Micah’s Journey with Craniosynostosis: Surgery is Scheduled



The Verdict Is In

If you want to read Micah’s story from the beginning, check out my previous post. On my last update, we had been encouraged by Dr. Kelly, Micah’s surgeon, that Micah may not need surgery based on the fact that his head shape had improved dramatically with the chiropractic treatments that he has received since birth for his craniosynostosis. We went ahead with the scheduled CT scan on January 3rd and met with Dr. Kelly again on the following Monday to go over the results.

There Is Fusion

We discovered that about 2/3 of Micah’s sagittal suture is indeed fused, which means that surgery is necessary to correct it.  The reason we’ve seen great results with the chiropractic is that there was a portion of it that hadn’t fused completely yet (though it seemed to be trying to).  The adjustments from Dr. Roger Bailey allowed his little head to be able to increase in width and give his brain a little more space to grow. We are so thankful for this, and we’ll continue with frequent treatments to give him the best head shape he can possibly have going into surgery. Here’s a nerdy little diagram that will explain sort of what’s going on for those of you who haven’t spent hours of your life researching craniosynostosis:

Micah's sagittal craniosynostosis diagram

When I first saw his CT scan, I cried. Thankfully, we had looked at the images at home before our appointment, so I was able to come to grips with the surgery again instead of getting emotional in the surgeon’s office. I held him and grieved. I know that he’s going to be okay, but I looked down at his sweet little head and didn’t want to think about it being cut open. He seems so tiny and perfect to me. He’s my son… can’t I go through this for him??  Of course, I know that I can’t. All of this has somehow made me love him even more… if that’s even possible. I’m dedicated to this little guy and we’re all going to get through the few months together.

Photo of Micah making bubbles

So, How Are You Doing?

People frequently ask me how I’m doing. I usually say “good,” and some days that is the truth. But, in an effort to be real and transparent, some days I may respond with something less cheery.  The truth is that the last few days, I’ve really been sad… and I’m not prone to sadness. It’s a weird, dark place for me that I don’t like. Right after we scheduled the surgery, I felt huge relief that finally there was a date to work towards… and therefore a date we could say the hardest part will be over.  I still feel that relief.  But with it has come some finality to his situation and the reality that in 6 weeks, a surgeon will be cutting into his innocent, pure skin and making his permanent mark on it. Bones will be removed, shaped, and put back in along with foreign metal screws, wires, and possibly plates. I don’t want this. I want Micah to be whole and well and not need anything to be done to him.

These are days that most parents spend dealing with spit up, nap times, and feeding schedules… not deciding who in your life you trust enough to donate blood for your son’s transfusions, meeting with neurosurgeons, deciding what shape scar you’d like your son to have for the rest of his life, and trying to figure out how the heck to be away from your sweet mommy-loving daughter for a week while you tend to your son.

I’m just sad. And overwhelmed. And thinking that surely there is someone more capable of making the huge decisions that we have been faced with the last few weeks. But, it’s us. This is our responsibility and our lives are filled with such things right now. We are grateful for competent doctors, supportive family, and above all: a God who cares about Micah so much more deeply than we ever could. Fear isn’t the issue: we know he’s going to be okay.

But this sucks. There, I said it.

So if you ask me one day how I’m doing, I may either smile sincerely and really be okay that day, or I might burst into tears. If that’s too big of a risk for you, ask me about Juliet instead.

Ignorance Is Bliss!

Micah, on the other hand, is anything but sad!  He’s become quite the smiler and giggler these days and we just can’t get enough of him. Here’s a couple of my latest favorite pictures of him:

Micah smiling

Milk for dinner?! YUM!

Micah with a monkey on his head

Sometimes we put his paci on his head. :)

 

 

 

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