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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

9.16.09

The results are in

Posted Sep 16, 2009 4:00pm

Ruthie has hypothyroidism. Basically, her thyroid is under- active or under- developed which means her body is not getting the right amount of hormones. So each day she will have to take a pill in order to stimulate her thyroids to produce the hormones they usually produce. This may only be temporary and her thyroids may kick in on their own by the age of 3. However, if that is not the case, then is is just a pill a day to keep things regular. Overall, this seems like a pretty easy deal. Once we figure out how much of the medicine she needs for her body, we are set. So we start taking medicine and then getting blood drawn once a month until we know the correct dosage.
When it comes to the newborn screening, which is how we found out about the thyroid issue, we still have one more hurdle to jump. Apparently Ruthie's screen for cystic fibrosis came back with a red flag. The cut off for normal on that test is 70 and her is at 72. So on Monday, we go to Children's to have a sweat test done to determine our next steps. The pediatrician, Dr. Sitron, does not think we should be too concerned. He said that the chances of her having a heart defect, a thyroid defect and cystic fibrosis is pretty low. But, we will see.
Please pray for Ruthie.
We trust in God and we know that He doesn't give you anymore than you can handle. I guess He knows that Ruth is a strong little girl and that she is ready to handle it all. We just hope that cystic fibrosis is not one of the things He wants us to handle.
Thank you for your support.

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