Hi, my daughter Jasmyne was born on the 10/8/09 and like most of you we didnt know she had PRS until she was born. She spent the first week in a special care nursery at local hosp and was then transferred to Syd Kids at Randwick, Sydney in the ICU. She spent 1 week in ICU and then 3 weeks in a ward and then transferred back to our local hosp for a couple more weeks. She has the feeding tube in her mouth as one of her nostrils is partly blocked due to the cleft. She is taking about half her feed orally and the rest through the tube. We are using the easy feed chu chu teat with the pigeon squeeze bottle. She should be on CPAP at night but is not tolerating it at all. She is going quite well at the moment and is sleeping great. We have our first appt with the cleft clinic in a couple of weeks.
Hiya, Thanks for sharing your story. Glad to hear Jasmyne is doing well. I am presently arranging a social get together for Sydney families and would love to send you the details so you can meet up with other families in your area. If you would like to send me an email on the info@pierre robin.org.au address or complete the membership form. (Please no personal details on this forum.) Then we can include you in everything. Good luck at the clinic.
