Jean,
Thought you might want the follow-up to the spherocytosis mom I posted about earlier this month.  Thank-you for your response at that time!  I can't say this mom is glad to know that another mom with the same disease had no problem lactating 4 times.... Her baby is now 3 weeks old.  She has been using a rental pump 'several' times a day, with large flanges.  A pre-post wt. was 10gm.  She breasts as long as baby is interested, about 5 minutes one side (he gets frustrated if she switches sides), than bottlefeeds.  When she pumps she gets 20-30cc.  She started out with pumping after every nursing and using a syringe to supplement during breastfeeds.  I'm not sure when she decreased the frequency and length of stimulation to the above schedule.  When I suggested comfort sucking (she will not use SNS), her response is 'it doesn't make me make more milk and that is what I want'.  She finds no comfort in the fact that he gets 4+ oz. of her milk a day, more than alot of American babies get.  It isn't the way it is supposed to be.  It is still clear that in her eyes this bonding stuff just doesn't make up for her body's betrayal in the manufacturing department....  The real issue is 'where is the milk'? 
Bettina Pearson RN IBCLC

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