Well, we had ourselves convinced that she just had a mild ridge and everything would be fine.
We had our appointment with the pediatric plastic surgeon today. He positively identified Baby Girl as having Metopic Synostosis, as we thought. He said that there are severe cases in which the defect is definitely causing major deformities, intracranial pressure, delays, all of the above, etc and surgery is needed immediately. She does not fall into that catergory. He ordered a CT scan to find out more but he is almost sure we will have to have surgery. Not what we wanted to hear.
She has pinching at her temples and her head is bulging above her ears and the back of her skull is widening due to the brain's inability to expand outward at the front. Once he points it out it is obvious. The good news is that her eyes are not too close together so they can leave the ridge above her eye sockets alone.
My head is spinning, I'm scared, I'm confused, I'm wondering what to do, who else to talk to, whether we need a second opinion, whether I should question him, whether my brain is working at all right now. I've been doing all kinds of additional research and found an online forum/message board for families with this diagnosis. I can't even begin to digest the information there tonight. All I know is I looked at the pictures people posted of their children post-op with tears streaming down my face. The realization: Baby Girl will have to have her skull cut apart. The only thing the doctor told us about the surgery (until he has more info from the CT scan) is that she will be in the hospital for three or four days and her eyes will swell shut after the first day.
I know we will get through this. As my mom and MIL both said, at least we are not fighting for her life. But that doesn't mean that this hasn't been a terrible day for us.
Now we wait to hear we have been approved by our insurance for the CT scan.
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Wow...that's a lot to digest. The grandmas are right--she's not fighting for her life, and that is a blessing. But it probably still doesn't make it any easier. I'm praying for peace and clarity for you, and for Baby Girl as well. (And remember, I'm right down the road if you need anything.)
ReplyDeleteI'm so sorry. :-( I know this is so scary and there is so much information for you to sort through. I'm praying for you and Baby Girl!
ReplyDeletePraying for you girl!!
ReplyDeleteThis is so much to process right now for you family. I know this is scary, but I also know what a rock star mom you are and how you will be able to handle this. I'll be saying some prayers for your little lady!
ReplyDeletePoor BG and poor you! How awful! I'll be thinking about you guys, I can't imagine.
ReplyDelete((HUGS)) I'm so sorry you are dealing with such difficult news. I hope the CT comes back with good news. I can't imagine what you're feeling right now, but know that we're all sending you strength right now.
ReplyDeleteThis has got to be so tough with everything going on in your life right now. Sending my hugs and prayers your direction.
ReplyDeleteI am sick thinking about your situation. I am sorry you have this on your plate. I can't give you much, but know that you and your family and the little peanut are in my thoughts. Keep us posted.
ReplyDeleteI'm sorry the news wasn't better. I really hope that you all get through this as easily as possible. The mom of the little boy that goes to our church said that sometimes when he was playing he'd stop and grab his head like he was in pain, so even though it was hard to put him through the surgery she knew she needed to do it. And the scar from the surgery is very large. He had a zig-zag pattern, but when his hair grew back you couldn't see it, thankfully.
ReplyDeleteIt's never a bad idea to get a second opinion if it would make you feel better. I hope some of the online boards you are visiting can help you. It's always nice to hear from others that are going through the same things.
Oh, Jill...I wish I was there to hug you. I hate that your sweet baby girl is having to deal with this. Sending love and strength and prayers your way, my friend.
ReplyDeleteI'm so sorry Jill... I was really hoping that your update would say that Baby Girl didn't need surgery. I'm hoping that the CT scan goes really well... Praying for all of you...
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