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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.

Saturday, December 26, 2009

11.23.09

Hospital Week Over and Another Week Begun

Posted Nov 23, 2009 7:39pm

I feel like I start each of these postings with the same, "I am sorry we haven't posted in a while..." opening. So in fear of being a broken record, Sorry it took a while to post.
We spent both Wednesday night and Thursday day in the hospital last week.
The heart cath went well last Wednesday. Dr. Balzer went in and opened the aorta with a balloon. It was not completely closed off, however there was some narrowing so he went ahead and took care of it. He also discovered that the pressures in her heart are a bit high. In order to have the next surgery, the Glenn, those pressures need to be lowered quite a bit. Otherwise, surgery is too risky and no surgeon will safely say that surgery is the correct choice. If this happens then our next step is a heart transplant. Since we would like to opt for the Glenn, Dr. Balzer gave Ruth some medication in order to stabilize the pressure in her heart. She will be on this medication until our cardiologist, Dr. Goel, thinks her pressures are stable enough or even until the Glenn. We have a cardiology appointment tomorrow and we should know how her pressures are doing based on the blood test we took today. Unfortunately, we will have to have another heart cath before her next surgery in order to determine our next steps.
In terms of her thyroid, her levels are normal. She is still taking a small dosage of medication for her thyroid daily, but no other issues have arisen with it.
Now onto eating. Ruthie was starting to slack off in her eating abilities early last week. After her heart cath and since we have been home, her feedings have greatly picked back up and she is acting more like normal Ruth. We are thinking maybe the narrowing in the aorta was causing her to slack off or maybe it was just a coincidence. Either way, we are glad things are starting to get back to a somewhat normal pace.
We are looking forward to the holidays and I plan on posting more photos after Thanksgiving so I can do it all at once.

On a special note, please keep Hailey (4 months HLHS patient) in your prayers. She is having her Glenn procedure done tomorrow. Her parents are really hoping that the ECOMO does not have to be involved after this surgery like it was after the Norwood. She is a cutie and she unfortunately has not been able to go home since she was born. Please pray for her and her family. I can only imagine their struggle.

BIG BIG heart hugs!
Have a great thanksgiving!
I know we have so much to be thankful for this year.

Thank you to all who are praying and supporting our little girl.
We appreciate you all!

Love,
Ruthie, Josh and Laura

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