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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, September 15, 2010

Home is where the heart is.

On Monday, we left behind our home. We packed our bags. We gave thank you hugs and treats. We said good byes. And we left our home of almost 8 months to start a new adventure.
Josh, Zoey, Ruthie and I are all now living under one roof again! THANK YOU GOD! It is so wonderfully amazing to have her here with us. She is so happy and we are ecstatic! It feels marvelous to be with your family without having people in and out. As much as we loved the hospital and all of our friends there, we are quite content with living a private life. Josh and I have decided that if we were ever offer money to do a reality t.v. show, we would have to say NO! After being in the hospital for almost 8 months and feeling like we were on "display", we don't want any part of that again! LOL!

But seriously, it is really, really nice (and weird) to be home.

I am not going to lie and say that I don't miss our friends. We had such a fun group of people working with us. Ruthie loved playing with so many people and we loved the conversations. I do talk about all of the nurses, therapists, and doctors a lot. I like bringing them up to Ruthie and getting expressions from her. I think she misses them.

So needless to say, everything at home is going great! Ruthie is sleeping through the night. She is taking two good naps a day. She is happy. She is playing. We are working hard on tummy time and sitting.

And of course, I am taking pictures...
This was in 7 West before she came home!

She was awfully happy!

OUTSIDE!!

We made a trip up to the garden for a little outdoors time before the move!

DISCHARGE DAY!


Going on a trip for a peds visit!


Hanging out with Zoey!


Doggy kisses!


So we have a clinic visit a week from today, Sept. 23rd. We going in for labs, ekg, echo, x ray and the big talk with Dr. C. He will tell us how she is progressing since the transplant. Depending on the level of attitude, we may take a trip to the 7th floor for a quick visit.

Thank you once again for the prayers.
We are so blessed.
Thank you for the support!

Hugs!

Thursday, September 9, 2010

BIG NEWS...

I have apparently missed placed my camera cord:( So until then words will have to work.

Ruthie is doing beautifully. We are now in 7 West. We moved out of the CICU last Thursday. It was awfully hard leaving our friends. Luckily, 7 West is right down the hallway, so we get a lot of visitors. (which we love!) Ruthie puts on a little show for each of her aunts and uncles that stop by to visit. She gives her smiles and even some giggles. She is just a little ham (minus the little).

Medically speaking, Ruthie is coming right along. Her right lower lobe of her lung is open again! WHEW! She is off of 02 and she is on her "home" settings with her vest. Every 12 hours now, RT comes in and shakes her up a bit and then she continues on with her day. Her chest x rays are looking significantly better from a few weeks ago. The idea of a trach has been removed from the table. So from a respiratory stand point, we are improving and becoming stronger.
Ruthie is also gaining weight! She is 7.125 kilos, which in "english" is 15.6 lbs. She has almost tripled her birth weight. She is tolerating her feeds well. Speaking of feeds, Ruthie is going to try to transition to bolus feeds through her NG tube today. We are working on teaching her to be hungry again. She is use to constant nutrition since she has floated between NG, NJ feeds and or TPN over the past 7 months. So we are going to start slowly and see how far we can get her without pushing too hard.
So, all and all things are going well. Ruth is happy and smiling. She is getting a bit chunkier and stronger. Her OT and PT are going great. She is working hard on sitting and rolling. She is starting to enjoy tummy time. She is not too pleased with the idea, but she is taking it better now.
We know that we are far from being "normal", but who wants normal!?! I enjoy every moment of my constantly going, non-normal life.

We are still recovering in 7 West, but not for long.

On Monday, Ruthie will be discharged from St. Louis Children's Hospital! (Of course barring any further complications.)

We are so SO very excited. Ecstatic, even! I just can't wait to be at home with Josh, Ruthie and our doggy Zoey. I mean, yes, I am nervous. Any time you change things, you are nervous. However, this is a totally happy nervous.

Once again, thank you THANK you tHaNk YoU thank YOU ThAnK yOu!
- For the constant prayers
- For the ongoing support and advice
- For being there just to listen
- For reminding us that with faith, all is possible
- For standing up for Ruthie

WE LOVE YOU!