PTP. My full-term great grandson has left the major teaching hospital NICU and stepdown unit that he was taken to right after birth. He has finally been able to come home for a while, at 6 weeks of age. He and his daddy and mommy (my youngest granddaughter) are staying with my daughter at her home (in another state). He has serious multiple birth defects, including absence of his spleen, and has had multiple surgeries thus far, including a colostomy and several heart surgeries. More surgery to come in several weeks, with more at age 1 and age 3. 


Docs say cardiac problems must be the reason he failed to gain past his BW by 4-5 weeks despite sometimes hourly EBM feedings by NG tube (between surgeries). He has severe oral aversion from all the time he spent on a ventilator. He is currently being fed by nasogastric tube which mommy and daddy were taught to insert. Occupational therapy has been involved, and he is now able to take a pacifier, learning to take a bottle, up to 10 cc. now before he apparently gags, and "lick and learn" sessions at the breast with lots of S-to-S. She continues to pump faithfully and seems to have a good supply, and apparently lots in the freezer from the time when he was unable to be fed during the course of his surgeries, etc.


My granddaughter is asking me for suggestions on how she can measure the added powdered formula that she is to add to her EBM so that she doesn't have to discard part of it, because he can apparently only have 70 cc. down the tube every 3 hours or so, and the "recipe" she was given was stated as "1 baker's teaspoon" of a specified brand of powdered formula per 50 cc. of EBM. She has been making up an extra 25 cc. of EBM with half that amount of powdered formula, but she is troubled by having to waste that 5 cc. of EBM (!) (and maybe it's the wasted formula too, as I think she has to pay for it). She states she was told it couldn't be saved past 4 hours.


I want to do all I can to empower her, but I am way out of my league here, and I would like info from anyone with practical experience and any kind of thoughts about this. Please contact me personally through my private e-mail so as not to clog up the list with info not relevant to others on the list. I would also appreciate addresses of web groups of EP moms so she can participate while she is essentially an EP mom.


Thanks for any help.


K. Jean Cotterman RNC-E, IBCLC
WIC Volunteer LC       Dayton OH

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