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Tuesday, February 16, 2010

Looking for connections for a new CDH mom

On January 3rd I received an email from Melissa who had just found out (at almost 36 weeks pregnant) that her son had CDH looking for some guidance as she struggled to get a clear understanding of what she and her baby were up against. Just three days later on January 6th, James was born and has been fighting like crazy ever since. He has already exceeded the doctors expectations, but is not out of the woods yet. Melissa is looking for information from families of RCDH babies. As Charlie was affected by LCDH, I am not very well informed about the differences that might exist for RCDH babies as they fight and recover. Is there anyone willing to help this new mom out? Please keep Melissa and baby James in your thoughts and prayers and let me know if you think you can help her out. Thank you!!

8 comments:

Jennifer Tenney said...

I would love to help in any way I can! My baby, Dakota, is a Right-sided CDH survivor. She was also 7 weeks premature and on ECMO for 3 days. She is now 14 months old and doing wonderful. I don't have a blog. Please have her e-mail me at jennifertrafton@hotmail.com.
Hugs,
Jennifer
p.s. I love hearing about Charlie and have been following your story. He is such a cutie!

Jeff and Julie Tuley said...

Sure thing...Jacob is a RCDH survivor. Entire liver in his chest! He's just a little older than Charlie. Our blog is www.thetuleys.blogspot.com, or she can email me at juliekay623@yahoo.com. Hope that helps!

Julie Tuley

bobdoble said...

Kristen is a RCDH and just turned Four last Friday! You can pass off my blog, or my email if you'd like.... Bobdoble@hotmail.com

Jonathan and Sarah said...

Noah was a RCDH... ECMO 6 days... please pass along my email! morgans0912@gmail.com. Where is she located?

brad.kellie.babyc.lucy said...

The Coles (Katie Cole) was an undiagnosed RCDH at Duke. There's a link on our blog to her site and I know they'd be happy to help.

Candice and Rob Beal said...

Does she have a blog?

Vince and Patty said...

Thanks everyone for your enthusiastic willingness to help! I will pass your information along to Melissa and hopefully she will find some peace in the support you have to offer. She does not have a blog as last I knew. She literally gave birth within a week or so of getting her diagnosis, so I think she is still in a bit of a whirlwind - especially since James has not had the smoothest time. If she is comfortable with it, I would be happy to keep people updated on their progress through my blog. Thanks again to one and all!

:-) Patty

DevonLeah said...

camden, although technically a lcdh, was basically missing his whole diaphragm, and was on ecmo three weeks. DevonRoell@msn.com and ofcourse my blog as well...