Sunday, July 21, 2013

FISH results

On Monday evening my hubby and I decided to give our baby girl a name. We decided on Alexis Gray, we would call her Lexi. On Monday night I fell asleep on the couch only to wake up and feel like it was a nightmare. I went to bed crying and praying until the morning hours. I finally fell asleep. I was praying for peace. I begged for it. Tuesday, July 16, 2013, I went with my mom to buy a gown for Lexi that is something we have always done after finding out the gender of our baby. My husband thought it would be good for me to get out. I didn't want to be out, but wanted to buy Lexi a gown to try to have some normalcy. Wednesday, July 17, 2013, I woke up with peace. I felt somewhat like myself. We received a call from the genetics nurse and surprisingly I was okay. She went on to tell me that Lexi had Triple X. She said the FISH results showed Lexi had no Trisomy 13, 18, or 21, down syndrome, or mental retardation. I was relieved. I asked her once the other results came back would that change. She assured me that no those results wouldn't change. We had hope. We felt the worse we were dealing with was a Dandy Walker syndrome that could be possibly be born normal. At this point I just wanted Lexi no matter what we might have to deal with. We could do this. Thursday, July 18, 2013, I woke up in fear and doubt again. I was cleaning the kitchen and the song, This is the Day the Lord has made I will rejoice and be glad in it, popped in my head. I sang it to myself. That's a song we sing all the time with our kids to start our day off. I went to our bedroom to try to be normal and fold clothes only to be upset again. Our three year old came in singing that very song, This is the day. She hadn't heard me. I asked my husband if he was singing that with her and he said no. I felt like God was working through her to show me this is His day. No mistakes! We received a call about 10:00 am from the genetics counselor. She said they were disturbed by more of the results that came in and that the doctor wanted to see us as soon as possible to discuss what there finding meant. I asked her if she would tell me anything. She said that from their findings that children have 46 chromosomes and Lexi has 69. She has Triploidy. Triploidy means she has an extra set three extra sets of chromosomes 13, 18, 21, X, Y which is incompatible with life. WOW, what a difference from what we heard the day before. So we were anxious to meet the doctor. My husbands mother and father came and had the children spend the night so we could deal with what was to come. We met with the genetics counselor first. We were prepared to tell her from the beginning that we were not terminating our pregnancy. She respected our decision. After telling her of our faith and my daughter singing tears began to flow. I couldn't hold it together. I needed to hear God speak to me, to tell me it was okay. She told us she was a Christian. That was not what I expected, I honestly felt like they would be pushing for us to terminate. God moved again. We then went to the doctors consultation room to meet with him. This was the same doctor that did the amnio. His first words were I am so sorry. He was so very compassionate even though he delivers not so great news on occasion. So not only does Lexi have Dandy Walker she has Triploidy. He said with Triploidy babies usually miscarry in the first trimester. It's rare to carry longer. We are 19 weeks. He said he knew we are not terminating but he has to explain our choices by law. Since Lexi has made it this far either her heart will stop beating, I will miscarry between the 22 and 28th week of pregnancy. If I carry to term, which is highly unlikely that she will be stillborn or we will only have a few minutes to hours with her. He said this Triploidy is extremely rare. He's never seen a case where everything appeared to be normal with the results found. He said she has no spinal bifida which is a characteristic of Triploidy. Another characteristic is the fourth and pinky fingers are fused or the fourth finger is completely missing. This was not the case with her. The only abnormality was pericardial emulsion which is fluid around her heart other than the Dandy Walker. Her ultrasound looks normal. All fingers and toes are present. The placenta wasn't completely normal but nothing jumped out at him. Only until he saw the results of the amnio did he go back and study the placenta. Usually in Triploidy cases the placenta gets enlarged and starts to form clusters like grapes within it. He said mine has started to do that. Lexi's face is formed beautifully. There are some risks to me as well. There is a chance of preeclampsia which can cause all sorts of problems. They will monitor me closely every week to check blood pressure, placenta, and Lexi's heartbeat. That starts next week. So we wait to see if I go into labor or if her heart stops on it's own then I will be induced to deliver her. I want to be careful of my own health because of our 4 children, but I want Lexi for as long as I can have her even if that's safe in my womb. These are my hardest thoughts.

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