Monday, January 14, 2013

More Links on Hydrops and Chylothorax

I'm not sure about you but I still feel unclear about so much of what is going on with Evelyn Grace!  The doctors do their best to explain but I still don't fully understand.  It sounds like they don't either.  It sounds like Hydrops is a frustrating case for that very reason. But I'm trying hard to research and learn as much as I can about it and about what is going on with our Baby Girl.

I found this fantastic support group on facebook for Hydrops families.  Everyone on there is really supportive and informative.  I've been able to see pictures of healthy 1 and 2 and 3 year olds who are Hydrops survivors.  I've been able to read other's journeys and I've been able to glean more information and articles.

I wanted to post some of what I've been reading in case you are interested in learning more or maybe it can explain better than I am able to right now.

Non Immune Hydrops Fetalis Article

Congenital Chylothorax (this is the doctor's best guess as to what he thinks may be going on with Evelyn Grace - it is unconfirmed right now but once they start her feeding they will be able to confirm if they are correct or not)

Micah's blog - This is a blog of a women on the support group that I've been talking with.  She had a daughter pass away from Hydrops/ Chylothorax and she now has a 7 week old son in the NICU who is fighting it.  She does her best of explaining in lay terms what Chylothorax is.

If you find anything helpful that you want to pass along, feel free to leave a comment!  We are learning as we go, trying to learn as much as we can as fast as we can.

1 comment:

  1. Hi Sarah, I've been praying for you all & following your blog since I learned of baby Evelyn last week. My daughter Taylor was a hydrops baby with chylorax & is now a very healthy 4 year old. I did try to send you an email to the Yahoo address listed on this blot. May the Lord continue to bless you with grace & strength & peace & comfort. Jenny Basch