Forward March

It's time for a little update :) Things have been up and down around here lately. Every time I drop down to a low note, I say a little prayer to be saved by Jesus. He never fails me! Nonetheless, it's a daily struggle walking the path I have been given.

Insomnia continues to be an issue for me. I didn't sleep a wink on Christmas Eve, and last night I had a restless sleep. Every little distraction had me looking at the clock just to see that time was crawling by. I drifted in and out of a light sleep in between. I have been grinding my teeth at night and wake up with tension headaches. I had a dream last night that I went to lunch with a childhood friend of mine. She is pregnant, and in the dream she started to tell the table about a complication with the pregnancy. I instantly started sobbing as I jumped to conclusions fearing the worst for her and her baby. She reassured me that it was nothing like that, but it just showed me that my subconscious is still working on this fear of mine.

It is very difficult for me to be around friends and loved ones who are pregnant. A small, small part of it is the sting of jealousy, but mostly it is the consuming fear that their baby isn't healthy. I know that once their babies are born and I can see that s/he is healthy, I'll be fine. But pregnancy strikes on a nerve for me and is a painful reminder of a weakness in my faith. It is an aspect of the "seeing is believing" that I have a hard time putting aside. It worries me for the future as I think about the possibility of becoming pregnant again myself.

I try not to get too far ahead of myself and play the "what if" game. Thinking about all the possible outcomes... it's overwhelming. And yet there is a part of me that believes that I will be able to joyfully go through a pregnancy if I should be blessed with one again. One thing is for sure: we will celebrate EVERYTHING if we have the chance again! Pregnancy announcements, gender reveal, baby shower, we will embrace it all. The next day isn't promised, so you have to live in the moment and love what you've got. And we will! One of my biggest regrets is that we canceled Rosa's baby shower... sadly, she was stillborn the exact day we planned her baby shower. I look back now and wish that we had rescheduled it to earlier in the pregnancy. It breaks me up knowing that we didn't celebrate her in that way. She deserved it, and we failed to give that to her. I don't know how, but I'll find a way to make it up to her.

In other news, John & I had been going back and forth on testing our frozen embryos. It's expensive ($5K!) and we're not sure how the future will go. If we do not have a take home baby amongst our four ninja squirrels, then we're going to look into adoption in 2017. Should we save the $5,000 to put towards a potential adoption? Ugh. It's so hard to know which way to go! John wanted to save the money and was also afraid about the risk to the embryos in the thawing and refreezing process. I wanted to test the embryos because I think it's worth every penny to have that peace of mind if we do have a subsequent pregnancy. A few weeks ago, John said that he was willing to do the testing even though he didn't want to. I was hung up on him agreeing with me, so we "slept on it" for the next few weeks (I am laughing because of the irony of him snoring while I lay awake with insomnia!). After a beautiful Christmas Eve mass, I was able to pray on it and then had a beautiful moment of clarity. It was like Jesus was born into my heart to answer my prayer: TEST THE EMBRYOS! I don't need John to agree with me. If he agreed with me, then it would be easy. But the fact that he doesn't agree, and is still willing to put his fears aside to make me happy is the ultimate sign of his love. We decided on Christmas morning that we will indeed have our embryos tested. We are going to dedicate 2016 to seeing these four embryos through. We are 100% committed to them and invested in them.

I have a few appointments coming up that are important: we finally got on the schedule for a preconception visit with our new MFM. That's on January 6th. The next day, I have my hysteroscopy. All I want for Christmas is health & happiness for myself and my babies. So here's to a healthy uterus and four healthy embryos! And Rosa & Robin smiling down from heaven as they wait for us!

"The Plan"

It's been a while since I've been on here with any regularity... life has been beyond description. Anxiety, depression, confusion, happiness, joy, hopefulness, hopelessness... the emotional palate has been comprehensive and rich with depth and intensity. It is difficult to keep up with it all, so I have been staying off the interwebs in an effort to salvage my sanity :) I feel like I'm in a good spot, so here I am with a little status update!

Physical Health
At my last rheumatologist appointment, the doctor kept using the word "lupus." Here's where a lot of confusion has always set in: the doctors have always said that I don't have it, but that they're keeping me on their radar. Well, my head started spinning, and finally I interjected and said, "Do I have lupus?" The doctor explained that my C3 is low which could possibly be the Sjogren's, but she suspects that it is lupus activity :( She said that I am flaring right now, so I am on a course of prednisone. Hopefully, that will help to clear things up. Since then, I have been taking into account all the symptoms I've been feeling... muscle pain, muscle stiffness, joint pain, fatigue, brain fog... It is scary to think about where this could be heading, so I've been redirecting those thoughts so they don't get away from me.

Emotional Wellbeing
Things have been tricky in this department. All of my scars from the past.... infertility and loss have really taken a toll on me. Add on top of it that we're still dealing with infertility along with autoimmune diseases... it's a lot to manage. I feel like I'm in a good spot at the moment. I've been working really hard to untangle the mess and to try to find some form of balance in my life. Hopefully I'll be able to keep it up :)

"The Plan"
I am on CD15/1dpo on our last natural cycle before we get going again. We tried our best with the hopes of a spontaneous conception, but we are keeping our hopes in check with reality. Let the record show that we are open to the miracle if that should be the way we are to go :) But at the same time, we have a plan for our next FET, and that gives me a lot of hope. That is my anchor right now. Here's the rough timeline of "the plan."

• 12/19 - CD1, call my nurse
• 12/21 - CD3, blood work to establish baseline, start BCPs
• 12/29 - hysteroscopy, cross fingers that this is simple and smooth!
• 1/22 - come off BCPs, start FET cycle
• 2/12 - meet one of our ninja squirrels :)

I'm sending lots of love & light out there for anyone who is reading this! Take care of yourselves!!

Xoxo
Cici

Letting Go

I realized something very important this week. My heart is broken. That much is obvious and expected after everything I've been through. But I realized that life as I had dreamed it is not what it is. I had been fighting so hard to make it into what I thought it should be.... I've only been hurting myself and the ones I love by resisting so hard. 

Life as we know it is not the way I dreamed it. And I realized this week that it's okay. I am okay. 

I am done planning ahead (within reason of course!! I do have a job to keep after all!!). It is one thing to plan for the weekend or a big race (coming up soon in November!! Yay!!). But to plan on things that I have no control over? Silly Cici. That's not your job to do. 

What will I do instead? I'm going to love the life I'm living instead of lamenting the one I wished I were living. 

I admit, it is hard to let go. I can actually feel a little tug on my heart as I type this. But I know what is best for me. 

I had a moment today. I was looking at a picture of those tiny little toes... They are so perfect and loved. And then the words and tears started spilling out of me...

Dear, sweet baby, I love you so much, really I do. But I love myself too, and right now what you're doing to me is not good for me. I have to let you go. And I don't want to let you go, but if I'm going to save myself and live a happy life, then I have to. That doesn't mean I'm going to stop loving you. I never will stop loving you. But it's time I started loving myself first. I know you want me to be happy. I know if I let go that you're still with me. I will set you free and by doing that, I will set myself free. I love you more than you will ever know. Until we meet again, sweet child, fare thee well. 

Love always and forever, 

Your mama 

Xoxo

New Seeds

This little diaper bag caught my eye this afternoon. 

I bought it when I was about 14 weeks pregnant with Rosa... How I wish I could put all of her stuff in it, strap it to my back, bundle up little Rosa and put her in her carrier on my front, and show her the world. Sigh. That is a dream that will have to wait until heaven to come true. 

Next, I looked over at the shelf to the left. 

I took in the sight of all the precious items on the shelves. The photograph of my grandparents on their wedding day, Rosa & Robin's transfer day picture, Frostie Ninja's memory box, all the full bins of medical supplies and medications... And then I noticed the three purple flower pots in the basket on the middle shelf. With the best of intentions, I planted some basil, parsley and cilantro seeds last fall. I did better than I expected, but as Rosa's health declined so did my attention to my little seedlings. 

It was sad seeing my dried up dreams along side the cracked soil. I took the basket outside and cleaned out the old dirt. I put fresh soil in each of the pots. Then I planted new seeds... Wildflowers. I do not know if they'll take root, but there is only one way to find out: you have to try. 

As I took in the sight of my small act upon the shelf, I felt proud and hopeful. When I stepped back, I realized just how meaningful this little task of mine was... It symbolized more than I can type out here in this moment... 

So I'll leave it to your imagination to decode it. I'm sure you know exactly what I'm thinking....

Rosa & Robin, mommy thinks of you every second of every day. I love you more than you'll ever know. Keep each other company until I'm there in heaven at last to hold you and kiss you. 

Frostie Ninja, come back to me... I miss you and love you. I don't think our time is over just yet. I believe there is more for us to do here before we can go be with your brother and sister in heaven. 

My four little seedlings waiting for us, I love you so much and we still have yet to meet. We are doing everything we can to give you the best shot at life. I pray everyday that you are healthy and that you'll take root in my womb and in our lives when the time is right. 

Love always, 

Mommy 

Xoxo

Frostie Ninja 💜

AW: We opened the envelope 😊 Results are at the bottom. Scroll down if you can't wait!!

In February 2014, we did our final egg retrieval with my eggs. That cycle produced the one and only blastocyst from all of my cycles. We participated in the SUMMIT study at RMA, so our precious Frostie Ninja was CCS tested. We found out that s/he was chromosomally normal a few weeks later and began prepping for our transfer immediately. During the nine weeks from ER to beta, I fell in love with my baby more than I had ever imagined possible. I "visited" him/her every day by doing my meditations in my clinic's parking lot, playing music from my car stereo, sending so much love to him/her. Our hearts broke on April 22, 2014 when we got the dreaded call from my nurse: beta was zero. I was not pregnant. 

At the time, we decided not to find out the sex of the baby even though the information was available to us on our CCS report. We had hoped to be surprised on Frostie Ninja's birthday, and with that dream shattered we thought it would be too painful to find out. 

Over a year later, so much has happened, but my love for Frostie Ninja endures. Losing Rosa & Robin has only made me miss Frostie even more. We went through quite a drama to find out the sex of Rosa Kimberly. We feel in our hearts that Robin Kay is a boy, but we will have to wait until we get to heaven to find out for sure. Frostie Ninja was a mystery until this week when we decided to open the envelope. 

Throughout my time with Frostie, I imagined the perfect blend of my DNA with John's. Frostie would have my bouncy curls, artistic streak, and athleticism. S/he would have John's twinkly eyes, irresistible dimply smile, and sense of adventure and wonder. Boy or girl, either would be a miracle to us and welcomed into our hearts and lives. When we had to say goodbye, I wrote a letter to Frostie. I envisioned him/her as a little girl in this image. 

Over the past few weeks, I have been getting signs that Frostie was a boy. Blue and yellow butterflies literally surrounded me, one even landing on my shadow's heart during a hike at the very moment I was talking about him/her with my best friend on the trails. 

Two weeks ago, my nurse at RMA looked up the results from Frostie's CCS testing and put them in an envelope. This past Monday, John & I felt ready and opened it at the cemetery with Rosa. It was a quiet moment of excitement. When I saw the single word through the trifold paper, I couldn't help but to smile. I gasped and John and I embraced in a long hug. I felt and still feel so happy knowing ❤️

I love you, Frostie Ninja. I pray for you to come back to me every day. Until you do, I hope you have found your brother and sister in heaven. 

Frostie Ninja is male 😍

Consult #3

Today we met with Dr. S, a new-to-us RE within our current practice (our former clinics merged back in April). It was a good move on our part to get a fresh set of eyes on our case. She really seemed to take an interest, and was genuine when expressing her condolences for our recent loss.

I liked her a lot. She listened to everything we had to say, answered our questions honestly and professionally, and overall had an excellent bedside manner. She offered to reach out to the other doctors on our team, including my rheumatologist and the MFM doctor from CHOP. When I mentioned that the genetic counselor from CHOP would be willing to consult regarding our frozen embryos, she was very pleased to hear that and said absolutely they would work together. I really that she is willing to go out of her way to help us. We are a bit complicated and puzzling, so we really need doctors who are willing to work together and think outside the box.

We reviewed our history and past protocols. As I expected, she was open to all of the medications I was on with the exception of the high dose of Prednisone and the use of IVIG. All the other medications and supplements were fine by her.

She recommends a diagnostic hysteroscopy prior to a transfer and testing our embryos. The hysteroscopy is a no-brainer. Testing the embryos to me is too, but John is afraid about the risk of losing viable embryos in the thaw and refreeze... Dr. S said that the survival rate at their lab is 97% for the first thaw, and then the second thaw would go down to 95%. She said that usually the embryos that don't survive are not good quality... our embryos are of very good quality. But still, I can see John's hesitation because someone has to be the unlucky 5%. We have proven to be the unlucky percentage almost every time in the past... is it worth it to take any unnecessary risks? I don't know if I could proceed with a pregnancy knowing that the embryo had not been tested... That's something we'll have to think about before making a decision.

Dr. S recommends waiting at least six months postpartum before transferring another embryo. She said given our history, we could transfer two embryos if we wanted, however she'd feel more comfortable with a single embryo transfer. We agree... as much as I have always dreamed of being a twin mama, it is not worth the risk to our precious babies. Besides, I already am a twin mama... Rosa & Robin made it so <3

I asked if she had any recommendations for my diet & lifestyle. She referred me to the nutritionist, so we'll schedule a consultation. She said that running is not a problem for a future cycle nor a potential pregnancy. I like that very much. VERY MUCH. I can't begin to tell you how important it is to have the option to go for a run through all of this... I need to feel like myself in order to keep my head on my shoulders.

I asked her when my period should return. I'm still not sure if the bleeding I had 5 weeks postpartum was my period, and even still, it has been 32 days since that bleeding. She said that right about now is when I should be getting my period again, and then said she'd do an ultrasound and blood work to see where I'm at in my cycle right now.

The physical exam showed that I have high blood pressure (what the what?! 138/82... so out of the norm for me). I gave blood and urine samples for testing. My weight has gone up 5 lbs (which to this marathon runner is a win! I know it's the muscle mass that I've gained over the past several weeks of training). The ultrasound showed possible calcification in my uterine lining. And, get this, my lining measured 9.8mm and was Type III. NEVER in all of my documented cycles has my lining been that thick. I know it doesn't bear any significance, but I am kinda proud of that. My ovaries are doing their typical thing. Righty had 6-8 follicles measuring under 10mm and a 22mm cyst, Lefty had 4 follicles measuring under 10mm. The cyst might mean that I ovulated. We're waiting for blood results to see what's what. Depending on my blood work, I will probably be prescribed Provera to induce a period. Then I'll go in for another baseline on CD3 to see what's going on with my uterus.

The final question we asked was to look up the sex of Frostie Ninja. We had him/her CCS tested after IVF #3. S/he was normal, but we didn't want to know the sex at that time. Now, I think we're ready to find out. Though, I have to say, I am a little nervous to know. I have a gut feeling, but what if I'm wrong? I have been operating under the assumption that Robin was a boy. We won't know until we get to heaven... if I was wrong about Frostie, then it'll make me wonder if I am wrong about Robin too. I hope I am right!!

Raw

I scream until my voice is raw. The tears in my eyes don't flow anymore. I guess I cried them all out. Either that, or the Sjögren's is mocking me with my chronic dry eyes. 

There is no way to describe this pain. I am exposed, and there is no shelter. I begged God to take me today. The hurt in my heart is unbearable. He did not answer my prayer. Like so many prayers before, this one went unanswered. 

Just when I think I have healed a little bit, something happens to rip away the scab. My wound is raw again, gushing. 

Rosa's EDD is on Tuesday. I am unraveling because of this. Not that I had it together to begin with. I miss her. And I miss Robin. I miss my babies.