Saturday, April 21, 2018

Antibiotic Update

My nurse and I finally got into contact at about 5pm last night. She said that her and my doctor had discussed a couple options for me, keeping in mind that I want to continue breastfeeding. The first option was to begin Cipro, but they were completely against me nursing at all while on it for two weeks. This didn't appeal to me, but I understood where they were coming from. The second option was to try a different, not as strong, but breastfeeding-safe antibiotic called Cefdinir.

I went with option two. I'm a little nervous to try a new antibiotic, but hoping for the best. I'm really glad that I'll be able to continue nursing Calvin while on it. I'll be starting my first dose tonight. I'm hoping it'll be strong enough to kick whatever is hanging out in my lungs. Thankfully I haven't had anymore lung pain since yesterday morning (I think my treatments helped that), but I can definitely tell I'm more junky than usual.

Yep, putting in a Great Strides plug because it's true -- this is why we need a CURE for CF! Although I've been relatively stable over the last four years because of Kalydeco, chest infections still happen and antibiotics are necessary to maintain my lung function. If you'd like to help us find a cure for Cystic Fibrosis (so I never have to do treatments again!!), click here. :)

Friday, April 20, 2018

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).

Sunday, April 8, 2018

Calvin, Two Months

To my little man,
Oh how much you've grown and changed over this month. I am so glad that I was able to spend every single day with you over the last two months. Sadly, tomorrow I return to work, but luckily it's only for 7 weeks before we're back together for summer break.

As soon as you hit one month, your hair on top started falling out...but only on top and it happened so quickly. A couple weeks later, it started growing back and now you have brownish-red original hair in the back and darker brown peach fuzz growing in on top. Daddy would joke with me when your hair was falling out on top that I was taking it out and gluing it onto your eyebrows because they grew in as quickly as the top was falling out. Aside from your hair changes this month, you've also had a couple weeks of acne (which is now gone) and have been growing so much! Right after you turned one month old, I switched you into size one diapers and had to pack away most of your newborn clothes. You're now fully in 3 month clothes (and have even outgrown a few of them), although you have lots of t-shirt onsies that you can't wear yet, and probably won't, because it's been too cold.

Your little personality has started to form this month. You have distinct cries for things (hangry, tired, gassy, and just annoyed). You've also started smiling intentionally which is just adorable and you really want to talk. You move your mouth like you're trying to say something, but typically you just grunt. Every now and then a coo will slip out, and sometimes you try so hard to talk that you make yourself spit up!

Tummy time has become more active this month. You sleep less on your belly now because you move too much. You are a very busy little boy, on your back and belly. You've already worn out a line of hair on the back of your head because you move your head back and forth so much from looking around. When on your tummy, you really work your legs! A few times this month you've rolled over (accidentally), rolled off your tummy pillow, and even scooted yourself forward across the bed and your tummy mat by digging in with your toes and pushing yourself. You even almost launched yourself backwards out of your swing by pushing against the bottom with your legs & feet (you will now always be buckled!).

You're not just active when you're awake, but also when you're asleep. You are the noisiest sleeper I know!! You grunt so much and you're pretty restless - you move around a lot. I swaddle you every night otherwise you keep yourself awake by hitting yourself in the face and moving all the time. At six weeks old, I moved you into your bedroom in your rock n play overnight. The first night you went down around 10, woke at 1, 4 and 6:45. It was refreshing for me! After a couple days, I tried putting you in your crib overnight and you did great! We now only use the rock n play when we travel, but you don't sleep in it as well. We were out of town for a few days recently and you didn't sleep the best while we were gone. As soon as we got back home, you slept great in your crib and were back to your 10pm, 1am, 4am overnight schedule. Maybe that means you're a homebody, maybe that means that you just prefer to sleep flat on your back.

Sadly, I'm heading back to work tomorrow. Thankfully, we only have 7 weeks of school left. Daddy got a new job and is starting tomorrow, too. Since he'll be in town now, you'll be going to the babysitter with Anna. She's very excited that you guys are going together and I'm excited that you'll be so close. I'm sad that I'm going to miss out on snuggling you every day, but I know that you'll be well taken care of.

Likes: ceiling fans (especially when they move), when people talk to you, nursing, being held, looking around at everything, bath time & getting rinsed with the shower head, sleeping in the swing when I do my treatments, when Anna talks or sings to you

Dislike: Being in one spot for too long, not having human contact, when my treatments stop - you want out of the swing immediately
  • Random things I forgot to add in your one month blog post: 
    • you had your tongue tie clipped in the hospital before we brought you home 
    • when you were born, your cord was wrapped around your neck (didn't cause any problems)
    • bruised face => jaundice
      • since I only had to push three times and you came out so fast, your entire face was bruised for about a week or so. All of this bruising led to you being slightly jaundice, but because you were an excellent nurser, it went away quickly and on its own  
This month you celebrated your first Easter (you and Adler both had adorable outfits with suspenders), met more friends and family, went to your/my first CF appointment, and grew a ton. I can't wait to see how much you've really grown at your appointment next week. I hope this next month flies by because it'll mean I'm almost done with school for the year!

Update from two month appointment: Calvin is in the 43rd%ile for his weight at 11lbs 14oz. He's 33rd%il for his height at 22.8 inches. :)

We love you, Calvin!! ~Mommy