Sunday, January 27, 2013

Then and Now

I remember the days when my belly was swollen so large it was hard to bend over and I could no longer see my toes. Spending hours researching the perfect baby accessories. The quiet calm of yoga Wednesday nights. Rocking in the glider rubbing my belly picturing a tiny little person snuggled up in the crib. The relaxing bubble baths with candles glowing around the tub, Curling up to take a nice afternoon nap knowing baby would be joining us within the coming days.

Fast forward 7 1/2 month....

Scrambling to pick up anything that has dropped on the floor lest my daughter gets to it and decides it is her snack. Proof reading my blog posts while trying to pay my bills on the phone and eat my lunch in hopes to accomplish at least a few things before nap time is over. Loudly singing Baby Baluga in the car to keep the little one satisfied (what is this radio you speak of?), rocking in the glider while milk pours down my stomach and praying very hard that baby will finally fall asleep, having to go number two with a baby trying to climb up your legs cause they just really can't wait to be held, playing shower curtain peek-a-boo to buy enough time to wash the suds out of your hair, and wondering when you will ever get a decent nap again.

Oh motherhood, it is beautiful, awe inspiring, magical, humbling, exhausting, and the most selfless job that ever existed. I wouldn't trade it for the world.

Saturday, January 26, 2013

How CF Effects Motherhood Part 3

You can find How CF Effects Motherhood Part 1 here and Part 2 here.

All of you mothers with babies older than Kaylee are going to be laughing at me saying, "Told you so!" on this one...

Crawling and Such
My little Peanut is growing up in hyper speed. A little before 7 months my little tiny baby learned how to crawl! It was such an exciting accomplishment! But crawling instantly turned into pulling up on everything: door hinges, tables, couches, the dishwasher door while I try to unload it, wall corners, etc. Then at 7.5 months she started standing by herself!! At first I was so beyond proud! She was hitting milestones super early and doesn't seem to be stopping and then reality sunk in...

Doing treatments with a mobile baby is literally a circus act. I start nebbing, she decides to crawl out of the room. I stop, run and get her, give her something distracting to play with.  I start nebbing again and she decides to stand up on our brick fireplace. I stop nebbing, snatch her away from her near death experience and start over. This continues over and over. Usually the last 10 minutes she stands up holding onto me and watches me neb and fake coughs whenever I have a nice good cough. That part is pretty cute except that having someone clinging onto you for dear life while you cough out a lung is less than ideal.

We bought a jumperoo in hopes to keep her contained and some days it works magically for part of my treatment (her attention span isn't that long) and other days she wants nothing to do with it. My husband has been awesome in helping out, but his crazy work schedule leaves me alone with baby often and I have no choice, but to have Kaylee with me during treatments. And my coughing wakes her up so I can't just wait until she is in bed.

Needless to say that although my treatments are still getting done, they are no where near as efficient or as productive as they were pre-crawling. I am sure it gets harder before it gets easier!

Monday, January 21, 2013

Lemony Fresh

Last month I posted about natural cleaning products that are void of nasty chemicals that are bad for CF infected lungs (or anyone's lungs). One of the cleaning products I use a lot is plain old vinegar. The other day I was using this plain old vinegar to clean my kitchen when I realized how much I hate the smell of vinegar. It smells really gross and even though once it dries the smell disappears, I don't like having to smell it at all! I thought about adding essential oils, but the only essential oil I have is the one I use for my cloth diaper pail and I didn't want my clean house to remind me of my daughter's diapers. So I turned to the internet and I am so excited to share this little tip I found (because I am a total crunchy nerd and am sure none of you really care, but I am telling you anyway). You can infuse vinegar with herbs or citrus. I want to try a bunch of different variations, but considering it is citrus season and I have a big basket full of mandarins, lemons, limes, and oranges from friend's yards I figured I would try infusing with citrus first.

1. Peel two mandarins (or any other citrus fruit)
2. Eat said fruit (my favorite step)
3. Put fruit peels in a glass jar. (You can use plastic, but I hate plastic in general so I went with glass)
4. Cover peel with vinegar.
5. Let sit for 2 weeks
6. drain the vinegar into spray bottle and top off with new vinegar.
7. Clean away!

So I am in the infusing phase and have yet to see if the smell of citrus makes the vinegar less offensive to the olfactory system, but I am so excited to have a use to my citrus rinds (besides composting) that I almost don't even care if it works that well or not.

I tried both lemon and mandarin so we will see which one smells better.

I thought the mandarin vinegar looked pretty sitting in the sun.

Saturday, January 19, 2013

Hospital Confusion

Yesterday  morning was a little crazy since I promised myself I would go swimming  before my 10:30 PFT appointment. I allotted myself 25 minutes of swimming time. When I got in the pool I was seriously struggling. I just did NOT want to swim. I did my first set of laps and just couldn't get into it. I peeked at the clock hoping I only had a few minutes left and to my horror realized it had only been 5 minutes. I decided not to look at the clock again until I put in some serious swim time. The next time I looked at the clock I was horrified to see that I swam 30 minutes and was now running late. The good news is that my lungs can't be too bad if I could do my normal swim routine without struggling.

I made it to the doctor just a few minutes late and did my PFTs. It wasn't my usual respiratory therapist since it wasn't a CF clinic day and he made me do them 5 times. 5!! In clinic we only do them 3 times so I kept expecting to be done only to be told to do them again. So I blew a 49%. I like to stay 50 and above, but 49% isn't something that makes me freak out. I have no idea what my doctor is going to say on Tuesday as far as if I should get a PICC or not.

49-50% is my all time non-exercise high meaning when I am not active at all it is a pretty good number. Considering I haven't exercised in oh, about 7 months I would say I am in a non-exercise streak. When I exercise my all time high is around 54-56%. I personally would prefer to keep swimming and try to get my numbers up that way. I just finished Bactrim so I don't feel I have a horrible infection and so I wonder how much a PICC without swimming would do for my lungs. I was hoping my PFTs would give me a clear answer- I would have really low numbers or really high numbers, but here I am stuck right on the border of good and bad. I guess I have to wait till Tuesday to see my fate!

Wednesday, January 16, 2013

Bactrim and IVs

I started Bactrim last week after feeling a little extra junky and wheezy for a while now. I go to the doctor Friday to do a lung function test to see if my PFTs are back to baseline. If not, I will be getting a PICC line put in for a nice course of IV antibiotics. I am hoping my numbers are okay because I don't want to give up swimming after starting up again and because I have a feeling a PICC with a 7 month old will be an interesting challenge. I feel better, but I am not sure I feel good enough to be back at baseline. Wish me luck this Friday!!

Sunday, January 13, 2013

A Day As A Mother

The other day my husband had a friend over. He came with his 21 year old girlfriend. They are young and in love and living life to the fullest. They work hard all day and spend their evenings eating exotic foods at various restaurants around the city, dancing the weekend away at the newest clubs, flirting wildly with each other while getting tipsy on drinks that were made much too strong, wandering local museums, and driving to the ocean to play in the freezing cold waves. Their life reminds me of the life my husband I had before kids.

So we were sitting around the dinner table enjoying a meal made by our friends and having great conversation (Kaylee joined in the conversation as well!) when all of the sudden my husband's friend looks at his girlfriends and says,
"We...(he then looks at me) are dying to ask you something!"
His girlfriend is smiling and nodding wildly,
"okaaay..." I say a little unsure I want to answer the question that is coming...
"You have been home for the last 7 months, right?"
I think I know where this is going.
The girlfriend interrupts, "Are you bored being home aaaaallll day every day?"
The boyfriend takes over the conversation again, "Yeah, I know babies are a lot of work, but don't you crave getting out of the house? Don't you feel confined being in the same place day in and day out?"

As someone who spends their days full of new foods, new people, new experiences I can understand how they would view my life at home every day as dull. How do I explain that being a stay at home mom is more than just babysitting, changing diapers, and doing chores? How do I explain that motherhood is...

Locking eyes with the little soul you carried and dreamed of for nine months. Feeling the warmth of a newborn babe sleeping on your chest. Listening to the soft puff of her nursing while you nourish her body and soul all at the same time. The first smile that stretches across her face when she looks into your eyes. The miracle of watching her grow bigger and stronger and smarter everyday. Watching her roll for the first time and the look in her eyes when she realizes she can MOVE. The first belly laugh and the feeling of pride that you brought her joy. The hints of your spouse in her looks, movements, expressions. The disbelief of how she got so independent so fast. The blinding frustration of a baby that refuses to sleep. Gazing at your sleeping baby and forgetting how frustrated you were 10 minutes ago and falling even more in love with her. The smell of her skin straight from the bath. Watching her crawl and discover her new world. Holding your breath as you watch her fall. The sheer agony of hearing her cries. Watching her figure out her emotions- excitement  sadness, frustration, pride. The sense that time is going much too fast. The deep, breathless, all consuming love you have for a child so very small.

Yes, my high heels are gathering dust in the closet, I haven't felt the bass in my bones for over a year, the ocean waves haven't crashed against my ankles recently, and yet my days feel very full.

Saturday, January 12, 2013

7 Months

Dear Kay Bug,
You are 7 months old today!! Each day you look more and more like a little girl and less and less like my little baby. You learned to crawl this month and you adore exploring your world, making my life all the more exciting and hectic! You also got your first tooth which your father lovingly named Mr. Sharpy, cause watch out, he sure is sharp! We are still awaiting the arrival of Mrs. Sharpy, she seems to be just about to break through. You started giving us hugs which melt my heart a hundred times over. You come over and lay your head on us, body completely still, before scurrying off to play again. I hope you never lose your snuggly side. You also started eating food which is always fun and messy! You seem to love bananas and oatmeal. You also love feeding yourself little bits of banana by scooping them up with your always loved using your thumbs!

Thing You Love: When you first wake up in the morning the very first thing you love to do is try to grab your sleeping papi's head full of curls. Oh boy, you love those curls something fierce. My mission is to pull you from bed before you can get a solid handful because for some reason your papi doesn't like to be woken up that way.

You love pulling yourself up into a standing position on everything and anything including all things dangerous like the door hinge. You are also overly confident and think you can let go only to find yourself in a pile on the floor.

This may embarrass you when you are older, but once you become a mother you will know why I had to include it, you love nursing! If you see me topless for any reason (getting dressed, coming out of the shower, etc.) you NEED to latch even of only for a few seconds. It reminds me to slow down and connect with you even when I am distracted by my own routine.

Things You dislike: Yesterday we went to a playgroup where a few of the kids were older boys (as in one and two year olds) that liked to scream loudly and run wildly around the house. You are accustomed to playing with babies your own age who are much less mobile and much less noisy. You kept looking at me like, "Save me" so I made an excuse and we quickly left. We got in the car I think we both let out a sigh of relief. Wild screaming boys aren't really your thing and you know what, little one, they aren't really my thing either. 

Friday, January 11, 2013

You Mean I Need To Shave My Legs??

When I openly admitted that I had miserably failed at exercising since becoming a mother you all were much too kind in encouraging me to start again. I seriously expected (and deserved) someone to tell me that I needed to suck it up, grow up, get off my lazy derriere and do SOMETHING, ANYTHING!! Well, your gentle push actually had a great effect. I actually thought a lot about you wonderful readers who told me I needed to exercise for myself and for my daughter. To you wonderful cysters and fibros who commented in encouragement,  THANK YOU!

I started swimming again on Thursday. I was nervous about getting in the pool again, I was nervous I wouldn't be able to even finish a lap, I was nervous I would cough up a lung right into the pool water, I was nervous to leave my baby. Well, I did finish a lap, several actually, I did not hack out a lung, and I even enjoyed a little me time to think while doing laps.

Every time I try to make an excuse not to go I tell myself that I am doing it because I want to see my little Kay bug graduate from college!

Thursday, January 10, 2013

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.

Wednesday, January 9, 2013

Insurance Hell

I don't believe in hell, but if I did I think it would be similar to fighting with insurance companies for eternity. Fighting with insurance companies isn't a new thing for me, I remember countless times being at work on my 15 minute break or my 30 minute lunch break sitting on hold only to hang up before anyone could help me because my break was over. I would get so aggravated that I used up my only opportunity to run to the restroom or eat dealing with what was often the insurance companies mistakes. I hated dealing with them then, but dealing with insurance companies while caring for a baby is a whole new ballgame!

I need not even explain the details to my fellow cysters and fibros, you already know. You too have been there countless times. I will mention that despite having this insurance for about 8 years they claimed at one point during my conversation with them that I never did in fact have insurance through them. Quite generous to pay the medical bills of a patient for 8 years that never had insurance, don't you think? Sigh.

The part that makes me the most angry is that for three days I started making calls when Kaylee went down for her first nap (at 8am) and was on the phone for her entire nap and continued to be on the phone all through her play time and finally through her second nap. I am now quite talented at changing diapers, doing laundry, and eating all while fighting for medication I need to survive. I also learned to entertain a baby with goofy faces, dancing wildly to the music playing while on hold, rolling balls, and dangling toys, once again, while talking to insurance reps. While being distracted on the phone little Kaylee ended up bumping her head on the coffee table. She wasn't hurt badly and although she cried hard it wasn't for long. I am pretty sure this is what put me over the edge. Dealing with incompetent people at the expense of your child is enough to piss the most mellow person off. So the last thing I learned was that screaming into a pillow helps relieve some anger and that my baby thought it was I did it a few more times for good measure.