Monday, April 12, 2010

My Life as a Mom with CF

1:30 AM: I'm awakened by Morgan's cries. As I sleepily stumble toward her room, I stub my toe on the oxygen compressor that sits just outside my bedroom doorway. I'm not using oxygen tonight. In fact, I haven't needed it for a few weeks. But I find comfort in knowing it's there. Just in case.

As I peek into her bedroom, I see Morgan looking through the bars of her crib, waiting. She smiles when she sees me. She knows what's coming. I'll pick her up out of her crib and sing to her as we return to my bedroom and crawl back into bed. Together.

She falls asleep almost immediately. This is our routine. She goes to bed in her crib, but at some point she ends up next to me in bed. She sleeps so well next to me. I could stay up with her, rock her for a while, then put her back down in her crib. But that would take twenty, maybe thirty minutes. Then she'd be awake in a few hours and I'd have to do it all again. I need the sleep. When my body is tired it's more susceptible, an easy target for infection. And I can't afford to get sick.

As I lay there watching her sleep next to me, listening to her slow, easy breaths, I think again of how much I cherish these moments. I silently pray that I'll be able to hold her like this for years and years to come. That I'll be there for her first day of school, her first date, her wedding. And maybe even someday, for the birth of her own child.

7:37 AM: I've hit the snooze button one too many times. I'm feeling extra tired this morning. I guess that extra half-mile I walked yesterday caught up to me. I'm hoping my PFT numbers will be up at my upcoming clinic appointment, so I've been pushing myself lately. The extra few minutes of sleep felt great, but now I'm running late.

Among other things, I need to do my treatments, feed and change the baby, and take a shower. I don't have time for everything. I choose to forego the shower again today. I put my makeup on while I do my TOBI, as the baby nurses with a blanket over her head. (I keep her covered to prevent her from inhaling the antibiotic. I had second thoughts about continuing to nurse during my TOBI months, but after a lot of questions and research, we're still breastfeeding.)

I don't have time to do the VEST, so I throw the PEP in my purse. I'll do it at work on one of my breaks.

8:39 AM: We're out the door. I didn't have time to make a decent breakfast, so I grabbed some pop tarts and a banana to eat in the car. I've learned better than to skip breakfast altogether. My body needs the calories. I don't usually have a problem maintaining my weight, but my new exercise routine and the extra calories my body expends by breastfeeding have made it more if an issue lately.

8:50 AM: I kiss Morgan good-bye as I drop her off for day care. I notice one of the babysitter's kids has stayed home sick. I immediately start to worry about Morgan catching whatever he's got. I'm also concerned about what that will mean for me. I then chide myself for thinking that way. What kind of mother is more concerned about her own health than that of her baby's? But I know that although her immune system is still immature, it has more of a fighting chance than mine does. I can't feel guilty about that. Morgan needs me to be healthy.

9:00 AM to 12:30 PM: WORK. Working with the public is difficult for me sometimes. I can't count the number of times a day I use Purell hand sanitizer. And I've cleaned my work station with Lysol wipes twice already.

12:30 PM: I quickly drive up to the babysitter's house to nurse Morgan. Still concerned about the little boy who stayed home sick, I feel her forehead several times. Of course she's not running a fever. Chances are she'll be just fine. I worry too much.

I only have a few minutes to play on the floor with Morgan before I have to get lunch for myself then get back to work.

1:30 PM to 5:20 PM: WORK again. I find myself counting down the hours until I go home. I realize that I was going to fit a PEP treatment in at some point today. I didn't.

5:30 PM: I pick Morgan up from the babysitter and am happy to see the "sick" little one playing basketball with his brothers. Apparently he's feeling better.

5:45 PM: Once I get home, I take 20 minutes to nurse Morgan and just relax. This is one of my very favorite parts of the day. Again, I find myself wishing that I could quit my job and just be home. I'm so grateful to have a job, and I really enjoy it most of the time. But even on the very best days, my job doesn't hold a candle next to these moments in the quiet of my own home. And although it's not a physically taxing job, it wears me out sometimes.

6:15 PM: Adam puts Morgan in the stroller and we take a quick walk around the neighborhood. It's nice to get out as a family, and the fresh air feels great! The slight chill in the air causes me to cough, and I like it. It's good therapy. It makes me feel a little better about skipping that treatment earlier today.

6:40 PM: I attempt to tidy up the kitchen as I cook dinner. Morgan scoots around the kitchen in her walker as Dixie follows her closely, quickly devouring the cheerios that are left behind.

7:00 PM: Dinner is on the table. (Coffee table, that is. We don't sit at a family dinner table. Some people find that very odd.)  I alternate between giving Morgan a bite of her sweet potatoes and myself a few bites of my own dinner.

7:20 PM: Adam offers to play with Morgan while I shower. Showering is HEAVEN.

7:40 PM: Now it's Morgan's turn to bathe. She loves taking baths and doesn't want to get out.

8:00 PM: After nursing again, I give Morgan a couple ounces of formula with some vitamin/flouride drops. It's the easiest way to get her to take them. Plus, that extra little bit helps top her tummy off so she can (hopefully) sleep better.

Morgan loves having her teeth brushed. She knows that after brushing her teeth she'll get to turn off the bathroom light and we'll sit down to read. "How do I love you, let me count the ways..."  I can recite the entire book by memory. We've read it every night for two or three months now. It's Morgan's favorite.

8:15 PM: Morgan is asleep in my arms. I'm told that rocking her to sleep will spoil her. I don't believe it's possible to spoil a baby with love. I let her sleep there for about ten minutes before I gently set her in her crib.

8:30 PM: I fold some laundry while Adam and I discuss our day. These moments together are nice. This whole "alone" thing is getting pretty hard to come by these days.

8:50 PM: I start the treadmill. I've been alternating between that and an exercise DVD with different walking exercises. I'm hoping to walk a couple miles tonight. I really want to get my lungs working. Then I plan to do my VEST or have Adam do some CPT while I do my nebulized treatments.

9:03 PM: Three-quarters of a mile into my walk, Morgan starts crying. Adam tries to calm her in her crib, but she just screams harder. She's been that way the past few weeks, wanting--demanding-- Mom. Adam rocks her, she screams. Adam walks around the house with her in his arms, she screams. Adam bounces her, she screams. I step off the treadmill and take her, she stops crying.

9:35 PM: I've rocked Morgan back to sleep. As I set her in her crib she wakes up. I gently rub her tummy and tell her "shhh". She closes her eyes, but I know she's not sleeping soundly yet.

9:50 PM: I've given up on the rest of my walk. I'll try again tomorrow. I've just finished Pulmozyme and started TOBI when I hear cries coming from Morgan's bedroom. Again, Adam attempts to put her back to sleep. Again, she is having none of it. Adam paces with a crying baby in his arms for several minutes before I give in and take her. She sits in my lap, playing with and chewing on the nebulizer tubes, while I finish doing my TOBI. Eventually she falls asleep in my lap.

10:35 PM: Morgan wakes up again as I set her in her crib.

10: 59 PM: Morgan is still awake. Adam feels bad because he hasn't been able to help much tonight. It's not his fault. Morgan has been especially difficult at night for the past few weeks. I haven't done my VEST yet and I'm tired. I need to get to bed. Shylee is coming tomorrow, and adding a four year old to the mix means I'll be even busier over the next few days.

11:37 PM: Morgan is FINALLY asleep in her crib. I still haven't done my VEST.

11:55 PM: I crawl into bed, feeling exhausted and a little guilty. This guilty feeling is familiar to me. Not every day is like today. Most days it's easier for me to take care of myself and fulfill the needs of my husband and child--both physical and emotional. Then again, some days are harder and I find myself giving in completely, only doing the bare minimum as far as my health. It's a constant struggle. What's more important: taking care of my baby's needs right now, or taking care of myself to ensure I'm there for her later on? They're both VERY important, but it's hard to find a good balance between the two.

I know it's only a matter of time before Morgan wakes up, so I try to relax and go to sleep. Tomorrow is another day.

Tomorrow, I will do better.


  1. I honestly don't know how you do it. It's difficult for me and I'm a stay at home mom. I find I'm always cleaning... probably because me and Lil are here all day to mess the place up so it constantly has to be picked up. I'm usually cleaning at night while I'm supposed to be doing treatments.

  2. I don't have a kid (obviously), but I so understand that horrible feeling of "which is more important - my health, or this other crucial thing?" That is always very hard for me.

    Do you have any kind of sling or baby wrap? I bet you could pop Morgan into a sling while you walked on the treadmill, if she's being super mama's girl.....

  3. Misha,
    Cleaning is usually the thing that gets neglected most. I wish I could do better, but not doing the dishes doesn't cause me the same amount of guilt. ;)

    I do have a baby carrier and I regularly "wear" Morgan. In fact, I often exercise with her, which Adam thinks is quite hilarious and REALLY adds to the workout! But it seems like when I push my workout to the very end of the day, I'm already a little tired and don't feel up to packing around the extra (almost) 20 pounds. I'm also paranoid about falling on the treadmill (I'm certainly not known for my grace) and landing on her. I imagine the terrible things the belt would do to her little face and body... So I'm a lot more apt to wear her when I work out to a DVD.

  4. Girl you are oneeee strong cookie!! I have a hard enough time managing my time with CF, pharmacy school, and my husband. But you have a child that needs all of your attention! You are amazing and Morgan is lucky to have a mother that loves her as much as you! :)


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