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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.

Wednesday, May 1, 2013

Results are in...

I spoke with the Transplant Team today.  Ruth's tacro was 6! PERFECT! We like keeping her tacro (pro-graf) level between 5 and 10. However, the numbers we were truly concerned about are LOWER!  Her WBC was 2.9 and her ANC is 232! Her ANC was 370 last time and now it's 232?!? WHAT IS GOING ON?? She is healthy. She has no fever or sign of infection. She is eating like crazy and doing BIG girl things.
Since Ruthis healthy and happy, Dr. Canter doesn't want to rock the boat or give medicine to someone who does not need it. So, the plan....
We will recheck her labs next Friday, May 10th to see if her lowered tacro level helps Ruthie raise her ANC. Cardiology also reached out to Hematology/Oncology to see if they suggest anything new or different. 
Ruthie has visited many a times with Hem/Onc when dealing with neutropenia and neutropenic fevers. They know her a little too well. So unless, the Hem/Onc team has any further ideas, we are staying our course. We are keeping her away from sick people or people who have recently been sick. We are taking EXTRA special precautions in hand washing and surface cleaning. I think I should buy stock in Lysol Disinfecting wipes/ sprays. I also should buy stock in hand sanitizer. LOL, but seriously.

 Sorry it took me so long to update. We were not only waiting on results, but a plan. It is much easier to share when the whole picture is together. 

 Once again, thank you for your prayers. We are extremely blessed to have such faithful and prayerful people in our lives. 

 REMINDER:
AHA Heart Walk is THIS Saturday, May 4, 2013.

 We will be meeting as a Pinkalicious Warriors Team at 8:00- 8:15 AM inside Busch Stadium near section 139. 

 Please consider joining us as we walk all over CHD!

 Prayers and Hugs!

Heart Hugs from on

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