Friday, July 27, 2012

Craniosynostosis - wait, what?!


I remember the first time I read about craniosynostosis.  I came across it while googling a "prominent ridge down a baby's forehead."  Wikipedia just didn't know what it was talking about, there is no way Lincoln was going to need surgery to fix this bump on his forehead.  I would try to reword my google search hoping that my new search would reveal "just kidding, your baby is perfect!"  After all, I did order a healthy baby, just like I had ordered an easy pregnancy and delivery. . haha!  Obviously, I never got the answer I was looking for from google.  Looking back, I am so happy I followed my mommy intuition and got his head checked out.

When Lincoln was two months old I noticed a ridge down his forehead.  It was barely there, only visible in certain lights, but I could feel it when running my fingers across his little face.  I didn't think too much of it until the top of his head starting coming to a point.  His pediatrician said it was just a "prominent metopic ridge" and it would fade over time.  As much as I wanted to believe this I just couldn't let it go.  We ended up ordering an x-ray and it was read as normal.  A couple more months passed by and it still was getting worse.  Everywhere we went I would evaluate other baby heads, comparing them to Lincoln's.  I finally decided to email Dr. Kevin Kelly at Vanderbilt Children's Hospital and he got us in that week for an evaluation.  Lincoln got a 3d cat scan and it showed that his metopic suture was closed but his other sutures were still open.  He decided that we would wait three months and have a follow up appointment to see how his head was growing.  On one hand, I felt a sense of relief that Lincoln was finally getting the care he needed.... on the other I felt extremely helpless.  The next three months were torture.  There was this little feeling in my stomach that never went away, reminding me that Lincoln may need this surgery.  At his next appointment, Dr. Kelly was not happy with his head growth and decided that it would be best for him to have the surgery.  My inital reaction was shock....and I hate to admit that I had a little breakdown right there in the office.   I knew this was a strong possibility but I guess it never really felt real until that moment.



Since getting the news we have actually been enjoying life and trying to stay positive!  98% of babies who have this surgery do great.  We have total trust in Dr. Kelly's team and that is a wonderful feeling.  So many families who have been through this have reached out to us and it has really helped.  Everyone says that these kids bounce back so quickly.  I wish I could say that after hearing all of these positive stories that I am not worried at all.  Sadly, that is not the case!  I don't want Lincoln to change at all.  I love everything about him, even that ridge!  From the moment I heard his little cry, life has totally changed.  He has made me look at everything so differently and I would be completely lost without him now.  I love his one of a kind personality and I am terrified that is going to change after the surgery or that he is going to look like a totally different baby.  There are also feelings of guilt.  I can just picture us on the way to the hospital, him in his carseat all smiley and trying to sing along to the radio with no idea what is about to happen.  It is just the worst feeling in the world.  I am so ready to get this behind us and be "on the other side."

I wanted to start this blog for a few reasons.  I want to be able to keep everyone updated on how Lincoln is doing throughout his hospital stay and recovery at home.  Also, I am hoping this blog is going to be therapeutic for me!  And most importantly, I hope that someday there is a mom out there who finds this helpful for when her child is preparing for surgery.

Lincoln turned one on July 28 and is scheduled for surgery July 31 at noon.  We were told surgery would take anywhere from 4-7 hours.  We will be in the PICU for the first 48 hours after surgery and in the hospital for about a week.  Logan and I are so blessed to have such an amazing group of family and friends.  I know Lincoln has so many people praying for him.  I know God is going to be in that operating room keeping Lincoln safe.  I know God is going to be in the waiting room keeping us strong.  Thank you for caring about our sweet little boy and for all of your love and support!! 

http://en.wikipedia.org/wiki/Craniosynostosis


13 comments:

  1. Tons of prayers are headed your way!! After all, I started them a LONG time ago to make sure they were there on time!! Love you all tons! :) Gretchen

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  2. LOTS of prayers for all of you and the doctors and nurses. Everything will be fine. Your concern is just proof that you are truly a loving and caring mother. I look forward to reading more!

    Hang in there momma!
    Katie

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  3. Praying for u guys and baby Lincoln!! Keep your chin up(: if u need anything let me know!!

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  4. Have been...and will be...thinking about you all. Jordan and Rochelle Freed

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  5. Great idea Jill, glad we can all keep up with Lincoln's progress here. You all are loved and supported by many, and Lincoln will be wrapped in love and light throughout the procedure and his recovery. Love you!

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  6. My son had this same surgery 5 years ago and he is a handsome, smart first grader now!!! Best wishes....your lil guy is going to be just fine!!

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  7. Jill, I will be praying for Lincoln, you, and your family especially tomorrow as surgery begins. I know that God is watching over you and will guide the hands of all the medical staff that will come in contact with Lincoln. I can only imagine how you feel, but I pray that you will have peace that you are in good hands. If you need anything, you can call me. I will be at work tomorrow...
    Lots of love, Angela

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  8. Will be checking this continuously! Setting up this blog is a wonderful example of your compassion for others. Thanks for taking the time to update everyone in the face of your challenges. Our prayers are with your beautiful boy and the team caring for him.

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  9. wishing you the best of luck as I'm sure Lincoln will be just fine soon!

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  10. Jill and Logan, I have been praying for little Lincoln, his surgeon, and his loving parents today...and will continue to do so. He is in wonderful hands with Dr. Kelly at Vanderbilt Children's.
    Meghan

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  11. So I have just cried my eyes out... Jill I have not had the honor of meeting you YET but Logan was and is my Nashville family... I have no doubt yall's love and strength will get you to the other side... I know distance and life has kept us from being around but KNOW that me and my family are here 100% for the Mize family and will do anything for you!!! We love ya'll so much!!!

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  12. Hello, Mize Family. Jill, I posted this on Logan's fan page and wanted to share it with you, too. God bless...

    Hey, Logan and Jill...I can't tell you enough how much I and all of my co-workers at 100.5 The Wolf are praying for the two of you and Lincoln! Having a 2 year old son of my own, I know how hard it can be to see them experience the slightest bit of pain or discomfort. Lincoln is such a handsome little boy...I remember how he brought a glow to the room at the Wolf Birthday party. If he has even a fraction of the strength that his parents do (and I don't doubt in the slightest that he does), I know God will bring him through this situation and back to the normal life of a toddler. We will all continue praying for your wonderful family and that sweet little boy...God bless you all!.

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  13. Logan and Jill,
    I found your blog just by chance of a facebook link from a friend's page. I started reading your son's story and stopped when you posted Lincoln's birthdate. My son just turned 4 on July 28th. I have just 5 words for you-YOU ARE IN FOR IT! Your son will be fine. He is a fighter, probably ornery as can be and nothing will keep him down for long. As a mother of one of these I wish you much patience as Lincoln lives his long life ahead...you are going to need it!!

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