Adrianna Rose

My daughter Adrianna Rose was born on September 6, 2013 at Children's Hospital of Philadelphia. She was 8 weeks early. She was born with duodenal atresia, av canal, partial anomalous pulmonary venous return, and heterotaxy syndrome in the heart. She was only 3 lbs at birth. At 2 days old she had her first surgery to repair the duodenal atresia (blockage in the intestine). They also placed a gastrostomy tube which is where she gets her milk from. She was starting to improve and then at 3 weeks old she got really sick and developed an infection called necrotizing entercolitis. It damages the intestines. She needed emergency surgery and lost 25 cm of her intestines. She has an jejunostomy. She has an ostomy bag that she poops out of. They started giving her milk again 2 weeks after the surgery and they are refeeding what comes out of the ostomy into the other part of the intestine called the mucus fistula so that she absorbs the nutrients so that she grows. She cannot go home until after they do the surgery to reconnect the intestine. She also has her problems with her heart. She had an asd and vsd but the vsd closed. She will need heart surgery but the cardiologists wanna wait until she is bigger. They want her to go into heart failure before they do the surgery. We have no idea how long she is going to be here at CHOP. We don't know when she will have her 2 other surgeries. I am pumping to supply milk for her. I stay at the Philadelphia Ronald McDonald house. The cost to stay there is $15 a day. Food can get expensive here. I am not working right now so I have no way to pay my car payment and insurance and my phone bill. I also need things for Adrianna once she can come home. Any help or prayers would be amazing. Thank you for taking the time to read our story, God Bless!


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Erin Rohrbaugh 
York, PA
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