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Subject:
From:
Tina Boyce <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Sun, 25 Aug 2013 21:03:21 -0700
Content-Type:
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text/plain (98 lines)
Jean, it sounds like you are doing a great job at the balancing act. These
babies with gut and cardiac issues are really difficult to manage
appropriate growth in. It may be that the formula being added to his EBM is
causing some distress. I don't know that there is a better choice weighing
the pros and cons. I would be very interested if you find something. I know
there are people that make custom mixes to increase the calorie count of
their EBM by adding more hind milk, etc. I don't know where they are doing
this, but did hear about it in my breastfeeding class series. You might be
able to get some info from Sharp Mary Birch Hospital NICU in San Diego, CA.
The are extremely pro-breastmilk. I don't know what they do at Rainbow
Children's Hospital which is closer to you, and has an excellant
reputation. It is absolutely wonderful that your grandaughter has been able
to do some breastfeeding. She is to be commended for working so hard at
this. It will be easier when he gets his G-tube and then again when he
loses the colostomy. This is a very time-consuming challenge for her. Yes,
I understand the disapproval from the visiting nurse for mom doing the
experiment. But, she is the mother, and it is interesting to note that he
did better. Right now the just want to get him to gain weight so they can
continue with his repair.She shoould be so proud and enjoy the
breastfeeding she can do. Cardiacs don't have a lot of energy and are
nortoriously poor nipplers at breast and bottle. She is giving him the best
she can, and it will make a difference. I have noticed consistentlh that
babies with higher calorie feedings tend to be very gassy, and their stools
are stinky. I'll let you know if I find out anything helpful to pass on to
you. Tina

On Sunday, August 25, 2013, K. Jean Cotterman wrote:

> 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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