So I had thought Eliza had made some good progress since she ate a few ounces of yogurt and some pureed bananas. I was pretty excited about this development for oh, about 18 hours.
Then I did the math to convert the volume to calories and guess what? She is still only taking in 700 to 800 calories a day, and this is accomplished only with the addition of 330 calories of Benecalorie to her yogurt. This is not the 1000 calories she needs to "maintain" and certainly not the 1200 calories she needs to "grow." No matter what combination of high calorie formula and Benecalorie laden "food" I come up with, she is no where near the caloric intake she needs. If the Benecalori causes her to start vomiting nightly again, then we are back to 400, maybe 600 or so calories per day.
This struggle to get Eliza to eat "normally" has been going on for a year now. Despite all of her therapy for the past year, she has only been able to move from a strict formula diet to the inclusion of a bit of yogurt and some purees, which are of limited nutritional value due to the limited amount she eats. Everyday for the past year Eliza's food and formula have been measured to the quarter ounce and every calorie has been counted (I've even looked to see if her vitamins have any caloric value). Our lives revolve around food and it is becoming apparent that we cannot live like this much longer. Maybe a g-tube would be for the best since it would mean that Eliza could just be a toddler without constantly having a bottle shoved at her, being awoken in the night to get a few more ounces in her or being stuck in a high chair for extended periods of time trying to get her to eat. She could learn to eat in her own time and the focus could be on what she eats, not how much. It is not normal for it to take an hour for a child to eat 2.5 ounces of yogurt, all the while pushing the spoon away or shaking her head and only taking a spoonful here or there when she is not paying attention. So unless there is something to this delayed gastric emptying theory, then I really see no other choice for this child to have something resembling a normal life.
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Anne,
ReplyDeleteThere may be something to this delayed gastric emptying theory. Either the reglan or the billy goat is helping things out in this respect for us. I think it's worth a try if only because, even if Eliza vomits, if she's digesting some more of the food then at least she's getting more of the calories/nutrients.
In any event, it's worth a try.
Anne, you are a remarkable young mother and will do what is right for Eliza Grace. If the G-tube is what is needed to insure a better quality of life for her, you will find the strength to do what must be done.
ReplyDeleteYou need only read back through your words to see what you and Eliza Grace have been through and how far you both have come.
I will still continue to pray for both of you. Remember, you are both loved so very much and by so many people.
Always,
Ida
Anne, you are a remarkable young mother and will do what is right for Eliza Grace. If the G-tube is what is needed to insure a better quality of life for her, you will find the strength to do what must be done.
ReplyDeleteYou need only read back through your words to see what you and Eliza Grace have been through and how far you both have come.
I will still continue to pray for both of you. Remember, you are both loved so very much and by so many people.
Always,
Ida
Oh Anne, it is such a hard decision to make. But you're right about 1 thing for sure, it sucks having food and every little stupid calorie that Eliza eats ruling your life. She does deserve to just be a carefree & happy little girl (and she is). As I've said to others before...trust your gut instinct, it won't dissappoint you. Good luck, we're pulling for you both!
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