Friday, October 23, 2009

CDH Reunion at UCSF

We were contacted by Barb at UCSF who asked us if our foundation would be interested in sponsoring the first ever CDH reunion. This was a no brainer, the Nayeli Faith Foundation was happy to help make this night a reality.

I was so excited to go to the first CDH reunion today at UCSF. I was sad that Shane and Nayeli couldn't go. As I was crossing the bay bridge I started to feel very emotional. A year ago Nayeli was fighting to stay alive. Not only was I thinking of that but all the times we had to cross the bridge to go to UCSF for our appoitments and not knowing what was going to happen to our little girl. I started to cry as I got closer to UCSF. All these emotions just started to come out. I walked in and I was so happy and teary eyed to see all these CDH miracles walking around. I really wish Nayeli could be there with me. The ages ranged from 5 months to 10 years of age. They are all ROCK STARS! I was so happy to see Dr. Farmer. She did Nayeli's repair surgery. Dr. Keller and Dr. Lee were also there and I was so happy to see them. I am sad I didn't get to speak with Dr. Harrison.

Dr. LeeDr. FarmerDr. KellerLast time I saw Collin was when he was in ICN and was less than one month old. Look at him now! He is 6 months old. What a cutie!

I spoke with other CDH families while I was there. Most of them are in the bay area. I was so happy to meet others near me. We exchanged phone numbers and emails. We were all so happy to meet. I hope that I can have them all over for a BBQ in the summer.

I met Luke who is 2 years old he was born with LCDH. He had a laproscopic surgery and is doing well. He is such an energetic little boy. So cute!Samara is 9 months she is so precious.
Emily is 9 years old and has had 3 rehernations. She was one of the first babies at UCSF to have a tracheal occlusion. She had her first repair surgery with pigskin, second was with gortex. She has lost hearing out of one ear and has 30% hearing out of the other. She is one strong little girl! Analisa is 10 years old. She is in the picture we all see when we go onto the UCSF website for CDH. I actually started to cry when I met her. I hugged her and thanked her for giving me hope while I was pregnant. All the CDH miracles!
Dr. Harrison is standing on the left hand side.

4 comments:

Kathryn Olmstead said...

I cried reading your entire post! I just can't imagine meeting all those miracles.. I know there are a ton of us out there, but I only know of the blog world.

However, it does make me very nervous for K's hearing... Jer and I worry about that as we know that can happen with them. I wish I could have gone with you!! I'm sorry it was a tough trip over!!

*super dude and super dog* said...

Liz, your post made me cry! All those little miracles in one place must have been so special. I'm so happy that the Foundation was able to help and that you were able to attend. Next year Nayeli will be running wild around there! :)

Hope for congenital diaphragmatic hernia said...

Liz I totally undeerstand and feel for this post. Isn't it just Amazing when you stop and think about the "Yesterdays" with our children? God is most definitely good. So happy you got to see all those cdh blessings. it is okay to be sad....but look at her now. I'm SOOOO happy for you guys!

Kim (Canada) said...

Hi Liz,

We were invited to the CDH reunion as well but just couldn't make it this year, so it was nice to see your photos! Our daughter, Jordanna, was born at UCSF 10 years ago (Oct 29/99). She was a participant in the CDH study they were doing at the time. I believe she was the only baby in the study that required ECMO. We actually pulled out our video of her early days last week on her birthday. We had only watched it once before and although it's been 10 years, it was very hard to see those images, especially ECMO. Today, she's doing wonderfully! Hopefully we'll get to meet you at the reunion one of these years. :o)