Being a Mom with CF

Warning: Post ahead is not all rainbows and sunshine. It's reality.

Being a mom with CF is hard. Being a mom is hard. Being a mom and having a full time job is hard. Putting CF on top of those things makes it even more difficult. I'll admit, I haven't been 100% with my treatments for the last few months. At the end of my pregnancy I was so tired and uncomfortable. And now, I'm just tired! There have been evenings where I skip my second treatment to get to be a little earlier and at the time, I think that's okay. Sleep is hard to come by with a toddler and a newborn, so I try to take advantage, but it sucks that I have to skip a breathing treatment to do it.

I've been back at work for only two weeks now and I just texted my CF doctor about beginning oral antibiotics. Anyone with CF knows the defeat you feel when you have to "call in the big guns". Luckily for me, those "big guns" are still oral antibiotics and not IVs, but it still sucks. I feel like CF is winning and that I'm losing.

A week ago I didn't feel the greatest. I was having some sinus drainage along with a sore throat. But with snow one day and 60-70 degree temperatures a few days later, I chalked it up to the crazy weather and maybe allergies. Everyone in our house just seemed a little extra snotty, so I didn't think it was a big deal. But when I woke up and it hurt to breathe this morning, that's when I knew it wasn't just crazy weather or allergies. My lungs are not happy with whatever has been hanging around over the last week.

So now's the big debate - what to do? The typical antibiotic I go on when feeling this way is Cipro which is not the best for a nursing mother because it could be transferred to baby through my milk....or at least that's what I think I remember from when Anna was a baby. With her, she slept longer stretches at night, so I could wait until the medication wasn't at it's strongest point and then nurse her. While at work, I pumped and dumped and she was given bottles of extra frozen milk from previous weeks.

This time around, Calvin still wakes up every three hours at night to nurse, so I'm not sure how that's going to work with the Cipro. After doing some of my own research online (LactMed) and talking with other CF mothers, it seems like the Cipro is strongest 3-4 hours after taking a dose. I think I can swing it by continuing to nurse and then giving a bottle of previously pumped milk during the 3-4 hour post-dosage time. I'll also look into giving Calvin some probiotics to help keep his tummy happy while he's exposed to some extra medicine. Continuing to nurse him is really important to me. He's doing so well nursing and I'm not going to let this bump in the road stop that. I feel like nursing my kids is one thing that my body has been able to do right, so it's going to take a lot to get me to stop. If I have to be hooked up to the pump extra over the next 10-14 days, then so be it.

As of right now, I'm still waiting to hear back from my doctor, but I'm planning on starting the Cipro asap-- hopefully tonight or tomorrow morning. I know I need it before this gets any worse. My plan for the weekend is to rest as much as possible while trying to complete my Master's assignments for the semester (since we're busy the next two weekends).

Life With Two Kids

Calvin is just over two weeks old and I feel like he's already growing right before my eyes!

This kid loves to sleep on his belly (don't worry, we never leave him unattended)

The first week home, Calvin was so content and relaxed. He loved tummy time and it would often put him to sleep. He ate about every two hours, sometimes 3-4 hours overnight and was very easy going. Around 10 days or so, we hit a rough patch where he got really gassy and fussy in the evenings, sometimes being awake, uncomfortable and sometimes crying for hours. I was getting a bit worried that we were going to have a colicky baby on our hands, but right around two weeks old, it stopped. Just in case, we stocked up on gripe water and I made sure to burp him extra during and after feeds to help try to ease some gas. Thankfully, the last few evenings have been better....but not the overnights.

In typical newborn fashion, Calvin's been getting his days and nights mixed up. He sleeps a lot during the day, having maybe only an hour or so of awake time, and then he wants to be awake late in the evenings or even in the middle of the night. There have been a couple nights when he's been wide awake in the wee hours of the morning when I am so tired.

I definitely forgot how exhausting it can be to have a newborn at home! But man, those baby snuggles make it well worth it!! This little guy loves to be cuddled! Between feeding and changing his diaper at least every two hours, it's hard to get things done around the house, but we're adjusting.

Calvin's first trip to Menards, 4 days old

Anna has really taken to her role has big sister, especially over the last few days. When we first brought Calvin home, she was kind of indifferent to him being here. But once she realized the habits and demeanor of a newborn, she quickly learned to get excited about the little things like when he lifts his head really high during tummy time, when he smiles (even if it's just in his sleep) and when he's awake with his eyes open (she wants to take a picture every time).

She's great about helping out which has been so nice! She loves to be responsible for putting his pacifier in when he's crying or it falls out, she likes to pick out his outfit for the day or jammies, and has even helped change a couple diapers.

Tim and I are adjusting to our new roles as well. It's still weird to think we have two kids. The other day I was talking about going somewhere "with the kids"....it sounded so different, but so good! Anna's been learning how to be patient when she wants me to do something when I'm feeding Calvin. She's also learning that Daddy is pretty awesome at doing things with her, too. With Tim back at work, I am happy to say that I've been able to successfully get out of the house with both kids more than once - swim class when Calvin was a week old, and, of course, a Target run. :)

The first few days after having Calvin home, I wanted to be up and moving - back to normal. I forgot how much I needed to let my body recover. Monday after he was born, we took Anna to school, ran some errands and took Calvin to the doctor. On Tuesday, I felt like I got hit by a truck. I had to remind myself that my body went through a huge ordeal of childbirth and that it was going to take time to feel "normal" again. Now, about 2.5 weeks later, I'm starting to feel like a normal human being again. Calvin's nights are pretty inconsistent, so I'm learning how to survive off of broken sleep, and I'll admit that we spend a lot of time cuddling on the couch, watching TV (currently watching lots & lots of Forensic Files).

This is how we spend a lot of our time during the day :)

Overall, the last 2.5 weeks have flown by! Life as a family of four just fits. I love the way everything has been going and I'm so excited for this new chapter in our lives.

The whole family, even Archie got in on this one!

One Year Old!

Anna,
You are one now! We had your first birthday party on Saturday and I'd say it was a success even though you were way too tired to even enjoy your cake. :)

Its absolutely crazy how fast your first year of life has gone by! I feel like I could go on and on talking about everything that's happened over the last year, but I'm going to try a different method today.

Favorite things to do:

• Walk everywhere, all the time (except in the grass)
• Push your shopping cart that Daddy made you around the house
• Carry anything (especially clothes) around the house with you while you walk
• Go outside
• "Color" with crayons and sidewalk chalk
• Wear sunglasses

Abilities/Talents:

• Your receptive language is amazing! You're starting to understand simple directions and you're usually good about following them.
• You also know what many objects/actions are and will get/do them when asked.
• You know several animal sounds - doggy, kitty, duck, cow, bear
• You're starting to point to things and trying to say them. Just today you kept pointing at your balloons and saying 'buh'
• You consistently sign more, please, eat, book, and wave for bye-bye/ni-night

You don't like:

• When things are taken away from you or being told no
• Being held/cuddled as much, unless its bedtime
• Being in your car seat for long periods of time
• Getting your diaper changed

Favorite foods:

• Cheese!
• Baked beans
• Peanut butter on toast
• Bananas

The amount you have changed this year is amazing! Although we've had a few bumps in the road, being your mommy has been the most wonderful gift! I cannot wait to watch you grow up, continue to learn, and play with you. You are one of the happiest kids I know and you bring so much joy to our family! Here's to the next year being even more fun than the first! We love you so much baby girl!!!

Summer

Wrote this last week & forgot to post, oops! :)

This summer is flying by! Sadly, I'll have to report back to work in just under a month, and to top it off, we're starting an hour earlier this year. But until then, I plan to soak up every minute with my growing baby almost one year old! We've had our fair share of lazy days mixed with busy, fun days this summer.

Anna and I have gone on many walks, stopped at the park numerous times, sang the Itsy Bitsy Spider and Wheels on the Bus (among others) more times than I can count, read many books, gone swimming, played with sidewalk chalk, gone to the zoo, and visited friends & family. Having the summers off being a mom is going to be the best!

Health-wise, I've been feeling much better! I just finished up a round of Cayston which always leaves me feeling good. I have my clinic appointment next week, so I really hope the numbers reflect how I'm feeling. Even though I haven't exercised as much as I probably could/should have, my lungs are feeling clear. And best of all, I haven't had any episodes of hemoptysis since the beginning of June! Yay! I still have no idea why all of those episodes happened, but I'm so glad they've stopped and I hope they stay away for good!

Life After Baby

The other day I was trying to remember what I did with all of my time before we had Anna, and I had no idea! It's amazing that such a little person can drastically change our lives so much, but it's so amazing. Before she was born, I was 'wife', 'friend', 'teacher'...but now I'm all of those roles plus, my favorite, mom.
I used to run. I used to read. I used to go out with other teachers after work. Do I miss those things sometimes? Of course, but I know that the day will come when Anna's able to play independently, away from me and not needing constant attention, and I'll look back and miss these days of snuggling, rocking to sleep and baby-wearing. So right now I'll gladly trade in the running gear for sweat pants and burp rags; trade the sappy adult love stories for Dr. Seuss and children's books; and trade girls night out for an early morning snuggle with my little baby. Unfortunately these days are numbered and I plan to cherish them. This is our life now, as a cute little family of three, and I couldn't have asked for anything more perfect.

A Day in the Life of a CF Mommy

After rereading my previous post, I realized that I trailed off and didn't go in depth of what its like day-to-day as a CF mommy. So here's a peek into a typical work day for me:

5:00am - Wake up & take a shower

5:20 - Make and pack lunch, set up pumping parts for later....only if Anna isn't awake

5:30 - Get Anna changed, dressed and fed

6:00 - Pump while watching Anna while Tim gets ready

6:30 - Say 'bye' to my baby then do my treatments

7:10 - Clean nebs and pump parts, eat breakfast, pack lunch, pack pump and empty bottles, brush teeth, get dressed

7:45 - Go to work

8:00 - Pump at work

8:25 - Get last minute things ready for class, set out breakfast for students

8:40 - Students come in & the day begins :)

11:00 - Assistant watches the class for recess so I can pump (and neb Cayston if its an "on'' month)

11:30 - Class bathroom break & get ready for lunch

12:00 - Lunch

12:30 - Teach

1:00 - Plan time (most days) = pump time

1:30: Teach

3:30 - Kids are gone, time to plan and prep for the next days/week

4:30/5:00 - Go home - clean pump parts, bottles, do dishes, etc. OR try to get treatments done by 5:30.

5:30 - Anna & Tim come home! Nurse Anna :)

6:00 - Treatments if they didn't get done earlier, or cuddle/play with my baby! :)

Anna plays with her toys on the floor next to me while I'm doing my Vest

7:30 - Nurse then cuddle and play...and probably fall asleep on the couch; don't forget the bath if it's bath night

9:30 - Nurse, put Anna to bed and crash in my bed for the night

Then do it all again the next day!

I absolutely love the life of a mommy! Adding CF on top of mommy-ing, nursing and teaching can be a lot some days, but I'm learning to manage my time pretty well. And being the social, busy people we are, we usually are going somewhere or seeing someone one day of the weekend, so I really look forward to days off work and lazy weekends with my precious little one. Can't wait for summer break!

The BEST part of my day :-)

The Life of a CF Mommy

Just nebbing Cayston while baby-wearing (Anna ~ one month)

My entire life I've dreamt of being a mommy, and I cannot tell you how amazing it feels to live out that dream each and every day! It really never crossed my mind that I couldn't/wouldn't be a mother because of my CF, and I'm very glad my disease hasn't held me back. With that said, it can sometimes be challenging working full time, taking care of an infant and taking care of myself...but I remind myself that this is normal & many people do it everyday. :) My biggest key to success is time management- thankfully that has always been one of my strong points.

Nursing while at clinic :-) ~9/25/14

The first week or two, after Anna was born, was probably the most difficult with keeping up with my treatments. Luckily my lung function was stable at the end of my pregnancy, so I felt really good lung-wise after delivery. I'll admit, though, I probably only did a handful of my treatments in those first two weeks because I just wanted to spend time snuggling my brand new baby. But one day, Tim finally called me out on it and I've only missed one treatment since.



CF mams & their babies :-)

For the last few years, my main motivation to getting/keeping myself healthy was to get pregnant. Now that Anna is finally here, I can't throw my health away! My motivation just has to adjust - I want and need to be the healthiest version of myself, for as long as I possibly can,  for my family. Treatments are not optional. I hope that I can show Anna that even though her Mommy has CF, I don't let it define who I am as a person or the way I live my life.

Our most recent picture together ~ 10/8/14

One Month Old

 

Dear Anna (aka: pumpkin, peanut, baby, baby girl, sweetie, big girl, etc),
I cannot believe you are already one month old! This has been the fastest month of our lives, and the absolute best one! Daddy and I feel like you were just born, but at the same time, like you've been with us forever. Parenting has come so natural to both of us and we couldn't be happier. So many people told us, before you were born, how crazy our life was going to be once you arrived, but "crazy" is definitely not a word I would use to describe the last month. I'd use words like: amazing, fulfilling, calm...it just feels right. You are the perfect fit to our little family.

 

Over the last couple of weeks, you've found you voice...and by that, I mean your cry. Thankfully you still don't cry very often, but you've let out some hardy screams a few times...especially when you're getting lotion on after a bath and when you've absolutely had enough tummy time. :) It's been fascinating watching you grow and become more alert each day. You definitely recognize Mommy and Daddy's voices and give us the most beautiful gummy grins when we talk to you. You're now able to focus on people and objects and track them with your head and eyes. You've started watching your toys that hang above you on your play mat, and you love to stare at the pictures in books when I read to you.

You're growing so big and strong! You've taken to breastfeeding like a champ and I often call you a 'little piggy' as you're quickly gulping like we're starving you... I promise, I feed you every two hours! Your first three weeks, you were an excellent sleeper which is why I think your Dad and I haven't felt 'crazy' because we've been able to get decent sleep, too. Typically you nursed between 9-10pm and sleep until 2-2:30 when you grunt away in your Rock and Play until I lift you out. Then after you're changed and fed, you usually slept until 5:30-6, where you'd wake again just by grunting and squirming. Once that feeding is done, sometimes you'll stay awake, but sometimes you'll go right back to sleep which is when I'm able to do treatments, shower and eat before you need to eat again in two hours.
At three weeks old, we gave you your second bottle (first was during your first week and it was a disaster) and you did so well! We've been trying to give you a bottle every couple days, just so you'll get used to it for when you go to Grandma's.

Then at about 3.5 weeks, you decided to switch up your eating and sleeping routine...I'm guessing you were going through a growth spurt. You started nursing for longer (20 minutes) and waking more often during the night. You started getting a little fussy in the evenings and fighting sleep. Now, right at 4 weeks, you're back to nursing for 10-15 minutes, but you're still getting up every two-three hours during the night, and it takes a bit more cuddles and rocking (and a pacifier) before you'll finally give in to sleep.

8.30.14 - Aunt Elise holding Alayna and Nana holding you

Daddy and I also survived your first projectile vomit episode, Friday night (4 weeks). You finished eating and were sleeping propped up in the crook of my arm for a while, when out of no where (no warning, no sound) you projectiled everywhere! All over you, me and the couch. I just sat there frozen, stunned - I had no idea what to do! Then you let out a second round! Finally, I looked at your Dad and said, "Can you help me?!" We were both just sitting there waiting for the other to do something. So Daddy grabbed you and cleaned you up while I went to change my clothes. Of course you had no idea what happened and went straight back to sleep when Daddy was changing you!
I was very concerned. I got out the thermometer and we took your temperature, but of course it was normal. I had no idea why you just threw up everywhere, so I asked a few of my fellow CF mommy friends who all reassured me it was normal for babies to do that once in a while and gave me a couple pointers. A little while later you woke up starving and ate really well. I was worried about putting you down and probably burped you a little too much over the next couple feedings, but you kept everything down aside from a couple little normal spits. Thankfully you haven't done that since, and now you're back to eating for only 10-15mins. My guess is that you over-ate because we were used to doing 20min feedings the days prior. Now if we can only go back to sleeping longer at night...

Archie and Ozzie are starting to get used to you, too. To my surprise, over the last week, Ozzie has really become interested in you. Whenever you fuss or cry if we're not holding you, Ozzie will run over to you and just stare. I think he's going to become quite protective of you. Archie still isn't completely comfortable with you and usually keeps his distance, but every once in a while he'll come sniff you while we're holding you.

The First Two Weeks

I fully intended writing after Anna's first week, but time blew by us so fast! I can't believe that our little girl has quickly passed the two-week old mark! It feels like yesterday that I was still pregnant, but at the same time, it feels like we've had her forever (in a good way). :-)

First night at home

Anna had to spend about 12 hours in the NICU after she was born because she was having a hard time regulating her breathing. She was breathing too quickly to suck, swallow and breathe, so they wanted to keep an eye on her. She also had a chest x-ray which showed a little bit of fluid in her right lung. We were able to go see her after she'd been up there for a few hours and I was also able to feed her. She was being pretty stubborn and wouldn't open her mouth, she had it shut tight, but eventually she got a few good sucks in. To this day, she closes her mouth very tight & it's very hard to get in there....even her pediatrician could barely get in there, haha.

Cuddles with Daddy in the hospital

Around 6:30pm, they brought her to our room for her to stay the rest of the time. She had a second x-ray which was much better than the first, she had stabilized her breathing and low blood sugars, so she was good to go. Our first night in the hospital was exhausting, my lack of sleep was catching up with me, but we made it through. The next day my parents and brothers came to visit before we were discharged around 5pm.

I'm going home!

When we got home, Tim went outside to take care of some things in the yard, and Anna & I went into her room to rock in her rocking chair. When Tim came in the house, it was super quiet and he couldn't find us. He checked every room but hers, and when he turned around and saw us, he said, "Where's my baby?" It was so funny! I assured him that I still had her and that we were just nursing. :)

Adorable

I'd have to say that I think Tim and I are adjusting to parenthood very well. This is something we have looked forward to for years and I feel like we welcomed it with open arms. We've also been blessed with a beautiful, easy-going baby! Anna is just the sweetest. She only fusses and grunts (occasionally it'll be a full cry) when she needs something - diaper change, to be fed or to be burped....that's usually about it. *Knock-on-wood, she has been an excellent sleeper, especially at night. We're also both getting the hang of breastfeeding. It's quite the learning experience, but we're getting better each day. Again, I am fascinated that my body is able to provide for her - its incredible.

First trip to Target & Hobby Lobby

The first week at home was so quick, but it was excellent. Tim was able to get a week off of work and it was so nice having him home. The first full day we were home, we had several visitors. A couple people from work stopped by to see Anna, as well as Tim's parents and their spouses.

My coworkers started back at school on the 14th, so Anna & I showed our
support by wearing owls, our school mascot.

We did much more in the first week than I ever thought we'd do with a newborn, but I'm very glad we did. It's not fun being stuck in the house all the time, so each day we tried to get out to do something. We took Anna to Target and Hobby Lobby at just a few days old; we went out of town to lunch and to a couple stores; Anna had her first doctor appointment; we visited my school where she was able to meet many staff members; and my favorite day was when we took her to meet her great, great-grandma who she is named after.

Anna & Anna, 100 years apart - priceless

On Thursday, at six days old, we headed an hour north where most of Tim's family lives so Anna could meet the wonderful woman she's named after - Tim's great-grandma, Anna Danner, who we all just call Danner. Danner was SO excited to meet one of her great, great-granddaughters! It was so sweet, and absolutely priceless, to see her holding Anna. Danner said she wanted to put Anna in her pocket and take her home. :)

After our visit with Danner, and great-aunt Shirley, we headed over to (great) Grandma Dorothy's house. This is Tim's grandma and the one who will be taking care of Anna when I have to go back to work. While we were at Dorothy's, Anna was able to meet several of her cousins, her Aunt Elise, and a few great aunts & uncles, too. She was immediately swarmed when we brought her in the door which just showed me how much love the family has for her already!

Anna being swarmed by her loving cousins :)

Anna had her first doctor appointment at four days old. She weighed 6lbs 4oz, which was just 3oz less than her birth weight. Her pediatrician, who we love, was very pleased with that. He was also absolutely amazed that I have CF and that I am the first CF parent he's ever met. He couldn't believe that I was healthy enough to carry her, and he is also curious how CF may (or may not) affect my breast milk. He said he's going to try to find any research on it, but we both agreed it'll probably be difficult since CFers having children is such a 'new' thing.

"How am I one week old already??"

On Monday, the 18th, Tim had to go back to work, so Anna and I had our first day together, just the two of us & we decided to stay in our PJs all day. We sent Daddy a nice gummy smiling picture to help him get through the day, and as soon as he walked in the door that evening he said, "where's my baby?" and came over to see her...it was so cute.

Poor little thing had a gunky eye, so I put some breast milk
on it and it was cleared up the next day - amazing!

Anna had a follow-up doctor appointment at 12 days old, which went very well. She was a whopping 6lbs 11oz! This means she had gained 7oz in just over a week and had surpassed her birth weight! I was so proud of her! The doctor was very pleased and again, surprised that I wasn't supplementing at all...take that, CF!

This is the BEST!

Over this passed weekend, Linda and Roger came to meet Anna and hang out with us for a few days. We had so much fun together and I'm so glad they were finally able to come down. On Saturday, we even went down to meet Alayna and see the girls together for the first time. On the way back we stopped at Scheels where Anna got her picture taken with a bear and even caught a fish. :)

Uncle Roger & his peanut

Love this!

At two weeks old, Anna is very laid-back. She nurses about every two hours during the day and every 3-4 hours at night. She's producing plenty of wet and poopy diapers, which have been a lovely yellow-orange color. She loves to cuddle, but also does a great job sleeping when she's put down. We

do fifteen minutes a day of tummy-time, per doctors orders, and she is so strong! Anna loves to have her hands by her face constantly, which can get a little tricky when trying to latch on to nurse, but thankfully hasn't scratched herself too bad. I think she can recognize mommy & daddy's voices because she gives us big gummy smiles when she's awake and we're talking to her. She also loves to stare at us, and will turn her head to follow our face or voice if we're up close. We've given her a few sponge baths over the two weeks. The first one she didn't care for too much, but the next ones she did very well. She was very calm while Daddy was pouring the water over her head and body and just seemed to be taking it all in - I hope this means she'll like bath time & water. She lost her umbilical cord at 10 days old, so we gave her her first real bath shortly after. She wasn't so sure about it at first, but didn't do too bad.