Tuesday, July 8, 2008

UCSF APPOINTMENT

We went to our appt. today. It was a long exhuasting day. We were there from 9am til 5pm. We had an echocardiogram at 9am, an ultrasound at 10:45am The ultrasound took over two hours. They told us to come back at 2pm. We met with the Dr. and he said he met with the staff of 30, other Doctors and nurses and they discussed our case. We had so many questions but first the Dr. had to talk to us about the tests results. The echocardiogram showed the heart to be strong. We were thankful and wanted to hear more good news. The ultrasound didn't show any other problems. We were both happy to hear that too. The Dr. told us that Nayeli had a moderate severe case of CDH. Her stomach, intestines, and part of her liver are up. He told us that her survival rate would be 40%-50%. Nayeli's LHR (lung to head to ratio) is 1.0-1.1 He answered all of the questions. We met with their Social Worker. She took us to NICU. They had two other CDH babies in NICU. Shane and I both were trying to be strong as we walked by the babies and the visiting moms, we cried. It was hard not to. We are still trying to soak all of this day in. I have my Dr. appt with my regular OB next week and he is going to go over everything from today. We pray each day that Nayeli's lungs continue to grow and be strong.

4 comments:

Anonymous said...

Liz and Shane
I continue to pray for you three each day and add you to our church's prayer circle. Your faith in God will guide you through this.

take care
Amy Miles

Heather and Matt said...

Liz and Shane,
We are expeciting our son, William Ethan Morgan, in the coming weeks. I remember our all day evaluation at CHOP. We know this is an emotional time and we will be praying for you and your sweet Nayeli. You can expect the best treatment for CDH avaialbe at UCSF and I hope you are able to find some comfort in that. We were not diagnossed until 28 weeks so it was too late for fetal surgery or we may have travelled to UCSF too. We will continue to follow your journey. If you would like to learn more about us you may read our blog (www.babywilliammorgan.blogspot.com).
Blessings,
Heather and Matt

CHERUBS - The Association of Congenital Diaphragamtic Hernia Research, Awareness and Support said...

Liz and Shane,

Our prayers and thoughts are with you. I am so glad to hear that your appt with UCSF went well and will wait to hear the details. If you have any questions or need to talk, we are here for you!

Dawn

Cindy said...

It sounds like they were very thorough. I'm glad there are no other problems. My daughter's CDH was labeled as "moderate" also. She was only in the hospital for 3 weeks, so you just never know how these babies will do. I will keep praying for you and your family.