On Monday we had a super hard appointment at St. V's. I would say it has been the hardest one yet (besides when we found out there was a problem). I started off with an ultrasound. It was so good to see our little Valerie! She was still moving around so much and at one point was laying on her tummy! She is now 1 lb, 3 oz....so she is definitely growing!! During the ultrasound, i asked a question I wish i would have never asked. I asked how many toes she had on one of her feet. Polydactyly (meaning extra digits) is a very common indicator of Trisomy 13 babies. The ultrasound technician confirmed that Valerie does have 6 toes on one foot. I completely broke down and lost it. Sobbing. I guess all along I had been holding out this hope that the amnio was wrong and that her only real problem would be her heart because they haven't found anything else indicating Trisomy 13. Seeing an actual indicator just killed me. I know that it is now real. Valerie really does have the chromosomal abnormality Trisomy 13. Seeing those six toes brought everything into reality. I WISH I wouldn't have asked so I could have held onto that hope for the next 3 months.
After that, the appointment only got worse. We met with the doctor and the Infant Loss Coordinator. I pretty much cried throughout the whole meeting. We have a lot of things to think about. We were told that they have never seen a Trisomy 13 baby make it through a vaginal delivery. If we want her born alive, we will need to schedule a c-section. Do we want her monitors on or off during delivery? Do we want to do everything we can to keep her alive if only for a few days? So many things to think about. They talked to us about after she passes and burial options. Needless to say, it was a long, tiring day and now we have so much to process and think about. I did ask that if she is born alive, what will most likely be her cause of death? I have been thinking it would be her heart, but they told me it would most likely be a respiratory problem. Since Trisomy 13 affects every single cell in her body, it is likely her brain won't tell her body to breathe.
Please continue to pray that I will be able to carry our little girl to term and that she is born alive! 25 weeks down, 15 to go!!! We can't wait to meet her and her extra toe :)
4 comments:
karie, i can't even imagine what you are going through. you are so amazing...valerie is so blessed to have you as her mommy. you are in my thoughts daily! thanks for sharing your news as it comes. i have lots of people praying for you and your family. love you!
praying for you karie:) thanks for sharing. i am always at a loss for words. my heart aches for you. kyle's sister delivered a babe with this also, his name is owen. she had to deliver him around 22 weeks because of her health. i didn't know what to say then either. i know God got them through this and they were stronger on the other side. God seems to be the closest when we need him the most. your family is on my mind often. praying you can carry valerie full term and see her beautiful face:) keep looking up.
I just wanted to let you know I am praying for you guys often, Karie. Thank you for sharing your story with all of us!
“Strengthen the feeble hands, steady the knees that give way; say to those with fearful hearts, ‘Be strong, do not fear; your God will come with a vengeance; with divine retribution He will come to save you’.” Isaiah 35:3-4
Lord above please be with my daughter and her little family, please give them strenght and peace. Amen
Post a Comment