PKU.com Community Discussion Forum Parent support Medela SNS tips

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  • #7726
    Avatar of Sarah
    HappyMom
    Member

    Hello all,
    I just had my second baby October 30th. Jaclyn is a beautiful baby girl and just like big brother Easton she has PKU. I’m attempting to use the Medela SNS system and am finding it to be challenging. Has anyone else used this to supplement formula while nursing? Any tips? Thanks.
    Sarah

    #7727
    Avatar of Breanna
    BreaMarie91
    Member

    Hi Sarah,
    I don’t know if I told you but Genavieve was born (four months ago!) and she does have PKU. My mom used the Supplemental Nursing System with Erica, but Gena didn’t like it so she is just breastfeeding and bottle feeding her the formula. If you want to talk to my mom about the SNS I could give you her email address because she did it with Erica for almost 9 months! Take care! nBreanna

    #7728
    Avatar of Sarah
    HappyMom
    Member

    Thanks Brea. That would be great if you could give me your mom’s email address. nAnother question for you since we both go to the Milwaukee clinic. Have you ever had issues getting a level back from the state lab? I am having the worst time getting a Phe level from the state lab for my kids. I have not gotten a level for Easton since August. Everytime we send in a blood sample the state lab says there is something wrong with it. This last time they said there was insufficiant blood which is not possible. We used the PKU lancets given to us by Bridget and used the capillary tube to collect the blood and place it on the card. It was totally soaked through, the whole circle. Jason and I never had this problem with the lab in Minnesota. We are both so frustrated we’re ready to quite using the Milwaukee clinic and drive to Minneapolis. nCongrats on your new baby sister!
    Sarah

Viewing 3 posts - 1 through 3 (of 3 total)
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