Saturday, February 14, 2009

About Evelyn

I realized this morning that it might be helpful if I explain what is going on with our baby and why we are going to California - instead of assuming that anyone who reads this webpage already knows as much as we do!

Evelyn has been diagnosed with a condition called Hypoplastic Left Heart Syndrome. Fancy words for "small left ventricle." Her left ventricle is so small, in fact that it's not pumping blood at all. God is SO amazing though in the way he creates life - a fetus has two "extra openings" in the heart that, in a normal fetal heart allow baby to receive blood directly from the placenta and circulate it primarily to the brain, so that they can grow at the speed of lightning. I know my now-pregnant friends would attest that 9 months doesn't really FEEL like lightning speed, but in actuality a lot happens in that time! Additionally, the blood is not pumped into the lungs until birth since fetuses don't need their lungs in utero. These two openings are forced shut by a rush of blood flow beginning when baby takes it's first breath of air and the lungs are filled. The force of this event causes two valve-like structures that have been held open in the womb to close. The process is usually complete in hours to days after birth. In Evelyn's heart, since her left ventricle is a stinker and decided not to pump (probably due to the fact that both the valves leading to this ventricle are obstructed), her heart has been forced to come up with a "Plan B" for survival. Plan B consists of getting the blood to circulate from the placenta to the brain even if it's not the "normal" way. Our cardiologist - who we LOVE - explains it this way: The heart is a "blue collar" organ and it loves to work hard. If something is preventing it from doing it's job, it's going to just do whatever it takes to get the job done. So Evelyn's heart is using those two fetal openings to make her heart pump. Her heart is doing a great job right now - no murmur, normal heart rate. In fact, my OB jokes that if I was only willing to let her stay in there for her whole life she'd be totally fine. I'm thinking about her first birthday I'd be the one needing heart surgery!!

All of this to say maybe what you've already concluded - D-Day arrives when Evelyn takes her first breath of air and her lungs start to fill up. When those two fetal openings in her heart close, her heart will have nowhere to pump blood and it becomes a fatal situation.

Our cardiologist is prescribing a series of three open-heart surgeries for Evelyn. While these surgeries don't "fix" her heart, they change the structure of her heart so that it is officially a one ventrical heart The first one being within a week after birth (they will give her meds in the NICU to keep those openings from closing). The second at 4-6 months old, and the third at 2-4 years old. These surgeries are called the "Norwood Procedures." Boise doesn't perform these surgeries so our cardiologist reccommended that we travel to either Salt Lake City or the Bay Area. We chose Salt Lake because it is closer to us, but found out late in the game (ummm...two days ago?) that our insurance would not cover my c-section scheduled for Monday Feb 16th. When we checked into it in December we thought it would be covered, but we miscommunicated with our insurance company so here we are!

Everything about the trip to Stanford has been easier, better,'s totally where God wants us. Only bad thing is that now our friends can't come visit. :( Although San Francisco is a great vacation spot... :)

I think that's it in a nutshell about Evelyn.

I will add on a more personal note that we don't see ourselves as the victims of our circumstance. We are learning that God is in control - we don't understand everything, but He holds us in His hands and we can trust Him in EVERY area. Please join us in faith as we believe for a miracle reminiscent of the ones Jesus and his disciples performed in the New Testament. We are asking for his power to come and touch our baby girl. Not just for us, not just for her...but for the Body of Christ, for the people we have met and will meet, and for the glory of God. We have already been able to talk with people that before we either would not know or that would not have any reason to listen to us.

Schedule of events:

Tues 2/17 - Fetal Echocardiogram and OB Ultrasound

Weds 2/18 - Meet the surgeon

Thurs 2/19 - Meet the OB and set delivery date! Also meet the pediatrician and tour NICU


  1. We are excited about what God is doing and will continue to do through all of you. What a testimony! All things are possible with God and I believe His hand is on your family. Bless you.

  2. "Daughter your faith has made you well" Mark 5:34 NKJV

    Stephanie and Chris, Faith is an action word. You two are walking your faith out, I am so proud of both of you! I am looking forward to seeing you on Thursday and meeting Evelyn!
    Love you tons, MOM

  3. We'll definitely be keeping you in our prayers. Glad that Stanford is working out better than SLC would have...what a crazy last minute change.

  4. P.S. My husband, Superman, works with Stephanie's mom...he's been keeping me updated the past few days...

  5. Thank you for your prayers, Erin! And thanks for taking a few minutes to read about us. It's always fun to meet other people who love the Lord. :) Take care!