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!
