We have done a fair amount of research in all matters relating to craniosynostosis. Having a child born with the condition quickly opened oureyes into the world of cranio. We have pulled from sources such as Seattle Children’s, Cincinnati Children’s, and our own experiences with our daughter. We did our best to compile some explanations of what the surgeries are, what they entail, and when to expect them. Click any of the links below to learn more (they are listed in order by age of the child). The ones with * are ones that Zoey has been through.
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.
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.
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.
The cranial portion of the surgery is now underway. The incision has been reopened and distractors will be placed on either side of her head. We have been told that all is going well, although it is taking longer than was initially estimated. We will be using a screw driver to gradually increase the space available in the posterior portion of the skull over the next few weeks. The front remodeling will not be worked on for a few more months, as planned per last week. We are getting there.
The big scary date on my calendar right now is October 16th. This is when Zoey is currently scheduled for her next cranio reconstructive surgery. It is roughly a month before Jellybean is due to enter the world, so we should be alright with a solid two-week recovery at home before having to think about adding a newborn to the mix. Using the same ear-to-ear incision as the first round, they will focus on rounding out the forehead to allow further brain growth, and providing some additional structure in the upper eye area. Most people have their skull stick out a bit directly in line with their eyebrows, which forms protection for the eye. Zoey will need to have this constructed in order for her eyes to gain that needed protection. We have been warned that her swelling may increase this time due to the sensitive eye area that is being addressed, and also that she may take an additional 2-3 days in the hospital before the sutures have healed enough for her to be discharged. In some ways it is more of what we have already experienced, but I don’t know if anyone can get used to this type of procedure. Please pray with us that Zoey’s cranio procedure and recovery will be as successful this round as it was initially. On a smaller note, Zoey will also have tubes put in her ears during this procedure.
Maybe you are sick of reading these appt follow-ups…trust me, I skip at least half of them and only include the major elements. And really, life with Zoey IS 50% doctors’ appointments and resulting conclusions.
On Friday we met with Z’s cranio plastic surgeon, Dr Rhodes, who is basically the chief head authority on all things relating to Zoey’s medical care. We are looking at three procedures within the near future, two rather major and one much less intrusive. The biggest is another cranio surgery, which would include restructuring the skull around her orbital (eye) area. I’m sure I will have much more to share about this one as the time gets closer and I have more information. The second is tubes in her ears, which will likely happen during the same time. This is a more preventative measure considering she has narrow ear canals with fluid in her middle ears, but hasn’t had any ear infections. The last is corrective eye surgery, where the muscles surrounding the eyes will be restructured so that they work a little more effectively together. Dr Rhodes is going to spend the next week or so in connection with Z’s other related doctors and develop the best time frame to address each of these areas that will be best for our family. Somewhere in the middle of this I’ll be giving birth to our son, which is another major factor that we are all planning around as best we can. We have a new cranio clinic appointment scheduled (where a bunch of specialties team up and see us at the same place on the same day) for Aug 5th, when we will receive the final recommendations on when to proceed with each of these surgeries.
This gives me over a week to guess, try to forget, pray, and guess again with what sort of time frame we have for when we will be spending a few more days in the hospital. Sigh. It’s all needed, but I’m not looking forward to another round of this. My first guess? October.
We are working on an update that should be out sometime tomorrow…. just taking time with our amazing, beautiful, strong little girl…. and trying to catch some rest. We thank all the visitors that have come, that will come, that tried to come… as well as all of you for your love and support that you have expressed for Zoey. We are not home yet… but we will get there by His grace. More as and when we can.