Posted by Rebecca
on 11/14/2009, 10:46 am, in reply to "Re: Having a Baby with PRS - Lots of Questions"
173.60.202.24
Hi Lori,
Thank you for sharing your story. Wow, it is crazy you had a bunch of ultrasounds and the doctors never picked up on the jaw issue. I guess they were just focused on something different.
You mentioned the long delivery...was there any immediate attention (related to PRS) needed to your son when he came out? I am curious as to why your son was in the hospital for 6 weeks. Was it because you had the jaw distraction planned and then done at 4 weeks? Or something else? I am probably most interested in the jaw distraction procedure in comparison to the others, though I have read (only a little bit) about each. First impression is that it seems to be the thing that actually attempts to correct the problem where the other choices seem to be more about getting around the problem to help the baby breath and waiting to see if the jaw grows on its own (then what happens if it doesn't...surgery, but on an older baby?)
How old is your son now? Have you had the palate repaired yet?
Rebecca
--Previous Message--
: Hi Rebecca! You've come to the right place if
: you have questions. I had ultrasounds done
: every three weeks due to a bicournate uterus
: but none of the doctors mentioned anything
: about my sons's jaw. We noticed it ourselves
: but stupidly never said anything. I think I
: would have preferred to have known in
: advance so I could do as much research as
: possible up front, rather than being taken
: off guard and feeling lost.
:
: I had a very long, but natural delivery. The
: doctor noticed the cleft right away and said
: I'd never be able to nurse. The lactation
: consultants had me try anyways just to help
: with the milk production. I ended up buying
: the medela pump in style. It worked great
: and was pretty portable since I was pumping
: around the clock.
:
: As far as time in the hospital, my son was
: there for 6 weeks but every kid is different
: depending on what route of treatment you
: decide on. My son had the jaw distraction
: done when he was 4 weeks old and could lay
: on his back immediately after the surgery.
: We had amazing results with this and you
: would never know he had prs. Please let me
: know if you have questions about anything.
: I can only imagine how worried and scared
: you must be, but once you get past the
: initial hurdles, your baby will be just
: fine. Good luck with everything
:
:
: --Previous Message--
: I found out at a 21 week ultrasound that my
: yet to be born baby has been identified with
: PRS. The micrognathia was really obvious in
: the ultrasound profile (even I spotted it
: and could tell something wasn't right). The
: genetic specialist could not be sure if
: there was a cleft palate, but thought she
: saw a small one. Obviously right now we
: have no idea of the severity of the problems
: once the baby is born, but after having read
: some info about PRS, I have many questions,
: some of which I can't even bring to mind
: now, so I am sure I'll be back with more.
:
: I'm especially interested to hear of anyone
: who has been in a similar situation. What
: was your follow-up prenatal care like once
: you found out the baby had PRS and what did
: you do to prepare in advance of the birth?
: Were you made to have a c-section (because
: of the PRS) or able to give birth naturally?
:
: I also have some care questions. I am a big
: proponent of breastfeeding and nursed my
: first for 18 months and only had a small
: hand pump to use as needed (not much). Now
: I'm expecting to almost exclusively pump, at
: least for some time, and looking into high
: end breast pumps like a high end Medela
: hands free one or wondering if I should get
: a pump from the hospital (cost involved not
: a factor to worry about). Also looking at
: the different types of bottles. Has anyone
: had any success at moving from bottles to
: breastfeeding later on (once jaw is more
: forward) and have any
: hospitals after birth and under what
: circumstances? (I am already planning on
: delivering at a hospital that can care for
: babies with major complications, so will not
: need a hospital transfer.)
:
:
:
: --Previous Message--
: I found out at a 21 week ultrasound that my
: yet to be born baby has been identified with
: PRS. The micrognathia was really obvious in
: the ultrasound profile (even I spotted it
: and could tell something wasn't right). The
: genetic specialist could not be sure if
: there was a cleft palate, but thought she
: saw a small one. Obviously right now we
: have no idea of the severity of the problems
: once the baby is born, but after having read
: some info about PRS, I have many questions,
: some of which I can't even bring to mind
: now, so I am sure I'll be back with more.
:
: I'm especially interested to hear of anyone
: who has been in a similar situation. What
: was your follow-up prenatal care like once
: you found out the baby had PRS and what did
: you do to prepare in advance of the birth?
: Were you made to have a c-section (because
: of the PRS) or able to give birth naturally?
:
: I also have some care questions. I am a big
: proponent of breastfeeding and nursed my
: first for 18 months and only had a small
: hand pump to use as needed (not much). Now
: I'm expecting to almost exclusively pump, at
: least for some time, and looking into high
: end breast pumps like a high end Medela
: hands free one or wondering if I should get
: a pump from the hospital (cost involved not
: a factor to worry about). Also looking at
: the different types of bottles. Has anyone
: had any success at moving from bottles to
: breastfeeding later on (once jaw is more
: forward) and have any tips?
:
: I keep reading about not putting PRS babies
: on their backs, but can they be on their
: backs at an angle (most car seats are like
: that) or in a bouncer chair? How do you
: keep them from turning onto their backs at
: night?
:
: How long were your babies kept at the
: hospitals after birth and under what
: circumstances? (I am already planning on
: delivering at a hospital that can care for
: babies with major complications, so will not
: need a hospital transfer.)
:
:
: