Diagnosis

Violet was diagnosed yesterday with unilateral coronal craniosynostosis. A CT scan showed that the bones on the left side of her skull have fused prematurely. Left untreated, her brain won’t have room to grow, and developmental issues will occur. Surgery is the next step and will occur in August. A cranio-facial surgeon and neurosurgeon will separate the fused bones and remove a chunk of skull to give her brain room to continue growing. She’ll spend 3-5 days in the hospital. Obviously we are very upset and reeling from this news. It’s unbearable to think about sending my child off to an operating room to undergo a complex surgery. We have read that her head will swell tremendously and that the 48 hours after surgery can be difficult. I am just devastated.

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11 responses

  1. I am so, so sorry dear. All four of you will be in my prayers over the next months. I know Violet will come through with flying colors, and you and your DH will continue to be the amazing, strong parents that you have been all along.

  2. I am so sorry to read this Em.:( At least we live in a time and place where a surgery like this is possible. Hang in there – you have lots of people praying for your little girl and cheering her on!

  3. I will be sending lots of positive energy your way for a smooth surgery and recovery. I am thankful that you and your doctors caught it early so that it won’t cause developmental issues down the road.

  4. I’ve kept up with your CCRM blogs, as I was a few months behind you with a CCRM IVF pregnancy. We had a long-awaited little boy last November. So sorry about the latest news (and all of the other challenges). Your little miracles are overcomers for sure. I’ll be praying that her surgery goes well & that you and your husband have peace when trusting your precious girl into the hands of doctors. So tough & I’m so sorry!

  5. I am so sorry that this was the diagnosis for your beautiful little girl. Having been through watching our children go through brain surgeries (they have had 12 brain surgeries between them–not the same kind as what your daughter will experience, though), I can imagine some of the gut wrenching thoughts you might be going through. If you ever just want someone who can somewhat relate, please feel free to contact me. hee.eee.resto.rkey (at) gmail (dot) com (just remove the periods)

    Thinking of you and sending strength.

  6. I’m so so sorry. I know this is certainly not what you want to be facing.
    But I will say this: you have been an amazing mother to them with their special needs already and I know you will just step right up to do this to, but it still stinks royally to have to go through all of this.

  7. Michele, A simple comment on a blog does not do justice for the overwhelming feelings I have for what you, Kyle, Violet and Layla are enduring. I actually read your post days ago and just did not know what to say. So, I’m back, and I still don’t what to say except I love y’all. You can be assured that I will take your concerns to our Father in prayer each and every day. Michael was put to sleep when he was ten months old at Children’s Mercy and, like you said, there is just nothing easy about it. You are a rock, it’s so very clear. Kyle and the girls are so very blessed to have you. I just stamped an envelope to send your way and will stick it in the mail tomorrow morning. You are loved. AE

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