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sagittal craniosynostosis – one year later

Yesterday my mom reminded me that today is one year since Raeca had her sagittal craniosynostosis corrective surgery. I knew the one year anniversary was coming but didn’t realize how quickly.

I know I’ve explained this before but for those that don’t know, sagittal craniosynostosis is a condition where a baby’s soft spots grow closed too quickly (some babies are born with it closed). It is rarely genetic (if I remember correctly it is only genetic in 1% of all cases) and is common in premature babies.

Raeca’s soft spot began to close early (I think it was already closing at her 6 week check-up). There are two main problems with the soft spot closing too early:

  1. it can cause pressure on the brain (Rae had a CT scan done in May prior to the surgery and this was not the case in her situation)
  2. the head can grow oddly -for Raeca, since her soft spots on the top of her head were closing it was not allowing her head to grow round, just long. This is a photo I took the day before the surgery, it shows how long and narrow her head actually got:

I remember that morning at the hospital, waiting with Jared and Raeca in the operating waiting room. Rae was oblivious and was playing peek-a-boo with a sweet old woman that appeared to have cancer and I was hopeful and trusting, yet still terrified. When a kind nurse came to take Raeca from my arms I held it together until we got to the room where my parents and Jared’s parents were waiting for us, where we would wait for the extent of the surgery, and I broke down.

A few weeks prior to that date I made myself consider the possibility that she might not make it through the surgery. I searched through the Bible and wrote down verse after verse about trust, peace, hope and fear.

So do not fear, for I am with you, do not be dismayed for I am your God. I will strengthen you and help you, I will uphold you with my righteous right hand.
Isaiah 41:10

The Lord is my rock, my fortress and my Savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me and my place of safety.
Psalm 18:2

But when I’m afraid,
I will put my trust in You.
Psalm 56:3

Rejoice in our confident hope. Be patient in trouble, and keep on praying.
Romans 12:12 

Because we are united with Christ, we have received an inheritance from God, for He chose us in advance, and He makes everything work out according to His plan.
Ephesians 1:1 

Thankfully the surgery went incredibly well. She had her surgery on Monday and by Thursday afternoon she was able to go home.

One of the things I didn’t expect was for her to swell up so much -I knew her head would but her entire body did. She pretty much went without clothes in the hospital because she was so swollen her sleepers hardly fit (and we didn’t want to pull any shirts over her head yet).

This was the day after the surgery (so puffy and yet still so cute):

It turns out I was so worried about how the surgery would go that I was completely unprepared for the sleepless weeks after the surgery (and I really do mean sleepless weeks. I mean multiple nights of getting in the vehicle at 2 or 3 am to drive around for an hour in an effort to get Raeca to fall asleep in the carseat, and trying every single trick in the book at least 5 times over).

I am so glad to have that over and done with. And minus Rae’s scar peeping though her hair in a few spots you would never even guess that it happened. Here is a shot of Raeca with my brother the other night, you can see her zigzag scar kind of by her ear, it goes all the way from one ear to the other but once her hair grows in a little more you shouldn’t be able to see it.

I am so thankful that God allowed the surgery to go well and that I have this little girl in my life. A huge thank you to all of those who were praying a year ago.

with love,

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    1. So awesome! I love hearing about older people who have gone through the surgery and are doing great!

  1. Ok. *glasses down, wipes tears, sniffs alot* Wow. What an amazing story. So glad to hear you little girl is doing ok. *Hugs*

  2. She’s simply adorable. Such a tough thing to go through at such a young age, and for you as a mama. Thankfully she’s well, and looks as sweet as can be. 🙂

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