We met with another CDH family today. Lauren was born with LCDH. She received a scholarship from Breath of Hope. It was great meeting her and her mom Tina. We asked alot of questions and she was so nice in responding. She was born undiagnosed. She was in the NICU for 3 weeks. She didn't need ECMO and still has the original gortex patch inside her. She has some occasional heartburn, backaches and had minor cramps on her side but aside from all of that she is one healthy teenager. She looks great! Tina said that the Doctors told her that her lung size was a normal size when she turned one. We are hoping and praying UCSF says the same thing for Nayeli. Lauren is such a sweet and beautiful young lady. She is going to do wonderful things in her future. She showed us her scar. I told her I wish I would've loved to have met her last year when my world was caving and was trying really hard to stay positive. She is such an inspiration and a miracle! We plan on staying in touch as she starts college this September. When we got home we had a little photo shoot. I remember last year around this time buying the outfit Nayeli is wearing. I remember all the emotions like if it were yesterday. I bought it along with her teddy bear blankie that has a lady bug on it. The teddy bear blankie was with her everyday in the NICU. This outfit meant so much to me because I prayed each day I would get to see her in it. That is the day I started to sing the song "The sun will come out tommorow". I don't think I could sing that song without crying. I also sang that to her while she was in NICU. She is outgrowing her cute outfit and I am so happy I got to see her in it. CDH has changed me as a person and has made me realize how fragile life is. Our daughter is a fighter and is so strong. She has overcome so much in 9 months. Nayeli is a mircacle and is our little blessing.
Twinkie and Molly didn't want to move from the towel. They stayed in this position until I took a picture of them. They are so funny! 
The other day after Nayeli had her swim lesson and having lunch with Godma Harris. She was so tired she fell asleep in this position. I had to take a picture before moving her. I think she saw how comfortable Carter sleeps this way she decided to try it. 
7 comments:
What a great experience meeting Lauren must have been! And Nayeli looks just absolutely precious.
For the past couple of weeks Charlie has refused to sleep any way other than on his belly with his butt up in the air! Evidently that is a cozy way to sleep! :-)
that is amazing- meeting Lauren! Of all these blogs I believe the oldest kid I knew about was maybe 3 or 4... so it's great to know that she is a healthy teenager!!
Nayeli is ADORABLE! :)
That is so neat that you got to meet Lauren! Nice to know that our kids can grow up and be normal. Nayeli is so cute, she looks like she is becoming a handful like Weston is. I can't wait to hear if her lungs are normal size that would be great. :)
Jenny
She really is strong. Nayeli is just beautiful....I can't wait to be writing about all of the positive experiences that you're having right now. ....how awesome for Lauren to be introduced. She is really an inspiration!
Love the pics and think the doggies are pretty dang cute, too.
Chanda
So cute! Carter hopes she enjoys sleeping with her booty up in the air. That's an amazing story about Lauren ~ I, too, wish I had known about her when I was trying to find hope somewhere.
That is great that you were able to meet her! That will be your little girl one day.
thanks for posting about Lauren...I often wonder how Bodee will be affected in the years to come. It was awesome to see someone who has continued to kick butt into her teen years :)
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