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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.

Monday, February 22, 2010

It's been a month!

A month ago today, Ruth was admitted to Childrens Hospital. Over the course of a month, she has undergone a heart cath, a lung biopsy, a liver biopsy, a MRI, numerous echos, chest xrays, ultrasounds, blood work and so much more. Throughout it all, she has been such a fighter! She always seems to stay fiesty despite her many meds and full out sedations. She is truely amazing to me. She is the reason I have hope and she is why we keep fighting. Ruth is such an inspiration to me.

As I mentioned before Ruth had been having fevers on and off for a few days and the team was trying to put their finger on it. Well they pinpointed the problem and now she is on antibiotics for a UTI and she has been fever free for 4-5 days! Ever since the fever broke, Ruth has been sleeping better and tolerating her feeds. She is now at 25 mils per hour which gives us her max. Perfect! And since she is tolerating feeds and having bowel movements regularly again, they were able to get rid of some lines. She no longer has an art line, a PICC line, the EJ in her neck or the foley cath! We have worked our way down to the broviac and her vent! It is so nice to know that we don't need those things anymore. Not needing those lines means she is getting better. We finally think she has recovered from all of her poking and proding! Amazing!

To make this day even better, Ruthie is starting to be awake more often and is even smiling at us:) it has been way too long since we have seem those heart melting smiles. Oh how wonderful.

Although things are looking up, we are constantly reminded that thus stage is temporary and that without a new heart, things will eventually get worse. So we are praying. Praying so hard for Ruth. Praying for her doctors, nurses, the transplant team, the transport team. Praying for all the families that are struggling. Praying for the family that will help save our Ruthie life through donation. Praying that they can find peace and comfort in Gods plan. Praying for courage. Praying for strength! Praying for guidance and for the ability to let God take control!

Please continue to pray for Ruth! We are so blessed to have her and all of you in our lives. Your support and prayers mean so
much to us as we wait this out. Thank you so much! It is through friends that God shows his love and compassion! Thank you!

Hugs!
Laura

3 comments:

  1. I am so glad to hear that she is doing better. :) I am still praying for Ruthie and your family.

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  2. She is an amazing little girl. She has touched our lives in ways I didn't even know were possible. You are the strongest momma I know and am so proud of you!

    All our love.

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  3. Hi!
    I came across your blog today. I hope Ruthie is doing well. I will say many prayers for you and your family. Remember to stay positive. Positive thinking brings positive results. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
    I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
    My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
    Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
    www.lucky10.etsy.com
    Thanks so much and we look forward to reading more on your blog!
    Thanks,
    Vito Lisa

    P.S. If you want to keep up with Cassidy’s journey here is her Carepage info:
    www.carepages.com , Page name: cassidylisa

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