TaraEdwards

Josie will be 4 months old on the 13th. She has been home since December 5, 2007. We've been to the special care clinic, surgery clinic and the pediatrican a couple times each now. Josie is doing really well. At the time of discharge she weighed 15 lbs. 12 oz. She lost 4 oz. the first couple weeks home but has now gained them back plus two. Josie gets all her feedings through an NG tube. Since she was on the ventilator since birth she has never taken food orally. The surgeons are not comfortable repairing her hiatal hernia & placing a G-tube in anytime soon. They want to give her abdomen and diaphram more time to heal. Josie vomits anywhere from 2-4 times a day, sometimes throwing up the tube. It's very stressful, on everyone, having to reinsert it. Next week we will begin physical & oral therapy at home. I'm looking forward to learning new ways to help Josie any way I can. I get depressed at times because I feel like there is more I should be doing for her. Being on continuous feeds, I change the feeding bag every four hours. She will not suck on a pacifier let alone a bottle. As of last Saturday, she is finally off all narcotics. At the time Josie was dischared, she was still on Ativan & Methadone. I had the pleasure of weaning her off them. I'm happy to announce that she is off and not having any withdrawals. We get a little break, about a month, until our next visit to any doctor. Hopefully, it will be a smooth and quiet month.

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