So, as you can imagine it was quite a shock to us. The genetics counselor we dealt with suggested an amnio as did my OB. David and I felt rather strongly from the beginning that we did not want the amnio but the more we spoke with the Dr and genetics counselor, we started to sway our opinion and figured we just needed to know. We were told we needed to follow up with a perinatologist for a US to look for the markers of this disorder. We had decided previously that if she found anything, we would have the amnio - if not, no amnio. Well today was the day and I started bawling before she even turned on the machine. This week was a rough one for me and I felt like I could barely catch my breath at times. I have never felt angry, or sorry for myself during this but the realization that we may have to bury a baby had gotten the best of me this week. I knew we would get through it, I knew we would be ok, but I knew it would be devastating and the hardest thing David or I would ever have to do.
So, on to the good news -- as of right now, the Dr found not one thing wrong with the baby!! She measured perfectly on all parts of her body and she could see all 4 chambers of the heart. She is progressing perfectly. The Dr still said we could do the amnio to know for sure but we decided to stick with what we had previously decided and not do it. While we are not completely out of the woods, this was a major step in the right direction. We go back in 3 weeks to take a closer look at her heart. These babies are so severe that typically several things are seen on ultrasound immediately. Have there been babies born with this that had normal ultrasounds - yes, but it is rare. If the heart shows some issues in 3 weeks, we may go ahead with the amnio but we are hopeful that the good news will continue.
The Dr did say that due to my blood levels being so off, it may suggest a complication with the pregnancy down the road. It may cause pre-eclampsia, pre-term labor, poor placental function, or low amniotic fluid levels, etc. She told me this after I called the testing we did "that stupid test" Ok, I acted like a 5 year old for a minute but I couldn't help myself. She wanted to be sure that I knew that the test wasn't "stupid" so she rattled off all sorts of things my stupid test may be trying to tell me even if my little girl doesn't have a chromosome disorder. I guess she told me!
I know many of you have been praying for us and I certainly appreciate it. I have decided right now to "let go" of the fear and allow myself the joy in thinking about my little girl coming home to us in December! I know it is out of my hands and I know that her path was decided long before we even did that "stupid test". So, here is a picture of our little girl - well, actually it is of her girl parts. She is sitting in a straddle and the 3 little white lines is her girl parts! I figured if David got to show off the boys' boy parts than I get to show hers off too!! I'm sure I'll get a, "that is so embarrassing" remark from her someday
2 comments:
Just in case you need us, go to livingwithtrisomy13.org and you will see several children of various ages (and some adults) who have proven that the "incompatible with life" thing is not always true. Most doctors give you the worst case senerio because that is what they know, but for those of us who live with these angels know how very compatible with life they are. My son is 9 years old. He walks, laughs, loves to watch TV and listen to music. He enjoys riding anything fast and swimming. His 2 older brothers adore him and can make him laugh hysterically. I hope and pray that your little girl does not have any chromosome disorder, but if she does it is not always a death sentence. You will get wonderful support from all of the families who have children with T-13 if you do need us.
Thanks so much for the update. I knew you guys were expecting another sweet Bain but didn't know 'pink' was being added to your home! And had no idea about the tests. We will be praying.
Hope to see you soon,
Laurie
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