(Originally posted on 10/31/12)
Needless to say we had a pretty emotional week with lots of crying, no appetites and very little sleep. Friday we had another appointment to learn more and came away feeling much better.
There are three main things that they need to monitor:
- Are the lungs developing enough tissue to breathe? With the stomach in the diaphragm there isn’t a lot of room for the lungs to grow. That is the key to post birth success.
- Where is the liver positioned? For some reason the liver doesn’t move well. The connections tend to get kinked and that is fatal. Right now it appears that none of his liver has made it into the diaphragm. Generally, that is great news because at this point if it isn’t there it rarely will move later.
- Is the hole in the heart closing on its own? The type of hole that he has will close on its own 9/10 times.
That is what we learned from the OBGYN. We left with a lot more hope than we came in with. After we met with him we met with a genetic counselor that talked to us about the risk of a chromosomal abnormality.
Basically there is a 40% chance that this was caused by some sort of chromosomal abnormality. If there is an abnormality there is only a 13% chance that Elliot will survive.
There is a blood test they can do now on Casey to find out with 99% accuracy if Elliot has down syndrome. There are two other major abnormalities that it can test for, Edwards Syndrome and Patau Syndrome. It is rare that a child with either of these will survive longer then a year. The blood test is 97% accurate for one of them and 77% accurate for the other. Casey had her blood drawn and we are now waiting a week to a week and a half to find out that news.
If that comes back negative Elliot’s chance of survival is going to be about 80%. He will be born and we will get to touch him but not hold him. He will then be in the NICU until he is strong enough for surgery, and then for a while afterwards.
We are trying to be as positive as possible and will be fasting next Sunday, November the 4th with our families for baby Elliot. We would love to have you participate in the fast.
Love,
Jordan, Casey, and Elliot
aww… this made me cry 🙁 Im so sorry you guys are going thru this. I will keep you in our prayers/fasts and I really hope he is okay. That is so rough that he will be to fragile to hold until down the road after surgery. Hang in there Casey and Jordan! Just remember the plan of salvation when you get depressed and you will remember that trials are temporary and Elliot will be a healthy part of your family sooner or later 🙂
My heart and prayers go out to Baby E. and you both. I will fast with you on Sunday and every Sunday if necessary.
We will be happy to join with you in fasting and prayer this weekend.
I,too, will join in your fast. Adding your family to my mom’s prayer group list.
We are thinking of the three of you here in Cincinnati. Our prayers for all three of you are strength, faith, hope,trust and for all things known and unknown to us. Big hugs! Amy
The ODell family will be fasting and praying for your family this Sunday. {{Hugs}}
We would love to join in on your fast! What an emotional time for you all. All I can think to say is that The Lord loves you and is mindful of you. He has a plan for this sweet baby and for your family. I know you will be blessed and taken care of and literally carried through. I hope that you guys are able to feel comfort, love and some sense of peace. Lots of love from my family and extended family!
I’m with you on yur fast.
Thoughts, Prayers, and Love to you guys…..
Casey & Jordan, You are loved so much!! You are in our prayers and thoughts constantly. Please let us know as soon as you guys have any news, we love that sweet little guy so much too. We hope to see you at Thanksgiving??? We fasted for you yesterday and prayed. Love you again.
Joye & Kim
Yes we will be there for Thanksgiving!