About Me

My photo
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, January 29, 2010

Holding on

Unfortunately, this update is not really informative. We havent spoken to the hemotalogist yet so we do not have any more information at this point. Just still waiting and praying that they can at least put their finger on the issue. Any information (good or bad) would be nice to hear. Just a plan!

On a lighter and exciting note,
Ruth has been exubated! The tube is gone and she is doing much better. She seems to be a whole new baby now that the icky tube is gone. She is still on nasal cannulas at 40% and level 6.
Besides exubation, there really hasnt been much of a change today medically. Ruthie is more awake and not so cranky:) AND she ate a whole 20 mils (a little more than a half ounce) which is exciting since she hasnt been given any food since 12:30 am Wednesday morning. I think that as we work on her feedings that she will become more and more aware and happy.

Right now she is resting and being very calm. HUGE difference from last night. We havent had to give her any morphine since her exubation. We are pretty excited because she had to be given 4 doses last night in order to calm her enough that she could rest. So no morphine seems like a good deal to me.

I dont feel like I say this enough, THANK YOU! THANK YOU! THANK YOU, for all your prayers and support. It is really helpful to have so much compassion expressed. I feel the love and I feel the prayers working.

We hope to know more about the blood tests soon. However, some of these tests are extensive and it may take a few days for the results to come back and then for the hemotalogy team to analyize it all. So we are waiting. Waiting on an answer. Waiting on a plan. Just waiting. But while we wait, we take in each moment and enjoy what we have now. We are on a road trip and on every road trip, there are detours, bumps and stop signs. Right now I feel as though we are just at a yeild.

PLEASE pray for Ruthie, along with all of the heart babies. God is in control and as long as we believe and have faith, everything will be okay. Whether or not we like the "okay" that occurs is another story. But it will all be okay.

HEART HUGS!

LAURA
Heart Hugs from on

3 comments:

  1. connie and adamJanuary 30, 2010 at 8:07 AM

    I am still praying for Ruthie and your family. It has to be so hard on you and your family. I will pray that it is her heart that is doing all of this so she can get on the list. Stay strong and have faith. :)

    ReplyDelete
  2. jacobcassieJanuary 30, 2010 at 1:17 PM

    My name is Cassie Bradley, and I live in Fremont, Michigan. I read about Ruthie's story through Derrick Carter's blog, and just wanted to let you know that we're praying for your sweet little girl.
    Love,
    The Bradleys
    Jacob, Cassie, Luke & Emma
    www.thebradleysblog.blogspot.com

    ReplyDelete
  3. ShannonJanuary 31, 2010 at 1:51 AM

    Yay for extubation!

    We're praying, praying, praying for all of you! Always!

    Big heart HUGS and PRAYERS!!

    ReplyDelete

Subscribe to: Post Comments (Atom)