Hi everyone,
It's Heather again with more questions regarding this Hagan feeding
issue and the donor milk. Sorry to keep posting with my own problems but I hope
the feedback will also be useful to the list.
The nutritionist has come back to us with the RDA/DRI for children
Hagan's age as well as a breakdown of the nutritional components for our plan
(organic soy toddler formula combined with donor breastmilk) vs. her plan
(prescription formula for 1-10 year olds but no breastmilk). Neither plan includes
the table food Hagan eats each day (approx. 300 additional calories). This is
just a breakdown about the tube feedings.
Her numbers show that our plan fails to meet the RDA/DRI for 8
nutritional components, though 4 of these are more than 90% met and we know they are
being fulfilled when the table/oral food is taken into account. The remaining
4 I need a little help with. Here is how they stand up by our plan of 360
calories formula and 420 calories donor breastmilk: Niacin 82%, Folate 46%,
Vitamin B6 55%, Manganese 35%. The others that are just slightly short like
phosphorus (90%) and iron (93%) are, as far as I understand, better absorbed by
breastfed children. However, the remaining I am not well versed in.
The nutritionist's plan exceeds the RDA by double or triple in most
areas. She has suggested this is good because it leaves for "room to grow." We
are not experts but it seems to us all that really means is "room to poop,"
clog up her colon, and forever change her gut flora. Am I way off base here?
Couldn't we make up the difference with table foods and supplements if needed? My
other children grew on breastmilk, soymilk and table foods without anyone
calculating the exact requirements and "room to grow."
The other piece that should be stated here is that Hagan is not on the
charts. She is at about 0%. This was expected by us since we know she has a
genetic difference. When the diagnosis was Rubenstein-Taybi Syndrome we could
point to short stature and slow growth as a piece of the syndrome. there was
even a special growth chart to follow. Now, with no diagnosis but "orphaned
syndrome," we have to make the assumption that she will grow differently no matter
how much food we pump into her.
Her weight for height is normal, her head is growing with her body,
her muscle and fat are both in the 50% and, as I have said in an earlier post,
she is rarely ill and has never had an infection. Her skin, teeth, hair and
nails all look fantastic (my little green eyed red head).
My feeling is that she doesn't need all the extra stuff in this
pediatric formula and that the donor milk is giving her quite an advantage. Not to
mention the fact that if it is indeed "infant" milk (pumped by moms of
infants), it is higher in fat anyway.
Can anyone provide me more concrete info on the unfulfilled vitamins
and minerals and how they are available/absorbed in breastmilk vs. formula. Is
there something we are missing or are we right on track with our plan. We hope
as we transition off the night drip Hagan will continue to take more table
foods anyway. I would be grateful for any feedback...even if you just think I'm
a nut. Thanks, Heather
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