It's been a few days since I've posted. I've thought about posting several times, but I just don't really have anything to say. School finished up and it's summertime now. I have very mixed emotions about that. I am excited to be able to sleep in and rest a lot, but I'm also dreading not having a routine. I think about having six weeks off and I'm neither excited nor dreading it. For the last several months (really since we found out we were pregnant), I had been planning on getting the nursery painted and ready. That was going to be my summer. Well, now I'm not, so I'm really not sure what I'm going to do. It has left me with an lack of interest in doing much. I know that I will find things to do to fill my time, just have to think in a different mindset.
It was a few days after we found out that our precious Mary had some abnormalities, that I made a promise to Sam. I told him (promised) that I was going to try my absolute hardest to NOT become bitter and jealous of my friends and anyone who had babies. I have a few acquaintances who have gone through miscarriages and have become bitter and jealous. I always had my own opinions about that. Boy, I totally get it now. It's so easy to get jealous, angry and bitter. I wake up every single day and remind myself to have a joyful and thankful heart for all the precious babies and children I will come across that day. It really is much harder than it sounds. While I am not jealous or bitter, being around young children and babies is VERY hard. Target used to be my favorite place to go. Now I dread it. There are so many people and babies are Target every time I go. Again, I'm not jealous, just really sad.
Tonight we went to our friends house for a swim party and BBQ. I knew that there were going to be young families with lots of babies and toddlers. To be honest, I didn't want to go. I love our friends and want to spend time with them, but I just didn't feel strong enough or ready to be around all of them with their babies. I went because I knew it was important to Sam. He has to deal with me every day, so I want him to be able to have an outlet as well and be around some guys. I pepped myself up the whole way there. When we got there, I thought everything was going to be okay. Sam and I changed into our suits and went outside. Sam got into the pool and I sat down to just absorb everything. Then it hit me. I was not okay. My heart started racing and I just wanted to run away. I started walking away crying, but realized I couldn't run away from this. I needed to be thankful for our friends and their adorable families. My friend came up to me and hugged me and I fell apart. I cried hard for a few minutes. I just want to be like them. I want our Mary to be healthy and be able to be in the pool with us within a few months. I want Sam to be with the other dads with his baby in his arms. I want something that I may not be able to have. I cried and cried and then I felt better. I was able to voice everything and then I was able to get myself collected. I of course had a great evening. Sure I was sad, but I was thankful to be surrounded by people who knew how hard it was for me and were aware. We didn't talk much about Mary, but we didn't need to. We, Sam, Mary, and I, were surrounded by friends who love us, support us, and pray for us.
Our precious and perfect daughter
Friday, May 29, 2015
Tuesday, May 26, 2015
Glorious Unfolding
Life has been calm for the last few days and I love it. At the same time though, it makes me uncomfortable. Everyone around me seems so happy and content. Sure, I am happy in the moment, but yet my heart still aches so much. The more that times passes, the more pressure I feel to be "okay" and to "get over it". No one is telling me this. No one is putting this pressure on me. I think this is all inside my head. I almost feel like days when there is chaos and scares it's easier to cry and show emotion. I feel like it's justified and acceptable. Days that are normal and calm are so nice for my anxiety and so hard on my heart. I want to cry multiple times a day for stupid reasons, but yet that's not acceptable (I guess according to me). I never want Mary, or anyone else to feel like I'm giving up. I have more hope for our situation now than I ever have been. But yet my heart is still breaking and I'm still crying. The more time that passes, the more I realize this is our reality and I'm not going to wake up. It's so scary to be inside my head right now. Thank goodness no one has to see it! HA! Every ache or pain or weird feeling scares me to death and makes me worry that this will be the end of our journey. Yet, rays of hope shine through and remind me I'm just overacting. My belly is growing. I'm getting stretch marks (in unfortunate places), but still that gives me hope that Mary is growing and that my body is providing everything she needs.
As I was listening to KLOVE on my way to work this morning, I was completely lost in the music. The interesting thing was that I wasn't thinking about the words of the songs. It was almost just like a safe place for me mind to process. I know it sounds weird. I realized that I need to change my perspective. Thousands of times a day I pray to God that He provides ultimate healing. I pray that He does this, and that, and this, and that. While I don't think there is anything wrong this prayer, God hears my inner most thoughts. He knows this is my biggest desire. He knows more than anything I want complete healing for Mary. I realized today, that I am called to pray for His will to be done. God already has Mary's story (and mommy and daddy's stories) written. He already has the perfect story unfolding. I feel I need to pray for strength and courage to do His will with whatever happens. I need to pray for wisdom for the doctors, health for my body, and courage to surrender completely and live in the happiness of the moment. I think that maybe praying this way will allow me to see the bigger picture and feel His presence more.
Living in the moment is very hard at times though. This morning at school was Kindergarten celebration (sort of like promotion). I have been working very closely with a handful of very special kinders this year, so I watched the ceremony. While my heart was beaming with joy for these kiddos who have grown so much, it was also breaking. I tried so hard to stay focused on the here and now, yet I kept getting lost. I so want to see our Mary up there in five years. I want to see her smiling from ear to ear, singing songs about growing up. I want to be that mom is the crowd who cheers obnoxiously loud, even though I've been a teacher and know it's irritating. I want to see pictures on a big screen of our princess playing with friends. I so long for these simple milestones. Tears streamed down my face, both happy and sad tears. Living in the present is so hard!
A friend reminded me of a beautiful song tonight. It was exactly what I needed. I've heard it many, many times, yet the words struck me at a much deeper level tonight. I am so thankful for my faith and my knowledge that I never am alone, even when I feel like I'm losing it. I'm thankful for my beautiful unfolding.
As I was listening to KLOVE on my way to work this morning, I was completely lost in the music. The interesting thing was that I wasn't thinking about the words of the songs. It was almost just like a safe place for me mind to process. I know it sounds weird. I realized that I need to change my perspective. Thousands of times a day I pray to God that He provides ultimate healing. I pray that He does this, and that, and this, and that. While I don't think there is anything wrong this prayer, God hears my inner most thoughts. He knows this is my biggest desire. He knows more than anything I want complete healing for Mary. I realized today, that I am called to pray for His will to be done. God already has Mary's story (and mommy and daddy's stories) written. He already has the perfect story unfolding. I feel I need to pray for strength and courage to do His will with whatever happens. I need to pray for wisdom for the doctors, health for my body, and courage to surrender completely and live in the happiness of the moment. I think that maybe praying this way will allow me to see the bigger picture and feel His presence more.
Living in the moment is very hard at times though. This morning at school was Kindergarten celebration (sort of like promotion). I have been working very closely with a handful of very special kinders this year, so I watched the ceremony. While my heart was beaming with joy for these kiddos who have grown so much, it was also breaking. I tried so hard to stay focused on the here and now, yet I kept getting lost. I so want to see our Mary up there in five years. I want to see her smiling from ear to ear, singing songs about growing up. I want to be that mom is the crowd who cheers obnoxiously loud, even though I've been a teacher and know it's irritating. I want to see pictures on a big screen of our princess playing with friends. I so long for these simple milestones. Tears streamed down my face, both happy and sad tears. Living in the present is so hard!
Saturday, May 23, 2015
Thanking Him For Small Miracles
Sometimes, the smallest things can bring the biggest breaths of fresh air. Yesterday was one of those times. Sam and I met with our doctor to get some of our questions answered (hopefully). This was an appointment I had asked for, not one that was necessary. We met with her and got a few answers, although most of them were "could be's", "maybe's", and "probably nots". The biggest question we had was at what level my amniotic fluid was. Midway through out conversations she informed us that she had scheduled us for an ultrasound to see if they could see anything else. We still hadn't seen the second arm and hand, kidneys, lip and palate, ect.
We went into the ultrasound room and I was so nervous. I get nervous every time we look for a heartbeat. I was relieved once we saw it beating away. Yesterday her heart was beating nice and strong at 169bpm. She then started looking around. I really enjoyed it this time. I hardly remember anything from the ultrasound two weeks ago because I was crying so hard. Yesterday, I loved looking at her. She is just so cute all curled up in there. She is still in her tight ball.
I knew there were certain things to not ask about because we could clearly see they were still abnormal. Her brain is still soft (none of the squiggles), she is missing her cerebellum and hippocampus, and there is fluid in her brain. This time though I was able to overlook all of that. Much to our very pleasant surprise she was moving a lot. We saw her one leg moving again, and one wrist move. That is a big deal. She was also rolling from side to side. Yay! The tech asked if we could switch to internal ultrasound because of her position. I agreed even though it is so uncomfortable. Once she was inside, Mary had rolled again. That's okay though, Sam and I were enjoying watching it.
To summarize our good news: Mary has one kidney and it looks great! You have no idea how relieved we were to find this. The doctor and the tech were searching and searching and they finally found it. There may be another one but probably not. That's totally fine though because you only need one kidney to live. A lot of that searching is due to her being so curled up. Mary's tummy was full. Also amazing news. That means she swallows. This is huge news. It is bad news if she can't swallow and makes it very uncomfortable for mommy later in pregnancy. She does not have a cleft lip or palate. I know this is a very simple thing, but I am personally so happy to hear this. The last bit of good news is the best. I had almost normal amniotic fluid. Thank you God! This is crucial to give Mary any fighting chance. She needs to be able to move and she needs fluid to help her lungs develop.
Thank you all so much for your continued prayers. Sam and I are beyond grateful for them. He is hearing them and giving us glimmers of hope.
This is all great news, but the reality remains the same. She is still labeled as "incompatible with life". I hate that term more than anything else in this world. We continue to plead with God to provide miraculous healing. Finding a kidney is great! Now we need to see her bladder (they couldn't see this but the doctor assured us it's okay). We also need healing for her brain. She still has a pretty big "speck" on her heart and we haven't even begun talking about what that means yet. She also has something with bowels. Again, we haven't had conversations about that. We want to be able to feel her move. I still haven't felt movement. I so long to feel her move. I also want Sam to be able to feel her move. We know that God has the perfect plan for all of this. We love each and every day we have with her. We made it to 20 weeks today! A huge milestone! I officially have my first stretch mark (yes, this makes me happy because it lets me know she is growing). We are already seeing the amazing things our precious daughter is doing to people's lives and she is still inside me. We pray for total healing, but we are prepared for whatever God throws at us. We take things day by day.
Yesterday morning I was given this book:
We went into the ultrasound room and I was so nervous. I get nervous every time we look for a heartbeat. I was relieved once we saw it beating away. Yesterday her heart was beating nice and strong at 169bpm. She then started looking around. I really enjoyed it this time. I hardly remember anything from the ultrasound two weeks ago because I was crying so hard. Yesterday, I loved looking at her. She is just so cute all curled up in there. She is still in her tight ball.
I knew there were certain things to not ask about because we could clearly see they were still abnormal. Her brain is still soft (none of the squiggles), she is missing her cerebellum and hippocampus, and there is fluid in her brain. This time though I was able to overlook all of that. Much to our very pleasant surprise she was moving a lot. We saw her one leg moving again, and one wrist move. That is a big deal. She was also rolling from side to side. Yay! The tech asked if we could switch to internal ultrasound because of her position. I agreed even though it is so uncomfortable. Once she was inside, Mary had rolled again. That's okay though, Sam and I were enjoying watching it.
To summarize our good news: Mary has one kidney and it looks great! You have no idea how relieved we were to find this. The doctor and the tech were searching and searching and they finally found it. There may be another one but probably not. That's totally fine though because you only need one kidney to live. A lot of that searching is due to her being so curled up. Mary's tummy was full. Also amazing news. That means she swallows. This is huge news. It is bad news if she can't swallow and makes it very uncomfortable for mommy later in pregnancy. She does not have a cleft lip or palate. I know this is a very simple thing, but I am personally so happy to hear this. The last bit of good news is the best. I had almost normal amniotic fluid. Thank you God! This is crucial to give Mary any fighting chance. She needs to be able to move and she needs fluid to help her lungs develop.
Thank you all so much for your continued prayers. Sam and I are beyond grateful for them. He is hearing them and giving us glimmers of hope.
This is all great news, but the reality remains the same. She is still labeled as "incompatible with life". I hate that term more than anything else in this world. We continue to plead with God to provide miraculous healing. Finding a kidney is great! Now we need to see her bladder (they couldn't see this but the doctor assured us it's okay). We also need healing for her brain. She still has a pretty big "speck" on her heart and we haven't even begun talking about what that means yet. She also has something with bowels. Again, we haven't had conversations about that. We want to be able to feel her move. I still haven't felt movement. I so long to feel her move. I also want Sam to be able to feel her move. We know that God has the perfect plan for all of this. We love each and every day we have with her. We made it to 20 weeks today! A huge milestone! I officially have my first stretch mark (yes, this makes me happy because it lets me know she is growing). We are already seeing the amazing things our precious daughter is doing to people's lives and she is still inside me. We pray for total healing, but we are prepared for whatever God throws at us. We take things day by day.
Yesterday morning I was given this book:
If you have never read this book, I highly recommend it. Especially if you are a mommy or daddy. When I was handed this book, I was told to read it at home. Thank goodness I did because the tears were streaming down. They weren't completely sad tears though, there were a few happy tears. For the first time since getting the news, I felt like these tears were some of acceptance. I pray endlessly to God that he blesses us with a daughter on earth to hug, cuddle and love. I also am coming to terms with realizing I am not in control and that might not be His ultimate plan. We are just called to follow Him and trust in Him completely.
Mary, my precious and perfect daughter, these words could not be any truer:
"You are my angel, my darling, my star... and my love will find you wherever you are."
I pray these words mean I get to hold you and love you, but my love finds you now in my belly, and will continue to find you on earth or in heaven. I love you baby!
Thursday, May 21, 2015
The Innocence Of A Child Is God's Gift To Me Today
Today has been a good day. I have to admit I'm a little surprised. I woke up and almost did go to work. Why? I didn't feel good. Honestly I wake up feeling awful every single day. The first thirty minutes of my day are the hardest. I wake up and realize this is still happening. I'm sick to my stomach. I'm still sleepy. Usually I text Sam and somehow his encouraging text gives me what I need to get myself in gear.
Our schedule at school was completely different today. My students don't do well in situations like this and truthfully I don't either. I can relate to my kiddos. I like routine and order. Surprisingly it was a good day. We had fun and laughed. We were making our own little yearbooks. One of the questions was "My favorite song is". As my students were all working I walked around and started playing their favorite songs. We listened to Christmas songs in May. It was awesome! We listened to Frozen, What Does The Fox Say, Lion King songs, Everything Is Awesome, ect. We were all over the place but it was fun. I know Mary was happy because her mommy was. I decided she is going to be like mommy and love Christmas so very much. So much that she'll listen to Christmas music with me in May.
I am so thankful for my amazing coworkers. I know that there are so many classrooms I can go to if I need anything. As I mentioned yesterday, my head is not in the game. There are so many teachers who gave me fun ideas to finish the year strong. I get hugs at all times of the day. Everyday I get to talk about Mary at least once. It makes this mommy so happy!
This afternoon I went to my nephew's preschool celebration/promotion. My older sister so kindly told my oldest nephew that "JoJo is coming tomorrow" so I was stuck. It started at 4pm. I pulled into the parking lot at 3:50 just as my sister was calling. She warned me that there were a lot of babies. A lot of young babies. She told me she wouldn't mind at all if I just went home. I didn't even think twice. I had told Matisse and Liam I was going and so I was going to be true to my word. My three nephews and niece are my motivation to keep going. My love for them is incredible. They make me laugh and smile when everything seems hopeless. I walked inside and was a little taken aback by all the strollers. There were babies of all ages. I was so sad, but I was so thankful for their precious lives. One of the moms started talking with me and my sister. She said if I had kids. My heart sank. I confidently told her I was expecting my first. She then preceded to ask if it was a boy or girl. Was I still sick? Was I working on a a nursery? I have been DREADING people asking me those. I just breathed through it. I could tell my sister was uncomfortable. I honestly don't even know what I said. It sucks. People don't know, and I'm just not sure how to respond.
In the middle of the ceremony our genetic counselor called. We talked for 25 minutes. No new information. We talked about many difficult things but I'm just not ready to go into them yet. Sam and I have some big things to consider. Please join us in prayer for wisdom and confidence to make choices and stand by them. We are meeting with our Perinatal specialist tomorrow at 2:00pm to have some simple questions answered. Sam and I emailed a list of 13 questions today. She will come with the best answers possible tomorrow. Nothing discussed tomorrow will be earth shattering. It's more to give us some peace of mind. I am excited and nervous.
I decided today that I am going to focus my prayers on one specific area. I am praying that I somehow get more amniotic fluid. Mary needs fluid to grow and develop. I am pretty sure that low amniotic fluid is one of her greatest risks. I have had a gallon of water today. I will try anything and everything. Please pray hard that God blesses us with more fluid. I don't know how this will be possible, but God is bigger than this simple request.
I am feeling hopeful today. I am feeling calm. I am feeling happy. I thank God for these positive things. To end today's post I am going to share something that makes my heart swell with happiness and absolutely devastates me. Something, that someday in many years I'll bring up and share again. As I was leaving the preschool today I went to tell Matisse and Liam goodbye. Matisse came up to me and gave me a big kiss. Then he kissed my tummy and said "I love you too Mary." I just wanted to cry. I started walking away, maintaining composure. As I was walking I heard "JoJo, JoJo" behind me. I turn around and Matisse and a few friends were running towards me. I stopped. Matisse comes up and puts his hand on my belly and told his friends that he is having a new baby girl cousin who he loves so much. He kissed her again and ran away. I lost it. Matisse is the only person in this world she treats Mary like she is perfect and just your normal baby. He loves babies so much. I have never seen a five year old who loves babies so much. He is so excited to have another baby cousin. His love for her is the most beautiful thing I have ever seen. The innocence of a child is a true gift from God. He kisses my belly all the time and asks when she is coming out. We obviously aren't telling him whats going on. I pray that I can continue to maintain myself when he is around. I pray that Mary gets to someday, by the grace of God, play with Matisse and grow up with him. He loves her so much. Someday when Matisse is grown up, I will have to remind him how extra special his kisses were through this journey. His love for her reminds me of the love God has for us. He loves us completely unconditionally. Today and forever I am so thankful that Mary has a cousin who loves her even as an unborn baby. I am so thankful God has chosen us to be her mommy and daddy because our families are fighting and praying for her unceasingly.
Our schedule at school was completely different today. My students don't do well in situations like this and truthfully I don't either. I can relate to my kiddos. I like routine and order. Surprisingly it was a good day. We had fun and laughed. We were making our own little yearbooks. One of the questions was "My favorite song is". As my students were all working I walked around and started playing their favorite songs. We listened to Christmas songs in May. It was awesome! We listened to Frozen, What Does The Fox Say, Lion King songs, Everything Is Awesome, ect. We were all over the place but it was fun. I know Mary was happy because her mommy was. I decided she is going to be like mommy and love Christmas so very much. So much that she'll listen to Christmas music with me in May.
I am so thankful for my amazing coworkers. I know that there are so many classrooms I can go to if I need anything. As I mentioned yesterday, my head is not in the game. There are so many teachers who gave me fun ideas to finish the year strong. I get hugs at all times of the day. Everyday I get to talk about Mary at least once. It makes this mommy so happy!
This afternoon I went to my nephew's preschool celebration/promotion. My older sister so kindly told my oldest nephew that "JoJo is coming tomorrow" so I was stuck. It started at 4pm. I pulled into the parking lot at 3:50 just as my sister was calling. She warned me that there were a lot of babies. A lot of young babies. She told me she wouldn't mind at all if I just went home. I didn't even think twice. I had told Matisse and Liam I was going and so I was going to be true to my word. My three nephews and niece are my motivation to keep going. My love for them is incredible. They make me laugh and smile when everything seems hopeless. I walked inside and was a little taken aback by all the strollers. There were babies of all ages. I was so sad, but I was so thankful for their precious lives. One of the moms started talking with me and my sister. She said if I had kids. My heart sank. I confidently told her I was expecting my first. She then preceded to ask if it was a boy or girl. Was I still sick? Was I working on a a nursery? I have been DREADING people asking me those. I just breathed through it. I could tell my sister was uncomfortable. I honestly don't even know what I said. It sucks. People don't know, and I'm just not sure how to respond.
In the middle of the ceremony our genetic counselor called. We talked for 25 minutes. No new information. We talked about many difficult things but I'm just not ready to go into them yet. Sam and I have some big things to consider. Please join us in prayer for wisdom and confidence to make choices and stand by them. We are meeting with our Perinatal specialist tomorrow at 2:00pm to have some simple questions answered. Sam and I emailed a list of 13 questions today. She will come with the best answers possible tomorrow. Nothing discussed tomorrow will be earth shattering. It's more to give us some peace of mind. I am excited and nervous.
I decided today that I am going to focus my prayers on one specific area. I am praying that I somehow get more amniotic fluid. Mary needs fluid to grow and develop. I am pretty sure that low amniotic fluid is one of her greatest risks. I have had a gallon of water today. I will try anything and everything. Please pray hard that God blesses us with more fluid. I don't know how this will be possible, but God is bigger than this simple request.
I am feeling hopeful today. I am feeling calm. I am feeling happy. I thank God for these positive things. To end today's post I am going to share something that makes my heart swell with happiness and absolutely devastates me. Something, that someday in many years I'll bring up and share again. As I was leaving the preschool today I went to tell Matisse and Liam goodbye. Matisse came up to me and gave me a big kiss. Then he kissed my tummy and said "I love you too Mary." I just wanted to cry. I started walking away, maintaining composure. As I was walking I heard "JoJo, JoJo" behind me. I turn around and Matisse and a few friends were running towards me. I stopped. Matisse comes up and puts his hand on my belly and told his friends that he is having a new baby girl cousin who he loves so much. He kissed her again and ran away. I lost it. Matisse is the only person in this world she treats Mary like she is perfect and just your normal baby. He loves babies so much. I have never seen a five year old who loves babies so much. He is so excited to have another baby cousin. His love for her is the most beautiful thing I have ever seen. The innocence of a child is a true gift from God. He kisses my belly all the time and asks when she is coming out. We obviously aren't telling him whats going on. I pray that I can continue to maintain myself when he is around. I pray that Mary gets to someday, by the grace of God, play with Matisse and grow up with him. He loves her so much. Someday when Matisse is grown up, I will have to remind him how extra special his kisses were through this journey. His love for her reminds me of the love God has for us. He loves us completely unconditionally. Today and forever I am so thankful that Mary has a cousin who loves her even as an unborn baby. I am so thankful God has chosen us to be her mommy and daddy because our families are fighting and praying for her unceasingly.
Wednesday, May 20, 2015
No Answers, "It" Remains a Mystery
Words are hard to come by tonight. I'm angry today. After many calls to the doctor knowing our results were in, we finally got them. Everything is negative or normal. No Trisomy 13, 18, or 23. No cystic fibrosis, no fragile x, no anything. My karyotype is completely normal. I'm sure many of you are thinking this is great news, but it really isn't. The doctor warned us that if everything came back negative it could be any number of differential diagnosis, all with worse outcomes and fewer live births. "It" is killing me. I so badly want answers. I want to have something to tell people. It kills me to say Mary has this, this, this, this, and oh ya this. I want a name. I want to able to tell people that she has ____. If they want to know what that means, they can look it up. If they don't care anymore after hearing a name, great then I don't have to explain any further. A prayer was not answered today and that makes me mad/sad. I was praying so hard for Trisomy 18. That would have been best case scenario. Nope. I know God has a plan and purpose but I am more heartbroken. I honestly don't even know where we go from here. Yet again today we were encouraged to "voluntarily interrupt pregnancy". NO NO NO NO NO NO! Mary is our precious baby and perfect gift from God. Tomorrow I will call all the doctors again and try to figure out whats next. We will have more appointments where we have even harder conversations.
I have to remain realistic. I want to believe in a total complete healing (and continue to pray for this) but I cannot deny what we know to be true. I know that she does have significant brain abnormalities, she has something with her heart, and bowels. I have significantly low amniotic fluid.
I made it through work today. Thank you God. It was not easy. I physically felt okay, but I am really struggling to keep my head in the game. I feel guilty for this. I need to find motivation and inspiration somehow. My students desire it, but yet I struggle.
Lastly, we met with Ryan House today. It was amazing and it is definitely a blessing to our lives. I will expand more on this later.
Thank you for your continued prayers and patience with me, even on days when I'm grumpy.
I have to remain realistic. I want to believe in a total complete healing (and continue to pray for this) but I cannot deny what we know to be true. I know that she does have significant brain abnormalities, she has something with her heart, and bowels. I have significantly low amniotic fluid.
I made it through work today. Thank you God. It was not easy. I physically felt okay, but I am really struggling to keep my head in the game. I feel guilty for this. I need to find motivation and inspiration somehow. My students desire it, but yet I struggle.
Lastly, we met with Ryan House today. It was amazing and it is definitely a blessing to our lives. I will expand more on this later.
Thank you for your continued prayers and patience with me, even on days when I'm grumpy.
Tuesday, May 19, 2015
One Very Scary Day
It has taken me all day to get up the courage to write today. Yesterday was quite possibly the most stressful day yet. Unfortunately I know that these days will be more frequent than I want to admit. To start with good news, Mary is still with us. Thank you God!
Two nights ago I couldn't sleep to save my life. I was going back to work Monday morning. I chalked up my insomnia to anxiety about returning to work. After being up most of the night, I finally feel asleep but I have no idea for how long. I woke up out of a dead sleep covered in sweat with my heart racing. I literally thought my heart was going to pop out of my chest. This happened throughout the remainder of the night. Monday morning Sam's alarm went off at 5 and I was wide awake. I was so sick to my stomach. I got up and tried to eat breakfast. I had no luck. I was so sick. I looked down at my hands and they were so swollen. My wedding rings were being suffocated by the swelling. I decided I was in no shape to go to work. Racing heart, swollen hands, sick stomach. This combination made me a very unhappy person. Sam left for work and I went back to bed. I slept for maybe another hour and a half and woke up sweating with my heart racing again. I got up and spent the remainder of the day not moving on the couch. Every time I'd get up to go to the bathroom I was so out of breath. I was like an old lady. Around lunch time I decided to drive down to CVS to take my blood pressure to make sure it wasn't too high. I know that I'm at an increased risk of developing preeclampsia, even this early. Thankfully my blood pressure was still low, as it has been my whole pregnancy. I did notice that it logged my heart rate at 122bpm. I went home and called Sam. I started to worry that something was wrong. All of these symptoms were new and out of the blue. The more I thought about, the more I realized my body and my gut was telling me something was wrong. To make a long list of doctors phone calls and conversations short, we ended going to L&D. Apparently around week 20 gestation, you check in through L&D.
When we got to Chandler Regional, even getting out of the car was hard. Not only because I was out of breath but because I wasn't ready to be here. No women should be here until she is 9 months pregnant and ready to deliver. I was whispering "God I need you" to myself the whole time we walked in. Those were the only words I had. I can't even put into words how extremely painful it was to be in L&D. We walked in and immediately I heard newborn babies crying. It was the most beautiful and absolutely heartbreaking sound I have ever heard. Hearing the babies crying literally tore my heart into a million, trillion pieces. Seeing super pregnant mommies walking around, babies crying, ugh it was all just so painful. I lost it. I was devastated. I am NOT giving up hope, but I know that this is my ultimate dream; to be walking the halls, holding Sam's hand, nine months pregnant, anxiously awaiting our precious, perfect, healthy baby.
I had to wait a few minutes to be seen because they were very busy. I eventually got called back. I barely look pregnant. Before she could even ask why I was there, I lost it. I was sobbing. Ugh, thinking about it still hurts so very, very much. The nurse (who we can't remember her name) just hugged me. She still didn't know why I was there. Eventually I gathered the strength and found the words to tell her why I was there. She put the things on my belly to look for a heartbeat. There was none. I sobbed even harder. She called back and requested a handheld doppler ASAP. Within seconds two more nurses and the charge nurse appeared. They each looked on my belly for her heartbeat. Still nothing. I know exactly where she is inside of me. She hasn't moved all pregnancy. They were right on top of her and still silence. They moved us back into the real triage and ordered an ultrasound. I know that they assumed she was gone. I even questioned it for a few minutes. Then I realized I couldn't give up hope. I had to believe in my precious Mary. All of these symptoms I was experiencing are possibly ways my body may tell us if/when she does pass. I was living my very worst nightmare. After almost an hour, the ultrasound arrived. I might add that for that hour we sat behind a curtain surrounded by mommies and daddies experiencing the best day of their lives. There was one baby that just cried and cried. The more that baby cried, the more I cried. I thought I was literally going to die of heartache. Meantime I'm hooked up to a heart monitor and my heart rate is sky high. The tech laid me down, the nurse stood behind her, Sam was next to me holding my shaking hand, and they had the machine turned away from me. Sam could see though. Seconds after they started it, Sam said "I see it babe" and I just cried some more. I honestly don't know where I get all of these tears. I keep praying I run out soon. The nurse asked the tech if she saw a heartbeat and she didn't answer. I trusted Sam though, clearly he could see it otherwise he wouldn't have told me. A minute later the tech finally said, "yes there is a heartbeat". THANK YOU JESUS! THANK YOU JESUS! I think the nurse was surprised. They continued to look and they noted that my amniotic fluid was still very low. UGH.
Once we knew Mary was okay, I felt like I could start living again. The doctor decided to check to see if I was slowly leaking fluid as an explanation of why my amniotic fluid was so low. I knew I wasn't. Deep down, even though it kills me to admit, I know her kidneys are sick too. It test was painful and the answer was exactly that I thought. I am not leaking. It is probably her kidneys. After everyone was assured Mary was okay I was transferred down to ER to figure out my insane heart rate and rapid breathing. We were there for hours. They wanted to do every test in the world. The doctors SO wanted to find an answer for why this was happening. I know. Sam knows. It's hard to admit, but I believe there is healing in truth. My body is/was reacting to anxiety. I am trying to be brave and have all the hope in the world, but I am human. I believe this was one giant anxiety attack. They gave me fluids and my heart rate came down. They diagnosed me as "heart palpitations from unknown cause". It is definitely not "unknown". I am suffering from anxiety from a hurting and breaking heart. My body is taking making sacrifices to help sustain my precious baby's life. I wouldn't change this. I realize though, that I also have to take care of me. Anxiety is a nasty thing.
We got home at midnight last night and went to bed. We were thankful for another night with Mary. I can't deny the physical toll it is taking on me. I am not pleading with God to give me strength. I am not as strong as I thought I was. I will never give up hope.
Today was a MUCH better day. A new day is a beautiful thing. I stayed home from work one more day to sleep and rest. I am ready to return to work tomorrow. Am I anxious? YES! Will it be hard? YES! Will I have to do it alone? Nope! I have my school family to support me as I finish this year.
One more thing to add. I called the perinatologist today to see if our results are in. They are. Problem is the doctor has to give them to me. The nurse wouldn't even though I pleaded with her. Is this ironic timing that the results will come probably on my first day back to work? No... I don't believe in coincidences. God's timing is perfect. Tomorrow I ask for prayers as I return to work. I know my anxiety will be high which makes me physically sick. I pray that I am stronger than this. I also pray for strength to accept whatever diagnosis we receive. Regardless of what the doctors tell us, we know our Mary is perfect and we love her unconditionally.
Two nights ago I couldn't sleep to save my life. I was going back to work Monday morning. I chalked up my insomnia to anxiety about returning to work. After being up most of the night, I finally feel asleep but I have no idea for how long. I woke up out of a dead sleep covered in sweat with my heart racing. I literally thought my heart was going to pop out of my chest. This happened throughout the remainder of the night. Monday morning Sam's alarm went off at 5 and I was wide awake. I was so sick to my stomach. I got up and tried to eat breakfast. I had no luck. I was so sick. I looked down at my hands and they were so swollen. My wedding rings were being suffocated by the swelling. I decided I was in no shape to go to work. Racing heart, swollen hands, sick stomach. This combination made me a very unhappy person. Sam left for work and I went back to bed. I slept for maybe another hour and a half and woke up sweating with my heart racing again. I got up and spent the remainder of the day not moving on the couch. Every time I'd get up to go to the bathroom I was so out of breath. I was like an old lady. Around lunch time I decided to drive down to CVS to take my blood pressure to make sure it wasn't too high. I know that I'm at an increased risk of developing preeclampsia, even this early. Thankfully my blood pressure was still low, as it has been my whole pregnancy. I did notice that it logged my heart rate at 122bpm. I went home and called Sam. I started to worry that something was wrong. All of these symptoms were new and out of the blue. The more I thought about, the more I realized my body and my gut was telling me something was wrong. To make a long list of doctors phone calls and conversations short, we ended going to L&D. Apparently around week 20 gestation, you check in through L&D.
When we got to Chandler Regional, even getting out of the car was hard. Not only because I was out of breath but because I wasn't ready to be here. No women should be here until she is 9 months pregnant and ready to deliver. I was whispering "God I need you" to myself the whole time we walked in. Those were the only words I had. I can't even put into words how extremely painful it was to be in L&D. We walked in and immediately I heard newborn babies crying. It was the most beautiful and absolutely heartbreaking sound I have ever heard. Hearing the babies crying literally tore my heart into a million, trillion pieces. Seeing super pregnant mommies walking around, babies crying, ugh it was all just so painful. I lost it. I was devastated. I am NOT giving up hope, but I know that this is my ultimate dream; to be walking the halls, holding Sam's hand, nine months pregnant, anxiously awaiting our precious, perfect, healthy baby.
I had to wait a few minutes to be seen because they were very busy. I eventually got called back. I barely look pregnant. Before she could even ask why I was there, I lost it. I was sobbing. Ugh, thinking about it still hurts so very, very much. The nurse (who we can't remember her name) just hugged me. She still didn't know why I was there. Eventually I gathered the strength and found the words to tell her why I was there. She put the things on my belly to look for a heartbeat. There was none. I sobbed even harder. She called back and requested a handheld doppler ASAP. Within seconds two more nurses and the charge nurse appeared. They each looked on my belly for her heartbeat. Still nothing. I know exactly where she is inside of me. She hasn't moved all pregnancy. They were right on top of her and still silence. They moved us back into the real triage and ordered an ultrasound. I know that they assumed she was gone. I even questioned it for a few minutes. Then I realized I couldn't give up hope. I had to believe in my precious Mary. All of these symptoms I was experiencing are possibly ways my body may tell us if/when she does pass. I was living my very worst nightmare. After almost an hour, the ultrasound arrived. I might add that for that hour we sat behind a curtain surrounded by mommies and daddies experiencing the best day of their lives. There was one baby that just cried and cried. The more that baby cried, the more I cried. I thought I was literally going to die of heartache. Meantime I'm hooked up to a heart monitor and my heart rate is sky high. The tech laid me down, the nurse stood behind her, Sam was next to me holding my shaking hand, and they had the machine turned away from me. Sam could see though. Seconds after they started it, Sam said "I see it babe" and I just cried some more. I honestly don't know where I get all of these tears. I keep praying I run out soon. The nurse asked the tech if she saw a heartbeat and she didn't answer. I trusted Sam though, clearly he could see it otherwise he wouldn't have told me. A minute later the tech finally said, "yes there is a heartbeat". THANK YOU JESUS! THANK YOU JESUS! I think the nurse was surprised. They continued to look and they noted that my amniotic fluid was still very low. UGH.
Once we knew Mary was okay, I felt like I could start living again. The doctor decided to check to see if I was slowly leaking fluid as an explanation of why my amniotic fluid was so low. I knew I wasn't. Deep down, even though it kills me to admit, I know her kidneys are sick too. It test was painful and the answer was exactly that I thought. I am not leaking. It is probably her kidneys. After everyone was assured Mary was okay I was transferred down to ER to figure out my insane heart rate and rapid breathing. We were there for hours. They wanted to do every test in the world. The doctors SO wanted to find an answer for why this was happening. I know. Sam knows. It's hard to admit, but I believe there is healing in truth. My body is/was reacting to anxiety. I am trying to be brave and have all the hope in the world, but I am human. I believe this was one giant anxiety attack. They gave me fluids and my heart rate came down. They diagnosed me as "heart palpitations from unknown cause". It is definitely not "unknown". I am suffering from anxiety from a hurting and breaking heart. My body is taking making sacrifices to help sustain my precious baby's life. I wouldn't change this. I realize though, that I also have to take care of me. Anxiety is a nasty thing.
We got home at midnight last night and went to bed. We were thankful for another night with Mary. I can't deny the physical toll it is taking on me. I am not pleading with God to give me strength. I am not as strong as I thought I was. I will never give up hope.
Today was a MUCH better day. A new day is a beautiful thing. I stayed home from work one more day to sleep and rest. I am ready to return to work tomorrow. Am I anxious? YES! Will it be hard? YES! Will I have to do it alone? Nope! I have my school family to support me as I finish this year.
One more thing to add. I called the perinatologist today to see if our results are in. They are. Problem is the doctor has to give them to me. The nurse wouldn't even though I pleaded with her. Is this ironic timing that the results will come probably on my first day back to work? No... I don't believe in coincidences. God's timing is perfect. Tomorrow I ask for prayers as I return to work. I know my anxiety will be high which makes me physically sick. I pray that I am stronger than this. I also pray for strength to accept whatever diagnosis we receive. Regardless of what the doctors tell us, we know our Mary is perfect and we love her unconditionally.
Sunday, May 17, 2015
Totally a God Thing
Our God never ceases to amaze me. Small things, big things, it doesn't matter. Sometimes things just happen and you think to yourself "Ok God, I get it." Today was totally one of those times.
Sam and I were going to church like we do every Sunday. This week was extra special because Sissy (Aimee, my big sister) asked to come with us. I was very excited about that. Last night, Sam's parents texted him and said they were going to come with us too. Even better! This morning when we woke up, I was very sad again. Yesterday I felt happy, today I was sad and was frustrated about that. I hate how unpredictable my emotions are. Sam encouraged me to get up and get going. In true Sam and Jolee fashion we got to church very early. When they finally opened the doors for us to go in, I grabbed a program like always. I looked down at it and this is what I saw.
Sam and I were going to church like we do every Sunday. This week was extra special because Sissy (Aimee, my big sister) asked to come with us. I was very excited about that. Last night, Sam's parents texted him and said they were going to come with us too. Even better! This morning when we woke up, I was very sad again. Yesterday I felt happy, today I was sad and was frustrated about that. I hate how unpredictable my emotions are. Sam encouraged me to get up and get going. In true Sam and Jolee fashion we got to church very early. When they finally opened the doors for us to go in, I grabbed a program like always. I looked down at it and this is what I saw.
These are the WORST words Sam and I have ever heard. Here we are at church, trying to praise God through this crappy storm and He makes this the cover?! I couldn't believe it. I started almost yelling at Sam. I wasn't mad at him obviously, I just didn't want to face this. I wanted to run out of the church and go home and remain there. I can honestly say that if it weren't for my sister coming, that is exactly what I would have done. I can't even tell you how much this cover rocked my core. We sat down (still nearly 30 minutes early) and I read the story. Inside the program there was short version of this amazing couples experience. There was a website to go to for the full story and of course I pulled out my phone and went to it. This couple had been told the same thing, that their unborn child was "incompatible with life." They, like us, decided to carry their unborn daughter and pray for a miracle. They received the diagnosis of Trisomy 18. I wouldn't be telling the truth unless I admitted that I was pained with little bit of jealousy for a minute. That is the diagnosis I pray so greatly for. Then I remembered that I wouldn't change my precious Mary for anything. I just continue to pray for a miracle. As I read the story, I just cried. I hadn't cried in almost 24 hours and here I sat balling again. My sister called and I had to have Sam answer. He went out to get my sister and his parents. I guess he warned them that I was a mess. A few minutes later, there we sat, the five of us, that just a week ago had been together for the conversation with the doctor who told us OUR daughter is incompatible with life. Some might call this ironic, but it was totally a God Thing. Worship started and I found the strength to sing and give my greatest thanks to God for my amazing family, even more amazing husband, and beautiful daughter inside of me. The message today was on "Why People Suffer". I really didn't want to hear it. I didn't want to hear all about how God loves us so much and that even through we suffer at the deepest level, we are still called to have faith. I knew this, but I was angry. Worship definitely helped reduce my anger. We sat down and a story came on the screen. It was a short documentary of sorts on this same family. I held Sam's hand so tight through it. I was able to keep it together until they showed pictures of their precious little girl. Their family experienced a miracle. Their daughter lived for 97 amazing days. She physically looked perfect. Jealousy crept back into my heart. I so long for that for our Mary. I cried. My sister cried, Sam cried, and his parents cried. Then something beautiful happened and that was the message. It was so refreshing to have verses provided for us to be a source of encouragement and strength. I left the service with again a happy and thankful heart. I rejoice with this family for the time they had with their daughter. It is my personal goal to not become bitter and jealous of other friends and even strangers who have happy healthy pregnancies and babies. I have faith that God chose Sam and I to be Mary's mommy and daddy. He must think we are ready and capable, so we continue to fight and pray for her. It was no coincidence that we all ended up at church together today. The message was no coincidence. It was just another way for God to show us tangibly that He is with us and loves us.
After church we all went to lunch where we were able to laugh and talk about Mary without crying, heck we even laughed. It is such a beautiful day weather wise and we all had happy, thankful hearts to match it. My heart still aches so badly. I pray that someday soon I'll wake up from this horrible nightmare I am living. For now, we continue to have hope and enjoy life. This week we will likely receive a "formal" diagnosis. I pray I am strong enough to accept this. This week we meet with Ryan House. I am also going back to work this week. Please pray that I have patience and strength to face my students every day. I have so missed them, but yet they are a living, breathing reminder of what I'm facing. It makes my job so hard. I pray that I can be the best teacher for them, just as I would want Mary's teacher to be for her.
Friday, May 15, 2015
Having Fun and Creating Memories
It has been almost one week to the hour since our lives changed forever. It has been the fastest and longest week of my life. Our days have been full of tears, glimpses of hope, insane amounts of phone calls, and amazing support from our friends, family, work families, and agencies and organizations in Phoenix. I just got off the phone with the high risk doctor and our blood work isn't back yet. I'm both relieved and bummed. I want to know if Mary has a Trisomy condition for sure. At the same time, I'm thankful that we will be able to not think too much about it this weekend (as much).
Today I scheduled our next Level 2 ultrasound for June 5. Please join us in prayer that at this ultrasound they will be able to see her kidneys, lungs, hands, feet, nose, and lips. Pray they are all in perfect condition and that there is nothing wrong with them. Please also pray for a miracle for her little brain. God is powerful. After that ultrasound we will be scheduled for an echo of her heart at Phoenix Children's Hospital. At that same time we will meet with a specialty group of neurosurgeons who specialize on little unborn babies. I know this is a few weeks out, but it's never too early to start praying. Mary and I will go through an MRI so we can get the best images of her brain. They will walk us through our options and what will happen when she is born. They will also support us as we make some of the hardest decisions of our life. The MRI will tell us what level of holoprosencephaly Mary has. It will also confirm whether or not Mary has hydranencephaly. We continue to have hope and pray for a miracle.
Wednesday May 20, Sam and I will meet with Ryan House. If you have never heard of Ryan House and all the amazing things they do for the Phoenix community, I recommend you look them up. They will be in charge of our palliative care throughout our pregnancy and after she is born. They will help get us in contact with different agencies and provide the emotional support we need. As I was talking with them today, she warned us that our conversations may be difficult. For this appointment we ask for prayers for strength for Sam and myself.
For now though, Sam, Mary and I will enjoy our weekend. It started on a positive note last night. Mary and I played against Sam on Nintendo 64 Mario Kart. I have always been HORRIBLE and last night I was slightly better than horrible. We laughed and had a great time. Mary must have been happy because her mommy and daddy were laughing and enjoying themselves.
Below are some pictures that some of you have shared with over the last week that have lifted our spirits.
Tonight we will go to my big sisters house for dinner and even more laughs and good times. We are going to spend a lot of time with friends and family this weekend. I'm not sure what all we will do, but it will all be with thankful hearts for yet another day with our sweet and precious Mary Margaret.
Today I scheduled our next Level 2 ultrasound for June 5. Please join us in prayer that at this ultrasound they will be able to see her kidneys, lungs, hands, feet, nose, and lips. Pray they are all in perfect condition and that there is nothing wrong with them. Please also pray for a miracle for her little brain. God is powerful. After that ultrasound we will be scheduled for an echo of her heart at Phoenix Children's Hospital. At that same time we will meet with a specialty group of neurosurgeons who specialize on little unborn babies. I know this is a few weeks out, but it's never too early to start praying. Mary and I will go through an MRI so we can get the best images of her brain. They will walk us through our options and what will happen when she is born. They will also support us as we make some of the hardest decisions of our life. The MRI will tell us what level of holoprosencephaly Mary has. It will also confirm whether or not Mary has hydranencephaly. We continue to have hope and pray for a miracle.
Wednesday May 20, Sam and I will meet with Ryan House. If you have never heard of Ryan House and all the amazing things they do for the Phoenix community, I recommend you look them up. They will be in charge of our palliative care throughout our pregnancy and after she is born. They will help get us in contact with different agencies and provide the emotional support we need. As I was talking with them today, she warned us that our conversations may be difficult. For this appointment we ask for prayers for strength for Sam and myself.
For now though, Sam, Mary and I will enjoy our weekend. It started on a positive note last night. Mary and I played against Sam on Nintendo 64 Mario Kart. I have always been HORRIBLE and last night I was slightly better than horrible. We laughed and had a great time. Mary must have been happy because her mommy and daddy were laughing and enjoying themselves.
Below are some pictures that some of you have shared with over the last week that have lifted our spirits.
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| Yes! |
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| AMEN! |
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| These flowers have been given to us over the last week. They make me SO happy to look at! |
Tonight we will go to my big sisters house for dinner and even more laughs and good times. We are going to spend a lot of time with friends and family this weekend. I'm not sure what all we will do, but it will all be with thankful hearts for yet another day with our sweet and precious Mary Margaret.
Thursday, May 14, 2015
Ever Changing Emotions
I woke up feeling better today. Ironically I woke up feeling nauseous, but emotionally I felt better. I welcomed the nausea as Mary saying "Good morning mommy, I'm still fighting." Today I started doing my own research. For almost the last week I haven't searched the internet. I have talked to many mommies with similar situations but that was the extent of my research. Today I wanted to know more. I am glad I did, but boy was it painful. I came up with a list of questions for our perinatal doctor. I called her office and the nurse I spoke with said she couldn't answer the questions due to the sensitive nature. She told me the doctor would call sometime today but that her schedule was very booked. I accepted that and went on with my day. It was only about 20 minutes later that she called back. She asked how Sam and I were doing and then preceded to tell me that she has never worked with a young couple who has such faith in a miracle. She said she hasn't been able to stop thinking about us. The doctor went on to say that she had been talking with other high risk doctors and specialists. She had reached out to Phoenix Children's Hospital and a specialty group of doctors have agreed to take on our case. This was an answer to our prayers! Phoenix Children's Hospital has the top doctors who will give our Mary the best fighting chance. Our doctor went on to say that she was going to turn our case over to another doctor in her office. The new doctor focuses more on brain abnormalities. I am really sad to say goodbye to her, but thankful she is putting us in the best hands!
I stopped writing this blog earlier when Sam got home. We had planned on finishing our Thank You notes from our wedding. I know they are super duper late but at least they are done! I sat back down now to finish it, and I can't. I thought about just not writing today, but I knew I would regret that too. I'm not sure where my good, positive mood from earlier went, but its gone. Right now I am very, very sad. Tonight I'm just crying and I don't even really know why. Sam is playing his video games and usually I watch TV in the living room. Tonight I just need to be near him. He has held me as I cried tonight. He has wiped my tears away. He continues to be my rock through all of this. Tomorrow I will write about the encouraging new journey presented to us today. For tonight I find comfort in knowing God is in control and is crying right along with me. Tonight I find comfort in this song.
I stopped writing this blog earlier when Sam got home. We had planned on finishing our Thank You notes from our wedding. I know they are super duper late but at least they are done! I sat back down now to finish it, and I can't. I thought about just not writing today, but I knew I would regret that too. I'm not sure where my good, positive mood from earlier went, but its gone. Right now I am very, very sad. Tonight I'm just crying and I don't even really know why. Sam is playing his video games and usually I watch TV in the living room. Tonight I just need to be near him. He has held me as I cried tonight. He has wiped my tears away. He continues to be my rock through all of this. Tomorrow I will write about the encouraging new journey presented to us today. For tonight I find comfort in knowing God is in control and is crying right along with me. Tonight I find comfort in this song.
Through All Of It
By Colton Dixon
There are days I've taken more than I can give
And there are choices that I made
That I wouldn't make again
I've had my share of laughter
Of tears and troubled times
This is has been the story of my life
I have won
and I have lost
I got it right sometimes
But sometimes I did not
Life's been a journey
I've seen joy, I've seen regret
Oh and You have been my God
Through all of it
You were there when it all came down on me
When I was blinded by my fear
And I struggled to believe
But in those unclear moments
You were the one keeping me strong
This is how my story's always gone
I have won
and I have lost
I got it right sometimes
But sometimes I did not
Life's been a journey
I've seen joy, I've seen regret
Oh and You have been my God
Through all of it
Through all of it
And this is who You are
More constant than the stars up in the sky
All these years of our lives, I
I look back and I see You
Right now I still do
And I'm always going to
I have won
and I have lost
I got it right sometimes
But sometimes I did not
Life's been a journey
I've seen joy
I've seen regret
Oh and You have been my God
Through all of it
Oh and You have been my God
Through all of it
Oh and You have been my God
Through all of it
Wednesday, May 13, 2015
Tough Conversations, Thankful Heart
Today I don't want to blog. BUT... I know I'll feel better when I do. Here it goes.
Last night Sam and I went to my sister's house to spend time with family. Sam's parents came with us. We BBQ'd pizza. If you have never done it, I highly recommend it! It was a great night full of laughter and fun times. There were six kids running around (four niece and nephews) and two neighbor kids. I loved it. It made my heart so happy. As the night was winding down, Matisse brought out a gift from my sisters and my mom. It was the most special gift we have EVER been given. It is the cutest, most precious picture of Mary in a frame. There are no words to express what it means to us. There are no words to express how much we love it. Below is a picture of it. Hopefully it brings a smile to your face.
Last night Sam and I went to my sister's house to spend time with family. Sam's parents came with us. We BBQ'd pizza. If you have never done it, I highly recommend it! It was a great night full of laughter and fun times. There were six kids running around (four niece and nephews) and two neighbor kids. I loved it. It made my heart so happy. As the night was winding down, Matisse brought out a gift from my sisters and my mom. It was the most special gift we have EVER been given. It is the cutest, most precious picture of Mary in a frame. There are no words to express what it means to us. There are no words to express how much we love it. Below is a picture of it. Hopefully it brings a smile to your face.
I didn't go to work today. I took it off to give myself a day to grieve. Not grieve because I am giving up hope, but grieve the dreams I had. I have all the faith in the world that God will provide miraculous healing for Mary and she will live on earth with us. I am realistic though. I know that life with Mary on earth will not be the life I had envisioned when we got pregnant. That's okay though; God likes to remind us we aren't in charge. He knows exactly what is going to happen and I don't. Because of that I continue to have hope and pray like no other. In addition to giving myself a day to grieve, I made the crappy phone calls I knew I needed to make. I needed to call insurance to talk about different options. I needed to call some organizations to get help figuring things out. I am definitely not ready to go into detail about those conversations. They royally sucked. They made everything so much more real. They made my physically sick. They were horrible. Ugh, I cry just thinking about them.
When Sam got off work we went to another doctors appointment. I was so anxious. I didn't want to talk anymore and I was so afraid that there wouldn't be a heartbeat. I know that's a pessimistic thought, but it's real. PRAISE THE LORD!! Her heartbeat is still as strong as ever. Today has been extra painful so I'm going to share the things I'm thankful for. It's all about attitude right?
I'm going to use ABC's because these are in no particular order. :)
A. Mary Heartbeat. Daddy recorded his baby girls heartbeat. It was the most beautiful music we have ever heard. We can listen to it whenever we want now.
B. Less sickness. This is an interesting one. I didn't feel nauseous all day until about 7pm. That's a record. I hate feeling nauseous so much. I have a phobia of throwing up. BUT feeling nauseous also lets me know that Mary is still in there controlling my hormones. Regardless, less was so nice!
C. The picture of Mary my sisters gave us! Every time I look up from the couch, it's there and makes me smile.
D. My job and coworkers. Their kindness, love, and compassion is mind-blowing. Because of my principal, coworkers, and district, I have the rest of the week off.
E. The next two days off work. I can spend all the time with Mary. I literally laid on the couch for 2 hours today with my hands on my tummy loving her so much and talking to her.
F. My husband and Mary's daddy. I wouldn't be able to do this without him. He is my rock. He is my everything. He is taking the best care of us. We love you Daddy!
G. Those of you who specifically ask and pray for Sam. I feel like sometimes he doesn't get the attention in all of this he needs. Attention isn't the right word, but I'm not sure what is. God is pouring special blessings on him.
H. Our family. We couldn't do this without their love and support.
I. Music. I haven't really been able to watch TV. Music is whats speaking to my heart and giving me hope.
J. Another day with Mary Margaret!
Tuesday, May 12, 2015
Back To Work... Too Soon?
Last night I got an awful nights sleep. I was sick to my stomach all night. I kept waking up sweating or crying. Never in my life have I woke up from a dead sleep actually crying. I am not remember my dreams at all. I don't know if that is a blessing or not. I woke up and immediately did not want to go to work. Sam was already gone, but I started texting him right away. He continued to support and encourage me from afar. What would I do without him? I slowly started getting ready and I felt better. That was the first obstacle I conquered today. Getting up and getting ready. I sat down to eat breakfast and had a hard time swallowing food as I was still feeling so sick. Again, I conquered it. Who knew getting dressed and eating are tasks someone would consider a successful day.
I left for school. The drive was pleasant. I turned up the music and Mary and I jammed the whole way to school. For a few minutes I felt like everything was normal. Like I was your "normal" pregnant mom enjoying her second trimester. When I got to school I couldn't get out of my car. I didn't want to be back at work. I knew I had made the wrong decision. I wasn't ready to be back. I again found the strength to get out of the car and go inside. When I got into my classroom I called Sam balling. Today I am not strong. Today sucks. Today I don't want this to be our reality. Being in my classroom was so difficult. It doesn't seem fair that I am a special education teacher preparing for my own special needs child. I sat down at my desk and there were two small dead flowers. Later I found out that they were from a student who missed me yesterday. I cried as I looked at the dead flowers. The gesture was so so sweet and yet I felt like it was so symbolic. Flowers in and of themselves are beautiful but yet they were dead which made me look at them so different. I look at my pregnancy differently than I do the flowers. I think that's what makes me different. I am pregnant and know the outlook is grim but yet I continue to TRY to look at it at a beautiful thing...even though today has been the hardest yet. My pregnancy is a beautiful thing.
The day didn't really improve. Some teachers came to talk to me which I loved yet I wasn't able to compose myself at all when they did even though I thought thats what I wanted. Then there were other teams who didn't mention it at all. I can't blame them. What are you supposed to say? All day my students kept asking "whats wrong?" My eyes are so swollen. I have nothing to say to them. I couldn't even tell them we are having a little girl. I knew I would fall apart. Some of the staff played flag football against some of the older students. I usually don't take my class out to watch as they don't usually show any interest and can't maintain focus for that long. Today I did though. It was a beautiful day outside. Why should I deny them any opportunity a typical student would get. I was so proud of my school babies. Most of them did fabulous. We did go inside before the game finished but we were outside for a lot of it. As I was sitting on the grass with my class I took this picture.
I made it through lunch and one more hour and then I hit my limit. My daily "morning sickness" started and I had to leave. The nausea has become debilitating as I have been able to stand it leading up to this point because I took it as a sign of a healthy pregnancy. I'm somewhere around 19 weeks and now it makes me so sad. I hate it. It's like a physical reminder that my body and Mary are struggling. I know I need to think about in a different light, but I can't yet. Mary and I made it 5 hours at school today.
I came home, fell apart for a few minutes, and then thanked God some more. I thank Him so much every day. Today I thank him for a school family who loves me. I thank Him for a principal who is being so flexible with me even though it is the end of the year. I thank Him for a husband who is my rock through all of this. I thank God for a husband who isn't worrying about me taking unpaid days off even though we know financially we will be struggling severely. I thank Him for my baby, Mary Margaret. I thank Him for my family who is having us over for dinner tonight. I thank Him for our family who is helping in every way possible. I thank Him for an awesome aunt who is giving Sam time off to take care of me even though she needs Sam's help. I thank Him for another day with Mary.
Maybe tomorrow I will make it to work a full day. Maybe I won't. For now I focus on the moment and that is one I'm choosing to have a positive attitude for. I will take every day moment by moment.
Today's verse and source of encouragement.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
I left for school. The drive was pleasant. I turned up the music and Mary and I jammed the whole way to school. For a few minutes I felt like everything was normal. Like I was your "normal" pregnant mom enjoying her second trimester. When I got to school I couldn't get out of my car. I didn't want to be back at work. I knew I had made the wrong decision. I wasn't ready to be back. I again found the strength to get out of the car and go inside. When I got into my classroom I called Sam balling. Today I am not strong. Today sucks. Today I don't want this to be our reality. Being in my classroom was so difficult. It doesn't seem fair that I am a special education teacher preparing for my own special needs child. I sat down at my desk and there were two small dead flowers. Later I found out that they were from a student who missed me yesterday. I cried as I looked at the dead flowers. The gesture was so so sweet and yet I felt like it was so symbolic. Flowers in and of themselves are beautiful but yet they were dead which made me look at them so different. I look at my pregnancy differently than I do the flowers. I think that's what makes me different. I am pregnant and know the outlook is grim but yet I continue to TRY to look at it at a beautiful thing...even though today has been the hardest yet. My pregnancy is a beautiful thing.
The day didn't really improve. Some teachers came to talk to me which I loved yet I wasn't able to compose myself at all when they did even though I thought thats what I wanted. Then there were other teams who didn't mention it at all. I can't blame them. What are you supposed to say? All day my students kept asking "whats wrong?" My eyes are so swollen. I have nothing to say to them. I couldn't even tell them we are having a little girl. I knew I would fall apart. Some of the staff played flag football against some of the older students. I usually don't take my class out to watch as they don't usually show any interest and can't maintain focus for that long. Today I did though. It was a beautiful day outside. Why should I deny them any opportunity a typical student would get. I was so proud of my school babies. Most of them did fabulous. We did go inside before the game finished but we were outside for a lot of it. As I was sitting on the grass with my class I took this picture.
The world is still a gorgeous place. Hundreds of kids were around me having a great time and laughing and playing. I just sat with my hand on my belly thanking God for this journey. It was probably the most positive I was today.
I made it through lunch and one more hour and then I hit my limit. My daily "morning sickness" started and I had to leave. The nausea has become debilitating as I have been able to stand it leading up to this point because I took it as a sign of a healthy pregnancy. I'm somewhere around 19 weeks and now it makes me so sad. I hate it. It's like a physical reminder that my body and Mary are struggling. I know I need to think about in a different light, but I can't yet. Mary and I made it 5 hours at school today.
I came home, fell apart for a few minutes, and then thanked God some more. I thank Him so much every day. Today I thank him for a school family who loves me. I thank Him for a principal who is being so flexible with me even though it is the end of the year. I thank Him for a husband who is my rock through all of this. I thank God for a husband who isn't worrying about me taking unpaid days off even though we know financially we will be struggling severely. I thank Him for my baby, Mary Margaret. I thank Him for my family who is having us over for dinner tonight. I thank Him for our family who is helping in every way possible. I thank Him for an awesome aunt who is giving Sam time off to take care of me even though she needs Sam's help. I thank Him for another day with Mary.
Maybe tomorrow I will make it to work a full day. Maybe I won't. For now I focus on the moment and that is one I'm choosing to have a positive attitude for. I will take every day moment by moment.
Today's verse and source of encouragement.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Monday, May 11, 2015
Genetic Counseling
It has been just over 72 hours since we got the news that shook our lives. SO MUCH has happened it's crazy. Today was the first morning that I didn't want to get out of bed. I cuddled with Sam for a few minutes, cried, and then gathered the strength to get up and moving.
Sam and I took all the extra food from our celebration yesterday to my school. I knew we wouldn't eat it, plus teachers always love food. I wanted to start the week celebrating Mary even though I wasn't at work. It was a little overwhelming to even walk into the building. I am SO glad Sam was with me. I hope it makes walking into work a little easier tomorrow. We dropped off all the food in the lounge and then went into Lisa (my principal) office. We were greeted with huge hugs. It was exactly what we needed. We sat for a few minutes where we asked some difficult questions about the future and insurance and all that crap. It sucks so much to think about how differently life might be. I am both looking forward to and VERY much dreading going back to work tomorrow. Hopefully I can find the strength.
After leaving my school we went to the genetic counselor. It was a 1 hour 45 minute appointment that felt like 10 minutes. I had a bunch of blood drawn to look at my DNA and see if there is a connection. The doctor really didn't think so. She is pretty certain it happened spontaneously during conception. So we will wait and see. She also went over the findings and ultrasound report from Friday in a lot more detail. That was really, really tough.
Mary is measuring about two weeks smaller than she really is. Here is her official diagnosis. Its a lot of medical jargon, but I know there are a few people who want to know specifics. Her head is not shaped correctly they call it Strawberry shaped. She has Holoprosencephaly and Hydranencephaly. She also has Parenchyma, Lateral cerebral ventricles, choroid plexus, corpus callosum: agenesis of corpus callosum. She is missing her cavum septi pellucid, posterior fossa, cerebellum and cerebellar lobes. They say her heart is EIF which means its abnormal but they don't know what. They will do an echo on her heart in a few weeks. She has echogenic bowel. They couldn't see her kidneys or lungs due to her being so such a tight ball. They said there may be problems with her kidneys since my amniotic fluid is so low. They also couldn't see her nose or lips.
All I hear with all that is bleh, bleh, bleh, bleh. It's devastating. I don't know what else to call it. But yet I STILL HAVE HOPE. I WILL NEVER LOSE HOPE.
After the appointment we went to my sister's house to spend some time with family. I love being around my niece and nephews. They have no idea what is going on and I love that. Matisse, my oldest nephew always kisses my belly and tells me he can't wait to meet his cousin. That gets me every time. My hope and prayer is that he gets to. He loves her so much already and I am so in love with that thought. Mary has the best cousins in the world who love her already. Rayden, my youngest nephew crawled at full speed directly to me when we walked in. I love holding and cuddling him. It's like he knew exactly what I needed. Macee and Liam, well they are Macee and Liam and it's perfect. They are wild and trouble makers together and can make me laugh like no one else. I love their innocence.
Today and prayer and focus is on John 13:7 "Jesus replied, 'You do not realize now what I am doing, but later you will understand." Lord.... that is my prayer. I pray. I hope. I continue to fight for you Mary.
Below are some pictures from our gender reveal party and celebration yesterday.
Sam and I took all the extra food from our celebration yesterday to my school. I knew we wouldn't eat it, plus teachers always love food. I wanted to start the week celebrating Mary even though I wasn't at work. It was a little overwhelming to even walk into the building. I am SO glad Sam was with me. I hope it makes walking into work a little easier tomorrow. We dropped off all the food in the lounge and then went into Lisa (my principal) office. We were greeted with huge hugs. It was exactly what we needed. We sat for a few minutes where we asked some difficult questions about the future and insurance and all that crap. It sucks so much to think about how differently life might be. I am both looking forward to and VERY much dreading going back to work tomorrow. Hopefully I can find the strength.
After leaving my school we went to the genetic counselor. It was a 1 hour 45 minute appointment that felt like 10 minutes. I had a bunch of blood drawn to look at my DNA and see if there is a connection. The doctor really didn't think so. She is pretty certain it happened spontaneously during conception. So we will wait and see. She also went over the findings and ultrasound report from Friday in a lot more detail. That was really, really tough.
Mary is measuring about two weeks smaller than she really is. Here is her official diagnosis. Its a lot of medical jargon, but I know there are a few people who want to know specifics. Her head is not shaped correctly they call it Strawberry shaped. She has Holoprosencephaly and Hydranencephaly. She also has Parenchyma, Lateral cerebral ventricles, choroid plexus, corpus callosum: agenesis of corpus callosum. She is missing her cavum septi pellucid, posterior fossa, cerebellum and cerebellar lobes. They say her heart is EIF which means its abnormal but they don't know what. They will do an echo on her heart in a few weeks. She has echogenic bowel. They couldn't see her kidneys or lungs due to her being so such a tight ball. They said there may be problems with her kidneys since my amniotic fluid is so low. They also couldn't see her nose or lips.
All I hear with all that is bleh, bleh, bleh, bleh. It's devastating. I don't know what else to call it. But yet I STILL HAVE HOPE. I WILL NEVER LOSE HOPE.
After the appointment we went to my sister's house to spend some time with family. I love being around my niece and nephews. They have no idea what is going on and I love that. Matisse, my oldest nephew always kisses my belly and tells me he can't wait to meet his cousin. That gets me every time. My hope and prayer is that he gets to. He loves her so much already and I am so in love with that thought. Mary has the best cousins in the world who love her already. Rayden, my youngest nephew crawled at full speed directly to me when we walked in. I love holding and cuddling him. It's like he knew exactly what I needed. Macee and Liam, well they are Macee and Liam and it's perfect. They are wild and trouble makers together and can make me laugh like no one else. I love their innocence.
Today and prayer and focus is on John 13:7 "Jesus replied, 'You do not realize now what I am doing, but later you will understand." Lord.... that is my prayer. I pray. I hope. I continue to fight for you Mary.
Below are some pictures from our gender reveal party and celebration yesterday.
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| Everyone wore the color necklace they thought we were having. It was really hard to keep it a secret from the few people who didn't know. |
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| Adorable cupcakes made by Mary's aunts that were secretly pink inside for us to eat after the big reveal. |
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| Two of my favorite little boys waiting for the pink balloons to come back down from heaven. |
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| Could the box have been any cuter? |
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| The Follet side of the family and the Krause side of the family looking at wedding pictures of happy joyous times. |
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| This little guy has let me cuddle him to death the last few days. That smile melts my heart and gives me hope. |
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| She thinks we are having lots of babies. Maybe she knows something about our future. <3 |
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| Food, flowers, friends, family, love, prayers, hope! |
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| Mary's cousin Amanda. I think she is the only one who put her hand on my belly. <3 |
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| He is the best uncle (and daddy) in the whole world! |
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| Quickly trying to cover the pink with frosting as everyone started to show up! |
Sunday, May 10, 2015
The Beginning Of Our Story
I am very new to this whole blogging thing. Please excuse the misspelled words and typos, especially in the first few as this is all very difficult to write out. It has been laid on my heart to share our family's story with our precious baby girl Mary. I don't even know where to start or even what words to say, but I feel like God will use our precious baby to give hope to other mommies who might be struggling or to bring joy to our family as they walk with us.
Friday, May 8, 2015 our lives were forever changed. Sam and I had been so looking forward to our anatomy scan and preparing for our Gender Reveal on Mother's Day. We were excited to see our baby that actually looked more like a baby. We had it all planned out. After we finished the ultrasound, the tech was going to call Nani (my grandma) and tell her the sex. She would then prepare a box of balloons and surprise us on Sunday with the gender of our baby. I went in to the ultrasound worrying we wouldn't be able to see the sex of the baby and we would have to cancel the party. That was the worst thing I could imagine happening. Boy was I naive. May 8, 2015 will be a day that we will never forget.
Sam and I walked into the ultrasound room so excited. I had to drink 32oz of water and hold it so I was a little preoccupied thinking about the discomfort I was experiencing. I laid down on the table and the tech put the warm gel on my belly. Right away we saw her. She looked so little and was in a tight ball. The tech almost immediately said, the baby is all bunched up, this could be difficult. She was moving the tool all around trying to get all the measurements she needed. She looked at the brain, she looked at the spine, but that was all she really could see. She stopped and said she was going to have to do the internal ultrasound because the baby was wrapped up too tight. She told me to go to the bathroom and relieve myself and come back and lay down. She would be back. At this point we still had no idea that she had seen very concerning things. We had heard a strong heartbeat so we were confident all was good. When I was using the bathroom and changing she had gone to alert the doctor of some of her concerns.
I got back on the bed and she started doing the ultrasound again. I looked at her in the eye and said "Don't you just love your job. It's full of so much happiness." It was then I saw the look on her eyes. She was looking very concerned. I finally asked if something was wrong. She responded with YES. I heart stopped and I stopped breathing. She then started to tell us what she was seeing. She said that the baby was measuring small. The baby had way too much fluid in its brain. The baby had something wrong with it's heart. The baby had something very wrong with it's bowels. It was then I told her to stop. I didn't want to see or hear anymore. She listened and started apologizing. Sam and I just sobbed. We didn't know what any of this meant, but we knew that it wasn't good. Once I was able to compose myself enough to walk to another room, we were escorted there and told to wait and the midwife would come in. She came in and starting tell us the same things again. She told us not to lose hope yet because we needed to see a Perinatologist. Our OBGYN office worked fast and diligently to get us an appointment Friday afternoon. They weren't sure it would be possible and that we might have to wait until Monday. I couldn't imagine that. Luckily they were able to get us in right away.
We immediately drove to the office and my big sister (Sissy) and Sam's parents were with us. We had to wait a long time as they were squeezing us in. It felt like eternity. Finally we were called back. We were there for over an hour, with the ultrasound on my belly and we heard all the same things, in more detail, and given the very grim diagnosis. I am literally sick to my stomach as I write all of this out right now. The specialists told us she is almost certain it is Trisomy 13 or Patau's Syndrome. That would mean IF Mary makes it full term, she would probably only live a few minutes if that. Our chances of miscarriage/still birth are greater than 50%. My chances of developing preeclampsia even as early as now is high. As we were having these horrible conversations, the ultrasound was on. There were times I couldn't even look at the screen because it hurt too much. It is seriously the worst pain I have ever felt. Then there were times I would glance up and see her tiny, perfect feet and legs moving ever so slowly.
The doctor said the best case scenario would be that Mary has Trisomy 18 or Edward's Syndrome. This would give us up to a few years with our miracle baby. There are things you almost always see with Trisomy 18 that Mary doesn't have. We have hope though, we pray hard. I had blood-work done Friday, so hopefully we will have answers by Friday. We will see. Tomorrow we see a genetic counselor.
I don't know what to say from here. I don't even know what to do when I finish this blog and close my computer. There are times I don't even know what to say to my amazing husband who hasn't left my side. My heart hurts. My stomach is so upset. I have never felt so awful in my life.
What I do know is that every day I will fight. I will wake up, thank God for another day with Mary, take care of myself the best I can, and love my daughter unconditionally. Sam and I will pray hard for a miracle. We will prepare for the worst and hope for the best. We will do things we would want to do with her when she was born. We will live life to the fullest.
Please join us in our journey as we take each day as it comes. Please join us in prayer. Please ask us how she is doing. Please keep her story going. Please don't feel uncomfortable around us. Please hug us as we cry. Please support us on days that are just too hard. Please thank God for the beautiful children in your life! <3
Friday, May 8, 2015 our lives were forever changed. Sam and I had been so looking forward to our anatomy scan and preparing for our Gender Reveal on Mother's Day. We were excited to see our baby that actually looked more like a baby. We had it all planned out. After we finished the ultrasound, the tech was going to call Nani (my grandma) and tell her the sex. She would then prepare a box of balloons and surprise us on Sunday with the gender of our baby. I went in to the ultrasound worrying we wouldn't be able to see the sex of the baby and we would have to cancel the party. That was the worst thing I could imagine happening. Boy was I naive. May 8, 2015 will be a day that we will never forget.
Sam and I walked into the ultrasound room so excited. I had to drink 32oz of water and hold it so I was a little preoccupied thinking about the discomfort I was experiencing. I laid down on the table and the tech put the warm gel on my belly. Right away we saw her. She looked so little and was in a tight ball. The tech almost immediately said, the baby is all bunched up, this could be difficult. She was moving the tool all around trying to get all the measurements she needed. She looked at the brain, she looked at the spine, but that was all she really could see. She stopped and said she was going to have to do the internal ultrasound because the baby was wrapped up too tight. She told me to go to the bathroom and relieve myself and come back and lay down. She would be back. At this point we still had no idea that she had seen very concerning things. We had heard a strong heartbeat so we were confident all was good. When I was using the bathroom and changing she had gone to alert the doctor of some of her concerns.
I got back on the bed and she started doing the ultrasound again. I looked at her in the eye and said "Don't you just love your job. It's full of so much happiness." It was then I saw the look on her eyes. She was looking very concerned. I finally asked if something was wrong. She responded with YES. I heart stopped and I stopped breathing. She then started to tell us what she was seeing. She said that the baby was measuring small. The baby had way too much fluid in its brain. The baby had something wrong with it's heart. The baby had something very wrong with it's bowels. It was then I told her to stop. I didn't want to see or hear anymore. She listened and started apologizing. Sam and I just sobbed. We didn't know what any of this meant, but we knew that it wasn't good. Once I was able to compose myself enough to walk to another room, we were escorted there and told to wait and the midwife would come in. She came in and starting tell us the same things again. She told us not to lose hope yet because we needed to see a Perinatologist. Our OBGYN office worked fast and diligently to get us an appointment Friday afternoon. They weren't sure it would be possible and that we might have to wait until Monday. I couldn't imagine that. Luckily they were able to get us in right away.
We immediately drove to the office and my big sister (Sissy) and Sam's parents were with us. We had to wait a long time as they were squeezing us in. It felt like eternity. Finally we were called back. We were there for over an hour, with the ultrasound on my belly and we heard all the same things, in more detail, and given the very grim diagnosis. I am literally sick to my stomach as I write all of this out right now. The specialists told us she is almost certain it is Trisomy 13 or Patau's Syndrome. That would mean IF Mary makes it full term, she would probably only live a few minutes if that. Our chances of miscarriage/still birth are greater than 50%. My chances of developing preeclampsia even as early as now is high. As we were having these horrible conversations, the ultrasound was on. There were times I couldn't even look at the screen because it hurt too much. It is seriously the worst pain I have ever felt. Then there were times I would glance up and see her tiny, perfect feet and legs moving ever so slowly.
The doctor said the best case scenario would be that Mary has Trisomy 18 or Edward's Syndrome. This would give us up to a few years with our miracle baby. There are things you almost always see with Trisomy 18 that Mary doesn't have. We have hope though, we pray hard. I had blood-work done Friday, so hopefully we will have answers by Friday. We will see. Tomorrow we see a genetic counselor.
I don't know what to say from here. I don't even know what to do when I finish this blog and close my computer. There are times I don't even know what to say to my amazing husband who hasn't left my side. My heart hurts. My stomach is so upset. I have never felt so awful in my life.
What I do know is that every day I will fight. I will wake up, thank God for another day with Mary, take care of myself the best I can, and love my daughter unconditionally. Sam and I will pray hard for a miracle. We will prepare for the worst and hope for the best. We will do things we would want to do with her when she was born. We will live life to the fullest.
Please join us in our journey as we take each day as it comes. Please join us in prayer. Please ask us how she is doing. Please keep her story going. Please don't feel uncomfortable around us. Please hug us as we cry. Please support us on days that are just too hard. Please thank God for the beautiful children in your life! <3
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