11/6/2008
Dear friends and family,
This is the email we didn't want to send. We received confirmation from the doctors yesterday that our Reagan Joy does, in fact, have full Trisomy 18. We are heartbroken. We don't specifically know what happens next as far as the doctors are concerned; at this point there aren't any urgent appointments already scheduled. We know they are interested in a fetal echocardiogram in order to look more closely at her heart and whether or not there are heart defects that haven't shown up on the ultrasounds. We will also be sitting down with the geneticist again to learn more about Trisomy 18, what to expect, how we can prepare, and resources and support that are available to us. Those meetings will happen in about 2 weeks.
This is the email we didn't want to send. We received confirmation from the doctors yesterday that our Reagan Joy does, in fact, have full Trisomy 18. We are heartbroken. We don't specifically know what happens next as far as the doctors are concerned; at this point there aren't any urgent appointments already scheduled. We know they are interested in a fetal echocardiogram in order to look more closely at her heart and whether or not there are heart defects that haven't shown up on the ultrasounds. We will also be sitting down with the geneticist again to learn more about Trisomy 18, what to expect, how we can prepare, and resources and support that are available to us. Those meetings will happen in about 2 weeks.
Our next step, personally, is that we leave tomorrow for Miami. We've had this trip planned for quite some time and we're looking forward to getting away. Dan will be participating in a half-ironman, we will get to spend time relaxing with Dan's brother Landy and his wife Manya, and Jackson will get to play with his cousins Landon and Luke. Since nothing about our situation is putting my health in danger, the doctors have given us the go-ahead and we think it will be good for us. We look forward to the time to rest, talk, enjoy Jackson, and take Reagan on her first airplane ride. We want her to meet the people we love and do the things we enjoy, and this is a great way to start. It will be our first vacation as a family of 4!
We thank God for good doctors, for our Jackson who saves the day every day and makes us smile, for flexible work arrangements that allow us to do what we need to do, and for the fact that we have an answer and know what we need to prepare for. We covet your prayers for peace, for rest, for direction on decisions that need to be made, for continued protection of Jackson, and specifically that Reagan would make it to term so that we can meet her, hold her, and love on her at least for a while. That is our biggest hope right now, that she will know how much she is loved.
Thank you for your support and prayers. Again, we couldn't do this without you and we thank you.
Love,
Mar and Dan
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