OwenOwen has had three surgeries: jejunal resection for an atresia on day 2 of life, another resection with jejunostomy/fistula placement on 10/05/12 for a total bowel volvulus and ostomy takedown and further resection on 01/08/13. After his three surgeries, he was left with 30 cm of small bowel. He is currently on TPN for 16 hours a day and an overnight NG feed of 12 mL/hour for 10 hours of breast milk. He takes 4 bottles during the day of 20 mL and is beginning to eat solid foods, including cereals and baby food. He also takes medicine by mouth or through his NG, including Omeprazole, Loperamide, Cholestrymine, Vitamin D and Selenium. He also has Zantac in his TPN. He has labs drawn every week or every other week, monthly visits to his GI doctor and skilled nursing overnight. He is also developmentally delayed, particularly in gross motor skills, and receives physical therapy through early intervention.

For my first six months, the only home I’ve known is the Children’s Hospital of Philadelphia. I’ve seen my surgeon more than my aunts and uncles, and didn’t feel the touch of a stuffed animal until my six month birthday. Life in the NICU is anything but normal, with constant monitoring, testing, and nursing care. I recovered well from my jejunal atresia and surgery, really began to love eating, and then suffered a total bowel volvulus. That changed everything. They didn’t let me eat anything for three months. They also woke me up every three hours to change the dressing on my belly for my jejunostomy. With surgery behind me, a brand new Broviac line, and NG feeds started, I finally left the hospital and moved home at six months. I love being home but I do not know a life free of medical intervention. My belly and throat really hurt when I get bad reflux, almost every day. Sometimes I get a really bad rash on my bottom, a symptom of my condition. They put a tube in my nose to feed me my milk at night which feels icky and makes my reflux act up at night. The mean nurse also comes once a week to take my blood and clean my chest. I cannot even begin to explain my limitations and what makes me different from other babies because this is the only life I’ve known. The challenges ahead of me are daunting and so much in my future is unknown, but I am grateful to still be fighting and progressing each day. I wake up each morning with a smile on my face and embrace each opportunity to learn and experience something new. My parents tell me that I am special and amazing, not in spite of what I’ve overcome, but because of who I am. I cannot say how this diagnosis has impacted my life because it IS my life but I refuse to let it define who I am.