Saturday, September 20, 2014

Stories and Support

As you all know, my baby girl Lilah is going to required open heart surgery to repair her VSD ( Ventricular Septal Defect). I have been told over and over that it is a very common surgery and no big deal. Of course as a mother it is a huge deal to me. The thought of my baby having her chest cut open kills me. I am reaching out to all my blog followers and friends. If you or someone you know of has had this procedure on your child, please comment or email below. I could really use support and hearing other success stories of newborns going through this procedure might help calm my nerves.


If you would prefer to email me verses commenting on here, my email address is tonisharapp@yahoo.com.

Thank you.


11 comments:

  1. Gosh. Wish I knew someone. Sending you lots of love.

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  2. Both daughters of my friend had it and they are fine now. It happened 24 and 16 years ago. They had to fly from their country to the UK at that time. Now, medicine is much better, esp in the USA.

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  3. Downwithjax.com

    Sweet little guy who had to go through a similar surgery. Praying for your little lady!

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  4. Praying for your little girl. Please keep us posted when her surgery is planned for.

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  5. Long time reader of your blog, but I have never gotten in the habit of commenting. I wish I had some calming words about surgery- my daughter didn't have the surgery but she did have that condition. She was a preemie and had both a VSD and a hole in the top portion of her heart that didn't close like it was supposed to after birth, an ASD. Hers caused a murmur and she ended up being monitored closely since the size didn't initially indicate surgery was required. I don't know if this will help you at all (I would have had a hard time with the surgery part too- I worried for a long time about it while she was monitored) but I did learn that VSDs are very common as far as congenital defects go and most cardiologists seemed to be very familiar with treating them. I wish I could offer you more reassurance! I struggled for a long time with the diagnosis and it caused me a lot of worry too, but it did end up helping when I realized it was a common thing to treat. I'm so sorry you are dealing with this; I will be thinking about you and your sweet girls in the upcoming weeks.

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  6. Wishing calm and healing wished your way!

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  7. My niece had open heart surgery shortly after birth for the same issue. Email me if you want to talk about it with me or my sister. XOX (mlwalker0909@gmail.com)

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  8. Hi Tonisha, My first son had a much more serious heart defect, and from what I learned doing reading before his birth is that hospitals have very different success and skill rates with infant heart surgery, and that it is worth finding out where yours stands (I think US News and World reports does some rankings, among other sources), how frequently the specific surgeon does this procedure, etc, and if necessary, transfer to a better hospital. This is specialized enough that many hospitals shouldn't be doing it, since skill in both surgery and follow up care is very important.
    I'm part of the Infertility facebook group if you want to talk any more about this.
    Christa B

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  9. I'm so glad you are reaching out to people. I have heard of this through reading many blogs, but I can't remember who they were. What I can tell you is that in each scenario, it was a success.

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  10. T - I'm so far behind on blog reading, so I hope you still see this. I had this surgery to correct the hole in my heart and irregular beat. I actually don't have much to offer you, since I was less than a year old when they did it and my parents never told me much about it. I was a preemie, so I don't think they had to wait for me to gain weight or anything. However, this was 26 years ago, and I know surgery technology has advanced lightyears in that time. I'm sure it's much safer and easier these days than it was back then. Also - I was a DII volleyball player and athlete my entire life. It never slowed me down. Lilah will do great!

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  11. Thank you so much for sharing your story with me!

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