Monday, November 26, 2012

What I Can't Keep

Every morning I wake up amazed by you. I am still in awe that I carried you inside my body for nine months. That you can sustain life from my milk and my milk alone. I get so excited to think that you are all mine. But in reality, little one, you are not mine. You never really were. You are your own beautiful soul. You are a little spirit who can move freely around this Earth. I cannot keep you as mine just as you cannot keep the wind trapped in your closed palm. I get to care for you while you are too little to care for yourself. I get to protect, and love, and cherish you, but you aren't mine to keep. Each day I need to let you go just a little bit more as you grow independent of me. One day I won't be able to stop you from breaking completely free. Oh, how beautiful motherhood is. How beautiful to watch my heart slowly break a little more each day.

Sunday, November 25, 2012


Yesterday morning at the breakfast table Kaylee very loudly passed gas, immediately looked at me and let out a huge gasp! It was perfect timing and pretty funny. Later, I told her it was nap time and she let out a sizable gasp! While changing her diaper, Gasp! While laying in bed before her nap, Gasp! While I was holding her and changing laundry, Gasp! When her dad got home from work, Gasp! While nursing she had to stop twice, Gasp! Some days she makes me laugh the entire day!

In other baby updates two nights ago she initiated her first game with me! I had just changed her diaper and placed her in her crib so I could wash my hands. Upon returning she started playing peek-a-boo with me in her crib. She would turn her head away and "hide" only to quickly whip her head back to me and smile which eventually tuned into a laugh. This went on for a solid three minutes or so. I guess our endless games of peek-a-boo are paying off. It is amazing to watch her grow and develop into such a fun loving little girl. She becomes more and more fun everyday and with each passing day I am more and more amazed by this little soul!

Monday, November 19, 2012

First Cold

I have been really healthy since I stopped working at a germ infested elementary school (said with love).  I have very little exposure to germs since I am usually at home with Kaylee and all of my mommy friends are sure to stay far away when they are sick or have a little one that is sick. My husband on the other hand, works with a lot of people everyday and so is constantly exposed to germs. He normally has a very good immune system and rarely get sicks. When he does get sick it is a little like this. This past week he came home with a cold that lasted about two days, no big deal. We were so nervous that Kaylee would catch it, but as the days went by and she seemed fine we became more confident that she would stay healthy. I was so worried about Kaylee catching the cold, but I forgot that getting sick is a big problem for me too. Sure enough I caught my husband's cold just in time for the holidays!

This is the first time I have gotten sick (minus a few random fevers) since Kaylee arrived so it should be interesting. I have been napping with her for every nap which has left me feeling really well rested, but a little more chesty since I have spent so much time laying down. Kaylee is very good at self entertaining so I have spent extra time doing treatments while she plays nearby. I also spent the remaining hours of the day with her wrapped in the Moby so that she could be close and comfy, but I didn't need to entertain her since she is perfectly content hanging out in the Moby watching me go about my life. I have felt that I may need a tune up for a while now and I think this will do me in. I go to clinic next Monday and will be sure to share the verdict with you.

Saturday, November 17, 2012

In A Groove

I finally found my groove as a mom. I know that sounds pitiful considering I have a five month old and not a one month old, but it is true. It is not that my life was crazy chaos before this, but there was always something that needed tweaking  In the beginning I was so busy taking care of Kaylee's needs that my own needs (besides my CF needs, those were always tended to) became hard to meet. Showering wasn't a daily occurrence and shaving my legs was a joke. It didn't help that my husband had to return to work 2 days after we got home from the hospital.

Soon I was able to care for Kaylee and my own needs, but found the household needs were lagging. I struggled to keep the house clean and making dinner seemed like a major accomplishment. Not long ago I felt like I could take care of the entire family and keep a clean house, and cook dinner everyday, BUT I kept falling asleep after I would put Kaylee down at 8pm!

Now, finally, after 5 whole months of motherhood I feel like I have figured out how to juggle everything and not be completely exhausted. Although, knowing babies, in a week her schedule will change or she will start teething and I will be back to square one. For now I am basking in feeling like I rock at this mom thing.

Thursday, November 15, 2012

Crafting In Winter

As the weather cools (although it was 70 degrees today it should cool down and start raining this weekend) I always feel the need to start crafting. It seems I start all these wintery crafts around November, but store them away when spring comes around which leaves me with half finished projects for the following November. I just can't get myself to stay indoors and knit when the weather is nice. A few weeks ago I went to the closet and pulled out all my crafts from last year. Now that Kaylee naps a little better and goes to bed earlier I am able to have a little alone time in which I can work on my winter projects. In just the past two weeks I finished knitting a stroller blanket for Kaylee (which was almost finished so I had very little left to do) and I finished sewing a floor blanket that I meant to finish before she was born. I am currently in the middle of making Kaylee's stocking since she needs one to match the rest of the family's stockings. I hate the shorter days and the rain, but I love crafting.

Any other crafty cysters? What are your favorite winter crafts?

Sunday, November 11, 2012

Guest Blogger- Cindy

I am pleased to introduce my first CF mommy blogger, Cindy! Cindy is from the popular blog, being cindy {baldwin}. She is also the creator of the CF Blogroll which features dozens of CF bloggers. Cindy is a 24 year old cyster who is currently 22 weeks pregnant with her daughter! She has overcome so many challenges to become a mother and I am thrilled that her dream of being a mommy will come true this spring!

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 was diagnosed with CF at 6 months old, after two months of being very sick and nearly dying from malnutrition caused by an electrolyte imbalance. After my first two years of life, though, my health leveled out and I was a really healthy kid. I didn't start really experiencing CF lung issues until I hit high school and started losing sleep! Winters became a tough time for me, and I always seemed to be sick with one thing or another. I would use oral antibiotics frequently and usually have one admission a year for a "tune-up." My junior year of high school, I got mono and was very sick with that for more than a year (we didn't even get the diagnosis of mono for ten months). I ended up with fibromyalgia and chronic fatigue syndrome as a result of the mono, so I have very few energy reserves and have to be very careful to get enough sleep and not overexert or else I end up immediately sick. My CF has been very unstable for the last few years, and I've been in and out of the hospital frequently, but I've been incredibly blessed this year to start Kalydeco which has made an ENORMOUS difference in my life—including giving me the boost I needed to finally get 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 came from a big family (the oldest of six) and always wanted LOTS of kids. It wasn't until I was a teenager that I learned that CF pregnancy and motherhood can be difficult and even life-threatening. It was pretty crushing news at the time, since I used to tell everyone I wanted ten kids, including a set of twins! I eventually came to terms with the fact that I wouldn't be able to have the large family I wanted, but I still hoped to be able to have at least one or two kids. When I started dating my husband and we got more serious, we had a lot of conversations about the "serious" ramifications of CF, including having kids. He is also from a family of six, and also wanted lots of kids. For the first few years of our marriage my health was unstable enough that we weren't sure pursuing pregnancy was a good idea, but we did eventually decide that we felt comfortable with it. However, our plan has always been to only have one pregnancy. With the way that Kalydeco is changing my life, we've started floating the idea of a possible later pregnancy, but that is still a huge "if". If we decide not to try another pregnancy when our little girl is a few years old, we will adopt.
TTC can be a difficult journey for many CF women as I believe it was for you, tell us about your ttc journey.
Tough!!! We waited for two and a half years for my health to stabilize before we started TTC, which was really hard in and of itself, and made it even harder when it became clear that I had serious fertility problems. I always knew I had a high chance of fertility issues, since I never had regular periods before I got married. About 6 months into our TTC journey, my hormone levels were tested and they were so low they were almost in the range of menopause—at age 23! It took us about 18 months to get pregnant.
If you needed fertility treatments please tell us a little about the process. How did you decide you needed intervention? What treatments did you receive?
I was sure that I would need fertility treatment, and actually had talked about it a lot with my doctor at the time and even set up a time to begin Clomid. However, my husband and I ended up moving very unexpectedly and I wasn't able to go through with the Clomid because of insurance changes. Ultimately, I was able to get pregnant after three months on Kalydeco. My doctors and I have theorized that the medication removed enough of the CF stress on my body that my hormone levels were able to normalize a little (however, I still needed supplemental progesterone to maintain the pregnancy).
What were some of your biggest fears regarding the pregnancy itself? So far have those fears been warranted?
My #1 fear was that pregnancy would take a toll on my health that I would never be able to recover from. I've always felt very strongly called to be a mother, but my priority has always been to be able to be around for my child(ren) as long as I possibly can. If my husband and I had not ultimately felt that that would be possible even with the physical demands of pregnancy, we would have adopted instead. However, this pregnancy has gone a million times better than I ever expected! So far, my lung function has actually gone UP a little bit (we'll see where it is now in another two weeks!), and I've been perfectly healthy. Because of the way my body handles stress (not well), I'm certain that for me, the effortlessness of this pregnancy has been because of Kalydeco. Now I am just hoping that I can make it through cold and flu season without getting anything—that will be the real test!
How do you feel your pregnancy is different than a non-CF pregnancy?
The biggest thing is that I have to be so careful all the time. Just like in regular CF life, I have to be much more careful about the germs I'm exposed to, especially as we head into cold and flu season. Also, because I already had chronic fatigue and existing energy issues, I've had to be very careful to make sure that I get even more sleep and rest than normal (a pretty ridiculous amount!). Especially in the first trimester, I've had even fewer reserves than normal, and have run a lot of low-grade fevers and so forth when I've pushed myself too hard. Also, for me at least, CF complicates some of the normal issues of pregnancy. For instance, I have a lot of CF digestive & intestinal problems, which have been exacerbated by pregnancy. I also had GERD previous to pregnancy, so as you can imagine, dealing with reflux has been even more of a problem as the baby gets bigger and bigger!
What are your doctors doing in order to ensure your pregnancy is healthy (more regular appointments, change meds, etc)?
My CF doctors have up to this point still been seeing me every 3 months. However, after my next appointment (in 2 weeks) we'll switch to every 2 months, just to make sure that I'm well monitored in the last stages of pregnancy. They also have encouraged me to come in any time I feel like I need it. In addition, I'm being monitored closely by a regular OB/Gyn and a team of perinatologists. From now on, I will have monthly visits with both and monthly ultrasounds. Toward the end of the pregnancy, my visits will increase and I'll have weekly or bi-weekly NSTs to make sure everything is going well with baby.
What are some of your concerns about mothering and CF?
Because I know that I tend to get run down very easily and get sick whenever I lose sleep or push myself too hard, I'm very nervous about the first few months! I'm trying to put as many things in place during pregnancy as I can to make those newborn months go smoothly—for instance, in the months before the baby comes I plan to cook and freeze a lot of meals ahead of time so that I don't have to worry about cooking for awhile when the baby is first here. Also, although I hope to breastfeed some, we will be supplementing with formula so that I am not so overtaxed and so that my husband can help with night feedings. I know these things will be important for me, personally, because of the huge link in my CF between sleep loss and getting sick.
If you could give advice to a CF women you is ttc or is pregnant what would you tell them?
Do your research! I am the kind of person who likes to know what is going on with everything, so I did a lot of research on both fertility issues and pregnancy. Research during the TTC period helped me to understand very quickly what was going on with my body, and to be able to assist my doctor in figuring out what the best way to address the situation was. Because my fertility problems were so complicated, it would have taken a LOT more time and frustration to rely only on the standard doctor's office tests. Research before and during pregnancy has helped me to be forewarned about a lot of issues I've faced and know the best ways to deal with them, as well as in preparing for childbirth and the first few months with a newborn.

Cindy gave birth to Kate on March 25, 2013 (a week late!). She was 9lbs 8oz and 21 inches long!

Saturday, November 10, 2012

Fellow CF Mothers

When I first decided that maybe, just maybe I could be a mom some day I didn't know where to turn for support. I wanted to be a mom, but didn't know if I could be a mom. I didn't even want to bring it up to my CF doctor until I knew that it was even in the realm of possibilities. I decided to search the web to see if women with CF were in fact having children. I found two blogs. One was a woman who had lung function over 100%. The other was a very old blog that was no longer updated. I was relieved to know that at least two women out there were successful in having children, but I was discouraged because I felt no women with CF like me had children. Over the years I kept looking to blogs and forums to find a woman who could give me the inspiration I needed to allow myself to feel that maybe there was a chance I would be a mom someday.

When I was to a point in my life that I was ready to have children I still couldn't find any CF women that I could really relate to. After I already started ttc I finally found a sole blogger who had a somewhat similar CF experience as I did. Since then I have found other mothers through cfmothers who I can relate to. One of the problems when trying to find someone with a similar CF story as you, is that we are all so radically different. Different energy levels, lung stability, weight issues, diabetes, osteoporosis, bacteria cultures,  resistance to medication. We can often feel alone even when talking to other cysters.

I am soooo excited to start a series of guest bloggers who are as different from one another as cysters can be, but are all pregnant or mothering cysters!! Some of the cysters dealt with infertility, with diabetes, or infertility treatments. Some cysters have more than one baby and we even have a mom with twins! The first guest blogger will appear tomorrow afternoon and I can't wait for you to "meet" her.

**If you have CF and are pregnant, a mother, or even in the ttc journey and want to share your story I would LOVE LOVE LOVE to hear from you! If you have a blog I would be more than happy to link it to my site so you can get more bloggy traffic or you can opt out of blog linking. If you don't have a blog no problem! I really want women with CF to hear different success (or soon to be success) stories so that even if they can't relate to my story they may find a cyster they can relate to. If you are interested let me know by leaving a comment below or e-mail me InhalingHopeCF@gmail (dot) com. <---Of course put a . where I said (dot) just trying to avoid spammers. Any guest blogger will have 10 questions to pick and choose from you can share as much or as little as you want.

Check back tomorrow for my very first guest blogger!!!!