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.

Thursday, April 29, 2010

Sobriety

As of today, Ruthie will completely drug free. She will remain on her milrinone (heart med), her lasix (diuretic), her reglan (stomach acid med), her pepcid (a heart burn med), her asprin (as a blood thinner) and her potassium supplement. However, she will be completely, 100% on her own in terms of pain or sedation medications! WOO HOO!

I never thought a 8 month old would face sobriety. It sounds so silly to say, but at the same time, pretty unreal. She is finally sober for the first time in 3 months. WOW! Now we get to meet the "real" 8 month old Ruth. She will no longer be hiding behind one drug. What you see is what you get! I am pretty excited! I can't wait for her to be in her "right" mind.

Still waiting... Of course trusting God and praying. Another heart came in the other day for another SLCH child. Amen Lord. Amen. Please keep Cameron, Nolinn, Audrey, and Grace in your prayers. They are starting their "second" life. Give them strength and understanding. Thank you for giving them this hope.
Pray for Ruthie as she continues to wait. She is amazing to me. I am so blessed to have her as my child. I am so very VERY proud of her strength.
Pray for Ben. Derrick, another Cameron, Jacob, Lorenzo, Tucker, and all heart babies!

It's in Gods' hands!

hugs!

Laura

Wednesday, April 28, 2010

What's going on!

Ruthie is just doing what she does best, which is waiting. She is medically stable and at a standstill. She has a total of 4 teeth that have cut through the gums and there is a 5th on its' way. She has also found it necessary to sleep through the night. The over night nurses are a bit bored with her. But hey, that is something that we can all handle.
So nothing really new or different. I am still working with the low carb diet. It is a bit harder as I progress in the plan. I am so ready for baked potatoes and spaghetti, but in time. I am down 9 pounds and I would love to lose 5 more before the wedding day, but we shall see. I am pretty content now, but I may get more motivated and actually start working out. Once again, it all depends on what life brings.
The wedding planning is coming right along. I am working on getting my addresses together so we can send out invites this week. Ugh, I am really slacking when it comes to the invites. I think sending them out makes the wedding a real deal. I am excited for the wedding, but at the same we are still so unsure where we will be come June 26th. Its such a catch 22! However, we will venture on and know that God will provide and His will is what will be done.

Oh and to add to my stress, I have decided to take a Intro to Biology class this summer via the web. I will have labs each Thursday for 4 hours, but otherwise the rest of the work is internet based. I am super exited! I am on my way to the pre-nursing program. BIG LIFE CHANGE! I am so so happy! I can't wait to get started!


Oh, while my sister watched Ruthie today (since I was working 11-3) she took a picture and sent it to me. It was the best picture text EVER! I am so grateful that we have a wonderful family that is there to support us. THANK YOU THANK YOU THANK YOU! You are all so amazing! I love you!


So voila!





Big Big prayers for all the heart babies and for their families. Even bigger prayers for the doctors and nurses that care for these families and children. They are such compassionate, wonderful people. Thank you God for giving us the best of the best to work with Ruthie! We are so blessed!
AMEN!

Hugs!
Laura