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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, October 19, 2010

The dream catcher lives on

Yesterday, we made a scheduled trip to SLCH.
Ruth is quite popular so we took her to see a few doctors, nurses and techs.
At 10:30 am, Ruth had a GI study. She did well with the dye that was injected into her NG tube. It was drinking that icky dye that caused a problem. About 30 seconds after being force feed dye, BAM! stomach cleared! It was expected though.
After the GI study, we made our way to Dr. C's office. Ruth was measured (27") and weighed (18 lbs 8 oz). She is still growing. No major changes from Dr. C (the transplant doctor). We are kicking the bumex (a diuretic). This is the first time Ruthie will be diuretic free since birth. (Fingers crossed it works).
After our transplant check- up, we took the time to visit some friends in the CICU. Ah, home. I think I miss the nurses and doctors more than Ruthie. I cannot explain the feeling I get when I see our CICU family. It is such a warm, comforting feeling. It's like coming home after a vacation or being away at school. It is so wonderful to start catching up as if we never left.
Anyways, back to Ruthie. Ruth shared some smiles, laughs and new tricks with the CICU. She really liked showing them how she says No (by shaking her head). She was so comfortable in her surroundings that she fell asleep in the CICU. She just passed out and slept like a baby. Silly little girl.

BUT.... big news! While we were visiting we met someone, Bre's mom.
Bre had been placed on the transplant list a while ago. She was our neighbor in the CICU.
On our last day at Children's, we visited Bre and gave her and her family a gift, the dream catcher.
We passed on our heart dream catcher that brought us hope and a heart.
We finally felt we could give it away in good health and spirits on our last day (Sept. 13th).

On Oct 13th, 5 days after Bre celebrated her 12th birthday (in the CICU), she received her heart!
YEAH BRE!
So, her mom came up to us and told us about her success.
She is only 5 days post transplant and she is sitting up and doing homework.
AMAZING!
We shared a tear or two and of course a hug.
I was so excited to hear that the dream catcher lives on!


After our CICU visit, Ruthie and I went to the garden so she could sleep and I could get out of the hospital. It was such a gorgeous day to sit outside and take in the fall weather. I love it!

At 1:40, we met with the pediatric surgeon to discuss the button. It was a nice surprise to Ruth when she woke up from her nap and Daddy was there to play. Josh took off work to meet with the surgeon as well. We talked things over with her and now we are set for the button placement on Friday, Oct 22nd. Yes, this week!
I could not believe they had such a quick opening. But alas, we need to get going on it. So Ruthie will be NG tube free and now G- tubed as of Friday. This of course means we will be spending the weekend in the hospital. I am not too worried about the hospital stay because we are staying on the 7th floor:) YAY!
So we will be vacationing at our second home this weekend. It will be nice to catch up with friends and family there:)

So all and all things are still going in the right direction. We should have in- home therapies starting the first week on November. Otherwise, we are just LOVING being "healthy".

So until next time.....

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