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:

Bloomington info:

*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.