January Clinic Appointment

On Thursday, I went to my regularly scheduled Cystic Fibrosis clinic appointment. I knew that it was time for my annual blood work (plus genetic testing) and a chest x-ray, so I decided not to bring the kids with me. Anna had school and there's no way very-active Calvin would have been happy with all of the sitting/driving.

I decided to head up to Chicago earlier than my scheduled appointment to hopefully avoid the long wait in the lab and knock out any other tests before seeing the doctor. I arrived at the hospital around 9am and was able to get right into the lab to get my annual blood draw (7 tubes) and an extra tube for genetic testing. I believe that last time I had my genetics tested was about 10 years ago, and they were only able to identify one of my mutations - G551D. The other is still unknown. With all of the new medications in the pipeline, it's important to know exactly what my mutations are. As of now, I'm on the best medication for my mutation. Kalydeco is specifically for G551D, so the likelihood of me switching to a different medication any time soon is low, but learning my other mutation is still good information to have.

Jan 2019 - more areas of white
(plugging & mucus), especially
in the upper right lobe. Also a bit
more in my left lung.

April 2017

After my blood draw, I went downstairs for my chest x-ray. I actually requested getting the x-ray because I've been having such a rough time with coughing up blood lately - my latest episode was that morning when I woke up. I was so frustrated after seeing that, I emailed the nurse and asked her to put in the order. I wanted to see how/if my lungs have been affected by the sporadic hemoptysis episodes over the last five months or so.

After the chest x-ray, I waited to get a clinic room forever. As much as I love my doctor, I can't stand how long it takes. I feel like they're always running behind. Anyway, I did my PFTs, met with a new physical therapist (did a 6 minute walk test), saw the pharmacist, social worker and dietician before the doctor finally came in two hours after my scheduled appointment.

Thankfully my PFTs were pretty much unchanged from September's appointment. I was really glad and pleasantly surprised. But, that didn't explain what's going on with my lungs.

My doctor and I had an excellent, over an hour long, conversation. *That's what happens when I don't bring the kids* I showed her the calendar charting all of the dates that I've coughed up blood or had some streaks in my mucus. It seemed to be at least every two weeks, but without any kind of pattern or cause. It's happened when bending over, walking up stairs, just standing there, laying down, sitting up.... no pattern. Twice since August I've been on antibiotics - one round of Cipro in August and one round of Augmentin in November for a sinus infection. Even when on the oral antibiotics, I was having blood/streaking.

Then we finally got to the bottom of it - sort of. It's been months since I've been on inhaled antibiotics. I stopped taking Cayston in the summer or fall because I noticed I was coughing up blood more frequently while on it. I had tried a month of inhaled Tobi, but it made my lungs feel super tight, so I only managed about two weeks on it. So, since the fall, the pseudomonas (bugs in my mucus) in my lungs has been free to do whatever since it wasn't being knocked back by inhaled antibiotics. My doctor thinks this has caused a lot of inflammation in my lungs and irritation of my airways leading to all of the hemoptysis episodes. Thankfully, it hasn't made my lung function drop.

It made sense, and I'm really hoping she's right. So with the mucus sample I provided at the appointment, the doctor requested that the lab test the resistance of my mucus against the inhaled antibiotic called Colistin. As soon as we hear back, and are sure that my bugs are susceptible to Colistin, I'll hopefully be starting it. My doctor also wants me to go back on Azithromycin on Monday/Wednesday/Friday to help decrease the inflammation in my lungs. I originally stopped taking it about 5 years ago when we were trying to get pregnant for the first time. Its kind of a bummer to be put back on a medication that I've been off of for so long, but it's definitely needed right now. I feel like my list of non-IV medications is slowly dwindling, so I am really banking on the Colistin to help give my lungs the boost they desperately need.

I think we have a good plan in place and I'm trying to be optimistic. I know that 80% FEV1 isn't too far from my baseline of 85-88%, but I don't like seeing my numbers there. I hope that the medications will help my lungs get back in shape. I also need to really make an effort to add exercise into my routine to get my lungs working more. This is always the hardest part for me due to time constraints.

Right now my next appointment is scheduled for April, but I wouldn't be surprised if she wants to see me back sooner to see if the meds are working.

Next hurdle.... getting the meds approved my insurance and shipped out in a timely manner...

Kalydeco, Five Years Later

I've been on Kalydeco for five years (August 30th)! I can't believe it's been that long. This "miracle drug" has definitely changed my life for the better, but it hasn't been a cure, especially lately.

I've had a rough month, well, a difficult last 7-8 months, really. Ever since Calvin was born, I've struggled to get my lung function back up to my baseline of mid-80s - it's been hovering in the high 70s the last two times I had my PFTs done (which really isn't that much of a decline, but it is to me). I've been on Cipro twice, May and August, Cayston doesn't seem to be working as well for me (causes hemoptysis), Tobi makes me feel super tight and makes me cough all night long. I'm getting frustrated and I feel like I'm slowly running out of options (that aren't IVs). I've also been battling on & off hemoptysis for the last month which has been really annoying. I don't feel terrible, but I don't feel clear either. I just want to go back to feeling normal (my normal). I'm a little nervous about my appointment next week, especially since our whole family has this disgusting productive cough.

Overall though, I feel like Kalydeco has been amazing for me! Before I started taking Kalydeco, I really struggled to gain and maintain my weight, I was around 108-110 lbs. My lung function fluctuated between high 70s and mid-80s. Today, my weight is steady around 130-135 lbs and my lung function has been in the mid-to high-80s until earlier this year. Considering that the average CF patient typically loses a bit of lung function each year, the fact that I've been stable for the last five years is a huge success!!

I've had two full-term successful pregnancies (and our angel babies), maintained a full-time career of teaching, started my Master's degree and maintained my health.... I'd call that a win! All thanks to two little blue pills per day (plus all of my other treatments). Unfortunately, it seems like CF is starting to show its ugly head while I'm trying to be busy living my life lately. I hope that my doctor and I can come up with a new plan of attack because I have way more living to do and I'm not going to let this hiccup bring me down!

**Oh, and one of the CF nurses just emailed me on Friday asking if I wanted to do another round of genetic testing to see if they can figure out my second mutation (I have G551D & the other is unknown). Of course I enthusiastically replied YES! I'm so curious to know what the other mutation is and if we'll get anymore information when we find out. :)

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. :)

29 Years

I've now been on this earth for 29 whole years. I'm sure when I was born, I wasn't "supposed to" live this long....take that CF! Right now, the median life expectancy for someone with CF is about 40. Better live up these last eleven years....kidding! I plan to surpass that "limit" too. It's weird to think that next year I'll be 30. I thought we'd be done having kids by now and just spend the rest of our lives raising them, but obviously that's not the way things are going, and that's okay!

I'm very lucky and thankful to be as healthy as I am today. Ten years ago I never imagined I would be where I am today. I thankful to have Kalydeco to help keep me stable so that I am able to raise a family, work full time and live a full life. So, for the next year, I plan to be 100% compliant with my treatments. I want my last year in my twenties to be a positive push in the direction of my health. I'd really like to start regularly exercising, but that one is always harder for me for some reason. One step at a time, back on track with 100% compliance (although, I'd say I've probably been around 90-95% lately).

Thanks to everyone who went out of their way to tell me happy birthday today - you sure know how to make a girl feel loved. Anna and I spent the day with Tim's grandma while Tim was at work. We went to a baseball game last night with his sister, her husband and their two boys. After the game we were able to see an excellent nearby firework show. Since we were going to get back late, it was smarter for us to stay in town for the night. Today we had a nice, relaxing day, and then a long crabby evening from all three of us! We're all exhausted and worn out, but I wouldn't have it any other way....well, maybe without the two hour meltdown from the almost three year old!

Love my life. Love my family. Here's to another healthy, happy year. :-)

Health & Great Strides

I haven't posted about my physical health in a while, so I figure I may as well update you. The good news is that I haven't been on antibiotics since mid-September, which means it's been 6 & 1/2 months!! Bad news (or...not so fun news) is that the streak ends now. Over the last few days, I've had a sore throat and stuffy nose. I was hoping it was possibly just allergies, but today the frequency and consistency of my cough changed which told me it was time to bring in the 'big guns' - aka: Cipro.

I tried being proactive and got in contact with my doctor yesterday in case my allergy symptoms changed and I needed to begin Cipro over the weekend when she's out of the office. Of course, that couldn't go as smoothly as planned....I didn't get to the pharmacy until this afternoon to pick it up (because I wanted to start tonight after having crappy lung day today) and they told me they had no record of it - grrr!! So I called and texted my doctor who was as equally frustrated, but she kindly sent in the script again. Now I'm finishing up my treatments and plan to call Walgreens when I'm done to make sure it has arrived and has been filled before I go to the pharmacy this time.

Weight-wise, I think I'm hanging around the same weight as before I got pregnant with the boys. I know after I had them, I lost a few pounds, but the way clothes are fitting recently, it seems I've gained it back. I do not own a scale because otherwise I'd obsess over my weight, so we'll just see at my next clinic appointment.


Finally, I wanted to share about my Great Strides team this year. Colleen's Friends & Family will be walking at two walk sites this year - DeKalb and Bloomington. Every year our friends and family join us to walk and show their support for all people with CF and the CF Foundation. I'd guess we've raised close to $10,000 over the last five-six years together. The CF Foundation puts 90 cents of every dollar donated towards educating families, new programs and research for new drugs. Just this week, the CF Foundation release information on a Phase 3 Vertex study drug combined with Kalydeco has had very positive results!! This is where your donations go!!! This is why donations (and awareness) are so important! They're actually going somewhere and accomplishing things!

It's so exciting to hear of new drugs coming down the pipeline to hopefully be available soon for more and more CF patients. Unfortunately, all of these wonderful new drugs are still NOT a cure! I still have to do all of my treatments and take the same amount of medications as I did before I began Kalydeco (plus the two K pills daily). But the Kalydeco has helped keep my lung function stable for three and a half years, and helped me get to and maintain a healthy weight.

Anyway, my friends and family and I will be participating in Great Strides this year to help raise money for the CFF and more clinical trials! We'd love for you to join us! If you're unable to walk with us, and would still like to donate, all information can be found using the links below. :)

DeKalb info: http://fightcf.cff.org/goto/dekalb17

Bloomington info: http://fightcf.cff.org/goto/bloomington17

*All donations are 100% tax-deductible and truly, EVERY DOLLAR MAKES A DIFFERENCE!

16 & 17 Weeks

January 11 - 16 Weeks today!
Morning:
According to my apps (yes, I have three), you're about the size of avocados - around 4.5 inches long. That's nine inches of babies!! All of my apps say that I should start feeling you soon, and I cannot wait! I can only imagine the shapes and sizes that my belly is going to be with two of you moving around in there!

The products I ordered should be complete either today or tomorrow, so we'll be revealing your genders before the weekend. People (especially co-workers, haha!) are getting very antsy - it's been pretty funny!

Evening:
The order is here! Waiting anxiously for Daddy and Anna to come home so we can make our little announcement. :) I am so surprised at how involved everyone has gotten (especially at work) with these two little beans already. I don't know if its because you're twins that makes it more exciting or what, but it's wonderful knowing we have so much love and support for these little ones!

January 13 - 16+2 weeks
The word is out:

You're both boys!! Anna is going to have two little brothers (even though sometimes she still says you're "girl babies")! I love the way my shirt turned out and Anna is very proud to wear hers - she even added in her own touch of the cape for the picture, which I thought was so perfect.

The shirts came in a day early so that was exciting because people were asking me like crazy! Daddy and I had a bit of fun with it and only showed one side for about an hour before posting the picture above - just had to drive people nuts one last time! :)

Yesterday we received your double stroller in the mail and we all couldn't wait to open it. Of course Anna had to try it out right away and she loved it. Unfortunately Anna's old infant car seat isn't really compatible with the new stroller, so we'll be looking to sell her travel system set and purchase two smaller infant seats for you guys.

Now that we know & have announced your genders, I'm getting very anxious to start on your bedroom! We don't have a specific theme picked out yet, but have a couple ideas. We also don't have any names set in stone and probably won't for a while. I'd like to keep your names to ourselves until after you're born so there's a least some element of surprise.

It's crazy to think I'm almost half way through this pregnancy already!

January 14 - 16w, 3d
Horray for a three-day weekend! Right now, my biggest struggle is food, and I hate it. I want to eat everything in sight, but I have to watch my blood sugars so I don't develop gestational diabetes. It was around this time in my pregnancy with Anna that I struggled with post-dinner time highs, and I wish I would have written down what we ate all the time!
I'm struggling because I'm trying to eat healthier, but I don't feel like I'm taking in enough fat and calories that way, and I don't seem to ever feel full. Last night I cheated at ate a ton of pizza because I was just so hungry! I'm hoping my CF doctor and dietitian have a few ideas and suggestions of fatty foods that are not going to spike my sugars.

January 18 - 17 weeks!
Anna and I went shopping over the weekend and got better snack and meal (breakfast & lunch) options for me. It's slowly starting to come back to me about what I lived on -- peanut butter, jerky and cheese! I've also started drinking one Boost drink with my lunch at work to help get a little extra calories and protein instead of having water. I'm curious to see what my weight will be next week at my CF appointment. I'm also wondering what my lung function will look like. I don't feel like the boys are squishing my lungs at all - in fact, today they felt so low they were going to fall out! By the time I get to my appointment, I will have been off Cayston for just about two weeks, so we'll see how they're still holding up.

I went to my first local "Moms of Multiples" meeting last night at a church in town and met with three other moms who have twins (and some with other children, too). It was so nice being able to chat and hear their twin pregnancy experiences. I've also been able to meet another local mom with 18 month old twin boys, who loaned me a book about being pregnant with multiples that's been pretty interesting so far. One of the women from the group last night met up with me today to lend me her belly brace/support. As soon as I found out we were having twins, Tim and I always joked that I would need one by the end of my pregnancy -- we were right! I'm almost half-way through (which is crazy!) and I definitely feel "heavy" sometimes. I think it'll really help this spring when I'm getting a lot bigger and still working. I've been trying to, and will continue to try more, to sit as much as possible throughout the day, but sometimes the discomfort is worse when I get up after sitting for a long time. Sometimes I feel it's best do shorter intervals of sitting/walking/standing. I just keep reminding myself that the discomfort I'm feeling now is nothing compared to what it can/will be later, so I'm really trying not to complain!

Speaking of almost being half-way through, twenty more weeks and these little guys will be considered full-term. That would put us at June 7th. I really hope I'm able to make it past the end of the school year so that I don't have to use my sick days/maternity leave for bed rest. As of right now, on our last day of school, I'll be exactly 35 weeks, so I feel like it's do-able, but I'm really going to have to take it easy in April and May at work.


January 20 - 17w, 2d
I was really uncomfortable yesterday throughout the day, but mostly in the evening. I don't know if I stood too much at work, plus taking Anna swimming was just too much on my body, but I was sore. Plus, it felt like the babies were teaming up and laying together on the lowest part of my uterus! At some points I couldn't tell if I was starting to get mini Braxton Hicks, or if it was just the position of the babies, because my whole belly wasn't hard, just the bottom part. Either way, I had Tim help me put Anna to bed so I didn't have to lift her the rest of the night, and I tried to go to bed a little earlier.

This morning I woke up and had a little bit of pinkish-brown mucus-y discharge when I went to the bathroom. From what I've read and talked to people, pink/brown is old blood and if it was red, it'd be new blood and potentially a problem. I'll definitely be calling MFM this morning, just to let them know, but I'm feeling totally fine this morning and definitely not as uncomfortable as I did last night.


January 22 - 17w, 4d (Sunday)
You two have been keeping me on my toes these last couple days. MFM wasn't too concerned about my call on Friday morning, saying that as long as it wasn't bright red and I wasn't having any contractions, I should be fine. Then Friday afternoon it came back as I was packing the car to head to Bloomington then DeKalb - of course...

So I called MFM again, just to be on the safe side. I was uncomfortable throughout the day on Friday, but tried to sit as much as possible. After talking with the nurse, and she consulted the doctor, they decided it was better to have me come in and get checked just to make sure there weren't any problems. So I headed off to Springfield to see what these little boys were up to! First they did an internal ultrasound to check my cervix and the tech was "very pleased". It was measuring just fine and showed no sign of thinning or shortening. Also, we were able to see Baby A's little head way down low, so that confirmed the very low discomfort I'd been having! Then she did an external ultrasound and you two were moving all over the place! I even saw (I think) Baby B moving his arms back and forth, looking like he was trying to push/hit his brother!! Both placentas looked great, fluid levels were normal, both heart rates were in normal range and both boys were very active. All in all, everything looked great. Phew!

They gave me the all-clear to continue my activities as planned, and didn't even tell me to take it easy. They're going to call me on Monday to follow-up and see how I'm doing. Yesterday we did lots of shopping with Linda & Roger, and I had to sit for breaks frequently, but I was able to get a lot more rest/relaxation today which made me feel better. I'm really going to try to take it easy at work this week - wear comfy shoes, sit when I can, drink even more than I am now, etc. I'm hoping this is just a growth spurt/position issue and it goes away. I cannot imagine being this uncomfortable (plus more as they get bigger) for another 20 weeks!

January 23 - 17w, 5d
Oh boys - you just can't let me relax! It's been one heck of a week! I woke up this morning with a terrible headache and tried to get myself to drink lots and lots of water to help get it to go away, but nothing seemed to help. Aside from the headache and feeling really tired, I wasn't feeling a ton of pressure or discomfort down below like I had been Friday & Saturday. I was still having a little bit of discharge, so I was keeping an eye on that, too. Well, around 10:50 this morning at work, I started bleeding - like a period! Thankfully I have amazing co-workers and I was able to leave to head straight to MFM to get checked while I knew my kids would be in good hands.

Originally, the MFM office suggested I go to the local ER because they typically don't see patients for things like this before 20 weeks, but I told them I'd be much more comfortable seeing them (since they know about my CF & history) than a random person in the ER. The nurse on the phone talked to the doctor and he agreed to see me. When I arrived, they checked my blood pressure which was completely normal and pulse ox was 99%. I had another internal ultrasound to check my cervix. We saw Baby A's feet kicking away way down low, which means he was now breech. My cervix looked just fine - again, no signs of labor, thinning or shortening.
She then did an external ultrasound to check on the boys. They both had high heart rates today because they were so active. Baby A was 175, and Baby B was 168. Baby B was nice and squished, folded in half and we saw him kick himself in the head at one point. The tech was great, took her time, measured what she needed and took lots of pictures for me. One of the 3D pictures, I swear Baby A looks a lot like Anna did from one of her 3D pictures. Baby B was harder to see because he was rolled up into a ball. The tech was very pleased to see them moving so much and also said my fluid levels and placentas looked normal.
After the ultrasounds, they did an exam to check for any active bleeding. She could not see any - just brown old blood. So, overall, everything looked normal again, which is good to hear, but also annoying to me because I felt like I got no explanation as to why I was bleeding!
After everyone looked me over, the doctor came in to chat with me before I left. He said that it's not completely uncommon for women to have bleeding in twin pregnancies due to the extra blood supply and pressure. He said I could probably expect to have spotting throughout the pregnancy and this could potentially put me at risk for preterm labor (which I'm already at risk having twins), but everything looks completely normal today. He was very happy that I was willing to come into MFM today instead of going to the ER because he said they know me (CF + twins) and any time you have bleeding, it could be a sign of labor, but thankfully today its just there to stress me out - haha. We joked about how Anna's pregnancy was so easy, that this one couldn't be just as easy, too!

I am so thankful to have such a wonderful team taking care of me. Not once, Friday or today, did I feel like I was inconveniencing them by coming in on such short notice. Everyone was kind, took their time with me, and answered any questions I had. They all commented on how I can call any time I have questions or concerns.
Hopefully I won't have to go back within the next two weeks, before our big anatomy scan coming up. I'm looking forward to watching them spend lots of time examining and measuring each baby. They seem so big on the screen, but I'm curious how they're measuring for their age. Let's hope I don't have to go back until then, and that they behave!! :)

January 24 - 17w, 6d
Bleeding slowed down a significant amount last night after my appointment and seems to be back in brown stage as of this morning- which I'm hoping means it's the end. I still have a slight headache, but they gave me the okay to take Tylenol, so I'll probably keep that handy today.

14 & 15 Weeks

December 28th - 14 weeks! Hello second trimester!

Note: This one was taken in the evening - all others were in the morning.

December 29 - 14w, 1d
You're definitely growing! Look at that belly already! I've been having lots of stretching pains over the last week or so and according to my apps, you're both about 3.4 inches long and about 1.5oz. That's about 7 inches and 3oz of baby + placentas + your sacs....I guess that belly makes sense! Looking back at my pregnancy with Anna - this belly is about the same size as I was when I was about 23/24 weeks along with her!

Just got a call back from MFM! You are both very low risk for any chromosomal abnormalities! We also found out some gender news - so I immediately called Daddy!!! :)

December 31st - 14w, 3d
Daddy and I are going to get a new (used) car today. We're trading in our beloved Mazda 3 which we bought together a month before we got married. Its been with us for six years, four moves, a wedding, a baby and over 157,000 miles!
Even though we're planning on sending Anna to preschool in the fall, and Daddy will just be taking the two of you to Grandma's, there's no way we'd comfortably be able to fit both of your car seats in our "blue car". The plan is to upgrade to a Mazda 6 wagon, and I hope everything goes smoothly.

January 2 - 14w, 5d
Happy New Year! Thankfully everything went very smooth on Saturday, and Daddy and I came home with a new car. :) It has the right amount of space for our growing family and gets decent gas mileage for Daddy's commute to/from work. We are really liking the fact that it's a used vehicle (2005) because it's already broken in and we don't have to worry about trying to keep it fresh and new with soon to be three kids.

Pregnancy-wise, I've been feeling alright. I'm still having lots of stretching/pain in my low, low abdomen and groin area, but I know that's normal, it's just annoying. I notice it the most when I've been sitting a while and then get up, and also if I've been standing for a long time. With all of the stretching I've been feeling my body doing, and watching my belly grow by the day, I cannot wait to see you two at our ultrasound on Thursday! Daddy's thinking about coming with too in case they're able to confirm your genders. Let's hope you're both cooperating, otherwise we'll have to wait another 4 weeks!
I've also been experiencing some head aches on and off over the last couple days. I'm wondering if it's because I'm not drinking enough water. We bough a 40-pack of water bottles today at Sam's, so hopefully that'll help me, especially with going back to work tomorrow.

Unfortunately, winter break has come to an end. Luckily tomorrow is just Teacher Work Day, so it'll be a nice ease back into the week. I'm looking forward to getting back onto a schedule & routine, but will definitely miss sleeping in and having some lazy days. It's hard to believe this school year is already half way over. It's also hard to believe that I may not finish this school year! On the last day of school, I'll be exactly 35 weeks, so we'll see how my body holds up! I plan to get in contact with a couple of my favorite subs to see if they'd be interested in covering me at the end of the school year, if need be. I'd really like to make it to the end of the year, but I know there are so many unknowns with twin pregnancies as I've written about before.
Well, better get to bed! 4:45 will come way too soon!

January 6 - 15w, 2d
We know your genders!!! I had an ultrasound yesterday and you were both very cooperative and we were able to confirm your genders. Daddy and I are very excited!! We're not sharing just yet because I'm having some things made to help make the reveal a little more fun. Nothing over the top, but something cute. Hopefully they'll be done by next Thursday so we can share our news Friday.

I couldn't believe how big you both looked on the ultrasound yesterday, although the tech said you're probably about a pound a piece (so still very tiny). They didn't measure you at all because you're still so small, but will start measuring next appointment, which will also be our big anatomy scan. With all of the stretching and pain I've been having down low, I thought for sure the ultrasound would be really low yesterday, too. It wasn't. She was looking at you both up higher than expected and she said the top of my uterus is probably just above my belly button - wow! So I guess this belly is babies already :) You were both sideways, each of your heads facing a different direction. I got to see you moving all around, kicking legs and and bending arms. I asked how they determine who's baby A and baby B -- baby A is the one closest to the exit, basically. So the twin on the bottom is baby A, and the one on top is baby B. I'm assuming you'll stay in those positions most of the pregnancy until (hopefully!) you start turning head down to make your exit.

Surprisingly I've only gained 2lbs so far, which made me a little worried, but the NP didn't seem to think it was an issue. They really want me to keep a close watch on my sugars to help avoid gestational diabetes. My blood pressure was totally normal. And all of the blood work I had done around 11-12 weeks came back normal. Even my A1C was 4.6!! Woo hoo! That's within normal-people (aka: non-CF) range! I hope that I'm able to control my sugars with diet and not insulin this pregnancy. So far I've been doing pretty good, just struggling with dinner being a bit on the high end after two hours. Hopefully I can get/keep them under control to avoid further issues.

For now Daddy and I are keep our lips sealed so we don't give your genders away yet. It's was really hard at work today, but I'm going to try my best not to say anything. I'm glad that Daddy and I can settle on names and start coming up with nursery ideas. :-)

12-13 Weeks

December 14: 12 Weeks!

This belly is getting tough to hide! We've been taking them
first thing in the morning before work and before it gets stretched out from eating.
Pretty soon it won't matter the time of day because I'll just be big all the time!

12 weeks today and you're the size of toy soldiers or plums! Word of your existence is spreading across family and friends rapidly and it's been so fun! Everyone wants to know if you're identical (probably not) and if/when we're going to find out your genders (yes, definitely...and hopefully soon!). Some people have asked how being pregnant with two babies is going to affect me CF-wise (we'll see). Many people have been in shock and have been super excited!

I'm excited to be approaching the second trimester because that means you're slowly getting out of that critical development period. That also means that I should be open up to a few more medication options as you get bigger/more developed throughout the winter. I'm sick again - it came on quick Monday into yesterday. I ordered Cayston yesterday and it'll be delivered today which means I can start it tomorrow. I'll try to increase my treatments as much as possible which is always hard, plus with the holiday parties coming up it's going to be harder, but necessary. I emailed my doctor already this morning to see if there's anything else I can do/take. Luckily right now it's mostly my sinuses and my throat, but I can tell it's getting to my chest.

I'm nervous because this is the second time I've been sick already and its only the beginning of winter. The last time took me about two full weeks to fight off because I couldn't take any antibiotics. I'm hoping the Cayston will help me kick this one a little sooner. I'm also hoping that since we're getting into the second trimester, there may be a lower dose of an oral antibiotic that I can take if I get sick again this season.

December 21 - 13 weeks!
I'm slowly on the upswing of this sickness. Unfortunately Anna's had to go on antibiotics and Daddy is at the doctor right now to get some for himself. I'm very thankful I didn't get what they had, or if I did, that it wasn't as bad. Mine is mostly in my chest now, and just hanging around a little bit in my sinuses.

You two are 13 weeks along today which means you're the size of jalapeno peppers, Matchbox cars or clownfish (about 3 inches long) -  haha! One app I have is so fun and has lots of comparisons each week. You both each have fingerprints now, which is kind of cool! This is the last week of my first trimester which is also pretty exciting. In some ways I already feel like this pregnancy is flying by -- probably because I started showing so early!

I'm heading into Maternal Fetal Medicine today to get my blood drawn for the Harmony Prenatal Test. It's a screening for Trisomy 21 (Down Syndrome), Trisomy 18 and Trisomy 13 which are chromosomal abnormalities. I'm at low risk for any of these because we don't have a family history and you're both measuring just fine. I'm getting it done because we had it with Anna and it just gives us that peace of mind. It will also tell us your genders! With it being done so close to the holiday, we might not get the results until after the new year, but it's still exciting that we're finally going to find out what you are within the next couple weeks!
Just recently, I've been thinking you might be two girls. I don't know if that's because I just want to be able to reuse all of Anna's old clothes, or what. A couple weeks ago I was convinced you were two boys - so who knows! Naming you is going to be the hardest part because there are two. I have my two girls names ready to go - just have to convince Daddy. We both don't have any boys names, so if you're both boys, that's going to be the hardest.

I've been feeling pretty good pregnancy-wise for the most part. I can definitely tell you've been growing because I've been having lots of stretching pains down low over the last couple days.

Christmas Eve - 13w, 3d
I'm a little sad, but mostly pretty excited because this is Anna's last Christmas as an only child. I feel like I've been wanting to soak up every minute with her lately, especially because I'm on winter break, because I'm afraid we won't get that one-on-one time when you two are born! Next Christmas (and for  years to come) will be so fun with all three kids together!

I learned on Wednesday that the Harmony Screening may only give us a little information about your genders. It just detects a Y chromosome if it's there. So if it doesn't detect one at all, then we know you're both girls. If it does pick up a Y chromosome, that means either you're a boy and a girl, or two boys. It'll just tell us there's a boy in there, not how many. So I'm very curious to get the results. The genetic counselor who was there on Wednesday said the office is only open Wednesday and Thursday next week due the Christmas and New Years holidays. If we don't hear back one of those days, then we'll have to wait til the following week. I'm not too worried about it though because my next appointment is shortly after, so I'm guessing they'll try to look/confirm for us then. I wanted Daddy to come to that appointment with me, but that's the night Anna is starting swimming lessons, so I'll have to meet them at the Y after my appointment.

December 27 - 13w, 6d
Not too much news to report other than I am SO ready to prepare the house for you! Yesterday, Anna and I took down all of the Christmas decorations. I think that's the soonest I've ever taken down decorations, but my mind is racing with all of the things we need to get done to prepare for your arrivals. While Anna was taking her nap, I pulled everything out of the living room closet and almost everything out of the second closet (your closet) in the office (your bedroom). It's mostly still all in the living room right now which drives me a little crazy, but we're slowly sorting through things. We're making a sell pile (already sold $60+ worth of stuff), a garage sale pile, keep & find somewhere to store pile, and a garbage pile. Thankfully the garbage men came this morning, so I was able to get rid of a nice chunk of stuff already.

I wouldn't say I'm "nesting" already, but more preparing. There are a lot of unknowns and things out of my control with this pregnancy which I don't like. For example, my health and how my body is going to handle growing two babies; if I'll have to go on bed rest; if I'll be able to work til the end of the school year; when you'll be born; how you'll be born....
I am a planner. I like to know what's going on ahead of time. So all of these things that are completely out of my control are always on the back of my mind. Cleaning the house and getting the office converted into a nursery is something that I can control, it's something that I can see and put my energy into over the next few months, so that's why I'm so anxious to get it started.

We've also started buying diapers and wipes. We don't have a ton yet, but I figure we might as well get them now while they're on sale and stock up because we know it's something we're going to need!

I cannot wait to find out your genders! The fact that we should know within the next week or two makes me so excited. If one or both of you are boys, I'm going to have a hard time restraining myself from shopping! :)

Good-bye first trimester! You were not as bad as you could have been - thank you! - but I'm looking forward to the second trimester for the energy boost, baby genders, and my favorite: baby movements!

10 & 11 Weeks

December 1 - 10 weeks!

Not much difference between this and eight weeks - but still difficult to hide!!

I'm ten weeks today and there's just something exciting about entering double digits! I am dying to tell everyone about BOTH of you, but I can't spill the beans just yet....but we're getting closer!! We're within two weeks of everyone knowing! I am SO excited for my ultrasound on Monday afternoon. You two are about the size of a Lego person this week and your arms/legs/joints are starting to move and bend - which I can't wait to see on the ultrasound. You're going to be so much more baby-like and much less blob-like! :)

As long as everything goes well on Monday, then on Tuesday I'm planning on taping our Christmas card to the board in the lounge, at school, where we put all of our announcements. It's getting extremely hard to hide my belly, and I'm pretty sure everyone at work is suspicious, but too afraid to ask! I'm going to ask them to keep it off social media until we mail the ones out to all family and friends on the 10th. 

The Christmas cards came in yesterday (two days early!) and they look great! I'm very pleased with how they turned out. I would have liked the fireplace picture to be bigger, but Daddy likes that you have to look at it closely to actually figure it out. It'll be so exciting to hear everyone's reactions and to see who actually notices. We're bringing two to Linda & Roger this weekend and I cannot wait to see their reaction!

December 6 - 10+6
Linda and Roger were very surprised! We had to ask them to look at the fireplace again because they didn't notice at first. Linda said NO WAY! And Roger said, No shit?! Then later he said, "Shit, I can't spoil three of them! :) That's the Roger answer I was expecting! :)

I had another ultrasound yesterday and you're both still in there! It seems silly now to think that you wouldn't be, but I just get worried. Everything looked good. They actually moved your due date up one day and I'm officially due June 28th - even though twins never make it to their due date.

I met with a new nurse practitioner at the MFM office yesterday who was fantastic! She answered all of my questions and we talked about a lot of things. You two are "Di Di" twins which means you each have your own sack and your own placenta. The NP told me this is the best kind of twins to have because you're at a lot less risk. You don't share a blood flow, or a placenta. You're each growing individually of each other, which means we most likely won't have to deal with one twin being the "bigger/dominant" twin. That really helped put my mind at ease. She also informed me that the national average for twin delivery is between 35 and 36 weeks, although 37 weeks is considered full term. She said they'll closely monitor you guys and me, and obviously right now there's no telling how long you'll be in there.
With a twin pregnancy, I'm at a higher risk for pre-eclampsia (high blood pressure) and gestational diabetes (the CF puts me at high risk, then the two placentas - she said it's a "triple-whammy"). These are things that they will closely monitor me for and we'll adjust accordingly. If I delivered around 36 weeks, that puts me at the very end of May/beginning of June. I just hope I can make it through the end of the school year!

December 13 - 11+6
The word is spreading quickly!!! We dropped our Christmas cards in the mail on Friday evening and people received them very quickly (yesterday was Monday). Lots of messages and texts with surprised notes! It's been so fun! Grandma Dorothy is VERY EXCITED to watch two babies and she is definitely not bailing on us! :)

The day after my doctor appointment, I put our Christmas card up in the lounge at school. I made sure to get their early so most people would see it as they came in in the morning. All it took was for a couple people to notice before they were pulling other staff members in to see the announcement! Many people understood quickly that I was pregnant, but lots of "look closer" and "count the stockings" comments were made by each other to help them see the surprise! I wish I could have been recording everyone's faces when they went from thinking it was one, to realizing it was two! HA! Lots of open mouths, terrified-for-you looks, but also lots of happy, that's-so-amazing faces, too! Lots of hugs and even a few happy tears! :) It was so fun! It's also been SO nice to be able to wear my maternity clothes to work this last week because I've just been so much more comfortable. My belly looks 4-5 months pregnant, but most of that is still just weight gain & a growing belly during the day from eating/digesting. I think after winter break it'll actually be babies making that belly. 

8 & 9 Weeks

November 17 - 8 weeks:

Nice belly already - this was taken in the morning & all I had eaten was one piece of toast.
See what I mean by it being difficult to hide & me getting strange looks!
I know most of it is just weight gained/CF, but still!

I am so tired!! I wake up tired, when I leave for work I'm tired, I am so exhausted throughout the day, and then with it getting dark so early, I've been ready for bed by 7! Haha! I do not remember feeling this exhausted during the day with Anna. I know, I know there are two babies in there, but still. I hope it passes soon so I can get my energy back!

Other than feeling tired all the time, I've been feeling really good. I haven't noticed any more nausea when I get hungry...but I am starting to notice that I'm hungry all the time! I'm also still fighting this cold that started about a week ago. Thankfully I think I'm finally over the dry, non-productive hacking cough part. Yesterday, and more so today, I've been producing a LOT more mucus and I've been getting a lot of it out. I'm supposed to start a new Cayston cycle in two weeks, but I might call next week to see if I can get it a bit early to help fight off the last bit of this cold. 

Hopefully in about three more weeks we can spill the beans! It's killing me trying to hide my belly and not say anything about being pregnant!

November 22: 8w, 5d
Still exhausted over here!! I even had a student point out yesterday that I kept yawning - oops! I'm also very hungry - I woke up in the middle of the night the other day (at 1:00am) to eat sour cream & onion chips and a string cheese. I don't know if I was dreaming about it, or what, but I woke up and had to have those! I'm hoping that does not continue...haha!

I'm slowly starting to feel better. I'm still coughing more than usual, but what's coming up (except first thing in the morning) has been pretty thin and yellow, so that's good. I think I'm going to keep my Cayston to start on December 1st, since that'll actually be here quicker than I think. I'm really looking forward to my next doctors appointment which is two weeks away. This week should fly by with Thanksgiving and having a nice, long weekend. But next week is back to a full week at work, so that'll seem to go by slow, I'm sure.

This past weekend, we shared the news with some of Daddy's family. We told them that I'm pregnant, and everyone is very excited! Grandma even said, "YES!" Everyone is assuming it's just one, so I can't wait to hear their surprise when they get their Christmas card! I think we're going to send them out after Isaac's birthday party, which is December 10th. Then everyone will get them right before we have our family Christmas on the 17th! :)

We have our pictures back from Heather and they turned out really cute. Now we just have to do the fireplace picture this week so we can create our cards. I'd like to see if we can get a good deal on them on Black Friday, but then it's going to kill me to have the cards in the house and not mail them out for another two weeks! We'll see...

I cannot wait to see these babies again! They're going to be so much bigger than the little blobs they were two weeks ago! I am constantly worrying that one just isn't going to be in there anymore, even though I've been feeling great. I've had no cramps, pain, bleeding, etc to suggest that, it's just hard when I can't feel anything this early on except wanting to sleep all the time. I guess I should take that as a good sign, right?!

4 & 5 Weeks

October 27th: 5 weeks

Dear Baby or Babies (we don't know yet),
YAY!!!!!!!! I am so excited to be pregnant again!! It has taken us six months of frustrating fertility appointments to get to this point, and we were on the brink of IVF, so the word excited doesn't describe the way I'm feeling enough.

I cannot imagine what my body is going to look like carrying two babies, or how it's going to handle it, but if that's what we're in for, then we're ready as we can be. If you're just one lone little bean in there, then I'll be equally excited (and maybe a little relieved) because I know I can handle it.

You're already giving me a run for my money and keeping me on my toes. I started having pregnancy symptoms just one week after having the IUI. My nose is already on high alert and I've come to hate the smell of popcorn because they make it every Friday at school.

I've also had some experience with coughing up blood already. After talking with some of my CF friends, it seems kind of common, but I don't remember having this issue when I was pregnant with your sister. I've been in contact with my CF doctor and we're increasing my Vitamin K to daily for a week. She also wants me to keep running (although I feel that might be part the trigger) to keep working my lungs and get that junk out...just to take it a bit easier. We'll see!

At five weeks you're the size of a BB pellet or a black peppercorn. It's fascinating to read how much is developing already in your tiny little body(ies). Its been three years and I've easily forgotten. I'm planning on staying on Kalydeco during this pregnancy because, to me, the risk of stopping it is greater than staying on it. When I was pregnant with Anna and I stopped it, my lung function hit an all-time low, and I definitely don't want to take that risk again.

October 29th: 5w, 2d
I had my running group again this morning and we ran/walked 2.4 miles. We did a flat course and I felt very tired throughout, but my lungs felt great afterwards. I haven't had any straight blood or streaking today since my run, so I'm hoping that it's getting healed in there.

As long as everything goes well over the next month, Daddy and I are planning on announcing to everyone using our Christmas card. We're not sure how/what we're going to say yet, but I'm looking forward to everyone's reactions! :)

Our (In)Fertility Journey: Round Two, Part Three.

Saturday, September 24
I had my cyst-check on Monday right after work, and thankfully everything looked clear. :) I also missed two days of birth control while camping, oops, so my period actually started the day I went in for the cyst check - convenient! They took some blood work and told me that I'd most likely start my injection on Wednesday, as long as my blood work checked out. Again, thankfully, everything was fine and my meds shipped Wednesday afternoon so I was able to give myself the first one that night. I'm scheduled to go back for a scan on Monday again to check the progress of my follicles. I'm definitely having mixed emotions. This is our last chance to get pregnant the IUI route so I'm very hopeful, but I'm also pretty much hopeless because we've had basically nothing but bad luck since May. Monday's appointment is going to show us whether we can have hope for this final IUI or not, so we'll see.

In other news, in the three week birth control period, I got a call from the fertility clinic saying that Tim and I needed to attend an IVF informational meeting one evening. So we arranged to have Anna stay the night at Grandma's so we could have a nice hot date learning about IVF in detail. The meeting was actually very informative and I felt like it gave Tim and I a lot of information to talk about, and what to look forward, too. I feel like it prepared me to go through IVF mentally. I mean, it's not too much more than what I'm doing now (as far as meds), but it also looks like it's going to be quite a bit more emotionally involved. I've definitely comes to terms with going the IVF route, and I think it helped get Tim a bit closer to my side, too.

Thursday, October 6
My first scan after the injections wasn't very informative. It showed that follicles were growing on each side, but neither side had a dominate or large follicle just yet. They asked me to come back on Friday, where our results were pretty similar. I had 2-3 follicles (some on each side!!) measuring about 12mm, and they need to be 18-20mm to be considered mature and ready for ovulation. I was told to come back the following Monday.
I went in on Monday for another ultrasound and they always look at the right ovary first. There was a large follicle measuring about 17mm on the right side, and one a little bit smaller. The tech remarked how I looked like I was almost ready to trigger, but I was a little frustrated because my follicle was on the right again. Then she went over to the left side and there were two big follicles!!! It's the first time since May that I've produced a mature-sized follicle on my left side! One was measuring 17mm and the other was just a bit smaller. I was so excited - we finally had our chance!! When she was done, the tech went to get a nurse to discuss next steps. The nurse told me to trigger Wednesday night for an IUI on Thursday at 10am.
Here I am, Thursday afternoon, relaxing at home after the IUI this morning. The last couple days and this morning I've been feeling a dull pain/cramping/discomfort in my ovary area, so I'm hoping that's a good sign that my body is preparing itself properly. My hopes are so high for this cycle! It's the first time I've ovulated from my left side, and when we were trying with Anna, each time we did an IUI with a follicle on the left it worked (one did for a couple days, and the other full term), so I'm this will be just what we need...we'll find out in two weeks.

Friday, October 14th
I'm 8 days past my IUI and I am driving myself CRAZY symptom spotting every little feeling! The day of and the day after the IUI, I felt more bloated/crampy/uncomfortable than I remember with previous IUIs. I asked the fertility doctor about it right before the procedure, but he said that it was just my body's way of preparing itself.

Just days after, I was feeling some discomfort towards the middle-left side of my uterus. I was feeling some tight, pulling pains, kind of like round ligament pains. This Wednesday morning I noticed my boobs were feeling slightly sore near my armpit area. The sensation increased a bit yesterday and today...even sometimes getting that feeling right before having a let-down when nursing (obviously I'm won't, but I haven't felt that in a long time!). The soreness has even moved just the sides to towards the top, as well. After talking about all of my weird feelings with a couple good friends, I couldn't wait any longer and took a pregnancy test this afternoon. I really didn't think it would show anything because it's still so early, but I just had to try. Of course it was negative, but I'm not feeling disappointed. In fact, I just placed an order for 20 test strips that should be here by Monday or Tuesday! :)

I really have a good feeling about this, just from the signs from my body. But, if this doesn't work, I am honestly going to be devastated because in my mind, right now, I'm pregnant. I'll continue to test all week because it's going to be on my mind constantly (still) until I know a for-sure answer. If I'm feeling all of this and I get my period next week, it's going to crush me. It's also going to make me think I am a bit crazy for thinking myself into being pregnant and having these feeling for nothing....let's hope that's not the case.

Monday, October 17th
11 days post IUI and I took a dollar store test this morning that had the faintest second line I have ever seen!!!! I'm super excited, but still a little cautious. It's still very early and I don't want to go telling the world yet because of what happened the first "successful" IUI back in 2013. I will know for sure on Thursday when I go get blood work. I will continue to take a test every day this week, and hope the line gets darker, until I'm able to get to Springfield on Thursday (day 14). This morning's test just verifies, for me, that I'm NOT CRAZY and what have been feeling is real!! This has NOT set in yet, but it's exciting just typing it out!

Thursday, October 20th
I'm pregnant!!! I've been taking tests all week and they've slowly been getting darker. This morning I went to the fertility clinic to get blood work done since today is two weeks since my IUI. I anxiously awaited the call all day to hear what my levels were, checking my phone a million times throughout the day. I even called at 12:30 during my recess and at 2:30 after school with no luck, just reaching the secretary who couldn't find an available nurse. They finally called me at 3:00pm and the nurse immediately started with, "How are you feeling?" I said,"Umm...pregnant!" She laughed and said, "Well you are!" I asked what my number was and again, she laughed while saying 449.

*When I was 14 days post IUI with Anna, my number was a 189, so I was very shocked to hear such a high number. I immediately asked. "Uhh...does that mean there's more than one?!" And she replied that there could be....what?!?! I couldn't believe it!! I was expecting to hear a good number because of the way I had been feeling for the past week, and I jokingly threw around the idea with a friend, but I was completely surprised to hear there could be more than one baby growing!

The nurse was SO happy for me and was so sweet on the phone! She kept saying how excited she was for me and how "it really did just need to be on that side". (Tim was right!) She told me my Progesterone level was "greater than 40" which is excellent. They want it to be between 18-20. I asked if it was higher because of the possibility of multiples, but she said no, it's just a really healthy pregnancy. :-) **I'm still shaking my head in disbelief as I'm writing this!**

Once I contained myself a bit (my hands were getting sweaty just talking to her on the phone), I asked what the next steps were. They want to see me back on Monday morning for another blood test. My hormone level should double every 24 hours or so, which means my number should be around 3,600 when they call me back Monday afternoon. And if everything goes well Monday, we'll schedule our first scan for two weeks later...which is when we're really find out how many babies we're talking about here!! She also told me that I may feel nauseous since my hormone levels are so high - so far, so good there (although I'm already feeling like my nose is on high alert).

After I hung up the phone, I just sat there in disbelief. I didn't want to tell Tim over the phone because I wanted to see his reaction, so instead I called one of my CF friends who's been helping me through the last two long weeks waiting for this result. She was just as shocked as I was about the possibility of two babies, but was also so excited. Then, of course, I had to call Catie! Again...you could hear the surprise and disbelief in her voice, too! The more I talked about it...it still didn't sink in. It felt weird using words like "they" and "them" instead of "it".

I composed myself enough to get some work done at school before heading home. I couldn't wait for Tim and Anna to come home!! They got here right as I finished up my treatments. I couldn't hold it in very long and had to tell Tim right away. His face was hilarious! It was just for a split second, but the look of shock (and maybe a little panic ;) ) was there and then gone. He's mister non-emotional and didn't really say too much about it, but kept reminding me that we don't know for sure yet. He always thinks I'm crazy for getting to ahead of myself. Of course I was thinking about trying to come up with two baby names, him making another crib, where we're going to fit all of their stuff, how I'm going to breastfeed two babies, etc and he would just shake his head. Haha! I know that it's a possibility that it could be one baby, and that's totally okay with me. The idea of having two babies (and a three year old) is a little scary right now, but if that happens, that we'll deal with it.

I also called my CF doctor tonight to get her in the loop. She was SO happy and of course, surprised when I mentioned the possibility of two. She said that I'm on the extremely healthy side of CF and she sees me just like she would any other woman walking around carrying two little babies, so she's not too worried. We discussed me staying on Kalydeco for this pregnancy because I didn't feel comfortable coming off of it and she told that she supports my decision which I really appreciate. There aren't any medications that I need to stop at the moment, and I go back for a routine visit November 10th (which is most likely the week I'll have my first scan), so we'll just make sure everything's looking good lung function-wise. I've been feeling really good lately, so I hope it continues over the next nine months and beyond.

So I'm done telling people - friends and family will find out eventually. Either when I get too big to hide it or when we decide to make our announcement. I am REALLY looking forward to our first scan and seeing what we're dealing with - it'll feel so much more real then! I am so excited for Anna to be a big sister. She is going to be the BEST! She loves babies and will be such a big helper. I am beyond excited right now that I feel like I can go on and on all night, but I'm stopping here! :)


Monday, October 24th
This morning I have my next blood draw to make sure everything is progressing well. I've been very relaxed over the weekend about everything. I even threw away the pregnancy tests I've done and only took one more to see if the line would get any darker - it barely did. I'm still feeling alright - no sickness or nausea. Some smells are worse than others (like popcorn, gross!), but I haven't felt like I've been going to puke, yet. Sometimes when I'm switching my position during my sleep, I feel a little pull or cramp in my uterus area, so I'm sure it's already starting to grow and stretch. I just want to know if we're talking about "it" or "them". I'm hoping that we'll schedule the ultrasound today, so that I at least have that date to look forward to. :)

Friday, October 28th
So the fertility clinic never called me back on Monday afternoon, so I ended up calling them Tuesday morning. My HCG level was 1,549 and my progesterone was 40. These are still excellent numbers! We have our first ultrasound scheduled for Wednesday, November 9th, and I'll be a day shy of seven weeks then. I'm SO excited!! I really want to know how many babies are in there! My HCG levels are still considered high, so we'll see...

CF Clinic

Here's a quick recap of my appointment yesterday.

I started feeling a cold, extra tingly cough coming on Monday that slowly increased throughout the week. I was worried about what that might show for my lung function because my lungs were getting tight. And now this morning I'm feeling worse than I did yesterday, and I'm really looking forward to the weekend to relax, shake extra, and maybe even get in a nap.

I got to my appointment about ten minutes early, but didn't get called back to a room until about half an hour after my appointment time. Oh well, I had time to scroll through FB and relax after the long drive. The took me back to get my weight (134.9lbs) and then to the room. The people who cleaned it were just walking out and the cleaner smell was SO strong. They asked if I wanted to wait in the waiting room for 5 more minutes while it aired out and I definitely said yes. So, five minutes later she brought me back to the room and it was much better. Someone came in to do my vitals (100% O2 level and blood pressure was fine). Then came the PFTs...

I always get a little bit nervous before doing them because it's basically the whole reason I'm there. It guides the rest of my appointment and tells how my lungs are holding up. My last visit was very disappointing when I had a huge drop and was down to 81%. I was hoping to be a few points higher than that today because I had been feeling excellent until this week, so I was worried that my tight lungs would skew the results. My first blow was pretty good, and when I looked at the screen I saw 86%! I said, "Yes!" and then coughed my brains out for a little bit. Once I got everything out, I did the test again and got an 83...not too bad, but I was getting tired and tight. I coughed a bit more until I felt clear again, then went for a third test. Same result - 83. I could tell the last two were lower because of the way I was feeling, so thankfully they took the first test as my best one. :)

So even with this cold beginning, my lung function has gone up at least 5% over the last couple months. I am very happy with that. I think the combination of being healthier, doing all of my treatments, and joining my running group has definitely contributed to that increase. I'm a little worried I'm going to lose a bit of it by the way I'm feeling this morning, but hopefully I'll fight this nasty bug off soon.

Thankfully, I'm at a very healthy weight so I have some back up pounds to help me get over this cold. As a person with CF, it's always been very hard for me to gain weight, and it's always come off very easily, which was not fun! My body is going to be working extra hard over the next few days to fight this cold, which burns more energy and calories. So I'm glad and lucky to have that extra weight, so that if I did lose a few pounds, I'm still within a healthy range. The unfortunate part of being at the heaviest weight I've ever been is my belly. Oh the dreaded CF belly.....I posted about it several years ago when I thought I was at my highest weight (about ten pounds lighter than I am today - thanks Kalydeco). It's very common in the CF community to have a belly. It's the way our bodies are built and I don't think people who are not familiar with CF understand it. Yes, I look pregnant, but it's all CF belly. That's where I gain my weight (and in my face) and I also have a distended belly because of my digestion issues. CF patients frequently have bowel/digestion issues, extra gas and bloating which all shows in that area....just an extra lovely perk of the disease. So for those of you who keep looking at me funny...please stop. :)

Overall, I had a great appointment. The doctor was very please with my increase in weight and lung function. She wants me to up my treatments to help kick this cold or whatever is developing. Hopefully it'll disappear by next weekend when I'm running in the Turkey Trot! I'll go back in January for a follow-up (she said unless the weather is bad, then we can wait til February).

X-Rays. Compliance. Kalydeco.

 

 

On the left: Chest x-ray from January 2013             On the right: Chest x-ray from January 2016

 

What's the first thing you notice? Be honest...

 

Fat! And that's a good thing for a CFer. Let me fill you in on the huge difference in these photos.

 

January 2013 - I was half way through my first year of teaching. I weighed 109lbs, although my lung function was 88% at the time, it wasn't consistently that high. I was showing signs of pre-diabetes, losing weight quickly and not compliant with my treatments. This x-ray is pretty good for a CF adult (24 then). Lungs are pretty clear with mild issues in the upper area of my right lower lobe.

 

January 2016 - I was into my fourth year of teaching, on Kalydeco for a little over two years, a mommy, 124lbs, and a steady lung function of 88%. I had a normal A1C (aka: no diabetes!) and had been compliant with my treatments for a couple years now. The lung damage was very similar, which is key. Typically, adults with CF slowly lose lung function over years, but that fact that my lung function is even better (now) is quite amazing.

 

 

 

There are two giant factors: Kalydeco and compliance.

 

When Tim and I got married and talked about starting a family, I became very serious about my health. I didn't want to sit back and let CF slowly destroy my body as it was. I finally took control and started being complaint with all of my medications and treatments. It was only fair for my husband, and then daughter. To this day, I remain complaint with my treatments because they're what keep me alive.

 

Looking back at blog posts from right before I began taking Kalydeco, I remember that I really didn't want to start it. I didn't want to rely on another drug to keep me healthy. But after realizing, 'what's another pill?!', I figured I'd give it a go. I started Kalydeco August 30, 2013. My lung function the month prior was 77% and I weighed 109lbs. Today, my lung function is 92% and my weight is typically between 124-127lbs. That means, since beginning Kalydeco 2 1/2 years ago my lung function has gone up about 15% and I've gained 15-20lbs! Now if that's not amazing, I don't know what is!! From two little blue pills twice a day!

 

I plan to continue taking those little blue pills and doing ALL of my treatments every single day...well, until there's a cure!

This One's About CF

Did you know this is a CF blog?! It sure doesn't look like it too much from my recent posts, but I like that. It shows me (and my readers) that CF isn't the only or main part of my life. Either way, here's a quick update on the CF side of things.

• Tomorrow marks three months of 100% compliance with my treatments!!
• Last time I posted was after my clinic appointment which went very well. Since then, I've received my blood work and chest x-ray results which came back great. All blood work is fine, A1C is 5.6 (woo hoo!!) and my chest x-ray was unchanged from last time. :-)
• About two weeks ago I started coming down with what I thought was going to be another chest infection and another round of Cipro. It started on a Thursday/Friday and I felt like crap by Saturday with a nasty, dry cough. I made sure to do extra treatments Friday, Saturday and Sunday to help kick whatever was developing. Thankfully I was also due to start my Cayston, so that was delivered on Saturday. Between the extra treatments and Cayston, I am so happy to say that I was able to fight back and NOT have to go on oral antibiotics!!!
• I feel this is absolutely attributed to Kalydeco, in my opinion, because it's helping me stay so stable!!
• This made me so excited for two reasons-
• 1) I don't like the way Cipro makes me feel sometimes
• 2) The less oral antibiotics I take, the less resistant my lungs/body become to them, which means they'll be a good option for me longer. Once my body is resistant to oral antibiotics, that's when I have to use IV antibiotics. I am very lucky to not be resistant to any medications, especially at this age!!
• To keep it this way, I have to keep up with my health, but I also need your help! The Cystic Fibrosis Foundation's greatest fundraiser is right around the corner: Great Strides!
• The money that is raises goes directly to research for new medications and treatments.
• The more money we raise, the more of a positive impact we can make!
• My team, Colleen's Friends and Family will be walking in at least two walks this spring - DeKalb (April 16) and Bloomington (May 12).
• My DeKalb fundraising page is: fightcf.cff.org/goto/dekalb2016
• I also have an event on Facebook and a link on my Team Facebook page.
• Finally, take a look at downloading the FREE Great Strides app on your phone. It's super easy to use, has all information you need and has easy ways to update and ask for donations via social media! :)

Kalydeco Is Not A Cure

Great, amazing, wonderful things are happening in the CF community, and have been for the last few years. The release of Kalydeco in January 2012, and now Orkambi in the beginning of July. They're making huge, positive impacts on a great deal of the CF population!
Unfortunately, I've heard these medications (more so, Kalydeco) referred to as a cure more times than I would like. They are NOT! They help fix the mutated gene, but do not completely correct/reverse it.

If Kalydeco was a cure:

• My lungs wouldn't be filled with bacteria-infested mucus
• I wouldn't still need to do 30 minutes of Vest twice a day (or more when sick)
• I wouldn't need at least 4 nebulizer treatments everyday
• I wouldn't need to swallow at least 15 digestive enzymes a day
• I wouldn't need several different vitamins and other various pills per day
• I wouldn't need to visit my CF clinic 3 hours away every three-four months
• I wouldn't have had an awful Spring with numerous episodes of hemoptysis
• I wouldn't need annual chest x-rays and blood work
• I wouldn't need a high-fat, high-calorie (watch the carbs & sugars though because you're borderline CF Related Diabetes) diet

I started Kalydeco on August 30, 2013. I expected immediate, dramatic changes when I first started the drug, but didn't notice too much of a change. Even though all of these things are true, I'm very glad that I had an excellent talk with my CF doctor (have I mentioned how much I love her?!) was

Dr. Dowell with Anna
from my clinic appt

reminded today how lucky I am to have Kalydeco and how much it really is positively impacting my life.

• Typically, CF patients exhibit a slow, steady decline in lung function over a few years time. My doctor kindly reminded me today that my lung function has been very stable over the last two years. Even when it declined during the beginning of pregnancy, it shot right back up at the end and has been stable since then.
• I have not had to increase my enzyme dosage which is also common for CF patients, which means my pancreatic function is stable.
• I've slowly and steadily been gaining weight over the last two years. This is one of the positives I have noticed over the last two years and have been very pleased with.
• I had a very easy, healthy pregnancy which may not have been the case without Kalydeco.

Despite not feeling immediate results, I am VERY lucky to be on Kalydeco, and now I can positively answer people when they ask how it's been working for me. I'm very happy to have 'normal' lung function, even if it means doing all of this work to keep it there! I hope it stays like this for a long time. :-)

Current stats

21 Weeks

Saturday, April 5 - 21w, 1d
Yesterday you got one of the coolest gifts in the mail! I was expecting my Rock CF shirt to come since I signed up for the 5K that was last weekend and Emily (the CFer in charge) told me she would mail it to me. When I opened it, there was an adorable Rock CF onsie for you! I am so excited for you to wear it!!

Tuesday, April 8 - 21w, 4d
It has been so amazing feeling you move everyday! Each day you get a little bit stronger and your movements get a little harder and more noticeable. Daddy was finally able to feel you last night! I think I was more excited than he was, haha. It's still sometimes hard to believe there's a little person growing and moving inside of me.
We are really looking forward to your big anatomy scan tomorrow! And if you're cooperating, they're going to do a fetal echo, too, to make sure your heart looks healthy. We could be in there for up to two hours, but it'll be so worth it and I'm sure we'll get plenty of pictures. :)

Wednesday, April 9 - 21w, 5d
Today's ultrasound went very well! It took about an hour and a half - about an hour of it was the echo...which, honestly, was pretty boring because we had no idea what we were looking at. The anatomy scan was much more interesting and entertaining. You were putting on a show at times. We saw you yawn, stick out your tongue (several times), bend completely in half with your knee hitting your chin, open & close your hands, wiggle your fingers, and move your right foot each time the tech tried to measure it. You weigh around 15oz, your heart rate was 145bpm and the doctor said you look 'absolutely perfect' and you're growing right on track.

Here you are bent in half - your knee is touching your chin &
the lower part of your leg is above your head!

Side profile

Here's your foot :)

I'm still feeling great and now weigh 122.25lbs, which puts my total weight gain at just over 8 pounds so far which the doctor is happy with. I've also kept my blood sugars at or under 120 for several weeks now which makes me very happy knowing you're in a healthy environment. After my appointment I talked with Dr. Dowell to update her with everything. We decided not to start Cayston right now since I don't seem to need it. We're going to see what the Kalydeco does for me over the next few weeks.

20 Weeks

This

Friday, March 28 - 20 weeks
We're halfway there little girl, how can that be?! And even better than that....I felt you move last night AND this morning!!!!! Daddy and I (mostly Daddy) were moving furniture in the house so he can sand and refinish the rest of the floors. When I sat down to take a break, I felt little movements really low in my belly. I rested my hand there for a while and definitely felt several more over the next few minutes. So I called Daddy over to see if he could feel, but of course you weren't moving as much and when you did, he said he couldn't feel it. It happened again this morning, in the same spot, so I grabbed Daddy's hand again, but he couldn't feel you still. :( These movements are much stronger to me than I expected, so I thought maybe Daddy could feel them too, but not yet. I'm hoping he'll be able to feel you soon, too!

Wednesday, April 2nd - 20w, 4d
You are moving like crazy in there, little one! It is so cool to feel! The first couple of days I could only feel you when I was laying down and really concentrating. But now I can feel you when I'm sitting, too. I've noticed you the most at work whenever I'm able to sit and relax (which isn't much),  usually during guided reading and after I eat. I still think you're movements are too subtle for Daddy, but I know you'll be getting stronger and bigger and he'll be able to feel you, too. The movements don't feel like "flutters" or kicks, more like round little flipping movements. I can definitely understand how people would get them confused with gas/bloating, especially those who've dealt with a lot of that before. I just love feeling you move and the best is when it comes out of no where. :)

Health-wise I'm feeling great! Tomorrow is my last day on Tobi and my lungs are feeling much better. My mucus production is much less, I'm coughing less during the day, and thankfully not at night anymore. I'm sure part of this is contributed to the Kalydeco, too.

This week we start measuring you from head-to-toe (it was head-to-rump prior) and you're now supposed to be around ten inches long - about the size of a banana. This week you are practicing your swallowing and producing your meconium (which will be your first poop). Mommy didn't pass this when she was born. It was blocked in my intestines which was a huge indicator of my CF, but I'll tell you that story when you're old enough to understand.

Its crazy to think that you'll be here in four months! We can't wait!!! Daddy's trying to keep me out of stores so I don't keep buying you super adorable clothes, haha! I can see how easy its going to be to pick up a thing or two here or there, but I'm really going to try to restrain myself. We have your first shower, my staff shower, at the end of the month and I'm really looking forward to that because then we can slowly start putting your room together. Daddy's working really hard to get lots of projects done before you arrive. Right now we have all of our living room, bedroom and office furniture literally stacked in your room (along with our mattress shoved in the corner) so he can refinish the rest of the floors - they look great so far! Your Daddy is a very hard worker and one of the most creative people I know and I really hope you get that from him!