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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, September 28, 2010

Clinic

On Thursday, we made our first trip back to Children's.
At 7:45 am, we pulled into SLCH. We were running a bit late because Ruthie decided to pull out her NG tube. So after replacing the tube and sitting in morning traffic, we finally made it in!
We briefly stopped to say chit- chat with a couple of 7 West nurses and the SLCH front desk staff. It was a nice familiar feeling to re-enter our "home" of 8 months. It definitely put a smile on my face.
We proceeded to the Out-patient lab center. Ruthie saw Kathleen, transplant RN. Kathleen reminded us of all of our stops for the day. In no time, we were flying through appointments.
Ruthie's blood was drawn. Her chest was x-rayed. Her heart underwent an echo and an ekg. Then like clockwork, she took a nap. She was pretty worn out from all tests and visitors. We saw quite a few of doctors, techs, nurses (who we all call heart friends) while we waited in the Heart Station.
Ruth woke up on cue for her height and weight measurements. She is now 26 3/4 inches and 16 lbs 12 oz. WOO HOO! WAY TO GO RUTHIE!
Needless to say, everyone was impressed with her weight gain. Dr. C took her off a few meds because she is progressing in the right direction. So, no more icky nystatan for her mouth! No more spiralactone to help her kidney's produce urine. And finally, no more enalapril because her heart function has improved!
All and all, good report from Children's! Ruthie is doing great!
Since we had such a good day, we made a quick visit to the CICU. Ruthie made some cookies for everyone and wanted to drop them off herself.
It was AMAZING to see a lot of our "friends" again. We chatted for a little bit. Ruthie gave some smiles and we even got a group shot!

(I hope you all don't mind the picture being put up!)
We Miss You!

Tomorrow, we will go back to Children's for another blood (tacro level) draw and a broviac dressing change. Otherwise, we don't have anything major scheduled until Oct. 5th, which is Ruth's biopsy.

Thank you so much for the constant prayers and support.

Here are a few snap shots from this weekend!
We made a trip to a secluded local park for our daily walk!




Cheering the Rams to their 1st victory!

And trying out some water!

What is this cup thing?

Heart Hugs!
Heart Hugs from on

2 comments:

  1. The Smith'sSeptember 28, 2010 at 11:13 AM

    You know it's a good hospital when you return to it with a smile on your face! So happy to read the good report Ruthie got.

    ReplyDelete
  2. ShannonSeptember 28, 2010 at 3:11 PM

    Yay Ruthie! I'm so glad to hear a good report. :)

    Always praying for that sweet girl!

    ReplyDelete

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