Thank you...

I just wanted to thank everyone for their kind words and prayers. After I made the blog post on Sunday, I woke up Monday morning & just felt so much peace. I know that is from the power of prayer & I am so grateful for all of your prayers for our family.

I thought I'd give an update on where things stand as of now:

The last few days I have done nothing but research, research, research & I think I know more about CDH than most OB'GYNs. Seriously. It seems like not many people know too much about this. I am so thankful I was able to learn so much (thank you internet) and with all of this newly acquired knowledge I have been able to make lots of phone calls and get answers to the millions of questions I have had.

Yesterday I was able to speak with Dr. Yang who is the pediatric surgeon at Cardinal Glennon Hospital in St. Louis. I also was able to speak with a Dr. Gien, a neonatologist at Childrens Hospital in Denver. I was kind of amazed that these two super busy men would take time out of their day & speak with me and answer my questions.

Dr. Gien (from Denver) was SO amazing & SO comforting to speak with. He really gave me SO MUCH HOPE. He told me that they have seen 18 babies with CDH in the last 2 years and of those, 17 have survived! Amazing! Also, 75% of those babies had the liver up in the chest- just like little Ellery. He also told me that every baby should be given a chance and they would never tell any one that they should terminate their pregnancy. He told me that the numbers I was given do not determine survival or not, all they do is indicate how sick the child might be after delivery and what kind of ventilation, time in NICU, etc. they might need. What a relief. He was the most wonderful person I could have spoken to and told me I need to enjoy this pregnancy because the odds are I will be taking home a baby after this is over. I told him I wanted to hug him.

So, our plan is to meet with Dr. Gien and his team at Children's Hospital sometime next week. Then we will have more ultrasounds, a heart scan and a fetal MRI. It will be a long road, but I am so thankful to have so much more hope and someone who is willing to fight for my Ellery.

My advice to anyone who is dealing with CDH is to ignore your Doctor & talk to someone in the NICU, the neonatologist or the pediatric surgeon. They are the ones that handle these babies, not the OB/GYNs. I wish I would have known that last week.

Thank you for all of your kind words & please keep our family in your prayers. We love all of you!