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Intro (Heart mom)

GopherBaby13GopherBaby13 member
edited December 2013 in Special Needs
Hi. I'm not sure if we belong here but I'm looking for others that have dealt with aortic stenosis.

My daughter, Camille, was born at 11:53 pm on 11/12/13 and was diagnosed with left aortic stenosis not even 24 hours later as she was not breathing at birth. She had to be transferred to Children's Hospital of Minneapolis the morning after she was born and underwent a balloon catheterization to open up the valve in her left ventricle.

Its been an incredibly emotional and difficult time for my SO and I. We administer three medications, four times a day. A home care nurse comes twice a week. We have, not only appointments with her pediatrician, but with her cardiologist every other week. My SO is amazing and has been my rock but I am still incredibly emotional and pessimistic about the situation. I have been looking for a support group or something similar but I have yet to find anything so I thought I might try here.
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Re: Intro (Heart mom)

  • Assembly_ReqdAssembly_Reqd member
    Welcome! 

    There are a couple of heart mommies who pop in from time to time. I would put either "aortic stenosis" or "heart mommy" in your post title so that they are sure to notice it.

    Try to keep your chin up. You can do this no matter how ill equipped you feel. Many moms here have felt the same way as you. Having your life revolve around a medicine schedule, which acts as a reminder of your child's struggle,really sucks. It's O.K. to be pissed. It's O.K. to be sad. 

    It WILL get better. hugs.
    WAY 2 Cool 4 School


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  • GopherBaby13GopherBaby13 member
    Thank you for your reply and advice. :)
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  • GopherBaby13GopherBaby13 member
    Thank you @Usm123 and @wallace323 for your replies. It's nice to not feel so alone.

    We saw her cardiologist yesterday and her echo hasn't changed since we left Children's almost two weeks ago. The "flappers" in her left ventricle are getting thicker, which he equated to them getting stronger. There is still significant leakage, which will require open heart surgery if it doesn't get better or if her body stops tolerating it. He upped her dosage of her heart med, captopril, to hopefully lower her blood pressure, which may decrease the amount of leakage.

    Hearing him talk about cutting into my beautiful little girls heart just about killed me. As if dealing with her traumatic birth and the aftermath wasn't emotional enough for me.
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