EARLYREISERS

(Warning lots of tissue and hard topics ahead, proceed with caution)

I know many want to know what was going on with our beautiful baby Emmalee. Sorry, I have been so closed about this. It was at first hard to get the news your baby has anencephaly and then to have to explain to everyone what it is and why. Why? has been the hardest part for me. I know I'm not the best at taking my prenatals but I know I was taking them as I knew the consequences of not doing so. So to not know why this happened to me has been a real struggle. Or to think I may have caused this and the guilt you feel. It wears me down. I know, everyone tells me it's not my fault and I think I believe them but my basic instinct of mother's guilt overrides it all.

So if you want to know about anencephaly it is where the top of the neural tube, the tube that forms the brain and spinal column, does not close properly at the top or on the head during the 3rd and 4th week of development of a fetus (spina bifida is where the bottom does not close). As a result the skull bones never form and the brain is exposed to amniotic fluid and leaks out and never develops fully.

When we were told that Emmalee had anencephaly I was in shock. But I was warned beforehand, and especially the night before my ultrasound I was strongly warned that something was wrong. So in my heart I knew but I just blew it off thinking I was being paranoid. I told the ultrasound technician that I thought something was wrong. But honestly I was relieved while watching the ultrasound. Everything looked fine to me. The lady left, and gave no indication that something was wrong. Then Brent took the girls and went to walk around the hospital while the ultrasound Dr. looked at the results. So all of a sudden the ultrasound Dr. came in and said, " Your baby is going to die, she has a 100% mortality rate and there is nothing you can do. She has a condition called anenecephaly"....and went on and on. I stopped her and said what are you talking about? I am so confused. I had gone into shock and no one was there with any comfort, just really harsh news presented in a really harsh and hard way. The technician was in the room as well and had a look of horror on her face. I think she was as surprised as I was at how the news was being presented to me. When the ultrasound Dr. finally gave up and left because I was in too much shock, the technician just came over and hugged me and said she was so sorry and she would go find my husband so we could talk to the genetic counselor and get more information. I told her I would call him and tell him to come back. When we talked to the genetic counselor we were given two choices. One to keep the baby and if the baby survived birth it would live for only a short time, most likely a few hours is all. Or the other choice to abort the baby because the baby will eventually die, whether in utero or during or shortly after birth. I think everyone thought we should abort the baby and move on. My OB Dr. who is a very kind Dr. even stated that she would abort as the outcome is death for the baby and that we would put me in danger (as pregnancy carries it's own risks) if we were to keep the baby.

So we weighed the two, yes, we did think about aborting the baby, but came to the conclusion that this child was sent to us and we would do everything we could to give her life and that the only way she was going to have life at all was to have me carry her. I got a sweet blessing from my husband and knew we had made the right decision, even though everyone said it would be hard, including Heavenly Father. I had no clue until after the holidays and Annabelle's birthday were over. So the start of Febuary got really long and drawn out. I was in anticipatory grief. I knew it and I knew that was the reason I couldn't sleep, think, or focus. Brent was anxious that something would happen to me in delivery and he would lose both his wife and his little baby.

Have I mentioned that I had gotten a job at the beginning of November, then a week later I was called as the primary chorister and then two weeks later we got the news of my baby. I was feeling very overwhelmed by life but all those things quickly turned into blessings. My job kept my mind busy during my nights and some downtime during the day and my calling kept me very sheltered from the ward. I have a great Primary Presidency that has been a great support to me through this.

We had to make so many decisions for the labor and delivery with this baby, you wouldn't believe it. We had to choose whether or not to do life support, c-section, and a two page list of things you don't want to think about regarding the birth. We finally figured it all out the night before my induction date.

Two days before my induction we told our extended family and a few close friends to fast and pray for us. I felt it right away. Sat., Sun. and Mon. I slept through the night, which I had not done in months (if anyone knows me, you know I need at least 8-10 hours of sleep a night to function).

My induction was set for 4/10/2012 as these babies don't put enough pressure on your cervix to open it, nor do you release the hormone to start labor, so going into labor on your own is quite impossible.Well we had decided to not break my water on the morning of my induction so the bag of water could put pressure on my cervix and keep the baby protected. The statistics state that if we broke my bag of waters there was an increase from 18% to 36% of my baby being born still, which is not what we wanted, we really wanted to meet her, give her a name and a blessing and spend time with her.

So I was induced at 7:30am and was given tons and tons of pitocin. I went from a 1 to a 4 by 4:45pm. So needless to say I wasn't moving so we decided to break my water. It was the hardest decision of my life. Right after my Dr. broke my water I cried and cried, I thought I had just killed my baby. We knew to get me an epidural right away as when we broke my bag of water with Rebecca I had her an hour and 45min later. The anesthiologist came in and my nurse tried to get him to do a block then the epidural but he wouldn't do it. So she started working on my delivery table which I thought was funny because I wasn't really moving but she knew! My contractions were horrible 5 min later and very hard to bear. I had to try and stay still while he put it in. It took him FOREVER! Like 25-30 min. So by the time he was done he said it should take 10-20 min to kick in.

I looked at my nurse and said to her, "I think I'm going to have a bowel movement, I'm so sorry." Her look was that of complete surprise, she said I was probably going to have a my baby. I thought, not again, not without an epidural. She called my Dr. then called whoever was closest to my room to come in and deliver this baby. The cute resident was apologizing for not meeting me sooner and I told her that it was OK and just deliver the baby. So 45 min after we broke my water I had Baby Emmalee with no epidural again. My cute Dr. missed another delivery and I don't know if the resident even knew that the baby she was delivering had a major birth defect. I didn't have to push or anything, she just came out. I guess it was because she only weighed 4lbs 8oz and was 16 inches long.

Right when she came out they put a hat on her head and gave her to me. The most beautiful baby. I thought I would be scared or even a little hesitant as she would look different. But none of that mattered, she was my baby girl, a peanut, and I loved her with all my heart. She was still purple and not breathing but the nurse stated she had a heartbeat and then suctioned out her mouth. She breathed and I was so happy. She was ALIVE. SHE WAS ALIVE. The weight lifted from my decision to break my water and here she was alive. My dad came in from the waiting room. He had been there all day waiting, even though I told him to wait at the hotel and watch funny movies, but he is as stubborn as I am, so my husband says. Brent's dad came up and Brent and his dad gave Emmalee her name and blessing. Her blessing was so sweet and comforting. I just loved it. We tape recorded it so we could send it out to the family as we did not know how much time we would have with Emmalee.

All our family came, including Annabelle and Rebecca, and the sweet photographer came in from Now I Lay Me Down to Sleep to take Emmalee's and her family's picture. It was so nice but I felt bad for baby Emmalee as she spent an hour taking photographs right after she was born. She was a trooper through it all. We got to stay in the labor and delivery room as long as we wanted and we got a very private room off the hall and around a corner which I thought was very thoughtful and nice. We then were moved to the maternity ward because my baby lived and got the BEST care. We stayed for two days and were offered to stay another night in the twilight room but we wanted to go home.

We did not get any sleep those days because we couldn't put Emmalee down. Really. She knew when she wasn't being held and told you. She never cried but did have a heart breaking whimper. We at first thought she didn't have the basic brain function to feel pain, but as we soon learned she did have that function to some degree and it broke our hearts. It's hard to watch your little daughter feel pain, too hard I might say. There were nights that we prayed for her to go back to Heavenly Father because it was more than we could bear to see her in pain. We were so tired and confused the whole time. Everyone worried about the lack of sleep we were getting but we were more worried about our baby.

We were expecting her to pass away in the hospital within the first hour, then the next 24 hours and then when she beat the odds and lived two days we thought we just might get her for a month or two. Everytime we thought it might be her last moments with us she seemed to fight back to stay with us longer. Once we got home we had a hospice person come in and go over all the things we would need, that they would provide for us. They were sweet and very caring. We were taught in the hospital how to change her head dressing. It's funny because I thought I never really wanted to see her "broken" head. I did not want to remember her that way. But when it came right down to it we had to not only see her head but change her head dressing and do it by ourselves. I kept telling myself you can do hard things, and I could.

She had such a strong heartbeat we thought she might live a lot longer. Isn't that how it always goes, you prepare yourself for her passing at the hospital, then you get a curveball and get to take her home completely unprepared, and then you plan on her living longer and she passes. It's almost as though we were being taught over and over again, "not my will but Thine be done."

I knew that her passing would be better for her as she wouldn't feel the pain anymore, but when it actually happened I felt guilty for thinking that and longed to have her back. I just wanted her back and knew that I couldn't have her back until later. But I don't want later, I want now. It's so hard for me. Harder than I ever thought. My heart breaks everytime I think of her, I cry constantly.

Annabelle always says, "Mommy misses Emmalee" whenever I cry. She asks lots of hard questions all the time. I'll give you some examples, "Is Emmalee going to go Heaven and come back with a new head?" "Can Jesus fix Emmalee's head with hot glue?" "Did Jesus run out of heads like mine and Rebecca's and give Emmalee a broken one?" "Can we have another baby but this time without a broken head?"

We had to explain to Annabelle why this happened and the plan of salvation a week before my induction. Because no one really knew and Annabelle was so excited to have another sister we decided not to tell her till right before the delivery. That gave her a week to process the whole situation and she did. She knew Emmalee's head was broken and that she would go back to Heavenly Father a lot sooner than the rest of the family. She has been great through the turmoil and Rebecca is just so loving. She just wanted to give Emmalee kisses all the time and see her and point to her mouth, eyes, nose and "hat," which was her head dressing. Annabelle really liked to hold Emmalee. Annabelle had said the whole time that Emmalee was going to come home and we would always tell her "maybe." She knew the whole time.

Our kids make us face the reality that life doesn't stop when you desperately need it to. I know we need to go on, even though crawling into a hole and mourning for the next year sounds wonderful as well. I wish I could stop crying, I am normally an even keel person. But now I'm a basket case, completely out of sorts. I feel so bad for Brent the most. I can't talk to people about this because I just cry so he fields all of the phone calls, writes the obituary, takes care of our kids because I just can't. Literally.

I'm writing this more for me. Because it's easier for me to write than to talk about it. Someday I'll give you a call and hopefully I won't cry. Someday I'll be my new normal again. When I worked at the rape recovery center I would often tell victims of rape that their lives would be a new normal and I thought I understood, at least through empathy what that meant, but now that I need to adjust to my new normal I realize that I had no clue.