Remembering Our Children

(Un)Fortunately, losing our children has brought my sister-in-law, Katrina, and I a lot closer over the last few months. There's no pain like it, and someone who's never lost a child will never know the feeling. Even with our stories being so different, we've been able to connect through our heartache.

Katrina lost her daughter, our niece, Alayna in September 2016 when she passed away in her sleep without an explanation. I had no idea what to think, how to feel, or what to say to Katrina to even begin to understand how she was feeling or what she was going through. In fear of saying the wrong thing or bringing up sad emotions, I tried to give her space, but really, that was one of the worst things I could have done.

When the boys were born in February, Katrina and I started talking a lot more. We could grieve together. I could tell her how I was feeling without being embarrassed because she had been there. We had a lot of good conversations and she really helped me deal with the mess of emotions running through my head!

As we were talking, the topic of tattoos came up. We both expressed how we've always wanted one, but never had a "good enough" reason to get one. Neither of us thought this would be our reason, but that's just the way life works out sometimes.

I've been so worried over the last month that one day I'm going to forget about my babies. I know we only had them for such a short, short time, but I still carried them and they left a HUGE impression on my heart! I don't ever want to forget about our two sons. When I first saw their tiny little footprints in the hospital, I thought about getting them as a tattoo so that they'd always be with me. I didn't think I'd ever do it, but it hung in the back of my mind.

Then Katrina and I started talking about getting tattoos for our children, and the idea started becoming a reality. For the last almost two months, we've been planning this weekend. We planned to get tattoos together to remember the sweet babies/child we lost. Then, we'd walk together, with our families, to support Annie's Hope which is an amazing organization that helped Katrina's family through their grief after Alayna died.

I felt like this would be a nice thing to do together to honor our children. So....we did!

On Friday afternoon, Katrina and I went to a local tattoo shop in her neighborhood and retold the stories of our babies to the cool piercing guy while we waited for our artist to get ready. Everyone in the shop was super nice, and we were both super nervous! Our artist, Toph, was very considerate of our wants, and was very patient with me when I was picky about my placement. Apparently my tattoos are technically upside down, but it's what I had been picturing in my mind for the last two months, and he was so sweet, and did it for me. :)

I was so worried that it was going to look terrible and that I was going to be stuck with it for the rest of my life! I am VERY pleased to say that I LOVE the way my sweet babies' feet turned out and I am so proud to carry them with me forever.

Baby A is on my right wrist and Baby B is on my left wrist. I chose these places specifically because that's the side I held them on when I held them together in the hospital.
The artist did enlarge them just a tiny bit so he could add a little more detail, but they are very close to true size and are almost identical to the tiny little prints we brought home from the hospital. They're absolutely perfect!

Katrina got a mother-daughter tattoo to honor and remember Alayna. She went back and forth for a long time on the style and placement, but I think she picked the most adorable and sweet tattoo! I absolutely love the way it turned out, right down to the bow that Alayna would always wear!!

It was such a special way for us to work through the grief and heartache we've been feeling, and will continue to feel. But now we have these beautiful, special tattoos to always remember that we are mothers to these children, too, even if they're not with us anymore.


Saturday morning, even through the pouring rain, we attended the Walk for Hope. It was full of positive, uplifting people there to support one another going through grief of a loved one. The kids loved walking through the rain and giant puddles - Anna had so much fun! This is one weekend I'll never forget, and look forward to many more walks to remember Alayna.

I wish this wasn't so blurry, but it was really hard taking pictures in the rain with a wet phone! We did a balloon release before the walk and this is Anna carrying Alayna's balloon :)

Nothing better than running & jumping through the puddles!

After!

Love this because you can see the rose on the back of her shirt & her matching rose bow made by Katrina :)

Family selfie...sort of....in our Team Alayna shirts

All of Team Alayna, smiling big despite the rain!

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.

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. :)

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="">

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!