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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.

Tuesday, July 30, 2013

Life is getting in the way of blogging.

Two months later...

We are no longer fighting neutropenia. Ruthie has gotten her medicine and WBC under control. She is back to her normal self according to her numbers and her appearance. We still do not know why she was suffering from neutropenia, but we DO have it all back to normal. We are very grateful for this victory, even though we do not know how we won.

As for the rest of us, Charlie is moving and shaking EVERYWHERE. We celebrated her 1st Birthday on May 25th, even though she was born May 17th. She had a blast opening presents and eating her cupcake. It was wonderful to watch her and Ruthie interact with all their cousins.
Kids being kids makes this Momma's heart smile :) (Pictures to come later)

Josh and I have been very busy this summer. Josh spent a week in Chicago for work. It was interesting being a "single" Mom for a week. I have much more respect for those who do it alone all day, every day. I was completely exhausted without him here.
After his trip, Josh took about a week off work to have some time with the family. During this week,

-We had a cardiology clinic visit... Ruthie's heart looks wonderful, her attitude was not as wonderful during the different aspects of clinic. IE X-Ray, blood draw, Echo, EKG, etc. But she is healthy.

- I started a new job while still working at Bandana's. Now I am juggling two work schedules.

- I became a part of the Family Advisory Council at SLCH. Although I have only attended one meeting, I am looking forward to helping families like mine and giving other parents hope and understanding.

- We did MAJOR house work and organizing.

- We enjoyed celebrating the 4th of July with our families. I don't know the last time we spent a holiday with both families and did not have a sick kiddo. It was AWESOME!

- We celebrated July 5- Ruth's heart birthday.
My FB post on her heart birthday... I was unable to log onto blogger that day.
We are so truly blessed to say for the third year...
Thank you sweet donor family and donor angel. Thank you for giving us the gift of love, the gift of hope, the gift of life. We continue to ask God daily to provide your family with strength and peace. Although we do not know you or your family, your family's act of compassion has FOREVER changed our lives.
Happy 3rd Heart Birthday Ruthie! Ruthie, you continue to amaze me by your strength and your excitement for life.
Thank you to EVERYONE who has been on this journey with us. Thank you for cheering us on, listening to us vent, cry, laugh. Thank you for giving us advice and reminders to stay calm and let God work. Thank you for learning and understanding terms like HLHS, 02 saturation, g-tube, HR, cath, rejection, rounds, immune suppressants... the list goes on and on. But most of all, thank you all for praying. We completely understand that without these prayers, we would not be strong enough to stand today. So from the bottom of our very, very grateful heart, THANK YOU for helping us get to and through today.
We love you!.

All and all this summer has been fun, busy and most importantly healthy. Ruthie and I are both looking forward to school starting. Ruthie starts August 14th and I start August 19th. It's almost time for my favorite shopping trip... SCHOOL SUPPLY SHOPPING!

Just a reminder....
This year’s Congenital Heart Walk will take place on August 25, 2013 at Creve Coeur Lake Memorial Park. Please join the Pinkalicious Warriors as we walk all over CHDs.
For more information, visit ....
http://missouri.childrensheartfoundation.org/events/congenital-heart-walk/

Thank you all for your continuous support and prayers. We are blessed by you each and every day.

Thank you Pinkalicious Warriors.!

Heart hugs!!

Laura 
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