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!

Friday’s Pre-Op Appointment

This morning Michael met the kids and me at the hospital for Zoey’s pre-op. She will be getting her distractors out on Thursday, the 23rd.  We are all counting down for this as they have started causing some problems.  The hinged arms got buried in a few layers of her scalp after we had screwed them as far as we could, and then somehow Zoey managed to pull one completely back out.  We didn’t realize how bad the opening was until I was brushing her hair and pulled a golf-ball sized chunk of matted hair off of it, revealing an inch-long hollow trail underneath…It was not pretty.  The past week I have tried to keep her hair out of the incision…mostly successfully.  I was a little anxious with what sort of response Zoey’s small crater would generate, but Dr. Rhodes wasn’t overly concerned about the openings today.  Hopefully within another week they will just be a rough memory in Zoey’s baby book.

On a more positive note, the distractors have completely done their job!  Zoey’s head is more round now than it has ever been, with a good amount of space for her brain to keep growing in a natural shape.  Additionally, and not necessarily due to the screws, there is a small ridge growing under her eyebrows that wasn’t there before, and her profile is growing more and more natural-looking.  She seems to be growing out of some of the initial concerns all on her own.  We’re not fully in the clear, but so far all of her changes within the past three months have been good.

Back to the appointment, this procedure is meant to only take 45 minutes and Zoey will not have full anesthesia, so in perspective, it’s a relatively “small procedure”.  I still argue that there is no such thing as a “small procedure” on a baby’s skull, but at least I know the drill and the waiting won’t take as long this time around.  Procedure #6, here we come.

Screw the Screws

I am currently very excited with the prospect of getting these screws out of my daughter’s head.  We have stopped needing to manipulate them twice a day, but the fact that they stick out of her skull in five places is getting old fast. In the past two days I discovered three places that started bleeding again.  This is thanks to the energetic toddler herself who loves to push the limits and climb beyond her abilities (and bump into things on the way down).  At this stage in the cranio game, I’m not nearly as prone to gasping and wringing my hands as I might have been.  But there is something about a small stream of blood draining from my little girl’s scalp that still increases my blood pressure.  So yes.  The screws have served their purpose well, and now they need to go.  The date of extraction has been scheduled for January 23rd.  We’re getting there.

Cranio Follow Up

This morning was the last follow-up appointment for Zoey’s cranio surgery.  At least it is for a little while, until after we are settled with the new little one.  Z is doing well enough that we will be able to email her surgeon with updates every few days and not worry about any appointments until we are ready to remove the distractors.  She has about another week of expansion space on them, and then at least 4 weeks of “settling time” for the bone to heal.  I’m going to post a few pictures later on today, but her facial structure is changing so much!  She’s looking more and more like a little girl and less of an infant.  I imagine I would say that no matter what was going on, but it does seem a lot more drastic and dramatic of a change this way.  We are so excited with how well she has responded to this whole process, both physically and emotionally.  She’s a happy camper.

Distractors Going Well

After another week of turning screws (how many moms get to say that literally?) Zoey continues to amaze me. I noticed her profile looking similar to mine for the first time today. It makes me wonder if we are now reaching the shape she might have naturally had. The visible arms on the distractors are getting shorter as the skin-covered incisions widen. It turns out our greatest limiting factor in this process might be the length of those arms since they need to stay above the skin to operate the screws. Of all the possible downfalls, I feel we are blessed that this might be our only hurdle in gaining a full 3mm on each side. Zoey has a skull x-ray tomorrow, and we will find out on Friday what our updated plan of action will be.

Cranio Weekly Follow-up

This morning we returned to Dr. Rhodes for a second follow-up for Z’s distractors recovery.  I was happy that we didn’t have too many surprises.  Zoey is responding so well to the screws that they want to continue and open up as much space as she will safely allow.  The plan is to continue stretching until Zoey gains 3mm of space on each side.  I am really glad that her skull is responding so well to the treatment, but it also means that we will likely still be continuing the process through the birth of her little brother.  Initially we had planned to be finished with the turning of screws before planning for the second arrival.  Michael is starting to take on more of the care for Zoey whenever he’s home, so hopefully we can keep track of everything that needs to happen between each of us taking one child at a time.  It’s so hard to plan ahead when the plans keep changing.  I’m also planning on having a natural delivery, so that could happen any day between this week and a month from now.  At least we’ve been through versions of all of this before…it’s just a matter of doing all of it at the same time now.  And really, it’s all good news, so I’m grateful for that.

Recovery update

Today was our first follow up appointment with Dr Rhodes, Zoey’s cranio surgeon. Z is healing well and quickly, which is what we are learning is typical for her. Her dad and I have opened the distractors about a millimeter each day.  She now has over 4mm of extra space in the back of her head for brain growth.  The initial plan is to keep going until we have gained between 2 and 3 cm.  She still bleeds a tiny amount with each turn, but it is much less gruesome so that I feel more comfortable publicly sharing photos.  Im sure there are some of you who are interested in how it looks, but i don’t want this blog to become another scary source for new cranio parents.  It can be a little overwhelming to see stitches and metal bars and swelling on a child’s head on day 2 from surgery, but Zoey has responded as well as anyone might have hoped.  I know I have said this before, but it really is amazing how quickly these kids bounce back.  The hardest physical elements have been keeping her still enough to turn the screwdriver, and keeping her hair away from the exit sites.  We have been pre-treating with Tylenol for pain and applying bacitracin for infection and they seem to be a great combination.  I should have some photos up by tomorrow.

Recovering

After over 7 hours of waiting (3 of OR time), we were able to meet a sleeping Zoey in the PICU slightly after 4pm. She looks great and we are relieved to have her back within sight. She has gained 2 springs sticking out from the distractors, which look like little antennas. She will remain under close observation for the next 24 hours. Thank you all for your thoughts and prayers. God-willing, she will continue to heal quickly.