Hi there! I'm Kati. Married since 12/11/10 and mother of 2 under 3. I'm also a Cranio Mom, which means that I have a child with craniosynostosis. While it affects 1 in 2,000 births, I had never heard of it until Zoey was born. Maybe you haven't either. Welcome to my new world.

Today we had a family excursion to Virginia Beach. The kids loved the sand, the water, and the wind. We loved it too, but it left both Michael and me missing the West Coast beaches. Hopefully we will get back again one day. It was a good day.

Zoey’s Post-Op Appointment and Beyond

This morning our family met with Dr. Jennifer Rhodes, Zoey’s Pediatric Plastic Surgeon, (as well as her Care Coordinator) to cover any questions and concerns, as well as to provide some clarity for Zoey’s healing and medical path.

To recap, over 12 hours on July 30th, Zoey’s latest and biggest procedure involved an anterior cranial vault remodeling and a fronto-orbital advancement. In layman’s terms, they remolded her forehead to allow for a more natural-looking space for brain growth by making a bunch of little cuts on the inside of her skull (yes this means they detached a portion of her skull from her brain to work on it) and they also built up her eyebrow region to provide more protection and placement for her eyes. If you are interested in more details, Google offers some great insight through medical journals and current articles; although you may want to avoid the images if you are sensitive to that. Now that I am able to breathe again, I’ve been really interested in the details of how they made it work. It’s pretty amazing. Michael has a great way of describing it using watermelon (craniodad).

But back to the visit, I would describe Dr. Rhodes’ tone of voice as cautiously optimistic.  She doesn’t sugar-coat rainbows and unicorns, but she will always offer every ounce of encouragement she can in what she sees and in how she is able to help.  I have always had an extreme amount of respect for her because of this ability to funnel all of her information into what we need to hear and what will be most helpful for Zoey. Today was no exception. The first sentiment I remember hearing from her is that Zoey now looks a lot more like her little brother.  This is something I had remarked on only yesterday. Standing next to each other, they look more like siblings today than they ever did pre-surgery. (And yes, at 9 months old David is beginning to stand now!) Dr Rhodes used photos of both Michael and me in her plan for reforming Zoey’s face, so there was an obvious attempt to maintain a family resemblance. I would say mission accomplished!

Slightly beyond the scope of surgical intentions though, are the facts that Zoey has been sleeping better, breathing better, speaking better, and responding more readily in conversation in these last few weeks than ever before. It’s hard to know which factors have contributed the most: among David babbling, less cranial pressure, settling into life as a 2 year old, and hearing so much more conversation from visiting family. But the timing for a post-op evaluation has been great.

The incision itself is healing very well and is largely covered by Zoey’s hair already. The stitches will dissolve, and many are coming out on their own now. Swelling is minimal and only in the morning. We have stopped all pain meds. Continuing in the tone of cautious optimism, we are scheduling follow up appointments with a few other departments to make sure many areas of development are accounted for and discussed.

This afternoon we met with another doctor to talk about Zoey’s ER visit last week. We will be seeing him again for some testing to explore a possible reason behind Zoey’s difficulty with digesting food, especially post-op. Next on the list is ophthomology in early November for another eye exam. We anticipate a strabismus procedure some time next year to allow her eyes to work a little better together. In my mind anything not cranio-related is “minor”, but it is an important surgery that needs to be well-timed with her facial and physical development.

Any other developments regarding future procedures and time in the hospital will result from Zoey’s next CranioFacial clinic in November. These are hosted by Dr Rhodes and involve multiple specialties within a single hospital wing.  Each specialty receives patients over four hours, and then compares notes with everyone else to provide a more holistic treatment plan for each patient. It makes for an exhausting, but very productive morning for all involved.

I’m happy to be working with only two or three specialists beyond clinics this year. And after only two years, I’m also getting to encourage other families with kids going through multiple surgeries and procedures. There are some low, scary points, but there are also so many encouraging steps along the way.  It is important that families recognize the good in the midst of the daily frustrations and overwhelming flows of medical information. Things that I am already taking for granted in David were huge milestones for Zoey. So there are more tears and feelings of personal inadequacy, but there are also so many more little celebrations with each reached goal. It’s weird for me to think that when Zoey was David’s age she had already experienced anesthesia four times. So much can happen in so little time. I’m so grateful for two amazing babies, and for the ripples of joy that they cause in our family and everyone around us. Zoey is healing, I’m breathing again, and life is good :) Thank you, Lord!