[tri-med] considering a g-tube

Our daughter has full trisomy 18 and is 9 months old. She has been bottle 
fed since her 3rd day of life and while she has gained weight slowly, she 
has been doing OK. She was born weighing 3 pounds 4 ounces and now weighs 
7 pounds 4 ounces. She recently had pneumonia and we placed a nasogastric 
tube in for a week to help her get nutrition while she was too weak to eat 
sufficiently. While the tube feedings went well, she was miserable with 
the tube in (she pulled it out twice and after the second time, we didn't 
replace it as it took the nurse 4 tries to get it in right) and it was 
quite overwhelming for our family (we have an 8 year old and a 5 year old) 
and our nanny. So, we have decided to consider a g-tube for her, to 
provide night feedings and for feeding when she is too sick to eat 
normally. Otherwise, we intend to continue to bottle feed and provide some 
solids (cereal and fruits) as much as possible. She does have the typical 
heart defects so surgery (even with conscious sedation) is a risk. Our 
pediatrician has been recommending this since the very beginning, yet 
cannot give us any "guarantees" on what weight gain we might expect. We're 
trying to get some perspective from other parents who have made this 
decision. What are the pros and cons you've seen? Would you do it again, 
given the chance? Our goals for Claire have been to provide comfort care 
and make her as much a part of the family as possible, so we're not 
interested in extraordinary measures for Claire, but want to be sure that 
we're making educated decisions about her care.

Thanks!

(You can check out Claire at www.diceccofamily.com...click on Claire and 
then her journal to read more about her.)

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

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