CDH Awareness Day… one year later

4/1/10 – I am sharing part of my journal entry after getting the news.

“We received devastating news at our ultrasound. After being overjoyed at the news we were having another girl, we found out that she has a congenital defect- a diaphragmatic hernia. Which means her diaphragm didn’t close like it was supposed to and some of her organs are in her chest cavity making it harder for her lungs to grow and could damage her heart…I didn’t sleep well last night. I kept waking up and thinking was that just a bad dream? This can’t be happening to us. But it is.  I am scared. Monday we will know more. It is so surreal trying to live life with this knowledge. I pray God will carry us through this. She is strong. She is tough. She can make it. I have been seeing stats up to 50% survival – so I hold to the faith that our little girl will be a miracle…..”

Finley is SUCH a miracle.  God has been ever present with us in this last year. Why does it always take something like this for us to truly draw close to him?

My first phone call after getting this news was to a dear friend who has been there for us in so many ways and it was her husband that immediately said, ” I think I know the best guy in town for this… I will call him tomorrow.” Within 1 week we had an appointment to meet with Dr Bliss. I am still so thankful for Dr Bliss meeting with us and being such a comfort and giving me even more HOPE. (Thank you Andy) He was just so confident (as surgeons typically are) but also kind and compassionate. (Yes, a proud member of his fan club).

One year ago I got the news that my child “might” not make it. It was brought up a few times that we could medically terminate for this reason up to 26 weeks in Oregon. We felt like 40-50% was still a chance for her survival, a pretty decent one… and it was in God’s hands either way. We didn’t feel like it was our place to intervene… we were on path for a reason, so we would see where it went. I am so thankful for the fact that I have such a healthy happy baby with us today. So thankful. I don’t take either of my children for granted. They are a gift.. each day… even when I want to pull my hair out.

In the past year I have seen many CDH babies not make it. The ones I know about are just a small fraction of the total lost. I have ached and cried for these families that I don’t know, but I grieve their loss with them. 50% of these babies don’t make it. It’s not fair.  I pray for a day that they know why this happens, and can either prevent it, or with advanced in utero therapies- bring up the survival rate to 100% (I aim high in my prayers.)

One year later I am holding a beautiful baby in my arms.  I am now aware of CDH.

Tell just one person about CDH today – make it your status update, twitter it, whatever you do to spread the word.  Thank you to everyone that reposted the story yesterday!!

Also, pray for Clara who is undergoing her repair surgery – TODAY!

Isaiah 40:28

“The LORD is the everlasting God,    the Creator of the ends of the earth. He will not grow tired or weary,    and his understanding no one can fathom. 29 He gives strength to the weary    and increases the power of the weak. 30 Even youths grow tired and weary,    and young men stumble and fall; 31 but those who hope in the LORD    will renew their strength. They will soar on wings like eagles;    they will run and not grow weary,   they will walk and not be faint.”


One thought on “CDH Awareness Day… one year later”

  1. I love how this day means such different things to each of us…March 31 was the day we brought Owen home from the hospital, 3 short years before you were getting your diagnosis.
    We are both so fortunate to have been given such miracles!

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