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My name is Peggy and my dd is Ellie, 9 weeks. She spent 3 weeks in the NICU here in Denver and we have a very long story of which I will abv. Normal pregnancy, went in for induction due to late decels at 41 weeks, turned into emerg- Csection. Apgar scores of 1 and 8. Needing O2, doctors scrambling to find out what is up with her deformed ears and toe. Enlarged heart later dx as Ebstein's Anomoly, poor feeder now has g-tibe and Nissen, deformed ears recently dx as profoundly deaf (after passing in the hospital). I'm going crazy. I have numerous doctor's apt. including Cardiology, Neurology, Genetics, Audiology, G-tube doc, visiting nurse, swallow clinics ect. Does anyone out there have any experience in any of these areas and can shed some light into my dark days. We are starting to nipple but she is only taking about 2-3 cc's of breasmilk. She has laryngeal reflux and gets disorganized after getting fluid in her mouth. I feel like I'm the only one out there with problems like this. Help, please
 
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