Tuesday, April 25, 2017

Our Infertility Journey: Round Three, Part One

This week is National Infertility Awareness Week. To raise awareness, I'm going to begin sharing our third fertility journey. 

(If you'd like to read our previous two fertility journeys, scroll down under the "What I write about" section and click on the word "infertility" and you'll actually want to read from the bottom-up to go in order.)

This time around is going to be much different than years past, because the idea of getting pregnant after a loss is extremely terrifying and so exciting at the same time. When I type these blogs, I keep them in a "journal style" to capture my true feelings and thoughts for that day, along with the progress of our fertility treatments. With my past two pregnancies, I've shared all of the posts after knowing I was already pregnant. This time around, I haven't decided how much I want to share. More than ever, I feel like every pregnancy and every life should be celebrated, no matter how long. That being said, it makes me nervous to share every detail while we're going through it. So, I'll be sharing information as I'm comfortable this time around, and I'm not sure what that's going to look like yet. 

I started this blog post just 12 days after we lost our boys because I was trying to look to the future and find something positive and hopeful to focus on. I have no idea where this third journey is going to take us. I feel like it's the scariest one so far: 

February 17
After the miscarriage of our twin boys at 19 weeks and 4 days, it was never a question in my mind or Tim's mind about whether or not we'd try again. We could not have this tragedy stop our family from growing like we always wanted it to. We both agreed that as soon as my body was ready, and our emotions were ready, that we'd start trying again.

I'm very happy to say that the wheels are already in motion on expanding our family again. It gives me hope. It gives me something to look forward to. Surprisingly, it makes me excited to go back again because I believe it's possible for me to get pregnant again and I'm having really good feelings about it all right now. 

Yesterday, I was contacted by the fertility clinic letting me know that they heard about what happened from MFM and they asked if we were interested in coming back - of course I said yes! So we set up a follow-up meeting with the fertility doctor for next Wednesday afternoon. Tim and I talked about it last night and we're both looking forward to it. As of right now, our plan/ideas are to go through with another IUI (I'd like to start right off with injections, where we left off last time), and not to do the actual procedure unless there is ONE mature follicle on the correct side. 

When I got pregnant with the boys, there were two mature follicles when I went in for the IUI. One was a little smaller than the other, so I really didn't think it would take, but in the back of my mind, I knew it was a possibility. This time around, I only want to go forward with one follicle at a time. We will never know why we lost our boys, but I don't think my body can handle twins again. Maybe it was the stress of two babies on my "sick" body, maybe it was just that my cervix gave out because of the added weight/pressure of two growing boys - who knows...we never will. But it makes me nervous to go through with another twin pregnancy because everything about Anna's "singleton" pregnancy was perfect and easy. I know my body can handle one baby, so that's the route that I'd personally feel comfortable with.

Our fertility doctor has been very understanding and respectful of our wants/feelings in the past, so I hope that he's open to hear what we have to say and willing to work with us again. :)

February 22
We met with our fertility doctor this afternoon and it went really well. He wants us to wait until I've had two periods before trying again. Originally, I wanted to pick up where we left off (injections & IUI), but now I'm torn...of course.
When I explained to the Dr. that I wanted to try IUI again he completely understood. But when I told him that I was against going through with the IUI if I have more than one mature follicle, he started talking about doing IVF instead. There are a lot more controlled components when it comes to IVF, including the number of fertilized eggs (embryos) that would be put back in my uterus. He feels that we'd be very successful with IVF, which we had discussed in the fall, because it is so controlled and I don't have too many issues beyond the one Fallopian tube. Thankfully we still have time to decide what we want to do. It was really nice discussing our options today because this makes me hopeful and gives me something to look forward to.

I'm torn because we've been successful with IUI, but it could take some time to get the right circumstances for it to work again. With IVF, our time could be shorter, but the process is a bit more intense. As of right now, we're scheduled to do IVF in May, but the more I thought about it after we left, that is probably one of the last months I'd pick to do that because of it being the last month of the school year. So, when I get my first period, they'd like to me to call them and I think I'm going to ask them to push the IVF back to June or July, so I will be less stressed and more available for appointments. Now we have to decide if we want to try an IUI in April and/or May, or just go straight to IVF this time. Again, I'm glad we have time to think about it because its a lot to consider, but I'm so glad we have something to look forward to in the next few months.

March 14
I started spotting last night, finally (5 weeks and one day later)!! I've never wanted a period so bad in my life! I am so ready to get the ball rolling on fertility treatments again, As of right now, after milling our options over in my head several times over the last few weeks, I think I want to go straight to IVF. I am so anxious to get pregnant again because the need to grow our family is so strong. I feel like IVF will get us there the quickest, hopefully. It all depends on my cycles and what my body decides to do that will determine the timing. If it happens in May, great. If we have to wait til June,that's fine, too. I just hope that my spotting turns into a full period today! As long as it does, I'll be calling the fertility clinic to let them know and see what our next steps are.

March 27
So far so good, my body had a regular period for a few days and I'm probably about 2-3 weeks out from my next one.

April 6
It's been two months, yesterday, since the boys were born. According to my fertility tracker app, my period should be starting next week. That would be nice because I have next week off for spring break, so if I have to have any appointments at the fertility clinic, my schedule is wide open. This will be my second period, meaning we'd get the ball rolling on IVF, starting with birth control (weird, right?!) which is ready and waiting with all of my other meds.
IVF is starting to feel within grasp now and it's making me a little nervous when I think about the intensity of everything - lots of shots and new meds, possible over-stimulation, retrieval, transfer, etc... It makes me nervous that the process is going to be stressful and emotional, but I have to keep my eye on the end goal which is expanding our family. I hope that when I do get my period and the clinic checks my body, everything looks good to begin in May.

Thursday, April 13, 2017

Clinic Appointment Today

This picture basically sums up my appointment today! 

I was lucky enough to have my appointment moved up a couple weeks to today during my spring break so I didn't have to miss a day of work. It was wonderful because it was not a CF clinic day, meaning there weren't several other CF patients waiting and sharing germs in the lobby! It also meant that I got in right away! And, as a bonus, since things were going so smoothly, I decided to get in my chest x-ray today and that lady was super fast with it!

I'm currently nearing the end of my two-week Cipro cycle, but still not feeling 100% lung-wise yet. I'd say, I'm more like 85-90%. I'm still having a bit extra mucus than normal, and some at night which is not normal for me, so I don't feel like I'm quite ready to be done yet with the antibiotic. This is the first time I've ever asked about extending my antibiotic cycle, but I feel a few more days (up to a week) might be just what I need. The nurse practitioner agreed, even though my numbers looked good today. I appreciate that she respects what I have to say and trusts how I feel. The one good thing about my mail-order Cipro issues I had, is that now I have a ton extra on hand, so extending my meds another week isn't going to be an issue. I'm also going to order Cayston as soon as I can and start it a little bit earlier than scheduled.

One thing we did discuss today though, is that my lungs and pseudomonas (bacteria my lungs culture) are slowly becoming resistant to Cipro. I used to have a "moderate" resistance to Cipro, but according to my last culture in January, I'm now "intermediately" resistant. Unfortunately, Cipro is the only oral antibiotic that fights pseudomonas. Once I become completely resistant, that I'm left with IV antibiotics as my weapon against infections. I wasn't too happy to hear this, but I think (hope) I still have lots of time before I need to really consider that. Thankfully, I was able to make it almost seven months between needing Cipro, so hopefully I can make it another 7+ months before needing it again. The longer I can keep between cycles and the less often I need it, the slower I'll become completely resistant.

So, now for the numbers: My weight is stable at 132.7lbs. My lung function is up all around and closer to my baseline, at 85% today. Of course, I'm greedy and would like to see them closer to 90, but 85% is about right for what I'm feeling right now.

Today, I asked the RT to record me doing a PFT today. These are the tests that I do, at least three times, each clinic visit to determine my current lung function. For people without CF, "normal" lung function is between 80-100%, so technically I have "normal" lung function...just have to do lots of treatments to keep it that way. Anyway, I know CFers often put a lot of pressure on themselves during these tests because they tell us our next plan of action and overall health. Follow this link which will take you to my Colleen's Friends & Family facebook page where you can view the video. :)

Wednesday, April 5, 2017

Two Months Later

Right now I'm feeling How has it seriously been two months already? combined with Man, this really sucks!

This last month has honestly been harder than I expected, as I posted last week. I've had a lot of moments when I've wondered how far along I'd be with the boys (I rarely bring myself to count it out because that just makes it worse) and how huge I'd be (I can only imagine how bad I'd be waddling now, haha!). I think it's just slowly setting in more that we lost two of our children.

Then I think to myself - when the question comes up of "how many kids do you have?", what am I supposed to say?! If I say 'one', then I feel bad that I'm not counting them as my children because they are/were....but if I say 'three', then comes the explanation and people get awkward and don't know what to say....it's just tough.

That's one thing I've learned this last month especially, please don't feel awkward about my babies! I am so happy to have been able to carry, then see and hold my baby boys, even if it was just for a short time. I love that we were able to see their faces, although it makes me sad that I don't have a picture of them. They are our children and I like to talk about them sometimes. Its OKAY to talk about them and the pregnancy! Please, don't act like they never existed, because they sure were loved by a lot of people! Sure, talking about them sometimes might make me sad, but I've learned that it's okay to feel sad sometimes; I just can't let the sadness consume me -- which I think I've done pretty good about most days. I think about those little guys every single day, and I can't imagine that's going to change, ever. They'll always be our little Butter & Jelly. <3 p="">

Tuesday, April 4, 2017

The Process of Getting Cipro

Thursday: I texted my doctor to let her know I was feeling off. I wasn't quite sure if it was allergies or an infection coming on. The plan was to have her call in a script for Cipro so I could have it on hand for the weekend in case I started feeling worse.

Friday: While at work, I felt like crap! My cough was changing and my sinuses were clogged. I decided I should run by Walgreens and grab the Cipro and begin taking it that evening. Unfortunately, when I got there, they said my doctor never called it in....ugh! So I got in touch with my doctor and she resubmitted the order. I called Walgreens later that evening to pick it up (even if I could just get a partial), but they said my insurance was putting it through mail order - seriously?! Who gets antibiotics through the mail?! How is that convenient at all???
So I asked the pharmacist if there was any way I could just get some pills to last me over the weekend, hoping my Cipro would come via snail-mail Monday. She was able to sell me SIX pills for $24! I had to take them because I knew letting this infection brew over the weekend without the extra antibiotics wasn't going to help.

Saturday: I took my second and third dose on Saturday. My cough was in the cough-constantly-with-no-mucus-production stage and it sucked!

Sunday: Took two more doses today.

Monday: Took my last dose Monday morning before work hoping there would be a package on my door when I arrived home with the rest of my Cipro.....of course there wasn't. This meant that I missed Monday evening and Tuesday morning's dose.

Tuesday: Lots of rattling in my chest, but it's tight and very hard to have a productive cough unless I practically choke/gag. Thankfully when I got home, the full dose of my Cipro was in my mailbox. I'll be starting back on it this evening.

**Moral of the story, MAIL ORDER PHARMACY SUCKS! It's NOT convenient to get a dose of antibiotics in the mail!!!! "Normal people" don't go to the doctor for an ear infection, strep, etc and get their prescriptions four days later in the mail. I just don't understand why this decision was made and who made it - was it insurance? Was it the mail order pharmacy? I suppose I could call both and figure it out, but I'm not in the best mood about it right now and do not feeling like trying to figure it out. All I know is, at least I now have six extra pills (since I had to buy some) from this mailed dose, that next time I feel an infection coming on, I'll be sure to put it in my mail order VERY early!

Friday, March 31, 2017

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!

Monday, March 27, 2017

Current Struggles

I know this blog has focused on our miscarriage a lot lately, but that's just our life right now. Some days are worse than others - some moments are worse than others. These are some things I've been struggling with lately, that maybe I didn't expect to, or have been affecting more than I thought they would:

Last week I attended a PLC (professional learning community) for school about the effects of childhood trauma on the brain. This is something we've been discussing and learning about as a school and district a lot this year to be better supporters in the classroom. Anyway, the presenter was talking about how much the brain develops so much even as a fetus, before a baby is born. She was saying how things like stress in the mother and/or her smoking/drinking while pregnant has a negative effect on the baby's brain and development that could impact them for the rest of their life. It just made me think about how I tried to provide the best prenatal care that I could for my boys, but I still lost them and how that's not fair! How come the mom that drinks and smokes during her pregnancy can have her baby, but I didn't get to have my two boys...after six months of fertility treatments!
I know that life isn't fair. And I know that's just how the world is, but it just sucked a little bit extra that day, in that moment. It's things like this that pop up every now and then, that makes me think of what could/should have been and makes this whole experience hard.

Another thing that's been bothering me lately is that our boys don't have names. When we were in the hospital, after they were born, several of the nurses/staff asked us if we had names picked out, and we didn't. We thought we had another 3-4 months to pick out their names, so we hadn't really settled on anything - we hadn't even had a ton of ideas yet. Sitting in the hospital, trying to wrap my mind around the fact that I just gave birth to my babies half way through my pregnancy, and that they were dead......the idea of naming them just didn't feel right. We didn't have names picked out. How could I sit and name them when I didn't even get a chance to know them?!
But now, I want to. I have thought about their little faces every single day for the last seven weeks. I have put different names to their faces in my head and I want them to have names. I want them to have identities, even though they'll never grow up in our family - they're still my babies. They're still our sons. I don't know how to go about it, and obviously that's only something Tim and I can decide, but that's what's on my mind recently.

Pregnancy. That's what's on my mind a lot! I, honestly, cannot wait to get pregnant again. And it's not to replace the babies we've lost, but to grow our family the way we've always wanted to. I've written an entire separate blog post about this topic, that I'll share at a later date (no, I'm not pregnant), but it is absolutely something that is on my mind all the time.

Announcements of pregnancy & newborns. It seems like my entire Facebook feed has been filled with positive pregnancy tests, announcements, bump pictures, birth announcements and monthly photos of adorable little newborn babies! And maybe it's because I'm just a little extra sensitive right now, but I just can't handle it!

"I'm supposed to be posting the bump pictures. 
Today is Wednesday, that was the day we took the pictures.
I wonder how giant my belly would be today?
How far along would I be now?
We're supposed to have three kids.
Are they scared to share their news in case something happens? 
Why did my boys get taken away?
I wonder what they would have looked like."

Dreams. I've been having a lot of dreams recently about having babies, being pregnant, etc. One night I had a dream where we had a 4-5 month old son and while I was playing with him & feeding him, I couldn't remember his name or if he had a name. Then he was in an exersaucer, leaned forward, fell out and bumped his head. When I picked him up, he started getting smaller and eventually looked like Baby A. So I started nursing him, and he was back to his normal size and was totally fine. (WEIRD!)
Last night I had a dream that I was pregnant again, with one baby. I couldn't bring myself to find out the gender, I wanted to be surprised. But then someone looked at the screen during the ultrasound and said, "wow, yes, I can tell", and immediately I knew we were having a boy. I got so excited because we would be able to use the clothes that we bought, and still have, for the twins.

I'm guessing this is just the way my mind is working through not having our sons, but my heart still wanting them. I will always wonder how our life would have been different. I am not posting these things to make people feel bad for me. I'm not looking for your opinions on baby names or when would be the best time for us to try to expand our family again. I'm using this as a form of processing for me, and sharing my experience with others so that they can learn from or have someone to connect with if they've gone through something similar. This is real life for me. I don't ever want to forget the two little boys that were supposed to join our family this summer, and this is the way I'm choosing to grieve and process.

Monday, March 6, 2017

One Month Later

Yesterday marked one month exactly since I miscarried our twin boys at 19+4 weeks. I'd have to say that Tim and I have been doing pretty well all things considering. Anna has been a fantastic distraction, and I don't know what/how I'd be doing without her!

Every day is different. Some moments I feel like I was never even pregnant because it was here and gone so fast. Sometimes I so look forward to the day I'm pregnant again. Other days seeing pregnant women makes me angry and jealous. I think a lot about the future, mostly about this summer. I was supposed to have three kids, not just one. The way I thought my summer was going to go is completely different. I try to think about the positives - I get to spend so much more time with Anna than I expected, especially before she starts preschool - but it still makes me sad because we were supposed to be expanding our family this summer and that's not going to happen.

I spent a lot of time last night allowing myself to remember our boys. I think about them often, especially with the perfect necklace I wear from our friends Kristen & Ryan. It's the perfect little reminder of my guys every day. I often think about them quickly and either get distracted by life/work/family, or find a distraction as not to dwell on the sadness of everything. But last night, I allowed myself a couple hours to really think about them and how much our lives have changed. I read posts and stories of other moms who have gone through similar situations. I decided to join a couple local SHARE groups to connect with other women. I shared the story of our boys and allowed myself to be sad for a while.

I keep coming back to a post I read the other day on a blog called "Scary Mommy". It discusses how women tend to have to grieve on their own when they experience and earlier miscarriage and how society doesn't know how to handle or talk about miscarriage even with it being so common. Now, obviously we are not grieving alone and this did not happen early for us, but there were several lines in her post that connected with me:

"You didn’t stay very long, but it doesn’t take long to become part of a family. And for the short time you were with us, you made us a family of four. You made us so, so happy."

"I am sorry you didn’t get to stay longer. I am sorry my body betrayed you. I am sorry that you did not get to grow. I grieve for the future that I had planned for you in that short amount of time. But I am so glad that I knew you, even for the briefest of times. And I will never forget you, little one, not ever."

"... there is no line graph where the love you feel for life inside you increases with the number of weeks it gestates. Pregnant is pregnant. Loss is loss.
Miscarriage isn’t just a loss we feel emotionally. It happens to our bodies, inside of us. We experience it physically. "
"While I have physically and emotionally healed from my miscarriage, I will always remember the life that could have been. I will never forget his due date nor the future I had imagined."

I will always think about what could have been, but I will not dwell on it. As time goes on, I will never, ever forget our two little boys. But our family will become stronger from this and we will move on to be better versions of ourselves.

Monday, February 20, 2017

Second Week - Recovery

Another week down, yet it feels like it's been forever. This week has been a bit easier, but I still think about both boys all the time. I've been playing a lot of "what-if" scenarios in my head this week: What if I knew my water broke? What if I didn't go to my CF appointment? What if I had gone in to be checked just one more time?... I don't like thinking this way because I know that there was absolutely no way to change the outcome of what happened, but sometimes I just can't help but think about it. I think these thoughts will always be in the back of my mind, and I'm looking forward to the days when they don't pop up frequently.

On a brighter note, going back to work felt so good - way better than I expected. In my last post I talked about how I was nervous about how the kids would react, or if things would be weird. Nothing weird or awkward! The kids were just so excited to have me back, I honestly bet half of them forgot why I was even gone. I did get several hugs from kids (and a few from adults) and felt so welcomed back! Everyone was extremely positive and sweet. Thursday, it felt so good to be teaching again. I remember thinking during a lesson, "This is where I'm supposed to be. This is what I'm supposed to be doing." Friday, I got to work and was full of energy. I cleaned and organized my room, rearranged desks, entered grades, sorted papers....all while I was supposed to be at a meeting - oops! Oh well, no biggie. :)

It was nice having a three day weekend, with gorgeous weather, to spend time with friends and my little family. Tim, Anna and I were able to enjoy lots of time outside this weekend which was so fun. It's tricky because I'm glad that I was able to go for a long walk with them this weekend, but it also made me a little sad because I'm not huge, pregnant and waddling like I expected to be. There are little moments like these that pop up day to day where I think to myself, "I wouldn't be able to do this if I was still pregnant." Sometimes I feel like I was never pregnant, but it's times like these where I remember that I absolutely was and those little guys were a part of our life, even for that short amount of time.

I try really hard not to dwell on the what-ifs and that "this would be different if I was still pregnant" moments because I cannot do anything to change what has happened. I don't want to surround myself with negativity and stress - that's not going to help this healing process AT ALL. I feel that both Tim and I have been dealing with everything and beginning to healing really well. We've had some wonderful talks, we've been really positive about everything and it's been great having him throughout all of this over the last couple weeks. I had no idea what to expect or how I'd handle this whole situation two weeks ago, but I really do feel that we've both come a long way and I'm proud of how we're handling everything. I'm sure there will be many tough moments ahead (their due date, this summer, milestones, holidays, etc), but I know that we are strong together and we can make it through. :)