Wednesday, July 18, 2012

How CF Effects Motherhood Part 1

I wish I could say CF has no effect on motherhood, but as we all know CF is a huge part of our lives and so of course it isn't going to quietly step aside for the birth of a child. Luckily, most of the ways it negatively impacts life has no negative effect on Kaylee although I am sure the dynamics keep changing as the child grows older. Here are the 4 biggest annoyances with CF while trying to mother.

So all new moms are tired and sleep deprived, it comes with the territory. The thing mothers don't tell you when they warn you that you will never sleep again is that you get a mothering high which makes you able to function off basically no sleep. I swear if for any other reason I didn't get more than 2 hours sleep at a time for a month I would be dead. Seriously, I would die! Somehow motherhood makes you a little bit like superwoman and I am still alive. Okay, back too CF and lack of sleep. So everyone says sleep when baby sleeps. Great advice except you have to live life too. You have to eat (and you know we really need to eat!) and you need to shower (trust me on this) and you need to stare at your baby for several hours a day (because hell you made something pretty amazing so why not!). These are all things ALL women deal with, but tag on a few hours of treatments and pretty much every hour your baby is asleep you are busy! I would get at least 2 more naps a day if it wasn't for treatments. *yawn*


I can't tell you how many times I sat down to a meal, popped my enzymes, was about to eat and little princess decided she was pretty hungry as well. I have no idea the negative effects of taking enzymes and then not eating, but as of now I am still alive and my intestines haven't died off so I guess it is okay. I now take half a dose when I start a meal and then if it seems like I can eat most of it before little princess needs me I take the rest.


This is my least favorite. So when I was pregnant many CF women told me their babies didn't even flinch when they coughed since they were so used to it in the womb. Not so, with little Kaylee. Her little startle reflex got a lot of use during the first few weeks. Eventually she wouldn't startle when she was on me and coughed, but would startle if someone else was holding her. My uneducated theory is that she could feel my large pre-cough inhale and prepared for it, and when others were holding her it caught her by complete surprise. Now at 5 weeks for the most part she ignores my cough. I even do my treatments with her nearby, but every once in a while when she is sleeping on me and I cough she will let out a little whine or startle. Poor baby!


I know I had a fourth when I started writing this, but somehow it escaped me. I blame my forgetfulness on the sleep deprivation...

Click  here for Part 2  and here for Part 3 here.


  1. Wow, I never would have even thought about the enzyme thing! And so sad about the startling. :( That sounds miserable! How are you feeling with all the sleep loss? That is my #1 fear. I get very sick when I lose sleep!

    1. The startling breaks my heart :/

      Since I was a kid when I was rundown or overtired I would run low grade fevers. I think it was my body's way of making me slow down. I really believe the new mom high (it is like nothing else!) gets you through the first 2 weeks because I rarely felt tired despite not sleeping much at all. Now that the high has worn off I do find that when we have a really rough night and I wasn't able to nap I run a low grade fever until I can get a nap. Luckily, I do no get CF sick when I am overtired.

      I think you said that even if you were to breastfeed you would formula supplement and honestly you will get so much more sleep doing that. I love breastfeeding, but it does mean I get significantly less sleep since my husband obviously can't help. If your hubby can take even 1/2 the night feedings it will make a huge difference on the amount of sleep you will get.

    2. Yeah, I run those low-grade fevers too!!! But if I keep losing sleep or don't make up enough sleep, then I just get more and more run down and end up getting CF-sick.

      Yes, I would definitely supplement. My husband is actually really against me breastfeeding at all... he is super worried about the drain on my body. If I did do it, I think the most I would do would be every other feeding, etc. When I'm pregnant ;) I want to talk with a lactation consultant about my options, etc. If I CAN do some without hurting me or the baby (either from nasty meds or low quality milk because I am so severely PI), I would like to. And yeah, sleep is one of the reasons I wouldn't do it 100%. I have always needed a TON of sleep but since getting mono in high school, sleep loss is an immediate downhill spiral for me in a big way. So I know finding any way possible to get some sleep with a newborn will be crucial.

    3. I hate the low grade fevers! As much as I love breastfeeding it is not conducive to sleep, but I think talking to a lactation consultant is a great idea!

      Also, you potentially could gave a good sleeper. I have the mellowest baby I know, but she loves to eat!! Out of all my mommy friends she by far wakes the most in the night. So here is to hoping you have a good sleeper!

  2. Congratulations on the birth of Kaylee!!! I have been following this blog for some time now!

    All of the effects on motherhood that you explained are truly interesting. My wife and I are expecting our first child. I am the CFer in the family so I am sure we may have some similar effects but it will be on the father :)

    Come and checkout my blog to read our pregnancy journey!

    1. Hey John!
      Thanks for following my blog! Congrats on your little one. When will he/she be arriving? I am very interested in seeing the dynamics of a family with a daddy CFer! I will be sure to stop by your blog!

  3. Hi there. I know this is an old post now but I still wanted to comment. Would love to hear more about how you deal with the CF and motherhood as the baby gets older. I hear you with the startling. My little one is the same way. It's like he know what's coming when I inhale. What drives me the most nuts is when I've just got him to sleep and I have a huge cough that I can't hold in and totally wake him up!
    Also I hear you with the first few weeks and no sleep. My baby had bad jaundice so I was having to pump to supplement the breast milk and he was feeding every two hours. It was like feed pump repeat. A few times I had the pump on my boobs and the nebulizer in my mouth trying to do double duty! I was thinking what has my life come to! LOL

  4. I will absolutely keep updating how CF effects motherhood for me! I absolutely HATE when I cough and wake her up! It is the worst and it happens on a semi-regular basis :/ Darn cough!

    Feeding every 2 hours is a lot of work so I can imagine pumping and feeding would keep you super busy! How is the little guy doing? How is it juggling two kids?