Jonathan Nebeker
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Jonathan was born on November 24, 1992 at 28 weeks gestation, weight 1 lb. 10 oz. Jonathan's identical twin brother James weighed in at 2 lbs 10 oz. Jonathan spent his first 7 months of life in the Neonatal Intensive Care Unit (NICU). He was born with a severe heart defect called Tetrology of Fellot. He also had a rupture in his intestine which caused him to have a double loop illeostomy at 3 days old.
He was intubated and put on a respirator after the surgery and we were never able to successfully extubate him. The respirator caused lung damage (BPD) and the intubation tube caused scaring and that combined with tracheal malasia created an unstable airway. He was trached at 5 months old and still weighed less than 5 lbs.
At 6 months he finally reached the point were he could have open heart surgery to repair the heart defect. After this surgery we were finally able to get him off the respirator and at 7 months he came home. The next year was filled with multiple re-hospitalizations for pneumonia, RSV, or other respiratory problems.
He is now 4 years old, he has been decanulized for about 1 year and is talking fairly well. He is still on oxygen at night and he will probably be well into adulthood before his parents dare give up the oximeter.
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E-mail Jonathan's parents: Snebeker@m1.sprynet.com
