Preparing for surgery

[Melanie]

My second child, Savanna, was born April 23rd with a soft cleft palate. Three weeks later she was diagnosed with Pierre' Robin Syndrome. She was hospitalized at Vanderbilt in Nashville for 16 days and had tracheostomy tube and g-tube surgeries. Our nursery became a medical supply room. People stared as though she had 2 heads. We were able to get rid of the feeding tube at about 5 months and just 2 weeks ago she pulled her trach out and we were unable to put it back in. She was hospitalized over night and is doing fine without it. Her palate surgery is scheduled for 2/28/00 and we're very excited and scared. I welcome anyone who would like to offer advice, friendship, etc.


As for feedings, we have had wonderful success with baby food mixed with cereal. It has to be thick enough for them to pass back with the tongue. Also, we use regular nipples now. Try Evenflo's "sensitive response" - they are fabulous.


Thanks!!
e-mail us @ luvthepredators@aol.com

[Kent]

weluvtheoilers....lol. i am from Edmonton Canada. last thursday my sister gave birth to her first baby. He was born with a unilateral cleft palate and a hairlip. My sister was devastated,as was my mother and my wife who is expecting our first in 2 months(fingers crossed) Her husband seems to be okay, i just hope he isnt bottling it inside. Coming to this site and reading the stories has been encouraging and comforting. i have taken it upon myself to try and follow the progress of your child....being as you are the 1st person i have spoken to on here. (Being a hockey fan helped too....ha) I feel a need to connect with someone that is facing the same mountains we are. I think the little guy is cute, but i am trying to find a tactfull way to tell my sister this without her thinking i am lying to make her feel better. i have only seen him once but i feel like i already love him. Shift work has deprieved me of visiting this weekend


I wish you and your family the best of luck in the coming month and hope to hear more from you in the future. Any information you can share will be greatly appreciated. Either on here or e-mail.....kent.gregory@home.com. I will pray for you too!


We want Berehowsky back!!!!


Go Oilers!!!


Please take care.