Thursday, March 5, 2009

As it Turns Out...

We met with the surgeon this morning and he confirmed what everyone else had already told us. He put it this way - to do the 3 surgery series on a baby with JUST Hypoplastic Left Heart Syndrome is about a 90% chance of survival. Which is really good. This is what we anticipated coming down here. But after Evelyn was born they discovered 6 other major problems with her. Dr. Hanley said that doing the surgery on a baby with HLHS and just one of the other major problems she has brings the odds of survival down to 50/50. Which puts in perspective where Evelyn fits in. WAY below 50/50. With not one additional problem but six, he said he doubted she'd even make it out of surgery and if she did she would not leave the NICU most likely.

I never in my wildest dreams would have thought I'd make the choice we are making. But it is the best and really, only decision there is to make.

If the top surgeon - who by his own admission - says that he rarely turns families away from surgery says its not an option, then well, we sure don't want to do that! We are so glad we talked to him. We were leaning away from surgery anyway, so that was the confirmation we needed.

I guess it's illegal to transport a "dying person" as Evie is considered by the doctors, across state lines so our options were:

1. Unhook her here and "wait."
2. Get a medical transport to take her back to Boise, admit her to the NICU there and unhook her.

Our insurance doesn't cover this type of transport but God is so good to us, continuing to make our way smooth down here. One of the social workers got approval for Stanford to absorb the cost of the transport for us! So they are paying for it. We started crying and then the social worker started crying. God is good! Evelyn leaves today on her private jet - still on the medication that makes her stable, and we are just waiting to sign some papers before we hit the road!

Now we will get to see God do a miracle in Evelyn as we step out of the boat and onto the water by unhooking her. This is the perfect backdrop for a miracle and we will not stop believing! Please keep praying for a miracle for Evie!

Nothing is impossible with Jesus!

Lord, you are good and we put our baby girl, Evelyn, into Your hands. She is Yours. Please glorify Your name through her.



  1. I'm praying for a miracle for Evie!!!! You guys are in my thoughts and prayers...

  2. You guys are amazing and such an inspiration...I'm sending big HUGS and will be praying throughout the day and days ahead...Just wanted to let you know I'm thinking about you and will continuing praying for you and your family...eventhough you don't know me. :)

  3. Love like this comes from the Father.

  4. We are praying... so many people are! We stand with you in faith... surfers walk on water everyday! He's so close to you!

    Love you!

    Your brother!


  5. "For You formed Evelyn's inward parts; You covered her in her mother's womb. We will praise You for she is fearfully and wonderfully made; marvelous are Your works, we know that full well. Her frame was not hidden from You, when she was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw her substance, being yet unformed. And in Your book they all were written, the days fashioned for her, when as yet there were none of them." Bear with the substitutions to the Scripture, but Psalm 139 has so much comfort and encouragement to offer. Here's more. "O Lord, You have searched me and known me. You know my sitting down and my rising up; You understand my thought afar off. You comprehend my path and my lying down, and are acquainted with all my ways. For there is not a word on my tongue, but behold, O Lord, You know it altogether. You have hedged me behind and before, and laid Your hand upon me. Such knowledge is too wonderful for me; it is high, I cannot attain it." We are beseeching the Father during this very important time!

  6. So many prayers from people you don't even know, but know the Lord are with you, Chris & Steph as you and Evie travel home to Boise. All love, Diane

  7. I'm a friend of a friend of a friend and I'm a NICU RN in Sac, and a mommy as well. I know the trials of taking care of a cardiac baby, and even one with multiple cardiac issues. After reading your blog, I know Gad has guided you to the right decision for your daughter. And it's awesome that Stanford is covering the costs for you. I hope your time with Evelyn is quality and that even when we don't know why things happen as they do, trust that God has a plan much bigger than we can comprehend.

  8. we are praying for you. travel safe! we love you and you know God is carrying you through this! you are not alone!

  9. Steph and Chris, Thanks to the Lord, for he is so loving, praise The lord for this trip home and that your family will be all together at home. Love aunt carol and Uncle Dan

  10. Steph and Chris,

    I was praying for Evelyn this morning, and I felt the Holy Spirit convict me. He said "You don't pray to ask for Evelyns healing, because I already did that on the cross. You pray to get the assurance that it is done." I realized that as far a I knew the Doctors had not done any more tests on her after you had your vision. A tremendous joy began to rise in my heart, and I felt that assurance! I just wanted to encourage you with that, we are standing with you in faith.


  11. We're so glad you get to head home with your new baby...

  12. It is such a JOY to know that Evelyn is in Boise. Even there she may meet a good friend of her grandparents....Susan Dotters is a nurse at St Luke's NICU and a beliver. Drive careful and know that we are all praying for you. GOD IS GOOD ALL THE TIME AND ALL THE TIME GOD IS GOOD.

  13. I think you made the correct turn in the road...Jesus is still comes in the morning...the waves are deceiving...we love you and little Evelyn.

  14. So glad you're able to come home. We're excited to watch this miracle unfold-believing with you!

  15. you have got to be the bravest people i know. evie is so BLESSED to have parents like you. still praying for all of you!!!

  16. Luke 1:36-37 is the verse I live by...
    NOTHING is Impossible with God!
    Please know that the Great Physician is at work and your faith will see you through.
    Many, many prayers are being said for your sweet little one in NJ.

  17. Dear Steph & Chris, Carol called last night and told us of the "homegoing" of your dear little beautiful daughter, Evelyn Hope. Wow! There just are not words to express properly at a time like this. I have not walked in your shoes, and can only imagine the heartache at such a loss. I am so glad you are both believers, trusting God IN all things, it makes life so much more bearable. You are each in our thoughts and prayers, as well as the rest of the family as you walk through the difficult days ahead. Celebrating her life and what it has meant to you is so important to all involved.

    I only know what I have learned with my sister's granddaughter that was born with VDFS- Velo (pallet), Cario (heart), Facial (certain facial structures) Syndrome. Casssandra had open heart surgery to repair a whole in her heart at one month old, and two years ago underwent major open heart surgery to replace three wholes and a valve to allow her heart to pump enough blood and allow her body to grow normally with a normal blood flow. She suffered a minor stroke during surgery and went through a lot of rehab for a long time afterwards. She is back at school, although she has always been developmentatlly disabled, is quite normal and very bright. VCFS children can have up to 126 different symptoms, some compulsive disorders included. Her dad and aunt (both of Molly's children) have the same genetic syndrome, so they will not have any more children.

    This is a far cry from your situation, and I share it only to let you know that our family has been blessed by this whole situation in so many ways. It doesn't even come close to what you all have gone through.

    Please know how sorry we are to hear of your loss and I will check your blog to see what you write after the services.

    Your words and decision making process was an admirable although difficult thing to do, but in trusting the Lord, you obviously made the right decision. Don't EVER second guess yourself.

    Much love, Aunt Sue and Uncle Bob and family