Anencephaly

Almost two weeks have passed since we were given the news that has changed us, our lives and our perspective on life forever. I was looking forward to a busy and exciting week. Russ and I got home from a Caribbean cruise Sunday, I worked a few days, then Thursday after the dental convention we had our 20 week ultrasound. We were so excited to see our baby, hear the baby's heart beating and of course find out if baby was a boy or a girl. Russ came home from work early and we drove to the doctors office together. We didn't bring Bryce. He was already at the babysitter's house and we figured he wouldn't be patient sitting there during a long appointment. Our group of doctors just opened their new office and we sat admiring the new waiting room. Finally, it was our turn. I was weighed and the nurse took my blood pressure. She had to take it three times because I was so nervous. I am not sure what I was nervous about at this point. Maybe I was anxious, maybe I couldn't wait to hear those words that our baby was perfect. A friend of mine found out at her 20 week ultrasound that her baby girl had a heart problem that would require surgery soon after she was born and I think these thoughts lingered in my mind making me nervous. Third time was a charm and my blood pressure came down. The ultrasound tech took us into the room. She made the usual small talk. I asked if the doctor would look at the ultrasound today and she said if I see something wrong I will go get the doctor and he will look right away. She started doing our ultrasound and within minutes she said I am going to grab the doctor before he leaves for the day. She left the room and tears streamed down my face. Russ looked at me and said it will be fine. I am sure he was just as nervous as I was but he hid it well. He was being strong for me. While we waited we talked a little bit about what it could be but we had no idea. Thoughts ran through my head: whatever the problem is we can handle it, we will still have our baby, we had seen the heartbeat and saw the baby moving like crazy, so for a brief second I convinced myself that maybe nothing was wrong. She came back and tried to make small talk. She told me to calm down because I was going to hyperventilate. Finally I said can you just tell me what you are looking at? She said without any further explanation that she was looking at something in the head with the brain. She tried to determine the sex of the baby but was unable to because the legs were crossed and the baby was constantly moving. After what seemed like forever, the doctor came in. Dr. Bean. I have seen him all 3 times with this pregnancy and I had really liked him but after today he became very special to me. He sat down and started looking and almost instantly he looked at me and said It appears that your baby has anencephaly. Do you know what that means? I nodded yes. I have taken enough anatomy and physiology classes to know what that is. My baby didn't have a brain. Russ said I don't know can you please explain to me. The doctor continued, " anencephaly means that your baby lacks a brain. The part the causes movement, breathing and heartbeat are there but nothing else. This condition is incompatible with life." He showed us on the ultrasound and pointed out the area where there was no skull or brain. I didn't look over at Russ but I felt like my entire world was crashing down. How could this be real? I took all my vitamins, I only took Tylenol once and was very careful with everything else. He ended the ultrasound there. We didn't find out the sex of our baby. He sat us up and said this is not your fault. It was nothing you ate or did or didn't do. This happens very early in pregnancy and there was nothing you could do. The next step will be to go to a Maternal Fetal Medicine doctor to confirm the diagnosis. He said I am very sorry but I know I am not wrong. I know something is wrong. He said on the social side of this, don't tell anyone until after you go to the specialist tomorrow but once it is confirmed tell everyone and tell them quickly. Don't hide it because you will find yourself avoiding people and lying and it will make things worse. He also said that he has seen this be an experience people were able to look back on fondly. He was very comforting. He walked us over to the nurse that scheduled our appointment with the specialist. Russ stood around the corner and I could hear him sobbing. The doctor gave him a hug and said some things to him. The nurse then walked us to the back door so we didn't have to walk in front of everyone with tears in our eyes. We walked out with broken hearts, tons of questions and no pictures of our baby.

The drive to pick Bryce up is a blur. We both cried. We asked how could this happen? Why did this happen? During this time we were getting calls and texts wondering if our baby was a boy or a girl. Russ went into the babysitter's house to get Bryce. I sent cupcakes because it was the day before his birthday and I wanted him to celebrate with his friends. They were still eating cupcakes and hadn't had their party yet. I'm sure the looks on our faces let the babysitter know something was wrong but we weren't ready to let those words come out of our mouths yet. Bryce finished his cupcake, got his gift and we went home. We turned on cartoons for him. Russ and I laid in our bed and sobbed. We talked a little and looked up anencephaly online. We found several blogs about families who went through the same things. Although these blogs made us cry, they gave us information we didn't have. At some point Russ' phone rang, it was his dad and he ignored the call like we did all the others. Two minutes later our doorbell rang. It was Kirk stopping by on his way home from work. He had been working nearby and hasn't stopped by for a while. I opened the door and let him in. I'm sure he could tell I'd been crying. He talked to Bryce for a few second and Russ came into the living room. Kirk asked what's going on. I couldn't say anything. I knew if I said it out loud it would be real. Russ spoke up and told him what the doctor said. He told us he didn't know we had a doctors appointment that day and that he crossed three lanes of traffic because he just felt like he should stop in on us. We were so grateful to have him there. He talked to us and told us that we would have our baby again one day, that our baby only needed to come to Earth to receive a body and that she will again be with our Heavenly Father. He hugged me and told me to never think that it is because I am a bad mother. Russ asked if Kirk could give me a blessing. He did and it was one of the most spiritual experiences of my life. He blessed me that, together with Russ, we would make it through this. That our relationship would grow stronger. That Heavenly Father loves me and knows the pain that we are going through. That He would not give me more than I could handle. He said that our babies spirit is too pure to come live on Earth. After he was done we all cried. I will be forever grateful for the Priesthood and for Kirk listening to the prompting to come to our house. Another thing he said that really stood out to us was that we need to let those who want to serve us. Sometimes I know it is difficult for me to ask for help and I think this will be one thing that I will have to do. Once he left I looked at my phone and saw texts and calls from my family and Russ' mom. I called my mom but she didn't answer. The first person I told was Tanner, my brother. He cried. He said they all knew something was wrong because they hadn't heard from me. Next I talked to my Aunt Sherri. She isn't that much older than me and we have always been more like sisters than aunt and niece. She is a PA and had a sister-in-law go through this exact same thing just two years ago, so she knows exactly what anencephaly is. She cried and said she was so sorry and wished it was her instead of me. Finally I got a hold of my mom. She was so sad and I asked her to tell my Nana because I just couldn't tell one more person. The rest of the evening I continued to ignore texts from friends and went through the motions of life. Russ made frozen pizza. I hadn't planned to make dinner because I had just thought we would be out celebrating our new baby boy or girl. We put Bryce to bed and I went out and bought him balloons and streamers to decorate for his birthday morning. Russ asked if I was sure I wanted to go out. I didn't want Bryce's birthday to be any less special. My mom called again later and said she was going to drive the 8 hours to get here on Friday to be here with us and to help me with Bryce's birthday party. I told her to wait because she would have to go back on Sunday and we didn't know when or what the next step would be. Driving home from the party store was the first time I had been alone since we found out. I cried the whole way. I kept thinking why did this happen to me? My next thought was I would never wish this on anyone but why me? I got a text from Sherri that night that read

 "The Lord takes many away, even in infancy, that they may

escape the envy of man, and the sorrows and evils of this 

present world; they were too pure, too lovely, to live on earth;

therefore if rightly considered, instead of mourning we have reason to 

rejoice as they are delivered from eveil, and we shall

soon have them again."-Joseph Smith

I love you Misty and my heart breaks for you and 

I'm praying for you. The Lord has a plan for your life.

Russ and I laid in bed the rest of the night reading blogs, talking, crying and not sleeping. We fell asleep after 1 am.

I woke up at 6 am and couldn't go back to sleep. The relief that sleeping gave my heart and mind was quickly ended when I woke up remembering my reality. We up and got ready. Bryce loved his balloons and ate a leftover cupcake for breakfast. We took him out for lunch at Chickfila before dropping him off at Tanner's so we could go to our appointment. The Maternal Fetal Medicine doctor was in Provo at Utah Valley Hospital. The nurse took us back, weighed me and took my blood pressure. She then introduced us to the ultrasound tech who would be doing our sono. She took us into the room and asked if we knew why were there. I hated that question only because then I had to tell her that our doctor suspected anencephaly. She said okay that is what I understood as well. So she went through and showed us all of the anatomy of our baby. She said she guessed our baby was a girl but it was difficult to tell because her legs were crossed and she was moving around a lot again. Our baby was measuring right on schedule. She was measured around her abdomen because there is no way to get an accurate head circumference. She printed out the pictures and burned a DVD for us. She gave us some of the ultrasound pictures. We have some of her legs and arms but she took the ones of the head to show the doctor. Dr. Schemmer came in and introduced himself. He again asked if we knew why were there and I responded yes. He then asked me to explain what anencephaly meant. I am not sure why he made me do this. Probably to ensure we knew and that we weren't just glazing over when the doctors and ultrasound techs were talking to us. He said after reviewing the ultrasound photos he could confirm our baby had anencephaly but he did another ultrasound to confirm. He went through each part of her precious body. He said the ultrasound tech couldn't find her stomach but he was able to find it. Every single part of our baby girl's body was perfect except her head. He showed us where, near her forehead/eyebrow area, there was no more skull or brain. I don't think either of us thought there would be a miracle and Dr. Schemmer would tell us Dr. Bean was wrong and that our baby girl was perfectly healthy but at that moment I knew this was really happening. Next we went into the genetic counselors office to talk a little more. This was our chance to ask all the questions we had been thinking about all night. This is the information Dr. Schemmer shared with us:

• there is only a .1-.3% chance a baby will develop anencephaly 
• our chances of having a second baby with anencephaly or another neural tube defect is now approximately 3%
• Anencephaly is a multifactorial condition meaning it is a combination of environmental and genetic factors.
• I will have to take 4 mg of folic acid before trying to conceive again
• We will have to wait 6-12 months before trying to conceive again 
• Organs cannot be donated because the baby is not brain dead

This is were things get hard. Now that we know our baby girl will not survive beyond birth what will we do. Dr. Schemmer gave us our options which included: inducing early or waiting until I am full term and delivering her then. He explained that there is no difference in either of these options. She will not live either way. Nothing will change that. We will not be able to donate her organs if she is carried to full term. Some of these babies just pass away or go into labor early or go way past their due dates.  Russ and I hadn't discussed what we would do before going to this appointment because we really didn't know our options but when asked what we were thinking we both knew we would induce early. It just felt like what was right for us. We knew that our baby girl would be whole sooner. She would be back with family that came before and family that will come after her. We know she will be back with our loving Heavenly Father. I also don't know if I could walk around for 4 more months with people asking when I am due or if I'm having a boy or girl. We signed the paper that we wanted to induce early. You must wait 72 hours from that time to be induced. A doctor from the University of Utah also had to confirm Dr. Bean and Dr. Schemmer's diagnosis. After speaking with Dr. Schemmer the genetic counselor took over. She took a family history from each of us and then she told us about a program called Angel Watch. She took my phone number to give to the nurse that runs the program. We left this appointment with fewer questions and almost in a state of shock. This was real! Now we just had to wait.

That afternoon we picked Bryce up from Tanner's and took him to make a Build-a-Bear for his birthday. Tanner, Lauren, my mom, and Nana got us flowers and Sherri sent another beautiful bouquet. We tried to help him have a good day. Russ' mom came over after that and brought us some treats and visited with us. We also had Kim call all of Russ' siblings to tell them. We finally decided it was time to tell some of our friends. We sent out a text to our close friends. I know that sounds impersonal but we didn't have it in us to call everyone and explain it to them. We said that during the ultrasound the doctor suspected anencephaly (lack of brain except the portion that causes breathing, heartbeat and movement) Our baby girl will have no chance of surviving beyond birth and I will be induced in the next few weeks. In a way it felt good to finally tell them. Everyone was so supportive and said such kind things.

Saturday we still had Bryce's birthday party. Family and friends helped so much. My friend Gabe made Bryce's cake for me and family member brought food and picked pizzas up. It was difficult to see everyone face to face. Everyone had the sad look in their eyes but tried not to let it show. We didn't bring it up. Hugs were exchanged. Russ' sister brought flowers. His sister in law, Sara, brought us a meal for the next day. Kim also brought a doll dress for our baby girl to wear. It is beautiful cream satin with ruffles. We were glad to have had the party. Bryce was thrilled and keeping busy was a nice distraction. After his party the assistants I work with brought us cupcakes and flowers. It amazes me how sweet and thoughtful everyone is.

The next week is pretty much a blur. Tons of texts. Calls. Meals. Visits. Hugs. Tears. Russ and I had a lot of talks. Most of the time we were okay but there are those times late at night where I would break down and ask why? Cry and say why can't I keep MY baby? I love all the flowers people have brought us. They are so beautiful but every time I see them I know why they are there. It is because someone cares and doesn't know what to say when your baby girl is going to die.

Tuesday afternoon I finally got in touch with my OB. The nurse was so kind and helped me get our appointment scheduled. She had to talk to the nurse over high risk deliveries and call me back. Once she did she asked if I would be available to go in Wednesday, the next day, at 7 am to be induced. I panicked. I am glad I had to the courage to say no. I wasn't ready. There were so many unanswered questions and I knew I needed more time with my baby girl. I really want to see Dr. Bean so the soonest he would be back in the hospital was Thursday, March 27. I agreed to that day. It seemed so far in the future. I asked if I needed to come into see Dr. Bean before and she said no but after talking to him she thinks he has some really good insight for me and she would recommend me coming in. I will go in to see him Wednesday before the induction.

Friday Russ and I went to the funeral home to make arrangements. I am a planner and I also wanted to get everything done before she was born. I don't know how I'll feel then so I wanted to do as much as a I could. We picked out her "bed" I will call it. It is more a box. It is not like a casket you would picture. They had a tiny bed that was only 12 inches long and probably 5 wide. She would fit in that one but I can't imagine putting her in that tiny bed. We ended up getting the next larger one. I want to cover her with a blanket and give her a stuffed animal. I know we take nothing with us to the other side but I will never have the chance to give her gifts while she is alive and I want that opportunity.  We made all the arrangements we could but the guy said to call him on Friday after she is born to set everything up. He is worried that I don't realize I am giving birth and will need a little time for my body to heal. It was so surreal being in there. I never in my wildest, worst dreams thought I would be picking out a burial bed for my baby. I left their with a heavy heart.

We went home to meet with Angel Watch. A nurse and a bereavement specialist came. They were both so kind. I loved that they didn't look at us the way everyone else has for the past week, like we are fragile and a wrong look would break us. They both hugged us as they walked in. We told them a little bit about us and they told us about what they do. Marilyn is a nurse and will be at the birth if she can get away from her research job. Heather will be there. The hospital will contact her and she will come and help in anyway we need. She will help us dress our baby girl, crowd control, take pictures and do hand and foot prints for us. She also brought some dresses for me to look at. They were so tiny, so much smaller than the one Kim brought me. These ones are beautifully crotched by a 75 year old woman who donates them. Heather will bring those to the hospital and I will pick one then. She said some mothers keep the dress as a momento and bury their baby in a white nightgown she has. They were so helpful and answered some questions we had. Marilyn said that labor can take anywhere from 8-12 hours. She said there isn't really any almost there. It usually goes really slow and then almost instantly she will be born. She said it takes so long because your cervix doesn't thin out because your body doesn't think it should be in labor at 22 weeks. Russ was so grateful and got emotional as he thanked them for taking on such a difficult job. They said they feel like being in the homes and hospital rooms with people they often feel like they are in the temple. As they left they hugged us and gave us their contact information. Marilyn told us she felt a strong spirit in our home. I would recommend Angel Watch to anyone going through something like we are. I wasn't sure I wanted them to come at first because I didn't understand what they do but I am so glad they came.

Saturday was one of those hard moments for me. Russ' brother and his wife just had their first baby last month. They stopped by to visit and bring us a treat. It broke my heart to see Bryce talking and playing with the baby. I longed so much for him to have his own baby to play with and love. When they left I sat in my closet and cried. Why can't I have my baby too? Why can't Bryce have his baby sister? I know there is a plan for me but still I don't understand. Bryce saw me crying and said Mama crying and almost started crying himself. It broke my heart to see him so sad. 

Now it is just two days before our sweet baby Olivia will be born. I have enjoyed this time I have felt her kicking around in my stomach. Russ has been able to feel her moving the last few days. It means so much for me to have him actually feel and not just talk about her. I know he loves her so much too. He is so tender and breaks down just as often, or more than I do. We have been completely overwhelmed with all the kindness and love we have received from our family and friends. My brother and Lauren call and text every day and Lauren keeps me full on treats and my favorite drinks. I have never felt peoples prayers the way I have these past few weeks. We know our Heavenly Father loves us and has a plan for us and our lives. We have not been angry at all, although we do not yet understand why. Sometimes I feel like I will make it through this and other times I feel like I can't survive this. I am always a little nervous when I go into a restaurant or into to Target because I am afraid I will see someone I know that doesn't know what is happening yet. I dread telling those people who still don't know. Tonight we drove to the temple grounds to walk around and we had to drive by the hospital to get there. I got nervous and stressed just driving by it. Tomorrow I am going in to talk to Dr. Bean to get more information and answer more questions for us. I know the worst is yet to come and I hope that my faith will continue to carry me.