Thursday, May 13, 2010



Well I started this blog for updates on Ella, it seems to be the best way just to update everyone at once. First of all I want to thank everyone for there prayers and concern for our family during this very difficult time. I may not always be the one updating here as I will be very occupied as I'm sure you can all understand. But either myself or one of my family members will try to update anytime there is a change. The updates may not be very regular for now since we are only getting to see the Doctors every three weeks, but as July approaches the updates will become more regular. I guess I will start with the most recent update since so many of you know the story up until here. I am 26 weeks pregnant with Ella Dawn, we were told three weeks ago that she had a congenital heart defect called hypoplastic left heart syndrome (HLHS). That means that the lower left chamber of her heart was severely underdeveloped. They told us that with a series of three open heart surgeries called the norewood procedure she would have a good chance of survival, as long as there were no complications or infections. They gave her around a 75% chance of making it through the first surgery. We were so devastated to find out our sweet baby was at such a risk and also that she would have to endure these surgeries over the next three years of her life. Well on May 12th we went in again to have a (somewhat) routine check up, we were going to meet Ella's cardiologist and also meet with the perinatal specialist. We had been praying for a miracle that God would have healed Ella's heart. When they began looking thoroughly at her heart they found that she had a restricted PFO. I am not sure what PFO stands for, but basically it means that the right side of her heart is not working properly. That being the case the cardiologist told us that her chance of making it through the first surgery dropped significantly. He said he would guess around a 20% chance of making it. This condition is so rare they don't have a medical name for it yet. They said that a baby having HLHS is rare but that only 5% of the babies that have HLHS have this condition too. Originally they talked about the option of a heart transplant, this isn't an option now because as soon as she is born they have to immediately do the surgery to make her heart begin beating. She is at some risk inside of me because the blood isn't flowing properly so it is getting thick and causing the arteries to bulge. But there is nothing they can do about that right now. Basically we are waiting to hear back from the cardiologist to let us now some information that we asked for, when we have that information we will decide if we are going to deliver at the OU medical center or if we will be going down to Dallas to deliver. This is extremely rare to have both of these conditions so therefore their isn't many statistics to give. They have only had one of these cases at OU only three in Dallas that my doctor new of and I'm not sure how many in Boston they have done (they have an experimental surgery) but the Boston surgery has not been very successful, the baby at OU died and two out of the three in Dallas died. So odds aren't looking so great. I know that is a lot of information and it might not make any since, sorry about that. It's hard to explain a medical condition when I am just learning it all myself. Right now we are praying for God to heal her heart, we have no idea what the Lord has planned, we are hurting and scared.

11 comments:

  1. thinking of you & praying, girlie

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  2. Praying for Baby Ella (and her mommy and daddy, too)!

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  3. I love you Jon, Amy & Ella. I am praying daily for you. I have many friends who are also praying. God is a God of wonders & miracles. I know He can heal Ella. If ever there is anything I can do for you please call or email. I would be more than happy to serve you. ♥(((HUGS)))♥

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  4. We are lifting you all up in prayer.

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  5. Amy I love you and am praying for all of you especially that God would heal Ella Dawn. She is soooooooo cute. You are a trooper girl:) I just can't imagine going thru what you are. My heart is very heavy for you, Ella, and Jon. XXXXOOOO

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  6. Praying for you, Jon, and precious Ella!! Love you all.

    -Hannah Burnett

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  7. Praying without ceasing...love you, love Jon, love Ella.

    Believing God,

    Jen

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  8. We are pouring out prayers for Ella and her mom and dad. God has such a perfect plan for Ella's life! Statistics don't mean much because ultimately God is in control! We love you guys and will be praying for you often!
    Brandon & Michelle Jackson

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  9. I am in Kristina's Sunday school class. I just wanted to say that my husband and I are praying for you and little Ella.

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  10. Amy,
    Gloria Bonner forwarded your prayer request out to our church in Rio Rancho, NM. I am so touched by your story and can only imagine the anxiousness in your heart. My son had to have surgery around his heart soon after his birth. It was nothing nearly as serious as what sweet Ella is experiencing. You talked about statistics in your letter and I just wanted to encourage you with things you already know. There is a 100% chance that God is in control of your precious one. There is a 100% chance that He will use her for His glory. There is a 100% chance that He will walk beside you and carry you through these dark times, a 100 % chance that Sweet Ella was created for an eternal purpose and a 100% chance that people around you are already being affected in a Kingdom way by your story. Know that my family is praying for yours (there is a 100% chance of that too!) I love you my sister,
    Laura LeFevre

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  11. I am praying for you and your sweet Ella.

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