Tuesday, March 10, 2009

Miss Lilah!

I love keeping in touch with my past brides and watching their families grow and hearing their stories! ...

this one is about miracle baby, Miss Lilah!

Miss Lilah was born with Pulmonary Atresia w/ VSD. Not long after birth and still during the hospital stay an echcardiogram uncovered problems. She was rushed to the PICU and put on a special medicine that kept the PDA open until she could get to
Kansas City where they were to perform a BT shunt procedure. She was born on Dec 8, flew to Kansas City on Dec 10, and had her shunt surgery on the 18. The surgery was a success, they came home on Christmas eve. The shunt is only a temporary fix, until she grows big and strong enough to have her pulmonary artery reconsruction corrective surgery at about 9-12 months.The surgery will basically build her a pulmonary valve that should be perfectly functional like yours and mine, and at the same time they will take the shunt and close the VSD (hole in her heart).Until then, she sees a pediatric cardiologist regularly and takes aspirin to ensure that her body does not clot off the shunt, which in her case could be fatal. The Children's Miracle network provided them with gas and lodging vouchers for the trip and the stay there, and the Ronald McDonald House provided them with a place to stay close to the hospital and hot meals to eat when they were not at at hospital. She has a carepage, at www.carepages.com/carepages/lilahraeoelke
They are also planning on participating in the American Heart Ass. heart walk here in April, and the walk for the Families with Congenital Heart Defects organization in
Kansas City in May.

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