[tri-med] Re: Slow weight gain

Shannon,
What is a peaked palate?

Jennifer, mom to Isabel Pt13, 2yrs
> 
> From: "The Shepherds" <shepherds@xxxxxxxxxxxxx>
> Date: 2006/02/27 Mon PM 08:44:19 EST
> To: <tri-med@xxxxxxxxxxxxx>
> Subject: [tri-med] Re: Slow weight gain
> 
> Bernita
> i wanted to reply sooner but i haven't had the time.  Please be sure to have 
> Payton seen by a GI dr.  Gabby was very difficult to feed when she was born 
> and hadvery slow weight gain.  She had such a difficult time sucking on a 
> bottle and cried constantly, (just ask anyone who was at the conference in 
> Pittsburgh.)  It wasn't until she was nearly 8 weeks old and had barely 
> gained any weight that we found out about her peaked palate.  She couldn't 
> suck no matter how hard she tried and to do it exhausted her.  it turned out 
> that gabby had severe reflux.  and never once did it show up on a test.  it 
> used to take us over an hour to get 1 ounce into gabby with a regular bottle 
> but once we found the Habermann Feeder it helped immensly.
> if i can be of anymore help please feel free to email me.
> 
> 
> 
> Shannon
> mom to Gabby Pt13, 8 years, Sumer, 12 years old (need i say more) Justin and 
> Nick 2 1/2 year old twins ( i repeat...need i say more?) step mom to Audrey 
> 21, Eric 19, nanashan to Liam 6 months. and wife to Paul....(god love him 
> for putting up with us all.)
> 
> ----- Original Message ----- 
> From: "Gary and Bernita" <g.savage@xxxxxxxxx>
> To: <tri-med@xxxxxxxxxxxxx>
> Sent: Monday, February 20, 2006 10:00 AM
> Subject: [tri-med] Slow weight gain
> 
> 
> We went to visit Payton yesterday.  I hadn't seen here in a week and a half. 
> She looked so tired.  She hasn't been sleeping good at all for the past 3-4 
> days.  Renee said she cried all day Saturday and there was nothing they 
> could do to make her happy.  She will only drink about 1 1/2 ounces of 
> formula at a time.  If you  try to get her to eat more than that she will 
> leave the nipple in her mouth but just let the milk run out the side.  Then 
> she will take more in about half an hour or so.  But still only about 2 -3 
> ounces every 4 hours.  She is 9 weeks now and weighs 7 1/2 pounds.  But that 
> is what she weighed 2 weeks ago, so she hasn't gained any weight for 2 
> weeks.  She was pale and had dark circles under her eyes.  I really think 
> she is having pain somewhere because she wakes herself from a sleep with a 
> screaming cry.  She is taking cereal at night.  That started making her 
> constipated so the doctor said to add prune juice to her milk during the 
> day.  They are using regul
>  ar prune juice, not baby, because they said that is what the doctor said. 
> Even with that it seem painful for her to go.  I will say that once she did 
> have a bm yesterday she was able to sleep for over an hour and seemed more 
> her old self.  Does any of this make sense you?  I am worried about her.  I 
> haven't said anything to the kids because I don't want to alarm them.  After 
> Gary and I left I asked him what he thought when he first say Payton 
> yesterday and he said he just thought that she didn't even look like the 
> same baby.  There is so much stress on her face.  This sound weird but she 
> looked like a old person. You know, the color of her face, the way she had 
> deep frowns.
> Any suggestions?  Is this all part of the up and down of tri, or could there 
> be a problem with her digestive tract?   Help please.
> 
> Bernita, Grandma to Payton born December 8, 2005 Trisomy 13
> 
> Where there is great love, there are always miracles.
> 
> -Willa Cather
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
> 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
> 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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