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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.

Saturday, December 26, 2009

7.21.09

Cardiologist Appointment Update

Posted Jul 21, 2009 3:47pm

Yesterday we received some heart breaking news. The PFO connection that we thought was restricted is actually non- existent. This means that outside of the womb there is no chance of survival without communication between the atrium. So our labor and delivery plan has changed significantly and Ruthie's survival rate has hit an ultimate low. We will need to have a planned c-section at Barnes Jewish compared to St. John's (our original hospital) so that the cardiac team can be ready to open up Ruthie's heart at Children's within a matter of minutes from birth. As soon as she is born, she will be in surgery to create a hole where the PFO connection should have been. This is a pretty intense procedure and with current stats, it does not seem favorable. However, without this surgery there is no chance for survival outside of the womb because blood flow would not happen appropriately. After this connection is opened, the doctors will then be checking her lungs to see if there is any damage caused by the non-existent connection. If there is severe lung damage, once again survival is very grim. However, if her little lungs are fine and they are able to create the hole they need in the heart, then the next step is to perform the 3 step surgeries and she would be able continue on as a regular HLHS patient.
It has been an intense two days. We are still hoping for the best, but in our minds we are also preparing ourselves for the worse case scenario. We ask purely for your prayers over the next couple weeks as we begin this new chapter to our HLHS journey. We know that we are not in control and that God will provide. It is just really hard not knowing what to expect and to what extent we should expect things.
We are not giving up on this little one and we know that she is willing to fight.
She has made her impression on this world from inside my womb, now we are waiting for her to make her impression on the outside.

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