About me: I was 20 weeks pregnant when i found out that my daughter who was to be named Ashley has HLHS. I was devastated I ran out of the dr's office crying. I had alot of support from friends and family to help me thru this. I gave birth to Ashley 2 days before my birthday. And when I saw her I just cried the cutest little girl. 2 days after she was born she was transported to Children's Hospital in Seattle wa. March 1st 2006 she had norwood procedure she was in nicu for 17 days and went to ped icu then she became sick with a infection that sent her back into the NICU and back on the pumps and tubes she went. Ashley had alot of clear drainage from her chest tubes and the Dr's did not know why so they decided to do a cardio cath and after the cath they found out that the central line in her vein was clotted off and when they pulled it out they found the blood clot stayed in her vein they had to " roto-rooter" it to get it clear. and the drainage stopped. they put her on several dangerous blood thinning meds and moved her back to PICU after staying in the NICU for another 19 days. When she came home on April 11th with oxygen and a feeding tube. She was doing good so they proceeded to the 2nd surgery when she turned 6 months old.Ashley stayed in the hospital for 5 days then was able to come home. Now we are waiting for the fontan buts she still does not weigh enough so they want to wait until next summer unless something tragic happens. ..
