Community Discussion Forum Parent support Breastfeeding and PKU Reply To: Breastfeeding and PKU

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HOnestly, those first few weeks are a lot of guess work and it takes the nutritionist and metabolic doctor a bit of time to figure out what the exact phe tolerance is.  Molly's levels took a few weeks to get stabilized when she was first diagnosed.  Choosing to breastfeed, pump or go with formula is a personal choice and if breastfeeding is too nerve racking and pumping is too difficult, then do what you need to do.  If you decide to stop right now because the levels are not stable, consider pumping to maintain your milk supply in case you change your mind once levels come under control.  Know that the first few months are the hardest because you are dealing with so much and everything is so overwhelming.  I would never say that things get easy, but they do get a lot easier as time goes by.  You do not spend every moment worrying.  All I wanted that first year was to fast forward and know that Molly was going to be okay, then rewind and enjoy her.  Seeing as time machines have not yet been invented, I was out of luck.  I am going to send you the link to the fast forward I wanted and maybe it will help.  Molly is 9 and is at the top of her class.  She has an incredible sense of humor and is an absolute pain in my butt, just like any other 9 year old girl.

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