Thursday, October 8, 2015

Caleb's craniosynostosis diagnosis

When I was pregnant with Caleb, I had a feeling that things wouldn't be "normal" for him.  I couldn't shake it and just prayed for peace and to be accepting of God's will for Caleb.

His head was kind of pointy when he was born.  I didn't think much of it and figured it was birth canal related.  I nonchalantly mentioned it at his one week check up and our pediatrician said we could keep an eye on it. I watched it and would look at his head.  He wouldn't lay on the back of his head, he mostly looked to the left, sometimes to the right. Caleb's head had (has) a raised bump, a ridge, on the top.  I would run my fingers over it while he was nursing or laying in my arms.  I knew it wasn't "normal", but I suppose I wasn't even completely sure it was abnormal! Also, as an informative side note: He had (has) a normal sized soft spot.

I searched, only once, "abnormal shaped head in infants" and craniosynostosis came up.  But the sites I saw had babies with larger foreheads, nothing too pointy in the back. I wouldn't let myself think too much into it.  I randomly saw things about craniosynostosis several times after I looked into it. I would daily, sometimes several times a day, pray that God would give me the strength to choose faith over fear.

I would choose to randomly bring up his head shape in conversation so no one looked at him funny or started asking questions.  Usually no one noticed as much as I did.  But his head was a weird shape -- surely I wasn't the only one to see it!

After a couple of weeks, I asked a friend about helmets since she had one for her son.  I figured a couple of months in a helmet would help his head reshape.  She mentioned her son having a scan to make sure it wasn't anything more and it made her feel a lot better knowing.

Yes. Of course.  That's a great idea.  A quick scan to make sure it's just from the birth canal and off to get a helmet.  Good call.

So I called the doctor on a Monday morning and left a message. "Caleb's head is still pointy and I would like you to look at it.  Or you can get him an x-ray to make sure. Either way."  They called me back at 1pm and got me an appointment at 3:40pm.  As it turns out, it's after FOUR babies that you can call and leave messages and they hear you out asap! :)

I walked into the appointment already a little overwhelmed.  I picked up the boys from school, a friend met me at the doctors office to take them, Elise was still tired from me waking her up to get the boys, Caleb was just quiet - per usual {and only 3 1/2 weeks old. haha}.  The doctor comes in, looks at his head and says, "Okay. This is craniosynostosis.  I'll take some pictures and text them to my friend in Fort Worth.  He is a pediatric neurosurgeon that I'll refer you to for the next step." I remember asking if this was common and he looked at me like I had one eye and said, "No. I have had two other cases in the last ten years."  He said words like surgery, helmets, Fort Worth, "He's a great doctor and surgeon."  All things I suppose made enough sense to retain, but nothing settled enough to ask questions.

Just like that.  A quick rush of all the things and all the feelings.  A force felt deep within, but nothing could come out of me except: what does my baby need and how can I best love and care for all of my people?

I called and texted Patrick.  I texted my closest friends.  I sat in my car, overwhelmed by information so unexpected.  Information that was so serious, information that was directly related to my baby.  And information that told me, for better or for worse, my baby was not physically perfect and needed surgery.

Before we could get appointments and an "official" diagnosis, we needed an X-ray.  I'll save that for an entry different post.  I do hope sharing all of this journey helps keep you informed and up to date.  But i mostly pray it helps others in situations like ours!

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