Thursday, April 4, 2013

Diagnosis

I have been toying with the idea of writing a blog, mainly as a therapeutic outlet for myself as we go through this devastating journey. I should back up a bit and start from the beginning. This pregnancy is our second child. I had to work on my husband a bit to get him to agree to a second baby since they are so much work :) So we weren't exactly planning this pregnancy. We were both very excited to find out we would be adding one more sweetie to our family. We found out the due date would be June 18, 2013. So that would put this one about two years and three months younger than our amazing, sweet, ornery daughter, Kendall. We waited the typical three months to tell people we were expecting. Everyone was excited for us and while I was wondering if we were crazy to add another little one, we couldn't wait either. So the pregnancy was proceeding uneventfully. I had nausea as I did with Kendall, but nothing too bad. My belly popped out pretty quick this time though!

We were really looking forward to our ultrasound to see our little one and find out if we'd be adding another daughter or a son to our family. I told my husband a day or two before that I was always so anxious before the ultrasounds or doctor visits until I knew everything was okay. We joked about freaking out about everything and it's always fine. Brandon's mother and her boyfriend were also present for the ultrasound. The ultrasound was on 1/28/13. We went in and the tech was showing us legs and feet and...boy parts!!! He showed us arms and the heart, kidneys, stomach, and the umbilical cord. He got up to the face and head, and looking back he got quiet, but at the time I didn't think anything of it. He kept saying it was hard to see the top of the head and the baby was really high up toward my ribs area. He finished up and then said he would have the doctor come in to get my blood pressure and weight. Brandon's mother and her boyfriend gave us congrats and left.

When they left the room, I told Brandon "something is wrong. We never met with the doctor before." He tried to assure me things were probably fine, but agreed it was strange. A nurse came in and took me to another room where she took my blood pressure and then took me to yet another room and told me the doctor would be in to talk with us soon. I was trying not to freak out, but had a feeling something was just not right. The doctor, a fetal medicine specialist, not my ob/gyn, came in and asked me about my first pregnancy and (oh I forgot we filled out a form about my first pregnancy and family history before he came in) family history of illnesses. He then stated that they saw something on the ultrasound that was extremely concerning. I was already crying at that point, I think. He asked if we had heard of anencephaly. I told him no; however, I was familiar with it as I had known someone whose baby was diagnosed with this. At this point, I semi heard what he said because I was thinking, "no no no this cannot be happening." He told us it was a neural tube defect where the spine doesn't close at the top so the brain/skull do not completely form. He stated it was terminal and there was nothing they could do. I think Brandon asked if the baby would make it and the doctor told him no. He stated that babies with this diagnosis typically live anywhere from a few minutes to a few hours after birth. He told us that our options included terminating the pregnancy or continuing with the pregnancy, but the outcome would be the same, our baby was going to die. He told us this happens within the first few weeks of pregnancy. He stated that it could be due to certain genetic conditions; however, that it is unlikely as no one in either of our families had any babies or pregnancies with a neural tube defect. He also stated that sometimes it can happen due to not taking enough folic acid prior to and during the first trimester of pregnancy.

We asked other questions, honestly, I cannot remember all we discussed because I was in shock at that moment. He set up an appointment for two weeks from then to get a follow up/confirmation ultrasound and he said my ob would be in touch to set up an appointment with me asap. We left the clinic. We then called our parents to tell them the most horrible news of our lives. I was so devastated to tell my mom that we were having a sweet baby boy who would not live.  We had been planning to go after the doctor visit and look at SUV's as two car seats would not fit in my husband's truck. I also thought maybe we'd go look at cribs and room decor since I knew we'd find out gender that day. Instead we numbly at lunch, went to pick up our daughter at daycare, and went home.  It was the worst day of my life.

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