Our son's fatal diagnosis . . .

Rory and I have an amazing daughter who will be four at the end of this month. We were so very excited in early January 2011 when we learned that we were going to have another child. After having a miscarriage in September 2010 my doctors wanted to be cautious so I had several lab tests to ensure that the appropriate levels (hcg and progesterone) were rising. Of course I was ecstatic every time I received the call that things were progressing well. The nurses were so happy to deliver the news "Congratulations your levels more than doubled!!" They had no idea how truly ecstatic I was to receive this news (well, maybe the squeals gave me away :-).  After a few weeks I talked myself into relaxing a little and enjoying the wonderful news. I was cautious about everything and wanted to ensure we had another healthy pregnancy and baby. We had two ultrasounds early in the pregnancy. One between 6 and 7 weeks and another at 9 weeks. We were lucky to hear our baby's heartbeat during the first ultrasound as the doctor informed us that if we had come earlier that day we may not have heard it because it had just become audible with the medical technology she had available. I had gone in to talk to the doctor about a nasty sinus infection one day later and was told that while the heart rate was normal for a baby at 7 weeks the doctor just wanted to be sure that the rate was increasing. So approximately two weeks later and after a lot of self talk about how everything was going to be a-ok I went back in to discover our baby's heart rate increased and was perfectly normal. It was a beautiful day. Of course, like many pregnant women I began getting slightly nervous and counting down the days until my next appt. (12 week check up). Everything went very well. During our next appt. (16 weeks) the doctor struggled a little with finding our little one's heartbeat in the exam room. He stated that he would just send me over for an ultrasound if he couldn't pick it up but assured me not to worry. I had started crying anyway and the hair on the sides of my head was soaked. The doctor provided so much comfort and just as he had suspected he found our child's heartbeat within seconds of me losing control. His heart rate and the beautiful sound of his heart beat were perfect. All was right in the world again. That is until our next appt and 20 week ultrasound. I had tossed around the idea of bringing our daughter with us to the appt because I wanted her to enjoy hearing if we were having a boy or girl with Rory and I rather than waiting to hear it from us. In hindsight, I have wondered why I felt so strongly about bringing her and wished I wouldn't have. The three of us entered the stenographer's exam room. She told me that my bladder was a little too full and she was having difficulty seeing everything. She reported that she could not tell us if we were having a boy or girl and that I would most definitely need to come back for more pictures. I looked over and saw our baby's spine and commented that it looked like the most perfect curved spine. The stenographer stated that she doesn't care so much if it is curved as if it is closed at the end. I said something along the lines of "it looks good right?" I remember her saying "mmmhmmm." She then handed me a picture of our angels tiny little foot. For days I asked myself why in the world I didn't have it figured out that something was wrong right then and there. I waited to be called to see the doctor. The nurse called me back and my daughter came with me. Rory waited for us in the waiting room. As we were waiting in the waiting room I heard my doctor say "yes, get her husband." I have no idea why but I immediately thought that another woman may be going into labor and then Rory walked in the room. He asked what was wrong and we looked at each other with horror. My doctor walked in and began sharing the devastating news that our sweet baby has anencephaly, that his neural tube did not close properly and he is missing part of his brain and skull. She told us that he would not live long if he survived the next 20 weeks and that we had two options . . . terminate or carry. Two options that at the time seemed like the most confusing, horrific, unbelievable choices that anyone had ever laid before me. It took all that I had to remain on the chair in one piece. Rory was amazing. He held my hand and kept me sturdy on the chair as he stood beside me. Our daughter asked me why I was crying and I told her that our sweet baby is so very, very sick and we may not get to meet him. It's the first thing that came to my mind. She was so sweet and said that she was sad too after covering my lap with her jacket. She's an absolutely amazing little girl and while I believe that children should know that their parents also experience a variety of emotions, I will forever regret her seeing me that moment. Luckily, I was able to make it to the restroom to call my mom, share the news, ask for her help before losing myself in sorrow. After collecting myself, I opened the door to find once again my husband there being the wonderful daddy he is while waiting to keep me steady as we walked to our car. We were sent to the hospital for an ultrasound in the perinatal department. Before our second ultrasound my mom met us at the hospital and my little sister, Abbey, arrived shortly after. They provided a safe and comfortable environment for our daughter while we completed the ultrasound. The staff at the hospital were wonderful but unfortunately they only confirmed the diagnosis no matter how hard I prayed for something to change in the short 30-60 minutes (which seemed like seconds) between appointments. The stenographer at St. John's asked if we knew and/or wanted to know the gender of our baby. I quietly told her after a few moments that we wanted to know. Immediately, she told us we were having a boy. Squeezing each others hands throughout the ultrasound my husband and I allowed ourselves to experience our emotions as we watched our son moving actively on the screen. He seemed so perfect. While all the medical professionals reported that our son was imperfect I could only think about how perfect he appeared . . . how perfect he was to me. My mom, older sister, Kristy (who dropped everything and came in record time), Abbey, and Ryan arrived at our house shortly after we returned home. They held me, loved me and supported me as we all processed the shocking news. I remember calling my sister-in-law, Jen, to tell her the news. It seemed impossible that I was talking about about my baby. Rory laid down with our baby girl and napped, which made me worry for him because he was only going to wake up to the reality of what seemed like the worst nightmare all over again. But, knowing that he and our daughter were napping peacefully right above me warmed my heart even under the circumstances. I called my dad to share the news, which he had already known (my big sis helping in every possible way to make anything and everything a little bit easier). He told me he loved me and he would be on his way. I am so grateful to Rory and our wonderfully amazing family who provided unconditional love and made it possible to get through the first 48+ hours after learning of our son's fatal diagnosis. Knowing that they will always be with us brings me tremendous comfort. I am also grateful to God for bringing me peace, strength and courage during this incredibly difficult time.