Isabella: The perfect Poem

Friday, August 24, 2007

The perfect Poem

Scroll down towards the end of the page and you will find a poem called "Welcome to Holland" It is well worth your time to read this poem. The first time Matt and I heard it, it really spoke to us. It explains better than anything else I have ever heard about what it is like to have a child with a disability.

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Story of Isabella Grace Gudde

Isabella was born December 23, 2006. She was born with a congenital heart defect called Truncus Arteriosus. She also was diagnosed with a deletion on her 22nd chromosome known as DiGeorge Syndrome. She had her first open heart surgery Febuary 27, 2007. She had 5 med flights last year. She had pulmonary hypertension and kept going into respiratory distress. After the 4th med flight, they decided to put in a trach and put her on the ventilator. She was home for 4 days before she was flown back. The fifth time was the worst. I really thought we were going to lose her. She again showed great strength and determination. She had a cardiac arrest on Aug 1, 2007. She was left brain damaged and we were told she was blind and deaf. Matt and I never accepted this fate and as time has gone on we have seen miracle after miracle. Bella now has her hearing back and much of her sight. She is still very far behind, but is making progress everyday. She came home September 12, 2007 after spending almost 160 days at Childrens Mercy in 2007. She was at home up until this February. She went in for her monthly check up and we found out she had a huge aneurysm at the conduit site on her heart. She underwent her second open heart surgery on February 21, 2008, just 6 days short from being one year post op from her first surgery. She is now home and doing fabulous. Enjoy the stories of our everyday miracles with Isabella.