Thursday, June 17, 2010

Just wanted to share this with you all, because of the families who have wrote about there journeys, we have been able to understand a little more about CDH. I just want to say thank you to for all the support from CHERUBS and these parents, all of you, THANK YOU.

This is about the little boy I had talked about, IAN. His mother is a mother who has been real help. Thank you Tracy.

I am a mom of a LCDH survivor! Ian was born (4 weeks early) on 4/3/04 and is now one happy, happy little boy. Ian's CDH was not diagnosed until birth and he was life flighted to Primary Children's Medical Center in Salt Lake City, Utah, where he spent 53 1/2 days in the NICU, 7 days on ECMO, and 29 days on a vent (23 days were an oscillating vent), and 546 days on oxygen. He endured feeding difficulties, acid reflux, developmental delays, and pulmonary hypertension. He has now outgrown these symptoms and now has heart related issues due to being on ECMO. Ian also had surgery to fix his left and right inguinal hernias and a undescended left testicle during his NICU stay. I am the Wyoming State Rep. for CHERUBS and I also help co-rep. Colorado and Utah (The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support), www. You can also see Ian's journey in pictures at:

Take time to clink on the link. And the other blogs on my page and read about some CDH babies.

1 comment:

Tracy Meats said...

Have been thinking of you and your precious girl and wondering how your appointment went last week? If you need anything or need to talk....I am here for you!

Tracy, Ian's mom