Adjusting to "normal"

It's been over a week since we said our last goodbye to our precious Mary. This past week has been difficult. Family went home, Sam went back to work, and life became our new "normal". Nothing seems normal anymore though. Nothing is easy. I am beginning to slowly feel better physically, but it's a slow process. Sleeping is uncomfortable. I have been having nightmares which are horrible. It makes sleeping so undesirable which is exactly what I need. I keep reaching down to touch my tummy just to realize she is no longer there. It is so not fair. I have told Sam many times this week that I am a mom with no purpose. My milk has come in. It is a completely horrible experience. My body is trying so hard to feed my baby. I so wish there was a way I could let my body know that there is no need for milk. I am thankful that I am able to produce milk, but it's daily reminder that Mary is not here. When I go out, I still have to wear maternity clothes. I still have a baby belly and a very big incision. I still look pregnant, and I dread the day anyone in public asks. Our house is quiet. Just like it was before we had her. A house is not supposed to be quiet after you have a baby. Yet another reminder. Silly things make me break down and fall apart. We talk about all the dreams we are now realizing wont come to pass. It. is. hard. Everything about me and in me wants to be a mommy with a living baby. I am a mommy, but the vast majority of the world doesn't know that. That breaks my heart. 

Thankfully, I am a daughter of a very loving God who is helping us through this incredible journey. Each day we find joy. Some days it's easy, some days it's the hardest thing you can imagine. Each day we find something to look forward to in the future. All week I have been upset because I didn't have anything to fill my time with. I don't have a hobby. I searched the web for hours. I talked with friends and family. Finally, yesterday I discovered what I am going to do with my time. I am going to learn to garden. I am excited that I have something to fill my time with while Sam is at work. 

Last Saturday, August 22nd, 2015, we said goodbye to Mary. I am not ready to talk about my feelings and emotions surrounding the day. I will say that we were incredibly touched by the turnout at her service. God has surrounded us with love. There were people at her service I would never have guessed. It was just perfect. As perfect as a service for your baby can be. Until I write out the day, enjoy some pictures of the day. I am also attaching the slideshow Sam and I made of Mary's life. 

Some got stuck in the tree. I think it made it look pretty!

Two of my four favorite kids ever. All four of them keep me going on difficult days. 

The Best Worst Day Of Our Lives

As I sit here and reflect over the last week and half, I am blown away at how much our lives have changed. I have known that I wanted and needed to write out the "story", but yet I have been avoiding it. I don't know why. Of course it's difficult to share, but at the same time I haven't wanted to admit that we are left without Mary on this earth. I reach down to rub my tummy often and I realize that she is no longer there. I wake up in the middle of the night holding my tummy, and then have to come to the realization all over again that she is no longer warm and safe inside me. Instead, she is running pain free in heaven. I am comforted by that thought, but my heart physically aches for my daughter to be back in my arms.

Last Monday, August 10th, 2015 I became very sick. I woke up feeling off but decided to go to work and push through my IEP meeting. After the IEP was over around 8:00am I still wasn't feeling better. It wasn't unusual to wake up feeling yucky. Usually though, after a few hours, I feel better. I was taking my blood pressure periodically throughout the morning and it was creeping up. Finally at 11:00am, I decided it was time for me to go home. I called Sam on my way home and told him I wasn't feeling good. I got home and ate lunch. Within an hour of being home, everything changed. Around 12:00pm I was washing my hands and I blacked out and fell. I didn't pass out because I remember every part of it. I couldn't breathe. I was gasping for air and started to panic. I called Sam crying hysterically and he rushed home. After he got home and helped me up we headed into Labor and Delivery. The rest of that night was a blur. My blood pressure was very high still so they admitted me to the hospital and started collecting my urine for 24 hours to see if it was indeed preeclampsia.

Tuesday, August 11th, 2015 I called my family and had them come up. I had the horrible headache now and knew that something was wrong. After being bounced around from labor and delivery to antepartum, we got settled in our new home away from home. Honestly, Tuesday and Wednesday are giant blurs. Sam and I (and our families) knew that I had preeclampsia and that it was time for Mary to come. All the doctors agreed. Except my urine didn't show quite enough protein to officially call it preeclampsia. All the doctors wanted to deliver Mary. This is where things got tricky. Because I hadn't quite reached the threshold of protein in my urine, the head perinatologist had to sign off to the c-section. We wait three days for this "amazing" doctor to come and see us. As we waited I got sicker and sicker. My head was pounding, my blood pressure was high, and I was swelling up like a balloon. Finally at 11:40pm on Wednesday, August 12th, 2015, the doctor came in and said yes, it's preeclampsia and you need to deliver.

One of the hardest parts of the week were the horrible conversations we were having with doctors about the delivery of Mary. I had another level 2 ultrasound done on Tuesday morning. Mary's body was measuring around 25 weeks gestation and her head was measuring 36 weeks gestation. That is a huge, huge difference. Our plan always was deliver Mary vaginally as they wouldn't do a c-section because it delays us conceiving again and it was a physical reminder of the baby we would't have. Things changed after we got her official head measurements. I won't go into detail about the conversations we had with doctors but they were HORRIBLE. I am sick to my stomach thinking about them. Mary was also still breech. This created really big problems. The doctors had conversations with us about head entrapment. It was horrible. I am not going to go into detail. If you want to know, which you DON'T, you can look it up. The conversations are the worst things I can ever dream of. After the conversations, and the realization that God was telling us it was time to meet our Mary, we decided on a c-section.

Thursday, August 13th, 2015. Mary's birth day. What a whirlwind of a day that was. The doctor who was on at the hospital we were at was the ONE doctor that I didn't like. It is important to note now that I do like her and respect her. She is a very new doctor and has never had to deal with a situation like ours. She was in over her head. She did a lot of my post-op care. I like to think that she will be more comfortable next time, God forbid a situation like ours comes up, thanks to Mary. I'm not sure how it all worked out, but our favorite doctor was on at the other hospital. She made special arrangements to switch hospitals so she could deliver our Mary through c-section. The c-section was supposed to be at 2pm. She wasn't born until 5:09pm. It took a lot to coordinate all the doctors and nurses and everyone. Around 4:30pm, Sam, Jacob who baptized Mary, and two amazing photographers from Now I Lay Me Down To Sleep, and I walked into the OR. There is no possible way for me to describe the feelings I was experiencing. I was going to meet my daughter, who I had spent every day with for 229 days. A part of me also still felt like I was "playing" God in delivering her, even though my body was so, so sick. Sam, Jacob and the photographers had to wait outside until I got my spinal block and was set up for surgery. The anesthesiologist was amazing. She got me all numbed up quickly. My doctor held my face and talked me through the pain. My nurse wiped my tears as they just poured and poured and poured. Once was numb and laying down, my blood pressure and heart rate skyrocketed. Part of this was obviously emotions, but the other was the preeclampsia. It got very scary. They couldn't get my blood pressure down. They told me they were worried they were going to have to put me to sleep. I DID not want that. I needed Sam with me. The anesthesiologist rubbed my shoulders, my jaw and held my hand. She assured me she was doing her best to stabilize me. It was so scary. Finally Sam and Jacob and our photographers were allowed in. There was my doctor, another doctor, five nurses, the neonatologist for Mary, two NICU nurses, Sam, Jacob, and the two photographers all crammed into the tiniest OR. They started during the surgery right away. Sam and I realized that it was taking much longer to get Mary out than they had expected. I was crying the whole time. Sam held me close and we prayed like we have never prayed before. I'm sure glad God is big enough to handle all the emotions.  I just knew that we werent going to hear Mary cry. I felt like because it was taking so long, that she wasn't going to be alive. Finally, they announced she was born. Sam ran to her side where the neonatologist and NICU nurses were cleaning her up. We weren't going to do supportive care, but they cleaned her mouth and covered her spina bifida. Sam told me she was alive. She was moving her tiny, underdeveloped body. Thank the Lord. I sit here with tears streaming down my face, praising and thanking God for this miracle. They put a warmer bag and wrapped her up. Sam carried her over to me. He was beaming with pride that she was alive. Sam laid her on my naked chest and Jacob baptized her. We prayed so hard over her little body. I couldn't stop telling her how perfect she was. She was beautiful. We also cried as we told her to go back to heaven as soon as she was ready. We didn't want her to experience any pain. She was struggling to breathe. It was the hardest thing I have ever watched. At one point, I told her she was just perfect and how I was going to miss her so much, but how beyond thankful I was to hold her warm body. She pulled her tiny hand out and laid it on my lips. It was the single most wonderful moment of my whole life. Even though we knew she would soon be going to heaven, every sick day, every scary moment, was worth this. She looked back and forth from mommy to daddy. It took them awhile to get me closed up. Her breaths were getting further and further apart. We enjoyed every single second with her. As soon as I was closed up, they took us to a room for recovery. They normally keep mommy, daddy, and baby in recovery for 1-2 hours because it's such a critical time for the moms health. They made a huge exception and gave us a big room for recovery so our whole family could see Mary. Our family was told this never happens, but we wanted Mary to know just how loved she was (and still is!). When they wheeled us into our room, it was so quiet. Mary was on my chest. Although there were about 20 in the room, all I remember is Sam and Mary. We were almost positive that Mary passed before we made it to recovery. When the neonatologist came to check her heart, we were prepared for the worst. Much to our surprise her heartbeat was actually beating BETTER than when she was born. The look on the doctors face was priceless. He looked like a proud papa bear. Our Mary was the strongest little fighter. She loved to prove everyone wrong. Although we were overwhelmed with joy, we could tell that her time with us was quickly coming to a close. Unfortunately, right after the neonatologist checked her, my health started to deteriorate quickly. My blood pressure was sky-high and I was shaking out of control. I knew it was time for Sam to take Mary to love on her until she passed. It was the hardest thing ever to let go of her, but I knew I needed to take care of me for Sam, and I knew Sam was perfectly able to love her to the end of her life. He quickly took off his shirt and we moved her right to his chest. That is where she took her last breath and her heart stopped. The next time the neonatologist came to check, our Mary had gone home to be with the Lord. She was pain and disability free. 

To say that we were heartbroken doesn't do justice to what we were feeling. We cried and cried and cried. We thanked God for the amazing and perfect hour and 46 minutes our Mary lived with us. Once she had gone to heaven, we passed her around and all our family got to hold her. She had the most loved experience on earth. After several hours, I stabilized, and our family went home. Sam and I spent the night holding our daughter and loving her. We looked over every single part of her body. It was perfect. Even though she had Triploidy, God made her perfectly. She had every part of her body. She had two fingers on each hand that were webbed. The amazing thing though, is that even though her fingers were webbed, she had separate perfect fingernails. She had ten, precious fingernails. She also had ten little toenails. Her big toes were off to the side, almost like thumbs. They were so, so perfect! We loved them. Her ears and nose and lips were my favorite. I was so just amazed at how God made them so perfect. Everyone who held Mary said she had Sam's nose. It makes so happy to think of her little nose, being just like daddy. 

The next day, we knew it was time to say goodbye to her earthly body. We dressed Mary in the most beautiful white dress made by Nani. It looked so beautiful on her. I wasn't able to move still, so Sam got her dressed. I sat there and cried and cried. Sam looked so natural, dressing his daughter for her final resting. There is something so wrong about having to do this, but he did it with such grace and courage. He was so delicate and he made her look just perfect. Once she was dressed, she was placed back in my arms. I couldn't stand to think that this was goodbye. I knew she was already in heaven, but my arms ached to hold her forever. Finally we called the nurse to come and take it. It was horrible. We didn't want to know when she was picked up by the funeral home. Instead, we asked the funeral home to call and let us know when she arrived. 

We were released from the hospital on Sunday afternoon. Leaving was so, so hard. I was so anxious because this room was the last placed we held our baby. Sam assured me that home was the best place we could be. He was right. Getting home was hard, but wonderful. I am so thankful that Sam has been by my side day and night throughout this whole process. I can't imagine my life without him. It has been the hardest week, but God has blessed me with the best husband ever. 

Sunday night, our first night home, was very rough. I realized before bed that I was having trouble breathing. I thought it was just anxiety. Throughout the night it got worse. By 4:00am, I realized something was very wrong. I was wheezing very bad. We rushed back to the ER where they readmitted me. I have pneumonia (probably from throwing up during the c-section) and pulmonary edema from the excessive swelling from the preeclampsia. I was given at least 20 breathing treatments, lots of antibiotics, and we didn't allow visitors. I was also given lots of lasix. I lost 6 pounds in 24 hours due to being "drained". We are realizing how fragile life is. I was released on Tuesday, with strict instructions to breathe deep, cough, and take my medicine. Thank you for all the continued prayers. I am still fighting the swelling and pneumonia, but I know I'm in the best care. 

Today, it has been a week since we lost our perfect daughter. There have been more tears the last seven days, sleepless nights, horrible nightmares, crushed dreams. There have also been great laughs and happy moments. Our lives are so much richer because of our experience with our daughter. We are surrounded by family and friends this week and are assured that Mary is with God. Her story is so far from over. Doctors this week are dumbfounded that she lived outside of me. No one expected it. Mary has touched so many lives. We are now two days away from her celebration of life. The anxiety is overtaking me at moments. I know though, that God will provide the strength to get through. God will provide the means to fully recover, and God will carry us if we are too weak. I thank God for the best, worst day of my life. 

Here is my very favorite picture. More will be shared later, but tonight and forever, this picture shows the beauty of our daughter, Mary Margaret! 

The Hardest Decision Of Our Life

I have been putting off writing this post. Not because I don't want to share the continuation of our journey, but because I haven't wanted to admit to myself. Within the last week and half a lot has changed. We received the final diagnosis of Triploidy or 69xxx. No one doubted the preliminary report, so the final diagnosis was not surprising or noteworthy. The difference is that my body has started to really struggle. I have had sporadic contractions. The biggest change though is severe edema or swelling. I know that swelling in feet and hands is normal. The problem is, I'm swelling in my hands, feet, legs, arms, chest, back, stomach, everywhere. The swelling never goes away and continues to get worse every day. If you have ever had severe swelling you know how uncomfortable it is. It makes every step painful. My blood pressure is also high. Thankfully I don't have preeclampsia, but the doctors say I am very close. Last week at our weekly appointment the doctors really suggested that we induce soon. They are very concerned about my health. They are also very concerned about the size of Mary's head and the ability to fit through the birthing canal. I also have no measurable amniotic fluid left which means there is a chance Mary is experiencing pain. That is my worst nightmare. 

After the appointment I was so upset. I can't imagine my life without Mary inside of me. I can't imagine choosing to induce early, knowing that once we meet her she will quickly go back to heaven. Sam and I went back and forth on whether we thought it was morally okay. We understood that my life is potentially in danger. The severe edema is likely to turn into preeclampsia any minute. The extreme edema can also lead to complications with my heart and kidneys. BUT we know that ultimately we are choosing to meet Mary and then release her back to God. The doctors shared that inducing when my body is still strong and her heartbeat is strong, gives us the best chance of holding our daughter alive. We talked, we prayed, we thought, we processed. Our family was very supportive of whatever we chose. Some family members expressed their concern for my health. We were so torn. 

Saturday morning we met with our pastor and his wife. To say that we were anxious about the meeting is an understatement. We knew we were going to have to verbalize our thoughts and fears with them, even though we had kept many to ourselves and each other. We knew we had to open hearts and ears to hear whatever God was speaking through our pastor. We talked and cried for a little over an hour. The things we talked about are too raw to talk about right now. Someday I may choose to discuss them because, honestly it was such a healing conversation. We expressed at the very beginning that we were concerned that by choosing to induce early would be like "playing God". We have trusted God with our whole hearts this entire pregnancy. We chose to carry to term. We have seen God work miracles in her little body getting her 32 weeks. The problem is now that we have to make the "choice". I have lost sleep over this decision. I have made myself sick. Sam and I were honestly torn. After the conversation with our pastor and his wife we came to a decision. This week we will be inducing labor. We discussed that sacrificing my health and life to give her a few more days in the womb is not Godly. God has shown us that she is meant to teach through her life inside my womb. Carrying her a few days or weeks is not going to change the outcome. What it will likely change is the rest of my life. Getting sicker and sicker every day is not healthy for me, Sam or our future family. Making this decision was so hard. THE HARDEST CHOICE WE HAVE EVER MADE.  

I am not sure what day this week we will meet our daughter, but it is very soon. When we schedule it, I will make sure to share. I am at peace with the decision, but not at peace with the reality of what it means. I am heartbroken that within the next week the world will no longer physically see me as a mommy. I am heartbroken that my family will travel up here to meet Mary and then to lay her to rest. I ask for prayers for strength for me, Sam and Mary as we all adjust to what this means. My blood pressure was so high last night, I knew I had preeclampsia, but yet God got us through. Our biggest prayer is that Mary continues to be strong throughout labor. We want to hold her and love her while she breathes. We have to trust Gods will be done this week. We also pray for peace and strength for our whole family. We ask for prayers for my body. Pray that my body is strong enough to deliver Mary. We pray for no complications. We ask for prayers that her head is small enough she can fit (and survive) the labor. We pray that she flips. She is breech. They will not do a c-section unless I am in immediate danger or dying. Being breech is significantly harder on her and on me. We ask for prayers for Sam. Special prayers for him. Prayers for strength and peace and wisdom to continue to lead our family. 

Today Sam, Mary and I have spent the whole day together getting ready. We went to my sisters house this morning to spend time with them. We laughed which is so appreciated. We would not have been able to get through this journey without my sister. We went to Starbucks. We loved life in the moment. Then Sam, Mary and I went to costco to make sure the house is stocked with food for family as they are around this week. We got home and cleaned the whole house. Sam earns the husband of the year award for helping me clean the entire house. I know no one would judge us if our house was a mess, but it has brought us peace. We feel like we are ready for her. We are proud and thankful for the strength to get through today. Tonight we will go on probably our last date to dinner before her arrival. We were given a generous gift of money to go out on a date one last time before Mary comes.  We have tossed around so many places to go. Still I'm not sure where we will go, but we will be so thankful for the opportunity. Tonight we will cuddle and thank God for our family. This week will probably be the hardest week of our lives. 

Below is the best sound in the world! It is the strong and perfect heartbeat of Mary! 

Maternity Pictures

We have had a very emotional week. We realize our time with Mary on earth is coming to an end...much sooner than we expected. However, we still praise God through this storm. I am not ready to share all the details yet. Instead, I will share our maternity pictures. These aren't all of them, but some of our favorites. We are so thankful for the wonderful opportunity we were gifted. 

The Diagnosis Is In

I'm sure by now, most people have heard that we have a final and complete diagnosis for our sweet Mary thanks to the amniocentesis. Mary has Triploidy. It is a rare chromosomal abnormality. Mary has 69 chromosomes instead of the normal 46. It is reported that 1-3% of all conceptions are triploidy, but 99% of them end in miscarriage before pregnancy is even detected. Of the rare few who make it to a positive pregnancy test, most babies miscarry within the first trimester. With all of these statistics, it really is a miracle that Mary is still living inside of me at 30.5 weeks. Our perinatologist says we will go down in medical books because we have made it this far in pregnancy. Mary is a fighter. 

While I am proud to carry such a little fighter, the diagnosis has been a hard pill for me to swallow. I just don't understand why my baby has to be this statistic. I love that she is still with me, but I hate that she will not survive long-term. She has a less than 1% chance of making it to term alive. The doctors still believe she will pass inside of me. For the last 13 weeks I have held onto hope. I have dreamed dreams of having Mary with us on earth. I know that she would be sick and have many, many difficulties BUT I had hope. I know many people around were more realistic than me, but I am Mary's mommy. I have to believe in her and fight for her when no one else can or does. Sadly, I am coming to term with the fact that God has special plans for Mary in heaven. My prayer is now that I get to hold her alive...even if for just one small, tiny, breath. I want to tell her how much I love her while she is on earth. I want her baptized. I want to see her eyes. There are so many things I still hope for, even though life on earth with mommy and daddy long term isn't one anymore. I am now trying to accept this. I am trying to find peace in this. I am trying to trust God in this. BUT. IT. IS. HARD. 

In three weeks from today is our next ultrasound. We discussed with the doctor today that I may be induced after that ultrasound. I will be close to 35 weeks. Mary's head is growing exponentially and at a very rapid rate. I will be induced when her head can still fit through the birth canal. The doctors won't do a c-section because of the extended recovery time for me, and the risks it can have on future pregnancies. I am having a hard time accepting this. I don't disagree, but I don't agree either. I have come to realize that I never want to be done with this journey. I won't ever be ready for her to come and go back home. For the last 30.5 weeks, our lives have revolved around her. I love feeling her. I love living with her. Whether she passes tonight inside of me, or is born in three weeks from now, I won't be ready. I am relying on God to help me get through these last few days, weeks, whatever it may be. I know that I am not strong enough to do this on my own. Of course I have Sam, and my big sister, and all of our family, BUT I don't want to say goodbye. There is nothing easy about this journey. My body is suffering big time, but I would suffer every day the rest of my life to have complete healing for her. I love Mary and am not ready to say goodbye. 

Below is a picture of the DNA of a baby with Triploidy. It is unreal to me. I am so thankful for our miracle. She is perfect...even with her 69 chromosomes.