Posted by Jenn
on 3/30/2010, 6:36 pm, in reply to "Baby Drew"
72.75.77.253
Hello there, I live in the Washington, DC area and have a 21-month old daughter(Maya) who was born with PRS and spent the first 3 weeks of her life in the NIVU. We used the Haberman up until her palate surgery (done at 7 months) and had great success. I'm quite late in responding to this post but I wanted to touch base because you mentioned being in the DC area. We spent a lot of time doing research and met with 2-3 different doctors for each of Maya's issues...ENT, Plastic Surgery, Genetics, PT, Ophthalmologist, etc. If you ever want any references or need local info I'd be happy to share our experience with you. We chose different docs at different hospitals for different reasons. We go to Children's, Georgetown and had her surgery at INOVA. What hospital were you in the NICU? Feel free to contact me anytime at jjlindeblad@gmail.com or my cell phone is 703.582.0859.
I would love to speak with you if you are interested, any time. When we had Maya it was the hardest time of my life and it was a very rough 1st year. I truly relied on others who had been through the a similar situation, like many on this site. We made it through and now we have an amazing little girl on our hands.
Let me know if I can help in any way.
Jenn
--Previous Message--
:
: 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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