon as possible in order to relieve the pressure on my lungs. Although I wasn't experiencing any lung discomfort at the time, they expected that as the baby grew I'd eventually notice a change. But this was all more of a back-up plan because nobody expected me to actually make it to my due date with the baby still inside me. It was a popular opinion that all the bleeding I'd experienced, plus the simple fact that I have CF made me a prime candidate for pre-term labor.

At 30 weeks I ended up getting sick again. But this time, it was more than just a cold. I had all the hallmark symptoms of a lung infection. To make matters worse, as expected, the baby was now big enough to greatly restrict my lung movement, so I was unable to get enough air behind the mucus filling my lungs to cough it out. For the first time in my life, I was put on oxygen. During this time, I noticed something interesting: as my coughing increased, the bleeding returned. Although my doctor kind of disregarded it, I began to suspect that the cough I had during my first trimester was somehow related to the bleeding I was experiencing. Was it a coincidence that the bleeding returned when my cough did? I suppose we may never know.

To ensure that my lack of oxygen wasn't affecting the baby, I was sent in for weekly non-stress tests: a test where they monitor the baby's movement and heart rate for 20-30 minutes to assess fetal well-being. These tests indicated that all was well, until the baby stopped growing at 37 weeks. My fundal height (a measurement from the top of the uterus to the top of the pubic bone to determine fetal development) actually got smaller, and the baby's estimated weight by ultrasound stopped increasing. The non-stress tests became twice-weekly.

The plan to induce labor at 37 weeks was put on hold for a few different reasons. One of them being that I wanted to avoid a c-section if at all possible. Because the drug used to induce labor (Pitocin) often causes harder, more intense contractions, there is often more fetal stress. There is also the chance that because the mother's body isn't naturally ready for labor, the contractions may be very hard, but ineffective. In this case, the cervix refuses to dilate and medical intervention (c-section) becomes necessary. My doctor felt that for me, recovery from a c-section would be much harder than recovery from vaginal delivery. She also felt that the risk of infection at the incision site was a factor we needed to consider. There's also risk involved in the procedure used to sample the amniotic fluid to determine the baby's lung development. Add to that, the chance that something could go wrong if, for some reason, something hadn't developed as fully as we thought and she wasn't actually ready to be born. At this point it was a toss-up between my own health and the best interest of the baby, which is difficult for a mother to choose between. My doctor and I both felt that it was best to wait and hope that I went into labor naturally before the infection in my lungs got much worse.

Because I hadn't gone into labor and the baby still hadn't grown any more, at 39 weeks I was sent in for a biophysical profile. This is a non-stress test, combined with a detailed ultrasound where five things are analyzed: fetal muscle tone, breathing rate, movement, amniotic fluid levels, and heart rate in relation to movement (it's supposed to increase each time baby moves around). Two points are possible for each of these things, so if your baby falls into a normal range for all five you get a score of 10. I left the hospital in tears that day after getting a score of 4. As in 40%. As in, that's worse than a failing grade. As in, C-SECTION OR NOT, LETS JUST GET THIS BABY OUT! My body had given her all that it possibly could.

But my doctor insisted that an induction at this point would very likely lead to c-section, something she still wanted to avoid. So I began attempting to induce labor naturally. Every wives tale that exists on the topic, I put to the test. But nothing worked. I ate spicy foods, I walked, I jumped-rope, I bounced on a birthing ball, we had sex--LOTS OF SEX, I visualized and meditated (attempted to, anyway), I drank red raspberry leaf tea, Adam took me to the park and pushed me on the swings, I walked some more, I started using evening primrose oil, I'd been using acupressure for a couple weeks, but I doubled up on the time I spent stimulating those pressure points. The only thing I didn't do was drink castor oil. My mother in law insisted it works, but I've heard too many stories about it posing risk to the baby and although I was getting desperate, I wasn't willing to put her in harm's way.

In the end, I was induced at 40 weeks 3 days. My doctor was unwilling to wait any longer for the sake of my lungs and also, out of concern for the baby. Luckily, the induction was a success and labor was awesome! The things a woman's body is capable of doing are absolutely mind-blowing! My body was perfectly strong enough to handle the delivery and my lungs, even being sick at the time, were not at all a factor in my ability to give birth.

Despite all the concern she caused while she was inside, when little Morgan made her appearance she was perfect. Literally. Her APGAR scores (a possible score of 10 given at one minute, and then again at five minutes after birth, to summarize the newborn's overall health) were 8 and 10.

My pregnancy was full of ups and downs, but I don't necessarily think that was because of my CF. I think it may have played a role in some of the things that happened, but because the very nature of pregnancy is full of uncertainty, I can't guarantee things would have been much different if I were completely "healthy" to start with. My pregnancy was a fun, sometimes frustrating, sometimes difficult, but most of all BEAUTIFUL experience.

One I'll never forget and am so grateful to have had.


Part II of this story would be My Life as a Mom With CF, but that will have to be another post, another day.


  1. I am exactly the same way as far as menstruation goes. I am glad I'm not the only one, since before I was on birth control my CF doctors used to look at me like I was a freak. (Ironically enough, my gynecologists have always thought it made perfect sense - if your body is expending so much energy on normal functioning it doesn't have much left over...)

  2. I know the whole story but it was still fun to read.

  3. Cindy,
    At the risk of getting a little too personal, I'm wondering if the birth control helped regulate your periods. Before I got pregnant my doctor wanted to put me on birth contol for a year or so to help regualte my periods in hopes that it would help me concieve after I stopped. I never bought into the idea since I wanted so badly to be pregnant already, I couldn't imagine waiting another whole year to try. And I'm on birth control now, but thanks to breastfeeding I've not had a cycle yet, so I'm not sure what to expect.

    WOW, that was a lot longer than I intended.

  4. Jenny - I'm not sure. I've heard it go both ways - some women have a harder time conceiving after BC, some easier. I guess that if we go that route we'll see??? I do know that being ON birth control actually makes it so I HAVE periods. Before I started BC, I literally went for 9+ months without birth control (which meant that while I was engaged I got about a pregnancy test a month from my freaked-out NC doctors... joy).

  5. I love reading others birth stories, and yours is especially unique, not only for the CF, but all the times when we were little I remembered talking about living next to each other an having our families together :). I do however have to say, my goodness you sure can pee a lot!!!!! Hugs~ Katie


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