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On May 4, 2009, Josh and I discovered that our soon to be little girl, due on August 25th, would be born with a CHD known as HLHS (hypo-plastic left heart syndrome). Upon hearing "something is wrong with your baby's heart" our lives changed completely. Our little Ruth Elizabeth was brought into this world on August 18, 2009. She was delivered via c-section and rushed immediately from Barnes to Childrens' Hospital for a cardiac cath intervention. Her arial septum was reopened and a week later, Ruthie underwent her first open heart surgery, the Norwood. Unfortunately, Ruthie was not able to survive on her Norwood heart and the Glenn procedure would not work for her. Ruthie was placed on the heart transplant list Feb.3, 2010. After waiting in SLCH, Ruthie received a new heart on July 5, 2010. We are so humbly blessed to receive this gift of life. We now are on the road to recovery. We have had our ups and downs. We have become SLCH regulars due to countless hospital stays and ER visits. We are learning how to manage life outside of SLCH and with another little girl. Now that we have two children, we are learning the about being a heart FAMILY.

Friday, June 4, 2010

Cath Lab

Ruthie did well during the cath yesterday. It took about 2 hours for the cath and then another one hour or so to stop the bleeding at her cath sites. She had to be re-paralyzed and sedated in order for the doctor to apply pressure and stop the bleeding. Otherwise, it was a pretty normal cath experience for her. Cath number 6 went off without a hitch.

Results:
Well, fortunately/unfortunately we do not have any "real" results. There was nothing in her sano shunt or in the stints causing a block. Her heart looks the same in those terms. However, what this cath told us is that her heart it getting worse because it's just getting worse. She has been working on a post-Norwood heart since August. Even though we have put her on milrinone (a heart med) we still can't not perserve her special heart.

The Plan:
WE NEED A NEW HEART!
We also have no plan on extubating until she gets her heart.
Unfortunately, where we are now is our new baseline. We need to keep her comfy and not let her work too hard.
We need to preserve her heart until she gets her whole heart!

So until then, we are praying and living at SLCH "our home away from home".
Constantly praying and constantly waiting!

Keep praying for all the heart babies! Pray for Nolinn, Grace, Audrey, Cameron and all the heart babies who have gotten their second chance at life. I pray they continue to stay strong with their new hearts.
Pray for Derrick, Jacob, Tucker, Ben, Gabby, Cameron, Gabby, Luke, Lorenzo and all those little fighters!

God is good!

Laura
Heart Hugs from on

2 comments:

  1. Wodzisz FamilyJune 4, 2010 at 9:48 AM

    You are constantly in my thoughts and prayers. Praying like crazy that a heart is available soon. I'm saying an extra prayer for the donor family as well because they will need the prayers as well.

    God Bless!

    ReplyDelete
  2. ShannonJune 6, 2010 at 12:56 AM

    You and Ruthie are ALWAYS in our prayers too! I think about you guys a lot. Many prayers for Ruthie's perfect heart in His perfect timing...and hopefully that's SOON!

    Big, BIG heart hugs and PRAYERS!!

    ReplyDelete

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