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.

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?

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!

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!!!!

Open Letter To Friends With Babies

Dear Mommy Friends,

My daughter is approaching 5 months and to the shock and confusion of many of you my sweet daughter has never left my sight for more than 30 minutes while awake, she has never had a bottle, and has slept in my bed from the day I brought her home. My kind hearted friends, you try to tell me that I should teach Kaylee to drink from bottles so my husband can do some feedings. "You need alone time," "You could sleep while your husband does a feeding", "You could have your mom watch her for a few hours," some of you say. Many of you don't understand why I choose to bedshare. "Isn't it harder to sleep?" "Doesn't she wake more often?" Don't you want her to sleep through the night?" Many of you ask. You don't understand my lack of need for alone time, you don't understand why I feel no need to rush my daughter into being independent.

This is what you don't know my dear friends. When you spend your life believing that your biggest dream is completely and utterly unattainable and somehow magically that dream comes true, you never ever want to let it go. You spend every morning in awe that you achieved the impossible and you don't want to miss one second of living out your dreams.  I know many of you have wanted children your whole life and some of you struggled to conceive so you may have some idea why I feel the way I do. And yet it is so much more complicated than that. I know I was able to achieve my lifelong dream and I wake up everyday beyond grateful to have my daughter, but unlike you my friends, who still feel as if death is so far from reality that it never crosses your mind. I know that I stand much closer to my own demise than I would like.

I know I will likely leave my precious daughter much before either of us is ready. I know there is a chance I will miss her high school graduation, college graduation, her wedding day, her children. I want to spend as much time with her as I can while I am still healthy and very much alive. I want to ensure that my love is ingrained in her soul so that even though she will not remember these days she will remember the way I made her feel. I don't want my husband to give her a bottle even during the wee hours of the morning. I would rather her lay in my arms, feeling the softness of my skin against her skin, breathing the soft scent of my milk, my sleepiness. I want her to feel my hands stroking her hair and I want her drift to sleep to the sound of my heart. She will not remember nursing, but I hope when I pass she will still feel the warmth, love, and nourishment my body provided her. I don't want to go out shopping for the day while she stays with someone else. I want to laugh with her as she plays with her toys and makes her silly faces. I hope when I am gone she will remember the melody that the two of us made when we laughed together. I don't want to transition her to her crib, I would rather sleep with her in my bed,wrapped in my arms, dreaming side by side. I hope when she is older and I am gone she will feel the comfort my arms once provided her as she drifts off to sleep all the way until the sun comes up in the morning.

So dear friends, I know you have my best interest in my mind. I know you are looking out for me and want me to be happy. But you must understand that my daughter makes me happy and I know in my heart that what I am doing is what will bring me the most joy and peace in my life. I do not judge your shopping days away from baby, your alone time, date nights or that you are working hard to make sure baby doesn't disturb your sleep in the night, but our realities are so drastically different. And I appreciate your suggestions, but I don't feel like I am missing out on anything I will regret when my lungs give out and my body can no longer hold the little girl I spent my whole life waiting for.

You Just Can't Understand

Around the time I joined the mommy club many of my friends were joining too. We are all entering this new uncharted territory together and it is amazing to have old friends starting their journey as moms at the same time. Soon after I announced my pregnancy a few close friends that live by announced theirs as well. I was elated; how exciting to take walks together, to exchange our favorite brand of breast pads, to empathize with sleepless nights, to watch our babies interact, and experience one of life's greatest joys together. And yet...

It has become so apparent that my life is so vastly different than these dear friend's lives. When we were single we seemed very similar and even with the changes of marriage and pregnancy we seemed so much the same. We had similar careers and hobbies. You would think experiencing motherhood together would make it seem as if we could completely relate to one another and yet, we can't. 

It became apparent when I went to visit a dear friend and her 2 week old son. Kaylee was 3.5 months old and I was the veteran mom of the two of us. I went to help my new mom friend as we all know the weeks after a new baby are a fuzzy blur of awe, sleeplessness, confusion, and intense love. I said I would be there around 11:30. I spent the entire morning rushing around trying to get to her house on time. Between bathing the baby, myself, an hour of treatments that were interrupted by a much needed nap, trying to eat breakfast and later a snack, I made it to her house just a few minutes late. 

When I arrived she opened the door showered and with make-up on. Her house was completely spotless and she looked well rested. I was a little taken aback because when I had a two week old I remember being tired, the house being a mess, and showers were no longer the daily norm. "How are you doing?" I asked. She responded that she was doing great and that they had spent the morning in bed. In fact, she had just gotten up about 30 minutes prior to our arrival. There was a buzz from down the hall and she ran to get a load of laundry. I am pretty sure my jaw  and heart dropped at this point.

I felt like a failure. It had taken me all morning to get out of the house. My home was cluttered and I had a pile of laundry that needed to be done days ago. I should have my act together, I should be the one helping a poor new mom adjust to the demands of a new baby and yet I felt as if I might need her to come and help me out! Oh, my self esteem went down a few notches that day. And yet...

As I thought more about the stark contrast between the two of us later that evening I came to a few realizations. As a person with CF I will never be able to compare myself to nonCFer. And just as I will never measure up to someone that didn't have CF, someone without CF will never understand what it is like to be a CF mom. Here are some of the many reasons I should never compare myself to a non-CF mom:

• I will never be able to get up 30 minutes before someone's arrival because I have at least an hour of treatments to get done not to mention shower, dress, eat, and get the baby ready. So when someone shows up I may not look very rested because I have been up for hours getting ready for the day.
• I spend 2.5 hours a day hooked up to machines and coughing. Other women can spend this time cleaning, baking, or making themselves look pretty. Unless I want to ignore my child all day I will never have as much time to tidy up the house or myself as my nonCF counterparts.
• I may be a little extra tired because my body is already working harder just to breath so that lack of sleep and those night wakings are even harder on my body than that of a healthy mom.
• I need to eat and I need to eat a lot! Being a breastfeeding CFer means I need a lot of calories and so it may be okay for a nonCF mom to skip a meal here and there it just can't happen when you have CF.
• My life will never be like theirs. Like, motherhood my health is a full time job and I never get a day off or a vacation.

I need to change my attitude and look at how well I am doing as a CF mother. I need to remember that I am not the normal stay at home mom, but one that has a chronic condition that requires lots of time and energy. I need to be proud of myself and all I have been able to do despite CF. And yet, it is so hard on days like today, when I am still catching up on laundry, have yet to get dinner started, and need to run the dishwasher so I can load it with the dishes in the sink, to get a phone call from my fellow stay at home mom (of a 1 month old) saying she has been baking all day and wanted to drop off some baked goods. Sigh!

I Need Your Help

So I think the time has finally arrived that I need to call in backup. I hate to admit, after 13 months free of oral antibiotics and almost 3 (3!!!!!!) years free of IV antibiotics, that I am feeling my lungs slip into that place we all know too well. I feel tight (wheeze!) and am coughing at night (ugh!) and seem to taste my sputum (yuck!). I really want to treat this as soon as possible because I don't want to get to the place that I feel really bad and have trouble caring for my daughter. I still feel well enough that I don't need to nap and can get through the day, but I can tell that the rate I am going that I will be in trouble soon.

Normally I would call in an order for orals, but my doc made it pretty clear that when breastfeeding there were very few safe oral options and I would most likely need a PICC. Not so excited about getting a PICC since I am allergic to chloroprep, and pretty much every adhesive they have ever tried to use. That skin protective stuff, yeah, doesn't work for me. I end up with oozing yucky blisters that take months to completely heal. I am also not looking forward to having a long blue rope hanging out of my arm and dangling in arms reach of my daughter, who thinks everything is food! So here is where I need your help!

1. I am calling the doc tomorrow and want to know if any of you have taken orals while nursing for pseudo or staph. I am not allergic or resistant to anything and those are my only bugs. I am not willing to stop nursing so if there aren't any safe ones I will go for the PICC.
2. If you have had a reaction to PICC lines (which I know from my last post about it many of you do) what have you done about it. I know I am highly allergic to chloroprep and have yet to find an adhesive I am not allergic to. Any suggestions or things that worked for you?

Thanks :)