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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, April 24, 2013

Change of course

Hello!
Quick update on Ruthie's plan.
After further discussing her neutropenia with the ID (infectious disease) team, our Transplant team has decided to hold off on the GCSF (neupogen) injections. Ruthie is not acting sick or running fevers. Since she is not "fighting an infection" but merely neutropenic, we will play the wait and see game.
Our new plan:
We are going to lower her Tacro (Pro-graf) dose (an immune suppressant drug).We are hoping that by tweaking her medicine, she will bring her ANC (absolute neutraphil count) back up into a normal range. Our goal is 1500. We adjusted her dosage last night with the evening medicines. We are repeating a CBC and Tacro level on Monday. After Monday, we will know more information.
BUT, if Ruth runs a fever (anything over 100.5) or starts acting sick, we will bump up her blood draw up to emergent! There is a good possibility that if Ruth is feverish for any extended time, we will be admitted to SLCH to run cultures, start antibiotics and monitor her WBC.

Thank you for keeping Ruthie in your prayers. She has been so happy during this bout of neutropenia, which is highly uncommon. Neutropenia usually causes tiredness, loss of appetite, fatigue, body aches, and just over all crumminess. And the last time she was neutropenic we experienced all of those symptoms. I am still a bit bewildered by the whole thing. In our history with Ruth, the numbers confirmed her clinical appearance. However, she is once again being a medical marvel- defying the odds. She appears healthy and happy. Her blood work, though, states she is sick and in real danger of infection. What a mystery!

As for myself, I am preparing for SLCH. I have individual bags packed for Ruthie, Charlie and for myself. I am on the "just in case" mode. If I prepare and plan on spending time at SLCH, then it won't happen. Or at least, if it does, I am ready.

Thank you Pinkalicious Warriors for your support of not only Ruthie but our other friends. Please pray for Lauren and Carol. Pray for their wonderful families to receive peace of mind. Please also add to your list:
Bob (family friend suffering from leukemia)
Linda (my friend's aunt who was diagnosed with cancer)
Rich (my parent's friend who was diagnosed with cancer)

Thank you so much!

Heart hugs!!
Heart Hugs from on

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