Valerie has been kicking so much lately and I love it!! Every little kick is such a blessing! I am now 22 weeks pregnant. We go back to our regular ob on Monday and then back to the heart doc on Tuesday for another ultrasound. I can't wait to see how much she has grown and developed! The heart doc. will also be able to give us some much needed information.
I have been reading some pretty disheartening things on the internet lately, and i know i shouldn't be reading anything but I can't help it! I NEED to know what her problems are going to be if she can make it through multiple heart surgeries, which we still don't know if she will be able to survive through any of them. I can't stand not knowing everything about her...I just spoke to the genetic counselor and she did confirm that babies with Trisomy 13 only live a few days, and with her heart condition, it could be much less for Valerie.
I have to say it stings a little bit knowing all of the pregnant women I know will have healthy babies and i won't. I seriously know about 15 friends of mine who are pregnant, and while I am so happy for all of them, it does sting just a little bit. I had such big plans for our new little lady, she would have had so many friends and playdates :) It makes me especially thankful that Lilly is so healthy and happy.
Speaking of Lilly, she is just amazing. And if anyone is getting me through this (besides Kyle), it is my girl Lilly. When I am sad, she gives me hugs, kisses, and lots of cuddles. She is also SO hilarious and makes me laugh constantly. She loves her baby sister tremendously. Just this morning we were cuddling and talking to Valerie and Lilly took out her paci, put it on my stomach and said, "You want this Valerie? You can have it." Anyone willing to give up her paci is a GREAT big sister!! We have told her a little about Valerie, just that she is sick and when she is born she may have to live up in heaven with Jesus and her Meme (my grandma whom both Lilly & I were named after). She understands and and said 'No! Want her to live here. I want to hold her like this.' and she shows me how she will hold the baby. This is something that hurts the most. Lilly being so excited about her new baby sister and not knowing how long Valerie will be here with us.
To end on a good note: Lilly has been potty trained now since early November! We are so proud of her! :)
3 comments:
sweetheart you are the amazing one. its only normal for you to have feelings as you do, but its OK. Both girls are so lucky to have you for their mommy! God knew what he was doing when he gave you Lilly first. she most certainly is helping get us all through this time with Valerie. what an amazing little girl she is... just like her mommy... I love you sooo so much, to the moon and back!! and if I could make this all better, and take away your pain oh how I would in the blink of an eye. never forget you are my baby girl...and how I hurt for you... I will you all the strength in my body to help you through this season of your life...xxxxoooo Mom
Do not give up hope. I know of a little girl who had full trisomy 13 who had TOF surgery. She is now 9 years old. She walks and is very happy. Her name is Katya and she is on the www.livingwithtrisomy13.org site.
You should contact SOFT (Support organization for Trisomy). They can provide some current data. The fact is that children with trisomy 13 used to survive longer back in the 60's than they do now. It is a myth that these children are medically futile. The problem is to many doctors and parents, the disability is unacceptable so they talk in terms of medical futilty because it is easier that way.
If you contact the the original owner of the livingwithtrisomy13 site, she can put you in touch with Katya's parents.
Hi Karie,
Thanks for sharing your story. You are truly an amazing mother with a heart of gold! You have a lot of people praying for you, Valerie and your entire family. When you read all of those scary statistics online, just remember they don't take into account God's healing power.
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