Posted by marlina
on 10/22/2009, 8:23 pm, in reply to "Re: One week of mixed emotions"
70.122.113.104
Sorry I couldnt get back to your email sooner. We spent a while in the hospital with her. She wasnt eating and ended up losing too much weight. She also was jaundiced. We are home now. Her name is Isabella. Her breathing problem is constant. She will stretch out her neck when she seems very distressed with it. Sometimes when she lies on her back and recently her tummy it goes away for a little bit. Her ped. recognized it pretty quickly on our first visit to his office. He keeps reassuring me there is nothing to worry about. He is recommending us to a cardiolagist and a genetic counselor as well. I'm still pretty nervous but grateful to have her home. Thank you for your response.
--Previous Message--
: Hi Marlina, first congratulations on your baby
: girl!! What's her name??
:
: Second, take a deep breath. You're doing the
: right thing researching and finding out more
: about PRS. I too, had never heard of it
: until my daughter was born 3 years ago. I
: remember feeling as you do - overwhelmed and
: scared. Let me reassure you that it does get
: easier - you will be able to sleep again.
:
: Third, all kids are different and that's the
: thing with PRS babies. There's no across the
: board thing that works for all of them.
: Typically the docs tell you not to place her
: on her back. But there are different
: circumstances for each kid - my daughter
: absolutely hated being on her belly and it
: caused more issues with her breathing than
: being on her back.
:
: Are you home with her?? How is she eating?
: Any other concerns - excessive crying,
: spitting up, not eating? When she's having
: breathing issues, is it constant or only at
: certain times? When she is having trouble,
: or sounding like she's working really hard
: are there other symptoms? Is she pulling in
: hard at her belly or her neck to take air
: in? Are her nostrils flaring when she
: breathes? How is her color - any bluish tint
: to her lips at all? Is her breathing really
: fast? These are all signs of respiratory
: distress. For your peace of mind, perhaps a
: visit to your ped would help. Does your ped
: have any experience witha PRS baby? If not,
: a children's hospital might be your best
: bet. In a case like your daughter's (where
: she seems fine otherwise) a ped with no
: experience may just push aside the little
: things. ALso, if her breathing continues to
: be an issue a sleep study would be a good
: thing. The you'd know more concretely if she
: needed help.
:
: It's hard. And it stinks. We all know, we
: all have been there. If you want to chat
: more, please feel free to email me, or find
: me on Yahoo MEssenger.
:
: Email: faywrayy@yahoo.com
: Yahoo Messenger id: faywrayy
:
: I also keep a blog about Kate (my PRS baby
: who is now 3). I wrote a lot about the
: initial weeks of her diagnosis. If you want
: to check it out here's the link:
:
: http://pieceofkateb.blogspot.com/
: Angela
:
: --Previous Message--
: Hello,
: I am a first time mom and my little girl is
: one week old today. I knew something from
: the first day but the nurses and doctor
: reassured me she is in perfect health. I
: persisted with questions to another doctor
: and learned that she has PRS. She does not
: have a cleft palate but when she breathes
: she sounds like she is struggling SO hard.
: The only time the sound goes away is when
: she lays on her back. However, I have been
: warned to lay her on her side and never on
: her back for the tongue reasons. What is
: this sound. My doctor says we have nothing
: to worry about and we will not need any
: treatment. I dont get any sleep unless my
: husband is awake to watch her. I am so
: afraid of her choking in her sleep. I am a
: very overwhelmed first time mommy. Until
: Monday I had never heard the name PRS. Any
: advice is welcome and appreciated.
: Thank you
:
:
:
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