A Challenging Week

Sometimes, this journey that Sam and I are walking through is just so hard. Other times, we are able to laugh and smile our way through the days. I don't really understand what makes the difference. Sometimes it's as stupid as a commercial, other times a conversation comes up with friends about their precious ones growing up. This week...has just been very hard. A few times this week, Mary's heartbeat has been a little whacky. It's always scary to hear that, but ultimately we know that there isn't anything we can do. Thank the Lord, each time her heartbeat and leveled back out. The doctor assured us that as long as it returns to "normal" within a day or so, we are good. We met with yet another new doctor on Thursday. We are seeing a new one every week because they want everyone to be comfortable with us as there is no guarantee who will deliver us. This week's doctor was fabulous. She came in and said the the main doctor had briefed the whole office on our situation and she was excited to meet us and walk this journey with us. I was blown away. I can't imagine it's easy having patients like us. It really warmed by heart. She answered a lot of questions we had. She talked about my blood pressure, which was good this week. We talked about all the warning signs to look for. It was a pretty typical appointment. The difference was, I didn't feel like we were an unfortunate burden for her. I honestly felt like she cared. It was awesome.

Right after our appointment, we headed to Ryan House. Now that we are at 25 weeks, it's time to start solidifying our birth and potentially death plans. I had so much anxiety over this appointment it was crazy. We got to Ryan House early so we had to wait. The house is such an amazing place. Yet, it is such an incredibly sad place as well. One of the nurses greeted us. She was so kind even though she was in the process of helping another family. As parents, Sam and I fit right in with all the families there. That reality sucks. I am so thankful for a place though that loves all kids with life-limiting conditions from conception, through their life on earth, and then through death. Someday, when Sam and I are millionaires, I can't wait to be a financial supporter of this organization. In time, I will also volunteer there as a way to honor our precious Mary. 

It was finally our turn to meet with the wonderful lady who continues to walk with us through our journey. We were taken into a quiet room that overlooks the memory garden. She touched base with us on how we are doing and all that typical stuff. I instantly started getting really hot and sweating. Sam wasn't hot at all, so I knew it was my emotions. We talked about how it's time to make plans. She explained that when I go into labor, or when I'm induced depending on the situation, to make sure we call her. She will be there to support us through the journey. She will make sure that the right tests are ordered after birth, she will make sure Mary is comfortable. Ugh. I started feeling sick as we talked about this. She explained what she will do for the big part of Mary's spine that outside (the spina bifida). She will cover it and make it the most comfortable. I wouldn't have even thought of things like that. We talked about how we will make sure Mary is comfortable for as long as she's with us. They will most likely give her some pain medicine. We can also provide oxygen for her, but she explained to us that oxygen won't do much because her brain controls the breathing and thats where she has the abnormality. We will probably do it anyways, it will make me feel better. The conversation then turned to how it's time to write all of this out. Ryan House will provide us a workbook of sorts where we will fill out every detail to make sure everything happens the way we want it. We have to make decisions like what kind of pain control will I use, will we want Mary monitored throughout the birth (if she's alive), who do we want in the room, who will baptize her, who will be doing pictures, which funeral home will be on standby. Such hard conversations. I couldn't take it anymore. I tried everything in my power to wrap up the conversation so we could leave. Ryan House will send us this "workbook" of sorts this weekend. When it's all done, Ryan House will send it to the hospital we chose and make sure the charge nurse is aware. It really is a beautiful system they have set up. I am so thankful for it. But it still....SUCKS. 

Once we were out and in the car, I just knew I was going to throw up. Sam and I were supposed to go to dinner afterwards, but I just wanted to be home. Sam was such a big support again and was totally fine taking me home. As we started driving, he looked over at me and said so lovingly, "It's okay to cry." Well then I lost it. I don't know where all these tears come from. God seems to be giving me an unlimited supply. Once we talked it through, and I cried it out, I felt much better. 

Yesterday we got a letter from my insurance company stating they are denying paying for some major tests because they are "not medically necessary" due to the fact that Mary still doesn't have a diagnosis. This really upset me. I cried so much again (see the tears just keep coming)! I called insurance and they were so rude. I cried as I explained that even though I am so young, I am most probably carrying a baby with Trisomy 13. I could have killed the woman, she had no compassion. I then called the doctor who was wonderful. They are going to help us fight it. It is such a small thing, but the medical bills are already piling up.... and it's tough because of course we are doing everything we can for Mary, but at the end of it, we won't have a precious bundle of joy to watch grow up. 

Today, Sam and I put together Mary's crib. Even though she probably won't get to use it, it was important to Sam that we have one. He stands by me and honors all kinds of things that are important to me, so I loved doing something for him. There are no words to describe accurately how I felt as I sat in the rocking chair, rocking Mary, as daddy put together her crib. Surprisingly I didn't cry. I was so proud of the man I call my husband. He rocked it like a champ. After it was done, we put all the special gifts we've been given for her in there. It now looks more like a nursery, but is something I'm going to have to get used to. This journey is so hard, but yet I will praise the One who has chosen me to carry Mary through it all. 

Sam, being the strongest daddy in the world. I love this man so much.

Her crib and rocking chair. The saddest nursery I've ever seen.

A Bittersweet Father's Day

Yesterday was definitely the most unique Father's Day I've ever experienced. I didn't see my dad yesterday (we will do Father's Day with him in a week or two), but I celebrated Sam being a daddy. All things considered, we had a great day. 

Saturday night, I had my meltdown. I had wanted to get Sam something to honor him on Father's Day. I know most dads don't celebrate if their baby isn't born yet, but of course we celebrated because we aren't sure what the future holds for our family. I searched the internet and looked and looked. The problem I had was that each time I found something I liked, it ended up being too upsetting to go out and get. Saturday night when Sam asked me what we should do on Sunday, I lost it. I told him how much I wanted to do something special for him, but yet I just wasn't brave enough. He is the most amazing man, and was just touched with the fact I thought about it. It just sucks so much that a simple commercial holiday, makes for an incredibly difficult day for us. I cried and cried, I want the world to see Sam as a daddy. I want to see him interact with Mary. I want to have memories with them. Sadly though, this reality may not come true (at least not now). So we make memories daily. After some cuddles from Sam, I felt better. It seems backwards that he was comforting me even though it was Father's Day. 

Yesterday morning Sam and I skipped church and went to see Jurassic World. We really enjoyed the movie. Even seeing a movie was difficult though. Everywhere around us were dads with their families. A lot of the ads were centered about dads and babies. There was this particular ad that was painful to watch, and they showed it twice! The second time they showed it, we laughed at how ironic this was. After the movie we took Sam's dad (and mom) to lunch. It was delicious. We then went back to his parents where we played games for a few hours. Right before we left, Sam's mom wanted a picture with Sam and his dad. Sam looked at me and said "I want a picture with my daughter too". He doesn't know this (until he reads it) but those words made my heart swell with pride. I almost lost it right there. The first few pictures were funny because Doug had his arm around Sam, and then Sam tried to put his arm around Mary (my belly)... it didn't really work! It was fun though. On our way home last night, the reality of the day finally hit Sam, which in turn really hit me. After a few sad moments, we were able to finish the day together, on a happy positive note. 

It was a great day. Sure, there were some very hard moments, but overall we had a great day. I thank God all the time for Sam. It takes an incredibly strong man to walk through a situation like with the courage and patience he has. I can imagine I am not the easiest or happiest person to live with, but  yet he does it daily with a smile on his face and unconditional love flowing from his heart! Mary and I are very blessed women. 

A Little Bit of Heaven on Earth

We got home from San Diego yesterday but I was too tired to write.  It's crazy to me how tired I was yesterday from just riding in a car. It took zero effect on my part yet I was so tired. We had an absolutely amazing weekend in San Diego on the beach. There is so much in my heart to say about our weekend with Mary, yet most of it I want to keep to ourselves. We laughed in San Diego and we cried. We celebrated and we mourned. Despite our up and down emotions, we were really able to relax and just have some fun. Something really crazy happened too, my blood pressure was lower there. I was just in a different state of mind on our little get away. Nothing really mattered. We had nothing to do by any given time. 

I was also shocked by my body. I got winded so easily. It's almost embarrassing to admit, but just going up the stairs I would be out of breath. It was another reminder that my body is struggling to meet every one of Mary's needs. I got really frustrated a few times by it and would cry. I don't understand how in 5.5 months time, I can go from running with no trouble, to struggling to catch my breath while walking up stairs. Obviously I'd live the rest of my life feeling nauseous and winded with a racing heart if it meant I could have my Mary. It's so hard though to think that my body is giving everything it has, and ultimately Jesus may be calling her home. I guess this is the part of the pregnancy I'm struggling with most. The physical part of this pregnancy. It's completely wearing me down to feel nauseous all the time. My heart is always working extra hard (my average heartbeat this pregnancy has been 110), my lungs are struggling to give both of us the air we need. I can't wear pants or anything tight on my belly for more than a few minutes before I am so uncomfortable due to the low fluid.  The unfortunate part is that this all follows me wherever I go. It even came to California with us. The very fortunate part is that I have the best husband in the world who goes above and beyond to help me through this difficult times. 

Our journey with Mary began in San Diego, so the city will forever hold an extra special place in our hearts. Sitting on the beach, with Sam snuggled next to us, was as close to heaven as I can imagine on earth. We sat as a family together, enjoying the sights and sounds of the waves. Mission beach was VERY crowded as it's right in the middle of summer. Everywhere we looked there was a young family with a baby/toddler little girl. My heart ached with jealously as that is all I want.  I realized quickly, that I needed to focus on my Mary, snuggled inside of me instead of looking all around. God has blessed me so greatly with our family. Sure, it will always look different than most onlookers see it, but I am so thankful we got to take Mary back to the ocean. Sam went on a walk down the beach and brought me back the tiniest little sand-dollar. I will forever keep that and treasure it as a souvenir of our family get-a-way with Mary. We loved every second of our trip. We also talked a lot, and told Mary that whenever she is ready, or if she is ever in pain, that we want her to earn her wings and fly back home to paradise. As a mommy, it kills me to think of the potential pain she is experiencing. I want to take it all from her but I can't. Sam and I continue to pray for a miracle of total healing, but we are also coming to terms with the idea that God may have other plans. We told Mary that we will be very sad, but we will get through it. I never, ever want her to experience any pain. 

Tonight we went to my sister's house to tell her, her husband and the boys goodbye as they are going to France for a few weeks. Much to my surprise, Matisse didn't talk about Mary. I was so thankful for this, not because I don't want her talked about, but because it makes me so sad to hear all his plans of what he's going to do with Mary. Matisse and Liam made all of us paper bracelet that had "magic powers" in them. He told me again and again tonight that my magic "power" is to be "brave".  Sam's is "strength". This boy never ceases to give me hope and bring me pure joy. He has no idea how much I need that "super power" right now. It was so fitting though. As we get further along in this pregnancy, I will have to remember that Matisse told me I'm "brave" and Sam is "strong". Just as a side-note, Sissy (my big sister) got the magic power of "kicking", we definitely had a good laugh at that one. 

Below are just two pictures of our little family. Tonight, I thank God for Sam and Mary. My heart is so full of thankfulness for my little family. 

A Little Family Vacation

I haven't updated lately, but there hasn't been much to report. I am enjoying summer break and the relaxation that comes with it. I am managing to find a few things a day to do to keep myself busy until Sam gets home from work. Life has been nice and calm, which is something we no longer take for granted. Our evenings have been full of quiet moments and good laughs with our little family. 

Today I went to the doctor. I had been seeing a midwife up until our anatomy scan. Since that day over a month ago, I have been followed by a perinatologist. They will monitor baby through pregnancy, but not me. We needed a regular gynecologist to deliver our sweet Mary. One specific doctor had been recommended. I made the appointment over 3 weeks ago. She is very popular. After today's appointment, I understand why. She was fabulous. She sat with me for a long time and talked about everything and made sure I understood everything. I loved her. 

Unfortunately, at today's appointment my blood pressure was elevated. I was shocked. I have had super low blood pressure my whole pregnancy. When I say low, I mean like 90/50ish. They rechecked my blood pressure a few times throughout our appointment and it remained elevated. The good news is that I don't have protein in my urine. This means it is not preeclampsia yet (hopefully never)! I ask for prayers for strength for my body. It is really giving everything possible for Mary. The extreme nausea, fast heartbeat, and now blood pressure, make it difficult every day. I still thank God for each day with our Mary. Tonight, I am feeling extra sick which ultimately makes my emotional state poorer. Nights like tonight as tough because all I can do is cry. 

This weekend Sam, Mary and I are going to California for a little get away. We have a beautiful condo to stay in right on the beach. A family friend is very, very generous to bless us with this little retreat to get away. While I am worried about the long drive with my nausea being so bad, I am so looking forward to a few days of relaxation and having fun and making memories. My heart has been longing for the beach. My prayer is that Sam and I are able to bond even more with our baby girl on the beach of the ocean. 

Thank you all for your continued prayers for our little family. We definitely feel them! Please pray that my blood pressure remains in the normal range and that my morning (ALL DAY LONG) sickness subsides. I feel like I would be enjoying my pregnancy way more if it weren't for always feeling sick. I am so excited for our little family vacation this weekend! 

No Words Are Adequate To Explain Our Emotions

So I know I said I wasn't going to blog tonight, but I changed my mind. I tend to do that a lot. Today was our next appointment. It was also the echo of Mary's heart. We were meeting with the head specialist in our perinatology group. I won't say too much to keep her name confidential, but she is pretty high up in Arizona. She definitely knows her stuff. She wasn't as warm and fuzzy as our last doctor, but she knows a lot, and I appreciate that. She (and her med student) still sat in a circle with us as we cried and tried to understand our reality. 

Today's appointment was at 1:00pm. We left the office at 4:20pm. It was a long appointment. The first hour and half was ultrasound and getting more measurements since she was bigger. I love seeing her alive, even if it's inside of me. I know ultrasounds can be somewhat controversial, but I am so thankful for them in our situation. There are days I struggle to "connect" with Mary because I'm scared. When I get to see her heart beating and her slight movements, I am completely enamored. It reminds me why I continue to fight through these struggles. 

We saw both hands, both feet, heart, brain, kidney (only one), bladder, stomach, and face. Each part of her tiny body was looked at closely. Her heart was beating so strongly. Her tummy was full. Her legs were still crossed. She is still in a ball. When we were looking at her face, we could also see her hands and feet because of her position. I knew enough to know that wasn't normal. I also knew that after more than a month, she hadn't moved, and that couldn't be good. I know often I go into detail, but tonight it's just too hard. 

The only "good" news we got was that her bowels seem to be normal now. Yay! Unfortunately, we got a lot more "bad" news. Our sweet Mary is missing a big part of her aorta. This is essential for life without my placenta. She can't oxygenate her blood without it. She also has Spina Bifida. The bottom of her spinal cord is outside her body. ABSOLUTELY HEARTBREAKING. This is in addition to her brain abnormalities. Today, one side of her brain was substantially bigger than the other side. The fluid in her brain is just getting worse. She also only has one kidney. While they aren't certain, the doctor is pretty sure her kidney isn't functioning at full capacity because of my low fluid. I don't have any words to describe how I felt today. Sam and my sister weren't nearly as shocked as I was. Sam reminded me that we are preparing for the worst and hoping and praying for the best. I guess I had forgotten. I was so full of hope, and in this appointment, it was completely taken away. I sobbed yet again. I feel just as crappy as I did a month ago. I am handling it better, but my heart hurts just the same. I so badly want a complete healing for Mary, but each time we discover more. Mary is also measuring almost 3 weeks behind in size. The doctor explained that this gap is just going to keep increasing because she isn't growing or developing normally. 

I don't even know what to say from here. I love Mary so much, and I can't believe this is really happening. I know without a doubt that God is right next to us, and wiping all my tears away. I don't have any doubt, but yet I am so angry. I cannot wrap my head around all of this. I know He works all things for good, but I don't see any good right now. We thank God for each day we have with her. The doctor explained the only reason she is still alive is because I"m healthy and my body is supporting her. I thank God for my overall good health. 

From here, we will continue to love Mary unconditionally. We will value every day and moment with her. We will experience life and make memories with her. She is our baby and no abnormality will change that. Mary Margaret, mommy and daddy love you so much!  

We will continue to praise God through this storm....

The Crazy Part of Time

It's hard to believe that tomorrow will mark four weeks since our lives changed forever. I think back over the last month and it seems like time has flown by, but yet at the same time, I can't believe it's only been one month. In the last month I have gone through so many emotional changes. I think it is safe to say that I am officially coming to terms with reality. While many see it as devastating, I am learning to love it. Sure, my heart hurts so much. I hate to think of all the choices we have to make still. I hate to think of the reality of what maternity leave may look it. I hate a lot of thoughts still, but I love carrying her. I am so thankful we have made it this far. I remember thinking, four weeks ago, that they doctors weren't sure we'd even make it to tomorrow's appointment. They said, if you make it, then we will do an echo of her heart. Guess what?! We have made it!! Thank you God for that. We have loved every minute of our time with Mary. Last night, we all fell asleep with Sam's hand on my belly. It was pure happiness. We were one, little happy family, snuggled together for the night. 

Tomorrow is our appointment with the new specialist. We have been turned over to this specialist because she focuses on babies with the types of abnormalities Mary has. I have heard nothing but great things. I pray this is true. Tomorrow we will have another level 2 ultrasound and a 3D ultrasound to get the best views. We are praying to see her other kidney (both in excellent condition), and her other hand and her little fingers, and her bladder. We will also look at her brain and heart again with this doctor as she is much more experienced. We ask you to join us in prayer for complete healing of Mary IF that is God's will, and some more specific requests. 
1. That my amniotic fluid continue to remain "normal". 
2. That Mary's kidney still looks great and is working perfectly. 
3. That we get answers in regards to her heart and bowels. 
4. A better understanding of what level of holoprosencephaly she has. 
5. That she is NOT still in the tight ball she has been in. 
6. A level of peace that only He can provide for Sam and me as we sit through another difficult appointment where they tell us again that she is "incompatible with life." 

That is a lot. But I have faith that our God can provide all of these. I also know that faith is sometimes not getting the things we want, and trusting anyways. Lastly, I ask you to join us in prayer that I can feel Mary move inside of me. I so badly long to feel her movements. I also want Sam to be able to feel her move. Such a simple thing, but yet it is SO big to us. 

But now, this is what the Lord says- he 

who created you, O Jacob, he who formed you, 

O Israel: "Fear not, for I have redeemed you; 

I have summoned you by name; you are mine.

When you pass through the waters,

I will be with you; and when you 

pass through rivers,

they will not sweep over you. 

When you walk through the fire, 

you will not be burned;

the flames will not set you ablaze. 

For I am the Lord, your God, 

the Holy One of Israel, your Savior."

Isaiah 43:1-3

Quilts Full of Love

Today has been a great day. It's technically my second day of summer, but for some reason it feels like the first. I have a horrible head cold but I'm not letting that stop me (most of the time). This morning I met my mom, Nani, and Sissy (my big sister) at Jo-Ann's Fabric store. We were meeting to pick material for the quilt Nani and Sissy are going to make Mary.

Even before we found out everything that Mary had going on, I had asked Nani to make her a quilt. She has a quilt pattern that she and Sissy made for me when I was born. I loved my quilt to pieces, seriously. I still have my red quilt and treasure it. When Sissy got pregnant with Matisse, Nani and I made him a quilt from the same pattern. I guess I'm a bad aunt because I never made Liam, Macee, or Rayden one...oops! I knew from the time I was pregnant, I wanted my baby to have the same quilt as me. 

Even though making the quilt was my request, and I asked to go shopping with them, when I actually got there, I was a little uncomfortable. I felt like I didn't have a strong opinion on anything. I was very excited to be with all my favorite people, but it was also a little sad. I should have been excited from the beginning. I finally warmed up to the idea and had a lot of fun. I knew I wanted it to be pinkish. I had no idea how many different shades of pink there were. We started by pulling out every bundle of material we liked. No joke, we had probably 20 different pink materials out. There were several other people in the same area as us, and they were rolling their eyes at us. We were taking up a lot of room. I'm sure their attitudes would be very different if they had any idea what we were working on. After over an hour, we finally agreed on six different fabrics. I love them! Each one of us picked one material. This quilt will be made with nothing but the highest level of love. I can't wait for it to be done. Mary will love it! 

After shopping we went to lunch. We went to Red Lobster, even though I don't like fish. I sure do love their bread though. I know Mary did too. When we finished lunch my mom and Nani went back to Tucson. I was sad to see them go. I love being with family. I feel like I am happiest when surrounded by family. 

I have six and half more weeks of summer to find things to do. My goal is to have the best summer yet. I want to make memories with Mary and Sam (and the rest of our family). I want our little family to create the best memories in whatever time we have. We already have a few trips in the works. It gives me something fun to look forward too. We have a big appointment on Friday, so please continue to pray for healing of Mary's body and strength and courage for Sam and me.