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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.

Friday, July 9, 2010

From Madame Blueberry to Pinkalicious

As many of you know, Ruthie has a big obsession with Veggietales. She completely blocks out the rest of the world when Larry and Bob are on her TV. We even joke around (after each road trip) that "Yes, Veggietales works in this room too." Out of all the various Veggietales tapes (yeah, I said it. Tapes... VHS. Ah, the good old days) and dvds, she has favored one character, Madame Blueberry.



She of course is blue....
just like our little blueberry Ruthie (pre-transplant)



However, as suggested by Dr. Oren (a CICU attending) Ruthie needs a new obsession. He always use to joke, pre-transplant, that we had Ruthie's room so pink that it almost made her look pinker. The Power of Persuasion. He then suggested that we look into the book series, PINKALICIOUS! So of course, we did and the main character, Pinkalicious is definitely Miss Ruthie.





Just look at Miss Pinkalicious (post transplant):








Oh what a difference a heart makes!

Ruthie still plans on making new friends (Pinkalicious) and keeping the old (Madame Blueberry).

Now for the medial stuff:
Ruthie is on a few immune suppressant drugs to help prevent rejection. She is starting to eat, sleep and poop on a regular schedule again. Her feeds are up to 5 mils an hour (giving her 4 oz a day). She remains on the TPN and lipids, though, for her main nutrition. She has 2 peripheral IVS, an art line, a double broviac and a quintan. Today she is down to pressure support on the vent.
She has a quick OR visit scheduled for one today. They are removing the quintan because it has a leak in the line. Dr. H will be removing it and replacing it with some type of pheresis cath line. It shouldn't take too long for him to get the lines in and out. AND as long as things go well, she will be extubated after the OR visit! That's right, EXTUBATED!! WOO HOO!

So we are moving right along. We are taking baby steps and of course letting Ruthie tell us when we can push her. We are still praying constantly for the donor angel and his/her family. We are eternally grateful to them for their generosity. They willing gave us the gift of life. Thank you, thank you , thank you!
Thank you to all of our supporters. Your prayers keep us strong. We love you all!

HUGS!
The Yarbrough's

2 comments:

  1. She looks beautiful! She has such a pretty skin tone - it is unbelievable what a difference a new heart and a couple of days makes!

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  2. How are things going? I am praying for you guys and, of course, sweet Ruthie.

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