Rosa's Rose

**trigger/tissue warnings**

Well, I just ugly cried at Micheal's. 

My sister is a talented artist, so I gave her one of the handprints Rosa made at the hospital. She drew a gorgeous pink rose, used the green handprint as a leaf on the rose, and wrote out Rosa's full name in fancy script. It is breathtaking, and it was her Christmas gift to us this year. I cried on Christmas Day when I opened the gift, and have been waiting for a sale so we could get it custom framed (expensive!!!). There's a 60%+20% going on at Michael's this week, so I jumped on it.

I did a little shopping before heading back to the framing counter. I wanted colored pencils for my coloring book, and wanted to get a gift for my niece's birthday. I passed by the aisle with memory books... the baby books were on sale. Deep sigh.

After I got everything I was looking for, I went back to the framing counter. The young lady at the desk was very nice and helpful. I showed her the artwork, and she helped me to pick out a few options. As she was pulling samples, my eyes locked onto the artwork. I could not control myself... The tears just started flowing at the sight of the gorgeous piece. And the thought that this is my reality for Rosa. I don't get to fill a baby book for her... I get to make memorial pieces and mount them in fancy frames. I should be, and am, thankful that I have this beautiful piece of art... But it's just not enough sometimes. I want her. I want Rosa. I want to stroke her soft cheeks, and trace a heart on her face with my finger like I did at the hospital. I want to see that face grow up, and light up with a smile. It's just so, tragically, heartbreakingly unfair.

The framed artwork is going to be magnificent. I picked out the most perfect frame and had it triple matted. Even with the sale, the whole thing cost $260. I don't care about the dollar amount, though wouldn't it be nice to spend it on diapers instead? Sigh. I miss her. I will post a picture of the finished piece when it comes in on February 26th.

God's Delay is Not God's Denial

Good morning, Blog Stalkers :)

I had my surgical hysteroscopy yesterday with Dr. B. All things considered, it went well. My septum was resected, and I had a D&C. I was anticipating a 4 week recovery to heal my lining, but woke up in disbelief and tears asking the nurse if it was true that Dr. B said two months. I don't remember speaking with him, but she confirmed that was indeed what he said. I couldn't stop the tears from flowing. Another delay!! It's just so hard to be patient after going through everything that we have. 

When they moved me into the second recovery room, my husband joined me and without saying a word, he already knew how I felt about the two month recovery time. He is bummed too. He told me about his conversation with Dr. B, and showed me the pictures from my surgery. The reason for the additional time is because the section where the septum was removed is supposed to be smooth. It's not; the texture is fibrous and rough. So he is recommending two cycles before we proceed with our FET. 

I sulked the rest of the day, and woke up feeling better. I still have some moderate bleeding and cramping, but nothing out of the norm. I did have a strange reaction to either the anesthesia, my autoimmune system being in shock, or anxiety. Starting about 10:00 last night, I had tingling in my hands, arms, feet, and legs. It has eased up, but I still feel it in my feet. I will tell my RE or my nurse when she calls today, and I'll tell my rheumatologist at my appointment on Tuesday. Weird!! 

Snow Day Tears

**possible tissue warning***

My husband & I were eating lunch and talking about the snow storm. We are snowed in, not a plow in sight, and it's still coming down hard. Good thing we have nowhere to be! We are enjoying a warm, cozy day inside relaxing, cooking, and coloring. The conversation was light and merry until he brought up the snow storm from March 5th... and then the flood gates opened up for both of us. 

March 5, 2015 was the beginning of the end for our dear, sweet Rosa. It goes down in my personal history book as one of the worst days of my life. It was two days before my birthday, the snow/rain storm caused flooding in my house, and we were first learning of Rosa's fatal diagnosis. 

All it took was one little mention of that storm to bring back all of the horrible memories that we've both been holding in... 

How I miss my darling Rosa & Robin. 

Thaw, Biopsy, Refreeze

Our four little ninja squirrels were thawed, biopsied, and refrozen today. Dr. S said they did beautifully, and all four survived. Now we wait about two weeks for results. PRAYERS!!!!!!

Dr. S also said that she looked over my films from my hysteroscopy and saline sonograms. She and another doctor discussed my case and decided it would be best for me to have another hysteroscopy to have my septum resected. She said that she's being overly cautious and that there's a chance that they'll get in there and decide to leave it. Given our history, she is being extra thorough to make sure there are no stones left unturned. Fine by me! Make sure everything is perfect before we give it another go! 

Getting Ready

I'm happy to say that I'm in a good place these days. It hasn't been easy, but with a lot of dedication to my self-care & sleep hygiene, my anxiety, depression and insomnia have been under control. Dare I say that I've felt "normal" and like my old self lately? Maybe that's not entirely true, losing Rosa & Robin has changed me. They made me a better person, and the old Cici is never coming back. I miss them so much, and think about them everyday. 

I have been meditating daily with the Calm app. It's really great & I highly recommend it! I have also been coloring, making daily entries in my gratitude journal, praying, running, reading, and doing yoga. It's a lot of work to keep myself balanced, but it is worth it!

My first week back at work was a success. Even with four doctor appointments scheduled, I was able to keep my stress level under control. I felt a little blue on Tuesday, but I managed to complete my tasks for the day. I went for a run after work and rang the bell at my church. I have no idea why the bell is there, but my husband and I have made it part of our Sunday ritual to ring it twice after mass. One ring for Rosa, and one ring for Robin. 

Now about those doctor appointments: my rheumatologist gave me clearance to do my FET cycle. The prednisone did a good job of getting my blood work back in line. She said that now that the Sjögren's and (possible) lupus are well controlled, it's a good time to get pregnant. Fingers firmly crossed!!

We had our preconception consultation with our new MFM. It was a very emotionally draining appointment. I cried through more than half our time with the doctor. It was so upsetting to hear his explanation of Rosa's fetal demise. We were grateful that he took the time to explain it to us, and now have a better understanding of why she died. But, oh my aching heart, it's just so hard to dig up all those painful and helpless feelings again. The doctor said that her demise was entirely fetal and not maternal... In one way, it gives me hope that I will be able to carry a healthy pregnancy in the future, and relief that my body didn't attack or harm my daughter. But in another, it just makes me so, so sad that Rosa was so sick. It doesn't compute in my head anytime I try to apply logic. She was so pure and innocent. How could her body have been so flawed? 

The doctor said that Rosa's condition was genetic, although it was something that isn't screened for in standard testing. Her placental analysis doesn't show any genetic abnormalities, and if we had done an amniocentesis or CVS, they both would have come back normal. Apparently, there is a test we can do for our embryos, but it's considered "experimental" and not covered by insurance. We could never afford to do it, so we're going to have to hope and pray that our four embryos are ok. The doctor said without anymore information, he can't give us a reoccurrence rate other than anywhere from 1:10,000 to 1:4. Just the thought of going through another pregnancy like Rosa's.... I can't think about it too long. It's too scary. This is the part where I remind myself that doctors are not God. I will continue to pray on it and have faith that God will see us through. 

I had my hysteroscopy on Thursday, and it was rather uneventful. My doctor called me today to check on me & to see if we're ready to proceed with our cycle. We are just waiting for results to come back from my endometrial biopsy and embryo testing, then we are ready to go. She wants me to go in on Tuesday for a saline sonogram to look at my arcuate uterus one more time just to be certain that the septum isn't going to cause any problems. I appreciate how thorough she is being with us. 

That's pretty much it for now! I'm still on the pill (blech!) and just getting all our little ducks in a row. 

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