The Final Countdown Is On

I have an app on my phone that has a countdown for significant days and also shows days past since big days in my life. I first downloaded it when Sam proposed last July. I checked every day just to see the days getting smaller leading up to our wedding. Then when we got pregnant I put in my due date. I loved watching the days since we'd married getting bigger and the days until we met our child getting smaller. Then on May 8, when we learned about our Mary, I stopped looking at it all together. Yesterday I decided to open it. It was a little overwhelming the numbers I saw. I looked at the numbers for a long time and everything hit me so hard. I can't believe how much life has changed in such a short amount of time! Here are the numbers as of today. 

First met the love of my life: 637 days ago
Married the love of my life: 197 days ago
Days until we meet our precious Mary: 76 days

I cannot believe it! 76 days is just too soon! The scary thing is that most doctors (and I'm starting to agree now) that Mary will come sooner than our due date. 76 days sounds so close. I can't believe it. I think about the last 197 days of my life and I am overcome with all the extreme emotions I have felt. We have had the best and worst days of our lives together. In 197 days of marriage, Sam and I have experienced things most couples will never had to deal with. As sad as I am that the days are getting smaller, I am overwhelmed with a thankful heart for 197 days with Sam by my side and with our Mary. On hopeful days I think 76 days until we get to meet our perfect daughter and hold and love her. On sad days, I think less than 76 days until we say hello and goodbye to our perfect daughter. Such a weird place to be. I can't imagine not being pregnant anymore. I can't ever remember what it feels like to be healthy and not pregnant. It has been a very rough journey on my body, but I don't want it to come to an end. I don't know what we are going to do when Mary isn't with us. Sure, she isn't really with us, but yet she is. Our lives are centered around our little tiny baby. 

I haven't felt her anymore since that day last week. It makes me thankful for that moment of feeling her move, but then it breaks my heart. All I want is for Sam to feel her move. I want to feel her moving inside of me to remind me she is still fighting. Sure, we listen to her heartbeat daily, but feeling movement helps make everything more real. I pray and pray and pray for all kinds of things for my daughter. The most simple of all, I want to feel her move. Sam is patient and reminds me she will move if and when she is big enough and strong enough. 

Wednesday is our amniocentesis. To say I'm anxious about Wednesday is an understatement. I am dreading getting a substitute for my class. I am dreading writing lesson plans. I am dreading seeing the needle. I am dreading the anxiety that is continually building. I am dreading a lot. BUT... I have to remind myself that we will get answers that will help us make big decisions for Mary's future. We will get answers and a diagnosis. We will be able to accept things because we will know. Please join us in prayer today and every day leading up to Wednesday. Pray for peace for us and our relationship, pray that my anxiety doesn't get the best of me, pray that Sam is able to not pass out from seeing the needle, pray that Mary is in a good position and that I still have enough fluid to do the test. The biggest prayer of all is that my uterus is able to relax after the procedure and that it doesn't lead to labor. I have been able to trust God completely through the whole process this far, I must remember to do so on Wednesday as well. Sam and I are both off for the day. After we are done, we will spend the day relaxing and being calm, focusing on our Mary. 

I will try to update as soon as we get some answers. If everything goes according to plan, we should have the preliminary answers on Thursday or Friday. The complete mirco-array DNA will take 2+ weeks. I am hoping to feel relief with answers. Even if it's Trisomy 13 we will have answers. I can plan to feel one way, but when the call actually comes...who knows. Trusting God will be put to the challenge again. Thankful to have Sam by my side (as always)....especially this week. 

To end on a positive note, below is a "sneak peak" of our maternity pictures. It was a very emotional day, but I know I will be so thankful for the pictures! 

A Week Of Never-Ending Appointments

I am happy to say that we survived our crazy week last week. It wasn't nearly as brutal as I was expecting it to be. Was I completely and totally exhausted physically and emotionally Friday evening? OH YES! I went back to work last week. I was both looking forward to it and dreading it. I don't know why I was worried; it was so good to be back. I am so blessed to work with the best staff around. They supported me and loved me through the whole week. I have to admit, I loved talking about Mary so much. Kids come tomorrow. Prayers are surely appreciated. I have a big class this year, full of kinders! I am so excited but also worried about getting tired. I don't know why I worry, everything always works out!

Last Monday we had our appointment with the perinatologist. She has been following us very closely and monitoring Mary. We also had another ultrasound (which I always love)! As usual I am in great spirits when we get there, and by the end of three hours I am in tears. This appointment was no exception. I ugly cried. I always go in with such hope of miracles, and while I can accept that she still has so many abnormalities, I can't handle making choices we have to. After our last ultrasound 4 weeks ago, we had pretty much decided on comfort care for Mary when she was born. After this ultrasound, I just don't know if I can make that choice. It is definitely still the decision my heart is leaning towards, but my mind gets in the way. I feel like if I commit to comfort care that I am "giving up" on Mary. I know this isn't the truth, but its a very real struggle right now. The more the pregnancy progresses, the deeper my love for Mary is. I CANNOT imagine my life without her. I know it's the reality of our situation, but it is so painful. Even though she is still comfy in my tummy, she is the focus and center of our lives. Everything we do, she is with us. I just love her to much. No mommy or daddy should ever be in this position. It's so painful. It really is pretty crazy though, how many lives she is touching. One little baby is making an impact on this world. We love her so much. 

Updates from the ultrasound: She is now 1lbs 3oz. She is measuring at 24 weeks gestation even though I was 27 weeks at the time. Her tummy is only measuring at 21 weeks gestation. Apparently this is very significant. She is so little, but she is so perfect in our eyes. She does appear to have some lung "matter". Could they use a more harsh term? She also has confirmed Spina Bifida. She has the most severe form of it too. It's called myelomeningocele. They couldn't get a good echo of her heart (which leads to my heartbreak over the decision of comfort vs. supportive care). I had low fluid still, but I still had some. The doctor couldn't believe it. Her one kidney is working so very hard. The biggest change though was the significant increase of fluid in her brain. The doctor said you don't normally see this with holoprosencephaly or hydranecelphaly. This makes the doctor think there may be a VERY slim chance all of this fluid on her brain stems from the severe Spina Bifida. The Spina Bifida wouldn't account for her heart condition or her lack of a fully functioning kidney. Every ultrasound there are new and significant findings. We really needs answers. Because of this, we have made the very hard decision of proceeding with an amniocentesis. Now that I am in my third trimester there is no chance of miscarriage, but there is a very, very small chance of it inducing labor. We really need answers. IF this is all Spina Bifida, then we would definitely chose supportive care. This is a big decision we need to know. If it is Trisomy 13, then comfort care will be our confirmed route. We need answers so we know how to best proceed with care for Mary and me from here on out. Our amniocentesis is scheduled for July 29. Please pray for peace and comfort for me (and Sam) as we move closer. To say I am scared is a huge understatement. I have been asked many times if I'm scared to get the "real" diagnosis. NO WAY. My heart has been begging for answers. I don't ever want to give up on her, so if we need to make big changes in our birth plan, then so be it! 

On Tuesday and Wednesday we met with the head neonatologists at both of the hospitals where we can deliver her. It was very interesting to hear their perspectives. We have talked to many doctors, but not any that focus on special babies. Both doctors are incredible. They want to be certain as to what she "has" before we make big decisions. I am also assured that if the amnio shows 13 or 18, that they will help us make our comfort care plan. The head doctor honestly told us he has been "losing sleep" over our case. He first heard of us at 19 weeks gestation and just wanted to meet us. He knew what he was talking about and was very honest and frank with us. Even if it is all Spina Bifida and we chose supportive care, Mary has a VERY long and difficult path ahead of her. He showed us the NICU. It's incredible at Chandler Regional. I was surprised that I didn't cry on our tour. All the nurses saw us walking around with the head neonatologist, I can only imagine what they are thinking. Obviously they know, we have a "special" baby. I am thankful to have these doctors on our team now. On Wednesday we went to Mercy Gilbert. I am pretty sure we will only chose this hospital if we are sure it's going to be comfort care. They don't have a NICU. The doctor and charge nurse were just as incredible. Unfortunately while we were there, we saw a baby fighting to survive and being transferred. I cried and cried. The beautiful thing was that the doctor and charge nurse got teary with me. They are human and shared that it is hard for them as well. I was so thankful for their honesty and emotion. 

Friday, I met with my OB where we talked about my health. The OB's we see are also so incredible. We are seen once a week to monitor my health. They are also sort of the "headquarters" as they are the head of our whole, huge team of doctors. Every week, whichever doctor we sees has read the newest reports. They spend time with us. Talking honestly with us. There is a little bit of talk about the size of Mary's head. If it continues to "grow" due to fluid on her brain, there is a possibility that she will have to be delivered by c-section. Please join us in prayer that this is not the path we are led to. There are many reasons having a c-section would be unfortunate. Obviously, whatever Mary needs, she will get. 

If you can believe me, this all is the very short version of our week. There are so many factors to include, so much emotion involved. So many conversations no one wants to have. We are so loved though. God has never left our side.  He continues to safeguard our marriage as we walk this journey as newlyweds. It would be a challenge for any marriage to walk this journey. Life and death, financial hardships, uncontrolled emotions, these are all trying on a marriage. God blesses Sam and I with unconditional love for one another too. We walk and work daily to stay strong and not become a statistic. God blesses us with small joys each day. He is so amazing. We will continue to praise the One who has chosen me (and us) to carry Mary. Please pray as we grow ever closer to our due date, that we continue to have faith and trust in Him. 

Memories, memories, memories!

It has been a while since I wrote last. This past week, Sam, Mary and I went to Coronado Island with my family. It was our first whole family vacation since I was a little girl. To say I was looking forward to it would be an understatement. Sam had no idea what he was in for. He was the only husband that went. I am so glad he put up with all of us Paris women for a week. I couldn't have imagined it without him. We made such special memories with Mary and my family. There was a lot of beach time, a lot of talking about what to do (coordinating 9 women and two toddlers is difficult), Sea World, late night games, and unlimited laughs with Macee and Liam. Half of the family stayed at Hotel Del Coronado and the other half (us) stayed at Glorietta Bay Inn. We walked back and forth quite often! It sounds strange, but for the first two days I didn't think of Mary in the same light. Everyone we were with knows about her (obviously), and loves her. I didn't have to worry about her or worry about someone asking questions. On the second day, when I realized this, it made me so happy. For two whole days I felt like your normal, pregnant woman. I didn't worry, think, stress, anything... I just enjoyed her. I sure wish I had more days like that. There are so many stories I could tell about our family vacation, but truth is, the chaos and stories of joy are much better in person! Below are some pictures that capture special and fun moments of our wonderful week on Coronado! 
I don't understand why I can't get them in chronological order! Oh well. :) 

These two brought so much joy to our week. Mary loved the time with her cousins even if they didn't realize she was there. 

The beautiful Del at sunrise on our last day. 

Liam Monster...He wanted off the plane already!

This little girl has my whole heart. I LOVE hearing her call me "JoJo".

The biggest pizza ever! This picture doesn't do justice. 

At Sea World... Macee put the hats on us... and then wouldn't smile. 

Melts. My. Heart. I can't wait for him to be a daddy. 

We also wanted off the plane! Liam wasn't alone... 

Since returning home two days ago, I am back to having to face reality. I go back to work this week. I am both super excited and dreading it. I can't wait to meet my new class, but I also know that my body will have a hard time getting through each day. Today, I also made it to the third and final trimester. I am having a hard time realizing that our journey with Mary is coming to an end. I love her so much, I can't imagine not having her with me...in me...anymore. This journey has been the hardest thing in the world and it has seemed to drag on... but now it's all coming to an end too quickly. Such a weird place to be. I never want this to end. This week is a big week for our little family. Monday, we have our next ultrasound. The doctors didn't expect me to make it to this one. I can't wait but yet am dreading the appointment. I can't wait to see how big she is. I can't wait to see her. I'm so worried though, it's never easy hearing everything that is wrong with your baby. We are also going to talk about her lungs this time... please pray I have had enough fluid for her lungs to develop. On Tuesday and Wednesday, we are meeting with the head neonatologist at both of the hospitals where we can deliver. We will hear what they have to say about Mary and make sure we are all on the same page for her birth. We will do tours of both L&D floors as well. After this week, we will pick the hospital where we will deliver her. Then Friday is my next appointment with the regular OB. My blood pressure has been pushing limits lately and now my feet and hands are very swollen. We would love for all the prayers we can get this week. It will probably be an emotionally exhausting week. Thursday (the only day we don't have an appointment) is "Meet The Teacher Night". It will be a long day, but a nice break from "reality". Saturday we are scheduled for our maternity pictures. What a week! Life is never dull in the Krause House. Every day is full of memories for our little family with our precious and perfect Mary. 

A Trip To Tucson That Made My Heart Smile

This past weekend, Mary and I got to go down to Tucson. I left Sam at home so he could have a MUCH deserved break from us. I am definitely not the easiest person in the world to be around all the time. I was only in Tucson for 2 days, but I had a great time. It felt so good to be "home". I do have to admit though, Tucson traffic sucks so much. Although I've only lived in Phoenix for one year, the freeways are so nice. 

My time in Tucson was spent focusing on, and loving Mary unconditionally. I got to spend time with my mom, Nani, my aunt (Aggie), my cousin (Allie), and my best friend Jessica. It was much needed for my heart. We started our adventures at church. I haven't been to my family church in well over a year. It was great to see many people who I know are praying for us. It was great to get hugs from people I have missed. I decided I was going to wear pants to church to really show off my baby bump. I hadn't worn pants in over two weeks due to the pain it causes me. I made the sacrifice to show off my baby, since this may be all most of the people at church ever see. Half way through church, I regretted my decision. I was counting down the minutes until I could change back into my dress. It really made me sad. I couldn't even go an hour in pants. It was a NOT needed reminder of my special, precious daughter. I continue to pray that she is not in any pain, but that I am taking all her pain for her. 

After church we went to Olive Garden (my favorite). It was very delicious and made both of us happy (I decided it made Mary happy as well). After lunch we went to find an outfit for maternity pictures. I hate shopping. I have hated it even before being pregnant. Shopping for pictures with Mary made the whole process even more painful. I must have tried everything on in the store. Thank goodness Nani and Aggie had patience. It was so hard for me. I know I should have been happy, but I wasn't. I was hot and emotional. I wanted my tummy to be bigger. I wanted to have maternity pictures at 38+ weeks with a huge belly and healthy baby. In reality, we will have maternity pictures ASAP. Not sure yet when or where, but ASAP. I found an outfit (pants of course). I will only wear them for pictures, but then I will save them for our future pregnancy. After finding an outfit, we went to Build-A-Bear. Ever since finding out about Mary, I have wanted to get a bunny for her. I have no idea why, it's just something I have felt strongly. I had been looking a lot, and nothing was working. I then realized there was a great one at Build-A-Bear. We went in and I went right to the bunny. Then I recorded Mary's heartbeat onto one of the noise things. We then stuffed her. The workers at Build-A-Bear had no idea how emotional this was for us. When I went to stuff the bunny, the worker asked if it was for my baby. I said yes and she was so excited. She had no idea I was on the verge of tears the whole time. I just wanted her to stuff the bear and let us pay and leave. She had me chose a heart for the bunny. I had to rug it on my head, arms, heart, eyes, ect with all these cute sayings so Mary would be strong and brave and healthy and travel. It almost killed me. I looked over and Aggie was crying. I just wanted to leave. As soon as that was over, we paid and left. They wanted us to dress her and name her and we wanted to leave. It was almost too much to do, but I have the best bunny for Mary. It plays her heartbeat when we press it. Her siblings will learn to love the bunny as we share stories of Mary with them. 

That night, my mom and Allie joined us as Nani's for chinese food. Again, it made me happy! We spent the evening laughing and having a great time. We also finished Mary's quilt. I had asked Nani to make Mary the same quilt she made me when I was a baby. We finished it and it's gorgeous. It will be something I treasure for ever and ever. Nani also made Mary the most beautiful white dress for baptism/cremation. It is the most beautiful thing I have ever seen. It was a great night, full of love for Mary. Conversations were not what I dreamed of ever having, but I was so thankful for all the women in my life.

Monday morning I cute nearly 6 inches off my hair. Ever since I became pregnant, my ends of my hair had refused to curl. No one had ever seen such a thing. I just cut it off. It's so short. No one notices really except me, but man is it short. Lastly, I had lunch with my mom, Nani, and Jessica before heading home. Lunch was perfect. We laughed and we loved. I am so thankful for a best friend who supports me through this journey, even though it's hard for her. I said my goodbyes and headed back to Phoenix before the dust storms. It was an amazing and perfect trip to Tucson. I am attaching pictures below.  

Bunny with Mary's heartbeat in it! 

Rocking chair where I read to Mary daily from a children's Bible. 

Her crib that is perfect because of the quilt Nani made. 

This is her preemie outfit. The book was given to me by a dear friend, and the blanket I croqueted her. 

This is her micro preemie outfit, a quilt a friend sent us, and my quilt, and of course her bunny. 

The most perfect quilt for Mary. Just like her mommy's. 

My very loved quilt. 

Here is her outfit we will put on her when she comes. It is so tiny. My hand is just to give a size reference.