Hi there - congratulations on your new son. You have come to the right place. There are many people here than can help you.
If the hospital has a NICU, they should have a Haberman. If the hospital cannot provide one, you can just google it and find out where to get one. Though honestly the hospital should provide it for you. I would push them on that. Your son can't be the only child with a cleft born there needing a special bottle. Is there a feeding specialist there? You should ask for one so they can teach you how to feed Drew. A Haberman worked well for us but it is not the most instinctive way to give a baby a bottle and getting the hang of it takes practice.
In terms of who else you should see, speak to genetics as the PRS could be genetic. They will ask you a lot of questions about family members and history. If your baby has a cleft palate you will need to talk to a plastic surgeon about palate repair. Ask the NICU docs about breathing issues as PRS kids tend to have smaller airways. Sounds like you are not having any b/c you did not mention it. If so, good for you and Drew.
My son had a heart echo in the NICU...it was over 2 years ago and there were no issues so I can't recall why. My guess is that if a child has any type of birth defect they will want to check the heart as well to eliminate any other defects.
Come back with more questions, you can get a lot of help here.
My email is firstname.lastname@example.org if you prefer.
Good luck, Susie
: Baby Drew was born at 11:54 on March 8, 2010
: with PRS. He is currently in the NICU and
: having the usual (or as I have investigated)
: feeding issues. I have found, with no help
: from the doctors/nurses here, what he has
: and that he needs the haberman nipple. I
: live in the Washington DC metro area and
: really need to find one around here so that
: he doesn't have to wait days (at best) for
: shipping and delivery. Does anyone know
: where I can get this?
: Also, I am being informed that I should ask
: the hospital to run an "echo" on
: our newborn to follow up on common issues
: that run with Micrognathia and PRS. What
: does anyone know about this?
: Please help ASAP. Prefer email, but will
: take anything provided.
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