May 7th, 2016 by Heather

My daughter, Taylor, is 15 years old. She is a former 24 week preemie. She spent her first year of life in the NICU fighting for her life. She battled, being on the ventilator for the first 4 months, NEC and bowel resection, and ileostomy, and take down, numerous infections. After her first year, she fought feeding issues, resulting in a permanent feeding tube placed and also had airway reconstructive surgery. She had numerous sets of ear tubes, and had laser eye surgery in the NICU. After being on oxygen for the first five years of life she started kindergarten like a professional. No more feeding tube or oxygen. She fought off colds and such but always came out on top. About 4 years ago Taylor started with episodes of vomiting, nausea, and abdominal distention. The GI doctor diagnosed her with a psuedo obstruction and sent us on our way. After many hospital stays and Taylors daily life being affected she was referred to a new GI doctor. This doctor sent us immediately to a pediatric surgeon and in March of 2014, Taylor had bowel surgery. They removed liters of fluid and air from her intestines, and said they had “fixed” her. A few days later, Taylor was rushed back into emergency surgery with a complete bowel blockage. She came out of surgery a few hours later and the surgeon said she was a sick little girl. Finally after a 22 day hospital stay she came home and within weeks all of her symptoms were back. Taylor is a fighter but with the looks and criticism she receives I worry about her overall psychological health. She looks 9 months pregnant and people assume and talk. She hates her body, she hates feeling like garbage everyday.I can’t find a lot of information on older children with post NEC intestine problems. If anyone has any information I would love to hear it.

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