PRS diagnoseed/DIAGNOSED CHANGED

[Patty]

Hannah born 11/8/04, 3lbs. 11oz. 5 weeks early. Mom had severe pre-clampsia and HELP syndrome. Hannah had trouble breathing, stitched tongue down, intabated and transferred to Wake Forest Baptist Hospital NICU unit. Large base of tongue, trouble breathing, soft cleft palate. Diagnosed PRS, 11/10/04 taken to surgery to lengthen jaw and possibly a trach, plastic surgeon Dr.Argenta (expert in this field) said she did not have short jaw so no surgery for that. ENT put in a trach. Very hard to feed. Haberman bottle was not working, aspirating, changed bottles after swallow test. Even Flow nipple, medium flow. Did not aspirate on this nipple. 1 tablespoon of rice cereal to 70 cc of milk, what she does not eat she is fed through ng tube in the nose straight similac neosure. Will only suck 15 to 35cc every 4 hours.Gaining weight as of 2/17/04 7lbs. 14 oz.stayed in NICU until 1/20/05. Before we left hospital ENT doctor changed her diagnosis. No PRS. Seen ENT 2/16/05 and now he is saying just crowded in her mouth and airway.He said he's has never seen anything quite like her condition. We see plastic surgeon on friday for first visit. Very confused.
ENT does not want to take out trach until soft cleft palate is repaired. Doing well with trach. Mom has never heard her cry. Dad did at birth. Wake Forest Baptist Hospital is one of the best on East Coast but we are disappointed so far. I hope and pray the plastic surgeon can help us more than the ENT has.