Thursday, December 6, 2012

How CF Effects Motherhood Part 2

Before becoming a CF mom I was always nervous about how CF would play a role in motherhood. Would it be manageable, would it make me less of a mother, would it be no big deal? Well, motherhood is always changing because babies change dramatically in a very short period of time. Last time I wrote about CF effecting motherhood (Click here for Part 1 and here for part 3) Kaylee was only a month old. Things like the startle reflex no longer apply to an *almost* six month old. So I decided to update you on how CF effects motherhood with a slightly older baby.

When Kaylee was little I would wake an hour before her to get her treatments in. Now Kaylee wakes around 5:30-6:30 in the morning and waking up at 4:30 to do treatments just isn't happening! I now try to fit my treatments in our morning routine which goes something like this:

  • Kaylee wakes which instantly wakes me. I sometimes let her crawl around me in bed (we have guard rails) to buy me a few minutes. I bath her and then shower. I then go to the living room where I sit her on her blanket with some toys and sit across the room (I don't want her breathing in my albuterol, but I can still see/get to her easily). She plays while I do my first nebs. She then sits in her high chair while I eat breakfast. After breakfast she is ready for a nap. Once she is in bed I do the rest of my treatments., put on makeup, etc. 
Evenings my husband used to watch Kaylee, but he now works until really late 5 nights a week so my evening routine is as follows:
  • Again I have her sit and play until I finish my entire treatment! Usually, when I get to Hypertonic Saline I put her in my lap and she plays with toys in my lap instead of her blanket cause she gets lonely and a little salt water never hurt anyone. After my treatments we start her nighttime routine and she goes to bed.
This leads me to my next obstacle...

I feel guilty that the whole time between wake up and Kaylee's first nap I am doing treatments, bathing, eating. I feel like I am not able to enjoy her cause I have other stuff I need to do. It makes me feel bad for Kaylee and angry at CF. The upside is she spent a lot of time on her tummy during my treatments and so she got strong pretty quickly. Now she spends lots of time sitting and can transition from sitting to an *almost* crawl position. I guess while I am doing treatments she is busy building muscles to hit developmental milestones. Even as I say this, I still feel guilty!!

This is a tough one, but it doesn't have to be. The weather has been pretty crummy so I am no longer jogging or even walking much despite having a nice jogging stroller. I need to go to the gym and just haven't. I don't have much of an excuse except I never want to leave my baby. I need a kick in the butt (feel free to post some "get your stuff together" comments, I need it!) because I know exercising means I will be away from her for an hour a day, but will be alive and well for significantly longer. 

Weight Gain
I lost a lot of weight in the last three months. I think nursing is playing into this. When I was at work I was really good about snacking because I had designated breaks and so I would remember to eat. Now that I am home all the time I completely forget to snack which greatly effects my caloric intake.

I am sure in a few months everything will change again. I have no idea how I will do treatments when Kaylee learns to crawl! I will be sure to give you an update.


  1. I really look forward to your posts about motherhood and CF. These are things I never gave much thought to before, but now I spend a lot of time thinking about them. I can't wait to hear further updates.

    And while I won't yell at you about exercise ;), I will suggest that maybe if you get the exercise in daily it will MAKE you hungrier thus forcing you to eat more? I could be wrong though!

  2. I will be sure to update. I am seriously scared of treatment time when Kaylee can crawl. There will be no way to keep her away from me which means I can't keep her from inhaling my neb meds. Eeek.

    I think you are right about exercising. I just need to stop being a lazy cyster and do it!

  3. I LOVE reading your blog and I am a 32 yr old cyster and avid exerciser! Been married for 9 years!:) reading your blog gave me hope that I may be able to have kids still. (My lung function is a little lower than yours.) please make the time for exercise:) I know I don't have kids yet but I do know how important exercise is for us cfers. You are a wonderful mother from what I can tell and I can't imagine how hard it must be to make yourself the priority but I need to see that you can do that so that you will be around as long as possible:) You are an inspiration to me:)

    1. Thank you so much for reading my blog :) I am so hopeful you will be a CF mommy someday. Please keep me updated on your journey! Thank you for the push to exercise. You were much nicer about it than I deserved! My husband and I are devising a plan to make sure I get enough time to exercise because as you said I want to be around as long as possible!

  4. Hey friend!!! Thanks for sharing this! Since I work full time I do my morning treatment when Alayna is asleep. This includes my HTS. Question did you ever ask the doctor about doing nebs near Kaylee??? Just curious as to the answer. Night treatment I take Alayna with me to do my treatment and then Maria finally takes a shower which is at midnight. I do not do any nebs at that time. She stares at me and looks at me like ok Daddy its time for us to sit together. She sits in this little chair thing and just focuses on me :) It is so adorable.

    As for the excersing thing............I am in the same boat as you. Since I work full time the last thing that crosses my mind is giving up 30 mins to exercise since I do not see my girl for well over 9 hours :( But I know that it has to change so I can spend 90 years with her!!! Remember that post that I had about a little motivation? Just think of those two individuals in it and how fortunate we truly are!!!

    Lastly, I cannot wait for this disease to be cured!!! One day as CF parents we will not have to have these worries of lost time and the other stress that comes with having this disease. Until then we will keep kicking its butt :)

    1. Hey John!
      I never asked about nebbing (is that a word???) near Kaylee. I just assumed, but I have no idea!

      From the stories you tell I love how in love Alayna is with you! That is so cute!!

      Maybe we can hold each other accountable for exercise! It is so tough to get in, but so crucial for our health.