Thursday, June 5, 2008

More Q & A

Q: Will you be continuing the blog?
A: We are not sure to what measure yet. So we don’t know. Definitely not daily….that was A LOT of work! You were all worth it though. It just is too much to keep up with. So, we have yet to decide what we are doing. We have a computer program that takes the blog and puts it into a hardcover book so we will have that as a memory book so we’ll see what happens.

Q: My first son had a choroid plexus cyst (discovered at my 20wk ultrasound). It was monitored for 7 weeks thereafter and had diminished completely by that point. Did Jacob have one? We were very concerned the cp cyst could mean our baby had Trisomy 18 as they are associated. I'm just curious.
A: Yes. On October 3rd, I was 6 months along, we found out about Jacob’s heart as well as 2 choroid plexus cysts. We were told these cysts are common and could disappear yet could lead to other disorders if they stick around or be signs of other disorders. During this ultrasound, other Trisomy features were not detected due to his mild features…..his hands moved very well in the womb so this feature was never picked up. The cysts shrunk with each ultrasound and disappeared as expected from a normal baby. Other than Jacob’s heart, there were no detectable features that led us to believe he was a baby with Trisomy 18. Our doctors were amazing and had their eyes on everything….we were highly monitored and we were “strongly advised” to get an amniocentesis due to the fact that we were going through the process of setting up open heart surgery for him 7 days after birth and they were concerned about us being crushed if he had a disorder and then they couldn’t do the surgery….being told for 3 months they can fix your baby and then them saying there is nothing they can do can take a toll on people….but it didn’t matter to us at what time we found out if our baby had a terminal illness….we would have been (and were) crushed either way with a positive terminal diagnosis. As stated before, we declined the amnio putting his safety before our and our doctor’s curiosity….they would not have been able to do anything. I know this answer contains more than what was asked but I got going and just kept going….sorry!

12 comments:

Zac and Jenny said...

I'm sorry to ask something so trivial in your time of grief...

You stated on your last blog "We have a computer program that takes the blog and puts it into a hardcover book so we will have that as a memory book so we’ll see what happens"

Could you please tell me what program you have? Is it something other than Blurb? I am trying to make my blog into a memory book and have only been able to find the blurb program.

Please email me at jenny_boise@yahoo.com

THank you,
-Jenny

M said...

You are in my prayers today and every day! Love from Houston, Tx.

Rebecca said...

Thank you for sharing all this with us.

Don't worry about the fact that you "kept going." You write what you want/need to write.

:)

Lil' Jay & Family said...

What is the computer program that you use with the blog that creates a memory book? I've been looking for something like this for awhile since I've been blogging the day of my preemie son's birth (almost 2 years now :)) I hope your family is recovering some. I continue to pray and think of your family EVERYDAY!

You can email me the response at tracey_kerlee@hotmail.com

Thanks Tracey

Jenny said...

Praying for you today and tonight...

grandma judy said...

Jason and Karen, I wish we could be there with you tonight. Our prayers will be though. We love all of you and can't wait to see the service when you get it up. hopefully we will see you soon.
love, grandma judy

Destini said...

I was just sitting here reading over your latest q&a and it dawned on me that Jacob's celebration of life service is currently underway. Please know that as it goes on, I am here praying for your family, that the Lord is sustaining you and holding you all up during this time...and for the times to come.
Your sister in Christ,
Destini

Emily said...

Praying for your sweet family tonight.

Godsgal said...

You all are so gracious to continue to minister to those who have been witnessing your journey on the sidelines. I want to thank you that in the midst of your grief and saying 'goodbye for now' to your precious Jacob you are being God's Love tangible to those around you. Please know there is grace for you to rest, to grieve, to take time for whatever you need.
Prayers continue for you all. God has grafted your family in MANY hearts... You do not stand alone. and your precious family, and especially Jacob, will for forever be remembered as an expression of God's fingerprints of Love on our hearts and minds as you so openly shared this journey. You are showing that God is real-- especially through suffering, People easily accept God in joy- But to see the real and raw life exposed and to know that HE DWELLS THERE TOO-- that is the God the world will run to.
Blessings to you all...
we the body of Christ say, well done, you have loved and lived well through this beautiful time of Jacob's life.

Anonymous said...

When are we going to hear the details of Jacob's celebration of life? We have all been so absorbed in his life, we who couldn't attend would love to hear about it. I know you have alot going on.

Marlina said...

Wow...

How special! A precious boy. :)

Much love and prayers to you all.

Oliver said...

One last comment.

Keep telling your story. Please.