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The Wilson Family

by - July 05, 2009

This is the story of our growing family as we deal with the implications of having a child with a serious heart defect. This is why we call it "thewilsonheart" rather than "josiahsheart" or "josiahslife." This is our family's story...as a family. We have two beautiful daughters, Daylia Joy and Hazyl Grace, who are the delight of our life. Our newest miracle, Josiah was born at 7:50am on May 20, 2009. Josiah (Jehovah has healed) Nathaniel (Gift from God) has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS), as well as an intact atrial septum. Josiah underwent an extensive heart catheterization that put a stint through his previously blocked atrial septum the day he was born. This was his sickest point to date. Josiah came through the Norwood procedure successfully, 13 days after he was born. At 3 1/2 months Josiah had to have an unplanned open heart surgery to open up a narrowed left pulmonary artery that was restricting blood flow to his lungs. He recovered from this surgery well, and at 5 months old we agreed to have the tracheotomy surgery because it was obvious that he was many, many months away from breathing on his own. The trach is a way to get us home, although with a ventilator, and Josiah is much more interactive with us because of it. At 7 months old, we were finally discharged from the PCICU, only to return to the hospital 3 days later because of high fevers. Upon returning, Josiah had another heart cath, which determined he would not be a candidate for the 2nd stage open heart (Glenn) procedure because of high pressures in his lungs. We settled in for the long haul, but just 2 weeks later, Sunday January 24, 2010 Josiah's BT shunt clotted off and he passed away and went peacefully into the arms of Jesus. Now we are processing this loss, and celebrating Josiah's precious life. We want to be a help to others. Please feel free to contact us here.

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