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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, January 29, 2010

Being pushed off cloud 9

So as I said yesterday, her lung biopsie did not show any signs of pulmonary sesnosis. Woo hoo, right? Well apparently that is not all that her results said. Although what they were looking for was not found, they did find something else. Ruthie has microscopic bloodclots in her lungs. They don't know where they came from or why they are there, but they do know that they are diffused throughout the lungs and that until we know more, we are not on the list. Since day one here, this round, ruthie's blood work has come back abnormal. Before her lung biopsie, her PT and PTT were both elavated. The hemotalogist decided to do a shot of Vitamin K and said we discuss more later. We really did not pay it much attention because they were still planning on surgery. However, there is more we don't know yet. All they can tell us is that her clotting labs are no where near normal. And by they I mean the cardiologists and the CICU doctors. So we are waiting to hear more about her blood work right now. They are also investigating her liver right now. We are trying to see if her liver has finally taken a big hit from her heart or if there is something abnormal going on there.

Where do we go from here??
Plan for today:
exubate
eat
talk to hemotalogy

long term plan:
figure out liver issue
figure out blood clot issue

If her liver is only being damaged by her heart then, good news! We can still be put on the list.
If her liver has abnormalities then we must see if we can fix these issues and still be on the list. If we can not fix her liver, then we can not give a heart to someone who had a failing liver. And we can't give a liver to someone with a failing heart.

If the blood clot issue in her lungs and so forth is treatable or caused by her heart, then we can be placed on the list.
If the blood clot issue is not treatable, then we are not put on the list.

So, right now we are waiting. Waiting to hear if her liver and blood clot issues can be resolved. In order to know that we must know what is causing it to happen.
Please keep praying. Praying that they can find an answer. Praying that the answer eventually leads to a heart transplant . Praying that the doctors and nurses have guidance and wisdom. Praying for Ruths strength and ability to fight. Praying that no matter what the outcome may be that we can handle it. And most of all praying that whatever we do, Ruth will in the end be whole and happy.

On our CICU room wall:
Believe that all things are possible.

Amen!
Thank you all for the constant prayers and support. It is amazing to see how many people Ruth's story has touched. Absolutely amazing! God has big plans for her. Even if those plans are only to get people to pray.
It is not in our hands. So trust, have faith.

Heart hugs

3 comments:

  1. Oh Laura! I'm so sorry!! I can't imagine the roller coaster of emotions you all are on right now, and I know there's nothing I can say to bring you comfort. Please just know that we are praying SO HARD for all of you.

    There are a lot of people praying for Ruthie, and I hope the prayers can be felt. God does have big plans for Ruthie, and for you. You are both so strong, and we'll pray that your strength will continue as you travel this winding road. We're here for whatever you need.

    Big heart hugs and PRAYERS,
    Shannon

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  2. More prayers coming your way. I am hoping and praying that maybe if they can find out and cure what is causing the problem...they can fix her heart without a transplant. If that is not possible, I will continue to pray for her to receive a transplant. Either way, know that you are all in my thoughts and prayers.

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  3. I can't imagine what you are going through right now. We've been on our own rollercoaster but nothing like yours right now. I will continue to hope and pray that the conditions are right for Ruthie to be put on the list and the other conditions are treatable!

    Please know there are a lot of people pulling and praying for all of you! Stay strong hon!

    Always,
    Tracey, Jeremy, Riley, Drew and Jordan Snyder
    www.ForTheLoveOfMendingHearts.blogspot.com

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