Pierre Robin Network Message Central: Failure to gain weight

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Failure to gain weight

Posted by Mimi on 12/13/2011, 9:05 pm
98.122.167.142

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

Message Thread

Failure to gain weight - Mimi 12/13/2011, 9:05 pm
- INFORMATION AND ADVICE - IAN KORENG 7/18/2012, 4:48 pm
- Re: Failure to gain weight - gabriela 3/4/2012, 9:51 pm
- Re: Failure to gain weight - Sasha 12/15/2011, 7:30 pm
  - Re: Failure to gain weight - diann 12/28/2011, 10:26 pm
    - Re: Failure to gain weight - diann 12/28/2011, 10:30 pm
      - Re: Failure to gain weight - NICOLE 1/11/2012, 12:38 pm
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--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 :

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