What a difference a week makes. Last Monday we were eager to find out if we were having a boy or girl and today we will find out if our baby has serious problems. The doctor told us that our baby did in fact have an omphalacele, had a gap between the chambers of his heart, was missing a structure in his brain that connects the left and right cerebellum and one kidney was not functioning. The shock, disappointment, disbelief we felt in those first moments were too much to describe. Then the doctor asked me a question I never thought I would be asked, did I want to end the pregnancy. My answer was quick, no. Besides my ethical convictions, this was my baby and I would not give up that easy. He told us that the heart could be fixed, the intestines could be repaired, and the kidney was not a huge issue. The missing brain structure could cause balance and coordination issues, I can handle that. Then the other shoe fell. He said that when a baby has this many issues they look to a chromosomal abnormality that might be the root of all these problems. He wanted to do an amnio. We agreed and it was over a few minutes later. Then he said the words that changed everything, depending on the results of the amnio it may not be in the baby's best interest to fix all these problems. That is when the tears came. Before that moment, I felt like we had a big battle ahead of us, but we could do it. Now, I wondered if I would even get the chance to go to battle. We left in shock and in uncontrollable sobs. Is this real? Is this happening to us? We are in our twenties and we have 2 perfect children. What is going on? What do we do now?
Wednesday October 20, 2010
I spent Monday afternoon and all of Tuesday making my battle plan. I did not allow myself to think about the worst case scenerio. I was making plans and preparing for a long stay at Children's Mercy. We could do it. I had childcare lined up, people to take the dogs out, a schedule for when I would be at the hospital. I was ready. We told all the family and close friends, they were right there with us, ready to go into the most important battle we had ever fought.
Wednesday morning felt very different. I took Andrew to school, cried. I took Olivia to gymnastics, cried. After gymnastics I was hysterical and couldn't face going home. I called my mom and she came over right away. She was only in my house for about 2 minutes when the phone rang. It was the doctor, the amnio results were back. I took the phone down the hallway away from the noise of the living room. I was half way down the hall when he said its trisomy 18. I collapsed to the ground in a kind of hysterics I had never experienced. I couldn't see, think, hear or breathe. I handed the phone to my mom and she talked to the doctor, he told her most babies, boys especially, don't make it to term. She held me in the hall for a few minutes and then I asked her to call my husband. She told him the doctor called and he needed come home immediately. I can't imagine what his drive home was like. When Mike arrived 15 minutes later I was still in the hallway. I mumbled that it was trisomy 18 and that I was so sorry. We held each other and cried for a long time. My mother-in-law came and picked up Olivia and got Andrew at preschool. My dad, Mike's dad, and my best friend came over. Other people came later. They cried with us and then tried to keep our minds occupied. It is all kind of a blur. I cried on and off throughout the day as more things came to mind. There were so many decisions....if he makes it to term what do we do? How do you sign a DNR on your baby? Burial or cremation? Should we buy 3 plots so we can be buried with his someday? What do we tell Andrew? How do I get out of bed tomorrow? How do I spend the next 4 months waiting for my baby to die inside of me. It was all too much. I cried and prayed and did my best to be there for my children. I had survived the worst day of my life, but I knew a far worse day was coming.
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