Micah’s Journey with Craniosynostosis: We’re on the other side!

It’s been several months since I updated my blog with Micah’s progress. (Check out my previous 4 posts to start from the beginning.) I have been diligent with keeping our friends and prayer warriors in the loop on Facebook, but there is a whole group of concerned parents who are facing a cranio diagnosis who will stumble across my blog and could possibly be encouraged by Micah’s amazing progress, so here it goes!

Surgery Week

On February 26th, we brought our sweet almost 4 month old in to have a major reconstructive surgery called CVR (cranial vault reconstruction) that would allow his brain room to grow properly as he ages. It was one of the hardest days of my life, though we felt the prayers of hundreds of people that morning. We handed him over to the surgeons with a peace that he would be okay, and that this was just something that Micah was going to have to go through. Soon, we would all be on the other side.

Pre-op. Getting Micah out of his street clothes. Notice the awesome military do! No neurosurgeon was getting rights to our son's first haircut!

Pre-op. Getting Micah out of his street clothes. Notice the awesome military do! No neurosurgeon was getting rights to our son’s first haircut!

Halfway through the surgery, we were called back with a progress report: Micah’s neurosurgeon, Dr. Wellons, had discovered that the dura (protective lining) of Micah’s brain near the fused area had started to erode a bit and some blood vessels were damaged. The inside of his skull had also begun wearing away near his sagittal suture. Though Micah required a transfusion of Nate’s blood at this point because he lost quite a bit, neither of these issues have lasting consequences. For us, Dr. Wellons’ findings only solidified for us that we had made the right decision to have his operation when we did rather than waiting. The rest of the 2 1/2 hour surgery went without incident, and before we knew it, Micah was in recovery!

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.

Micah’s Journey with Craniosynostosis: Surgery May Be Avoided!

Great News!

Today was a big day for us… We had an appointment with Micah’s surgeon, Dr. Kelly at Vanderbilt. We weren’t supposed to meet with him again until after Micah’s CT scan on January 3rd, but since we’ve seen such a huge improvement in Micah’s head shape over the past 8 weeks, we felt it was wise to meet with Dr. Kelly again before proceeding with the scan and surgery. If you want to read Micah’s story from the beginning, check out my previous post. A little background so you that those reading this will understand the gravity of the great news we heard today: Sagittal Craniosynostosis ALWAYS requires surgery to correct… at least what you’ll read on any reputable website telling about the condition. It’s just the standard, accepted method of making sure that a child with it will grow normally and without complication.

Chiropractic for Craniosynostosis? Really?

Enter my in-laws. They are dedicated and immensely knowledgeable chiropractors who just happen to love Micah very much. As soon as they learned of his condition, they began researching to see if there was anything they could do to help our little guy, and they found two rather obscure case studies on children with Craniosynostosis who had been helped with chiropractic (buried beneath all of the negative things people have to say about the alternative methods chiropractors use, mind you). Now, I tend to lean toward the natural more than the average person, and I’ve seen a chiropractor since I was 13 months old (when my colic was cured by one), but when Nate’s parents approached us about trying to avoid surgery by doing gentle maneuvers on Micah’s skull, I reacted internally like a mama bear. My thoughts were that we are NOT going against the grain on this! If he needs surgery to correct his skull, he’s going to get it! He’s my son! I realize now that this reaction was hormonally driven. I’d just gone through nearly a day of being in labor and then faced with this news that Micah needed medical attention, and I wasn’t in a good place to receive it. When I found out that the maneuvers were gentle and couldn’t possibly hurt him, I thought, well… at least it may be able to give his little brain a little more space to move around in the interim before surgery. So, with that, they began treating him three times a week for 10-30 minutes per session. We saw measurable results after the FIRST treatment.

Meeting Micah: The Beginning of Our Journey with Craniosynostosis

Meet Micah!

We are now a family of four! Micah Carter Bailey came into the world on Thursday, November 1st at 2:56 am. He was 7 pounds, 12 ounces and 21 inches long. I was in labor about 21 hours, if you don’t count the 40+ hours of false or “pre labor” that my body thought it needed to tease us with before delivery day. Micah was comfy… What can I say? His delivery was natural and free of interventions: beautiful and redeeming after our labor experience with Juliet. Nate and I both got to pull him out into the world together and Nate cut the cord! If you’re interested in reading my whole birth story, just let me know and I’ll send it to you.

Photo of Micah

Photo by www.shehewe.com

We are so in love with this sweet, cuddly, good-natured little human being, and we are in awe of God’s perfect design. His fingerprints are all over this one… From the tiny forehead wrinkles to his adorable little belly button.

Part of the reason for this post is to simply introduce this tiny wonder to you. The other is to allow you to be part of the journey we are about to embark on with Micah. On his second day of life, our pediatrician diagnosed him with Sagittal Craniosynostosis. That’s a fancy way of saying that 2 of the bones in his skull (the parietal bones on top) fused in the womb prematurely. They are supposed to remain independent of each other until he’s about  two years old. Because of this fusion, his brain is being forced to grow in an unnatural way. So his little forehead and the back of his head protrude out more and his head is sort of elongated front to back.

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