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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, June 15, 2011

Heart Walk plus....

Thank you all for supporting Ruthie in her first AHA START! Heart Walk. Thank you to all our walkers. Thank you to all our non-walkers, yet supporters. Thank you to everyone who donated and/or bought a Pinkalicious t shirt. You are helping spread awareness and raise money for research.
We had a wonderful time walking, albeit in the rain. Ruthie really enjoyed the walk. She took a a little nap and woke up in time for the big, walking around Busch Stadium's field, finale. After the walk on the field, we took a family picture in our Pinkalicious gear.



(More pictures to follow, once I have a new camera cord. I loose those things like crazy! oops!)

In other Ruthie news, Ruthie had hit discovery mode. She is pulling up on EVERYTHING. She is eating ALL of her daily nutrition and medications by mouth. She has not used the tube in 3 and 1/2 weeks. She is cruising furniture and walking with finger- support. She is drinking from a sippy cup BY HERSELF. I could go on and on and on. (I may be a bit proud!?!)
We are currently using three in- home therapies a week. We have Occupational, Physical and Speech (for communication) therapies in our home once a week. We also go to Children's once a week for Speech therapy for food and eating guidance.
Ruthie has not had a biopsy OR seen the transplant team since her last biopsy, March 31st. Of course, I have spoken to the transplant team for 2 ear infections (referred to pediatrician) and medicine changes. I can not let them forget about Ruth;)

We are otherwise, happy healthy and living life. It has been wonderful going on walks, trying out the grass (not a big fan), swinging at the park and swimming. Yes! Swimming. Ruthie is a little water bug, as long as the sun is not too bright.
We are really enjoying ourselves this summer.

In up coming news, Ruthie has her one year heart anniversary and cath/biopsy on July 5th. Please keep her in your prayers during this time. We do not have any reason to believe anything is wrong, but it always makes me a little tense. Please, also, say a prayer for our donor family. This day also marks a sad anniversary for them. On that day, they lost their child and in turn, gave Ruthie life. I pray daily for this compassionate and amazing family.

Thank you for being a part of our lives and our hearts.
Heart Hugs from on

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