5 thoughts on “Our Address!

  1. Shanna,my wife and I are praying for you. The road is long, Shanna was in the hospital for 6 weeks after her first surgery. She weighted 7lbs 9 oz. at birth and was discharged at 4lbs 9 oz. I see you have been able to contact her. Wonderful young lady..

  2. The weight loss was the major problem for her, children with HLHS burn twice as many calories as normal children. Once corrected it goes back to normal. Breast feeding was not an option as the children burn more calories then they take in. It is a culture shock to be in a NIC unit..

    • I’ve been reading that about the weight issues. I’m all for doing whatever is recommended with all of this. I’ve been told I can pump and maybe it can be added to the high calorie formula but I’ve also read that sometimes these babies don’t do well with the fattiness of the breast milk. So I am prepared for whatever is going to keep her the strongest and give her the best chance-that is what we will do. I can only imagine what the NICU will be like with a heart baby- I’m sure we are in for a reality check. Especially with all the tubes and machines she’ll be hooked up to- not looking forward to that visual….

  3. It was a big shock for me, I really felt helpless. All the tubes and IV’s. I have a lot of respect for the folks who work in these units. Rest easy, they know there jobs very well and will keep her as comfortable as possible. It is amazing the miricale of life and the human body. It was a tuff battle for Shanna but once she gained the upper hand she recovered quite quickly. The fontan was a new procedure at the time for HLHS and Shanna was one of the first to have it in the Philadelphia area, SO there is alot of good data and history for them to follow. We were in uncharted waters at the time. I had sent Shanna a diagram of her heart and blood flow it is on her Facebook page. I should also make you aware, that one defect is not common in HLHS. Shanna has seven heart defects of her heart all of which can be seen in her diagram. It is easy for me to say now but, don’t let it overwhelm you, education of HLHS is you second best tool to understanding what is going on.The first being prayer, I truly witnessed a miricale with Shanna and my prayers were answered.

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