9 Months

Dear Kaylee,

You are nine months old today. You have been outside of my body s long as you were inside my body. It seems strange to only have known you for nine months. It feels as if we have been together, mother and daughter, forever.

You follow simple directions now which is so amazing! You will throw the ball, put pieces in a puzzle when we point to the correct spot, you will put objects inside each other, when I say, "Kaylee, look at me" or "no no" you follow directions. It is amazing to see how much you understand about what we say already!

You are a dancing machine! You dance when you hear any type of music. You can be in the middle of crying, hear music, stop crying and dance away. Your love for dancing is shared by both Mommy and Papi so we love dancing right along with you.

Things You Dislike: You are much too busy exploring your world to take a break for a diaper change. The second I lay you on your back you flip over and crawl away. I have now mastered changing a diaper while you stand because it is the only way to keep you happy!

What I like About This Age: You love to mimic everything we do. You are such a little monkey and it entertains your Papi and I all day long. We have to be careful though because Papi said, "darn" the other day (although both mommy and Papi have been known to say words that are much less appropriate) and you repeated him perfectly.  

One thing that is challenging about this age is that you are alllll over the house. Treatment time has become very interesting as you repeatedly fly down the hall in a super speed crawl. When I retreive you it is only moments before you take off again. I love your independence (ha! to all the people that say "natural parenting" creates needy babies and you need to teach independence to your baby), but sometimes I wish you would independently play in the living room during treatment time!

New Words: You are finding your voice in the world and are learning to say some words. This month you have been saying, "num num" (food you like), "baby" (which you say about babies, but about adults sometimes too), "mom" (so weird to hear you call me mom at such a young age), and you have said, "bye" on occasion while waving. 

Baby Games

I remember holding Kaylee as a newborn, snuggling into her soft skin, breathing in the gentle baby smell and thinking, I don't want this to change; I want this forever. Now almost nine months later I think back to those precious newborn days and I look at the curious, silly, loving daughter I have today and I realize that this journey gets more fun the longer you are on it. Just this morning as I was trying to write this post Kaylee kept crawling behind the couch so I couldn't see her. I would call to her, "Donde esta Kaylee?" She would then come crawling out from behind the couch full speed with the biggest smile on her face only to stop, turn around,and do it again. Seriously, this mommy gig is way too fun!

Tree Bark

I love my husband for many reasons, but yesterday I added one more reason to my list. We were drinking our coffee and muffins, a tradition that started when my husband started working evenings. When he wakes up around 11:30 we have our morning coffee (mmmmm) and muffins as his breakfast and my morning snack. Kaylee joins us with her own little snack. While my husband was taking a bite of his muffin I noticed him studying my arm. He was looking at my arm quiet intensly and after another rather large bite he says casually, "You know your arm looks just like tree bark." I look down at my own arm and realize the layer upon layer of yellowy scabs resemble a tree truck with thick layers of bark. How he could look at the grotesqueness that I call an arm while enjoying breakfast is beyond me. If his arm was so covered in thick layers of scabs (made not of blood, but of the salt/water/protein mixture my arm is covered in) it looked like tree bark I would ask him to keep in covered until it healed to keep me from barking on a daily basis. Oh dear husband,  only you would not be disgusted by me in this hideous state!

Guest Blogger - Jennifer

I am excited to introduce my next CF mommy blogger, Jennifer, who is 39 years old and mother of two children. She has a daughter who is five and a son who is 10 months old. You  have to check out her wonderful blog, Montessori Beginnings especially if you have children. She does great educational and fun projects with her daughter that you will absolutely want to try with your own kids. Since Kaylee is just a little younger than her son I love getting inspiration from her and the activities she does with him (he even cleans his own tray after eating- how amazing is that!!! Talk about inspiring).

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 with CF sometime around 11 years old.  I was a super healthy kid but kept getting really bad sinus infections.  I was eventually sent for allergy tests and the technician suggested I get tested for CF.  My parents were shocked because back then the only images you would get of kids with CF (there were no adults!) were pretty dire.  Turns out that I did have CF but am pancreatic sufficient.  I think the diagnosis was mild CF.  My sister was later tested and she also has mild CF.  I suffered from bad sinuses and polyps and around 13 and had an operation to have them out as well as my adenoids.  The doctor ended up also taking out a whole sinus wall which was pretty traumatic at the time but since that day I have seriously never had another problem with my sinuses and the polyps never grew back.  Over the years I would have an average of about three chest infections a year which would be treated with oral antibiotics.  When first diagnosed I was doing physio every day but I found it didn’t make much difference so we stopped it.  Back then it was old school me lying on a stack of pillows and my mom pounding on me.

Jump ahead 20 years and CF had really just been a small annoyance in my life.  I would be going along like a normal person and then something would happen to remind me oh ya I do have CF.  I was a professional flute player for 11 years with a Symphony Orchestra and that did wonders to my lung function.  I was at 98% for all of that time.  Then I moved to England stopped playing the flute, got married and decided to have a baby.  That’s when things really changed with my CF.

Tell me a little bit about CF and your pregnancy. Was the pregnancy with your daughter similar to your pregnancy with your son?

I have to admit that with my first pregnancy I didn’t even really factor in my CF that much (young and stupid! Well not that young just stupid I guess!).  I knew that at some point I would have to take antibiotics but I thought I’ll just deal with that when it happens.  For both of my pregnancies I was super lucky in that I conceived on the first try.  Obviously I don’t have any issues with fertility.

With the first pregnancy I had been so healthy that I didn’t even have a CF clinic in England.  I ended up getting a chest infection really early on and the doctor gave me a super mild antibiotic.  Of course it did nothing and from then on I had really bad care.  I went from one doctor to another getting seriously no help.  One doctor actually told me to just breathe steam!! Another didn’t even believe I had CF!!! Finally after almost six months of feeling completely rotten I was able to connect with the CF clinic in London.  At my appointment I found out my lung function was at 63%!! I was shocked to say the least.  They called me a few days later with my lab results and I was growing not only my usual staph but also pseudomonas.  The doctor had booked me for admission the next day.  I stayed for two weeks and went on IV Ceftafatim.  They also convinced me to start pulmozyme.  After two weeks I was released but about three weeks later I was back.  The rest of my pregnancy was the same.  I could only stay healthy for about two to three weeks after the IVs. 

After the birth I decided to breast feed and continued to have chest issues.  When my daughter was four months old I was exhausted and decided to call it quits on the nursing and went on some super strong IVs.  That did the trick and I was back to my normal self until the next pregnancy.

 Although I tried to get super healthy before I got pregnant second time around I had about the exact same pregnancy troubles except for far better care.  I ended up being on oral antibiotics every month.  I could only go for two weeks before the infection would start to get out of control.  I guess my body just can’t handle pregnancy and fight off infection at the same time.  I was hell bent on breast feeding longer with my son and managed 7 months before I had to go on IV’s and I decided enough was enough.  My body needs a break now. 

                  

 Tell us a little bit about the birth of both you daughter and son. Did CF play a role in the delivery? How was recovery in terms of pain management when coughing and doing treatments?

For my first pregnancy I was scheduled for an induction 10 days before my due date because the doctors were concerned about the stress on my lungs. I ended up going into labour the day before which was really great.  The labour lasted 36 hours and I ended up having a recommended early epidural.  The doctors weren’t sure I would have enough energy to push when the time came if I had to go through all of the contractions.  When the time came to push I had a really difficult time and was passing out.  It ended up that my daughters shoulder was stuck so I had to have an episiotomy and they had to use the vacuum to pull her out.  She was fine but it was very traumatic for me and I ended up having to go to the ER to get stitches and fixed up.  I was on IVs all throughout the labour.  The recovery was long and painful as I had absolutely no bladder control and every time I coughed it was excruciating and I couldn’t hold anything in.  The coughing exacerbated things and it took much longer for me to heal. 

For my second pregnancy the doctors recommended another vaginal delivery as a C-section cuts through all the muscles you need to cough which would be much harder to recover from.  I was once again scheduled for induction 10 days early and was admitted a week before for IV’s to get into the best shape possible for the delivery.  My little guy once again decided to come two days before the induction but much, much faster.  Although I’d planned on having another epidural he came much too fast and they didn’t make it in time.  I had him naturally with no pain meds and boy was that insane!!  The pushing was super easy and he came out in two pushes.  I was so happy to know that I was able to give birth naturally and CF played no part at all in the delivery.  As there were no complications my recovery was so much easier and faster.  I continued my IV’s for the last few days as well as my treatments and then went home.  At that point my lungs were in great shape so coughing was not much of an issue.

Now that your daughter is a little older do you find that she asks questions about your CF and health? If so how do you explain your CF to your daughter?

Before I got pregnant with my son my daughter had absolutely no awareness of my CF.  She was four when I got pregnant and pretty soon it was obvious I was not my normal healthy self.  She was very aware of the coughing and I told her it was because of being pregnant. 

 Recently I was in the hospital for a week and she was very confused.  She asked me why I was in the hospital if I wasn’t having a baby.  I explained to her that I just got too sick and didn’t have enough energy to look after everyone so I needed to go to the hospital to take very strong medicine.  She knows that I do physio (my pipe) and that I take lots of pills but I really haven’t explained that I have CF yet and all that it entails.  I think it will be on a need to know basis at time goes on because the last thing a child needs is to have to worry about their mother.

If you could give advice to a CF women who is ttc or is pregnant what would you tell them?

I have found that every single person with CF has a different experience and this is no different in pregnancy.  I was very healthy before my pregnancies and had a terrible time during them yet other people who are more greatly affected by CF in general have great pregnancies.  So the only advice I would give would be to go with what is in your heart.  Being a mother is A LOT of work but I couldn’t imagine living my life without my children!  They are my heart.



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

Clinic And Arm Update

Today was supposed to be the day I got my PICC pulled or was given a new set of meds, but of course with the PICC pulling itself out and my skin falling off I went in PICC free and extremely nervous. My arm is looking worse, I didn't get to finish my IVs and I had no idea how my lungs were doing. I also had to go with my zombiesque arm out on the open. I tried to cover it last night for family dinner at my parents house since I didn't think people would want to look at it while eating. I will spare you the gory details, but it was so not a good idea.

Within five minutes my appointment was already looking grim. Somehow I lost 4lbs between last Monday and today. How is it even possible to lose 4lbs in 7 days? I don't usually have an issue gaining or maintaining weight so this baffled my mind. I was eating a lot all week as I was trying to gain weight which makes it so much more frustrating. I am down to a skeletal 114lbs from 125. I knew my doctor would try to convince me to stop nursing, but I really believe that in a few weeks I can gain most of the weight back. Nursing is too important for me not to succeed!

My PFTs were making me the most nervous since I had to stop my IV course five days early. With my left arm covered in open sores and my right arm too much scarred to access I knew a PICC was out and I just didn't know what we would do if my PFTs hadn't improved. Luckily, my PFTs were just 2% under my baseline. Once I can swim again (when my arm heals) I think I can get back to baseline.

Pretty much everyone that saw my arm made the most horrendous face and said something along the lines of, "Oh, that looks horrible!" One of the nurses said, "I can't even look at it!!", but then kept sneaking peeks at it. Thank goodness the doctor knew exactly what it was. He even had another CF doc come in to get a second opinion and they both said the same thing. I was given a prescription for topical and oral steroids. I am already on Bactrim so that will take care of any infection that may be brewing. I go back in two weeks and if it isn't better they are sending me to a wound specialist. How scary is that!? I seriously hope that it improves with the steroids because nursing, sleeping, even carrying my baby is so much more difficult when I can't use my left arm.

So it looks like I am over the worst of my sickness. I now have the aftermath to clean up (get my weight back and heal my arm), but I can finally see the light at the end of the tunnel.

Life with Kbug

I have been feeling sick, frustrated, and defeated lately, but I have a constant source of joy and light in my life: my family. So to give you a break from disgusting pictures of my dying arm and depressing blog entries I am bringing you a little glimpse of life with my Kbug!

• K can dance!! She just started dancing this week. Whenever she hears music of any kind she bounces up and down as fast as she can. It doesn't matter if it is a slow song she goes wild bouncing out of control. She is a dancing machine!
• Kay's new favorite word is "baby". She says it absolutely perfectly, but she isn't perfect on understanding what it means. We are working on it. She is also trying to say "mas" ("more" in Spanish), but it comes out more like Mo....m. She has never made the s sound and I think she just doesn't know what to do after the initial mo so it ends up sounding like a drawn out mom. She says it often at mealtime. That girl can eat!!
• Yesterday morning my husband, K, and I all woke up, but none of us felt like getting out of bed. Little Kaylee was sandwiched in the middle of us. She crawled over to my husband and layed her head on him (her version of a hug) then crawled to me and layed her head on me. Then back to my husband, then me, then my husband. She did this back and forth for several minutes. It was as if she didn't want to leave either one of us out. Love her!
• My mom came over yesterday and was asking her about what she ate for breakfast. She started listing foods that she may have had: bananas, oatmeal, blueberries. Kay listened to her list and then said "num nums" which is what she says when she is eating. It is amazing how much they understand even at such a young age.

The Wreckage

**Graphic Picture! Scroll down at your own risk***

***I promise I won't post too many more gross pics***

Yesterday morning I wasn't sure how much more my arm could take. My blisters were oozing through my bandages and I was sleeping with towels under my arm. Barf, I know! So when I went to get a dressing change and the nurse said my arm looked worse than before I thought I was going to cry. Then came even more bad news. She noticed it looked like the external part of the PICC was longer than it was supposed to be. Sure enough, it was supposed to be 8" and it was 16". I knew at that moment my PICC was coming out. She called my Dr and of course he told her to pull the PICC. Part of me was so relieved that my arm would finally get a chance to heal. Part of me was terrified for my lungs. When I got home and assessed the damage of my arm I realized that I am so grateful for the fact that my line came out because my arm looked horrendous.

Obviously, I feel super attractive at the moment!

Later in the evening I started to notice my forearm was starting to swell. I pulled out my PICC packet of potential problems and the symptoms seemed to point to a blood clot. At this point I was pretty freaked out. After all the pain and trouble with my skin I couldn't imagine a blood clot. And of course my skin was almost non-existent so I couldn't even imagine how they would do an ultrasound over the open sores. I called the on-call pulmonolgist who told me to try warm compresses and to call the doc in the morning. By 2am I woke up (because I was hungry actually- good sign that I am feeling better) and noticed my swelling was pretty much gone. I think the swelling in my upper arm was draining (because of gravity) to my lower arm which was causing the swelling. My arm was a little red, but it is also itchy and irritated. So for now I think my PICC troubles are over and I just have to hope my lungs received enough antibiotics to be okay and that my arm will heal...eventually.