I returned her call and was told that the levels from the AFP (alpha fetal protein) test came back positive and that I would have to schedule an ultrasound at a specialists office. A week later our appointment for the ultrasound was made for October 27, 2009. My husband and I were ready for anything we already loved our baby, NOTHING would change that. We were ready for anything, anything except what was discovered that fateful day.
October 27, 2009 was the day we also found out that my husband's cousin (26 years old and father of 3 himself) had fallen mysteriously ill and was in a coma and they did not expect him to make it. My husband found that out the morning of and relayed the information to me on our way to our appointment for Lilly.
We went in with the ultrasound technician and she looked closely and long at every part of our baby. We had decided if something was wrong, we were going to find out the baby's gender. She told us that we were having a girl! She looked at her heart, bladder, etc and stated that they all were perfect. She said there was indeed an issue to be discussed with us by the doctor in the office. She never let on how serious the "issue" was.
We didn't wait long until the doctor called us back into his office. He sat us down and explained to us that our daughter had anencephaly. He explained that anencephaly is so severe that it is incompatible with life, zero survival rate, and that either our baby would pass in utero, be stillborn, or not live for very long afterwards. We were in shock! There were two choices as we asked what options there were. He said either carry the baby to term or terminate the pregnancy. Terminating was not an option. There was no saying how long we would have her for. He explained that there was no rush in our decision, he was very compassionate.
We were already in tears the minute he gave us this devastating news. We cried so much and so hard that day and days after. We called family, friends, and coworkers to inform them of our sad news. We went home and researched anencephaly and were even more devastated as most of you know the pictures and descriptions are so discouraging.
The next day I woke up and just started crying. We had an appointment at my gynecologist's later that afternoon. They called my name and I just started to cry and couldn't stop, the ladies in the office cried with us. My Doctor was VERY compassionate and supported whatever decision we had made. We told him we were not terminating her. The couple weeks afterwards were awful, and hard. We decided we would enjoy her for as long as we had her, however long that would be. We would mourn her IF or When the time came, but not while she was still living. And as long as she was with us she would live life to the fullest and we would show her happiness and love. I would eat all the goodies and food for her. We would talk to her, hold her, touch her, read to her, dance with her, play with her. And we did!