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!

Craniosynostosis Onesies & T-Shirts For Your Cranio Kid!

Cranio T-Shirts: Are there any awesome and funny ones out there?

Q: What do you get when a mom whose son recently had cranial reconstructive surgery just happens to be a graphic designer? A: Cute Cranio shirts!

Necessity breeds invention (in this case, design). I decided that what was available on the market for Cranio Kids wasn’t expansive enough. My 4 month old son had a CVR (Cranial Vault Reconstruction) last week, and I wanted to be able to lighten up this serious situation with some funny and witty clothes for him post-op.  Micah is bald now and has an 8 inch incision from ear to ear and steri-strips covering it (for now), and I want to be able to take him out and for people realize that we are approachable.  They can ask what happened and we won’t get upset. These designs ought to do the trick! Here’s my cutie:

Micah’s sagittal suture was fused. This photo is him one week after his CVR: Wow!

Three of these designs are now available for purchase from CranioCareBears.org (Forgive My Hair, I’ve Had Work Done, and Perfectly Shaped Heads). Summer will be working on a few more soon, and if you’d like one that isn’t already being offered, you may email her and request it! The proceeds from the sales from Cranio Care Bears go to help fund their awesome care packages. Be sure to request a free care package for your child’s surgery week while you’re there!

My First Cranio Designs (Some work for Plagiocephaly as well)

Check out the mockups of the designs I currently have.  Note: these are mockups only.

Looks great on most dark colored material.

Looks great on any dark colored material.

Looks great on any dark colored material.

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.

FREE $200 Branding Package added to any Logo Design during September!

You may know that last month I offered half off of my custom charcoal portraits.  It was a hit!  I realized how much my friends and fans like a bargain, so I’m running a new promotion during September: FREE business card design, letterhead design, and envelopes with all logo designs.

This is a $200 value, and during September, it will be free! If you do not have a need for the letterhead and envelopes, you can opt instead to have me professionally print and ship 100 of your awesome new business cards to your front door.

See a few examples of branding packages here:

A collection of business card designs and letterheads by Kelly O'Neill

Your business may be just starting out, or it may need a facelift.  Either way, I’ve got you covered!  With your initial input, I use my expertise in both design and marketing to create something incredible for your business that will make you stand out among your competition and attract new clients or customers. See what a difference a professional logo can make!

If you’re on the fence as to whether you need a professional logo or not, please check out What To Know Before Hiring a Logo Designer. It will leave you with no questions, promise! :)

I offer a 100% satisfaction guarantee on the work I do for you, so if for some reason, I’m not able to “WOW” you with a design that you love, you aren’t under obligation to pay. In 11 years of serving clients, however, I’ve never had someone ask for a refund.

See some of my favorite logos that I’ve created for clients here:

Favorite logo designs by Kelly O'Neill - Group 1Favorite logo designs by Kelly O'Neill - Group 2Favorite logo designs by Kelly O'Neill - Group 3

Half-Off of all Custom Charcoal Drawings!

You saw that right: I’m offering an unprecedented HALF-OFF of my custom charcoal portraits through the month of August!

Graphic design clients: I love y’all, I really do. But sometimes a girl HAS to get her studio a little dirty with raw materials.

Now is the time to commission a stunning, love-it-for-a-lifetime charcoal portrait of your children, parents, or even your fluffier family members. Think Christmas gifts! No getting on a waiting list and no exceptions.

Included with your drawing:

  • Free shipping within the U.S. 
  • Two free prints to give to others! 
  • Satisfaction guarantee (Your child shouldn’t look like a Brazilian jungle penguin)

Ready to save?

After reviewing my Pricing page and deciding what you might want to have done, contact me by phone or email and we’ll discuss the rest of your details and get you in on the savings! I look forward to working with you.

Want some FREE cash?

You may know someone else who would enjoy a half-off portrait. Please send them my way! I pay between $50-300 for every portrait referral through my Referral Love Rewards. I’d love for you to spread the word or share this post on your Facebook wall!

Charcoal Portrait of Sadie Claire

Charcoal Portrait of Hannah by Kelly O'Neill

Charcoal Portrait from Photograph Ethan with Reference

The Not-So-Fine Print:

You don’t have to have your reference photos ready right away, but a 30% deposit is due by August 31st in order to secure your half off pricing. You may get the photo(s) to me anytime in September. I will accept as many commissions as I can, and will create them in the order that they are received. All will be ready in time for Christmas!

Dashing Dreams and Building Faith

Life can feel like a roller coaster sometimes, can’t it?

Our family has been on one the past month or so.  Almost a month ago, we found out we are having a BOY and we were overjoyed… at the top of the level that our happiness usually goes. The very next day, we found out that the same ultrasound that gave us such great news also revealed a troubling area called Echogenic Bowel, which basically means that there are some areas in the little guy’s colon that come through on the scan as dense as bone (so they appear bright) and they shouldn’t be there. They should be grey like the other organs.  This shows up in only 1 or 2% of 2nd trimester scans and there are a number of reasons this could happen, 25% of which are very concerning.

Through a follow-up ultrasound, blood work and genetic testing, we were able to fairly quickly (within a couple of weeks) rule out some main causes for this finding: infection, Cystic Fibrosis, and Trisomy 13 and 18.  What remained was the possibility of Down’s Syndrome.

Now, Nate and I know and love a couple of great kids with Down’s Syndrome. It is not a death sentence. But, a diagnosis like this would mean the death of many of the dreams we already have for our son, and adds a number of potential health complications.  The first day after hearing the news that our son could have a chromosomal disorder was definitely a low point in this pregnancy.

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