Tina writes:

<It would be interesting to see if he reacted the same way when the powder was withheld for a week....I know your granddaughter would probably not be willing to deviate from her instructions to try that experiment, from what you've said. But I suspect it would be the same with and without it, except for the potential weight gain....>

All this is with PTP. Well, as a matter of fact, in telling me about his progress, she told me she did just that . . . . on her own, just decided to give him straight EBM for 5 days or so, and she seems to think his signs of discomfort during the tube feeding were not present. However, when the visiting nurse came and discovered that she had done this on her own, there was a great deal of disapproval (what she says she felt) with the nurse making one or more phone calls to various supervisors, etc. 

This was also during the time they were out of the diuretic that apparently has to be made by a compounding pharmacy, thus resulting in probable fluid retention. Also, I'm not certain what type of scales the nurse has, so all in all, I don't think any changes can be made in the home. They have told her several times that weight gain is often problematic in babies with cardiac problems. 

He re-enters the hospital for testing next week, and I will encourage her to be more specific in her questions. He will have his anuplasty and insertion of abdominal gastric tube, and eventual closure of the colostomy. She does say he is actually doing some nursing at the breast now, and this makes her very happy to have reached that stage. She has worked so hard, and I am glad she is finally getting to sense some of the more normal, rewarding phase of direct breastfeeding.

I hesitate to do more than encourage her to ask questions, as I don't want to end up causing her distress by seeming in any way unsupportive of how she is caring for him, or seeming to be disapproving of his medical care. I am sensing that  Grandma's approval, (especially this LC grandma) is very, very important to her spirits. 

I was just hoping for some personal reassurance for me as to whether it has been proven, in widespread practice, or formal research, that the addition of powdered formula to EBM is without known harm (beyond its effect on gut flora and effect of the iron on normal iron mechanisms of the EBM, that is).

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

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