Again, the worst day of my life was last Friday. I have a wonderful OB, she was very gentle and honest with us when breaking the news. For me, the Trisomy 18 Foundation has been a wonderful site to share my feelings with others faced with the same condition. One lady posted her OB told her over the phone and said "your child is incompatible with life". Wow, words can be very damaging. This is why I'm not up for phone calls at this time, I can barely deal with what is going on, let alone discuss it on the phone.
I still can't figure out "Why has this baby survived and overcome everything stacked against her (I have felt the baby is a girl from the moment I found out we were expecting - tomorrow's results will tell us the baby's gender). The heart beat has been great, I really think she's so strong and an amazing fighter - more than I ever will be. But, the ultrasounds tell a different story of how sick she really is, I guess my biggest fear right now is that she will suffer. I just pray God will give her her wings early if she will suffer in anyway. I just have this terrible suspicion that I'm a carrier and I've caused all this pain for our precious baby. Maybe I'm being sent a message telling me, "have your genetics tested so you will be able to have another healthy baby someday". I just wish I had listened to my inner voice earlier and had insisted on the genetic testing. With IVF (invitro) they are able to do genetic testing on the embryos prior to transferring into the mother. We have 2 frozen, which can still be tested if we decide to go down that road again.
Coping, unless you have been faced with the loss of a child, you really do not know what someone is feeling. December was a very difficult month, with the emotions of IVF and most of all my best friend was devastated by the loss of her twins, she has been amazing support for me. She truly understands the feelings I'm experiencing right now, looking back I just wish I could have been more support for her. It's the simple things that matter during a situation like this, like the emails she sends daily just to tell me she thinking of me, respecting our privacy and most of all providing love and support.
Ryan also has been wonderful during all of this, he watched Lily all weekend so I could either cry or research T18 before our visit with the specialist. I thought it was strange when he told me he thought I was doing an amazing job with Lily (I was thinking the same of him), despite what was going on. I told him, this maybe the only child we have and I don't want to mess things up with her. He's really been my rock to lean on, he's an incredible husband and father. I love him dearly.
As I said before, Lily is even more of a blessing and we are just amazed at how perfect she really is. She is very chatty, she has just started saying "I love you" which breaks my heart at the same time because I will never hear this baby say those words and Lily will never know her younger brother or sister. She continues to love going to music class and gymnastics. We went to the zoo last Friday afternoon, just to get out of the house and see the beautiful smile Lily gets on her face from the animals. I find myself being so much more patient with her and giving her about a million hugs and kisses a day.
Many of you know that I've been taking quilting classes, my Aunt Joanie is an extremely talented quilter and designer. She is helping me design a quilt that I will have as a tribute to our baby that will hang in my bedroom. This is something that will keep me busy and hopefully my mind off of things.
So I don't end on a sad note, the odds of having a child with Trisomy 18 is 1 in 3000 live births but I've seen it as high as 1:10,000. Ryan said "Why haven't I ever hit those odds in Vegas?" Maybe our luck will change and the house in Phoenix will sell, we need some sort of good news in our lives.
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