Posted by NICOLE
on 1/11/2012, 12:38 pm, in reply to "Re: Failure to gain weight"
98.181.58.181
HI MY NAME IS NICOLE. MY SON was born with Pierre robin and a cleft palate. It was a sever case. The doctors decided to give him a surgery called a nissen.. to prevent him from having acid reflux because he was Trached 1 hour after birth.... We tried the bottle feeding for shot 2 months. It was also unsuccessful. So they decided to give him a g- bottom ..... This is a.tube placed through the stomach.it looks just like it sounds.. it is placed on one side of the belly button and for me it was the only decision . He was unable so suck the bottle that well either ... Maybe u should bring this up with the doctors.... It sounds scary but u would know that the baby is definetly eating because you feed them directly through this tube. You would not have to worry about the baby aspirating any milk.( milk getting into the lungs because of the breathing issues.) I hope this information helps your family. It definetly helped my son he is now 5 and is trach qnd g button free.
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: Hi Mimi,
: I am so sorry to hear about your story. My
: daughter was in the similar situation when
: she was born in April 2011. You need to get
: to an ENT doctor to look at his breathing
: issues. In my experience if you solve the
: breathing issues then the eating stuff will
: automatically follow. My daughter ended up
: having something called glossopexy surgery.
: Please look into this it really helped her.
: She is now 8 months old and thriving!! Best
: of luck to you and your grandson!
:
: --Previous Message--
: I take care of my grandson who is 8 weeks
: and
: has Pierre Robin Sequence. It is difficult
: for him to eat, breathe, and sleep. We are
: using a Haberman nipple. He has gone from
: 15 percentile to 1 percentile. This past
: week he gained zero. We are seeing a
: nutritionalist and speech pathologist in two
: days, then the surgeons on the cleft team.
: We are adding formula powder to the breast
: milk. Still he will not eat more than 2-3
: oz. per feeding. He falls alseep and spits
: up if you try to wake him and feed him. I am
: so worried that I am watching my grandson
: slowly die. I am so upset. He is adorable.
: I feel so helpless.
:
: Mimi
:
: he needs to be on a feeding tube
:
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