Emily had her follow up appointment with her neurosurgeon today. We only meet once a year now to have a new set of x-rays done and discuss the stability of her cervical spine (neck). What is now just a routine appointment was formerly a really big deal in our world. But, as with most things, as time passes, I start to forget how the scary story unfolded. This is why I started a blog - not to re-live unpleasant times, but to catalog memories. It's a way to see how far we've come and be reminded how blessed we are. Emily's spine surgery took place long before I started blogging, so I will recount what I remember because it was a significant part of our lives at that time. (Caution: I can get a little long winded..)
I could look up the date when she had an MRI to investigate the formation of the bones inside her ears, but I won't. I'm thinking she was around 15 to 18 months old. She has these little dimples in front of her ear lobes and the ENT we were referred to wanted to see images to know if the structure of her ears were normal and if anything that indicated she would have a hearing impairment. Yes, we were finding in the 18 or so months after Emily was born there could be so many unknown organ and medical issues inside of her due to her chromosomal abnormality than what we could just see on the outside.
By this time in her life she had had 2 eye surgeries, had been hospitalized for bronchilotis and kidney infections 4 times, had been diagnosed with kidney reflux. We had been discharged from cardiology and discovered that her pectus excavatum and sacral dimple were no big deal. Emily was doing great. At 1-1/2 years old she wasn't walking but was crawling and just a joy to have. We headed into the MRI with the awareness that we had been so lucky with her health to this point. She had no major organ problems and we would deal with potential hearing loss if we had to. We wouldn't have a choice.
The MRI was an image of her ears but the image also included her neck by default, or chance, or divine intervention. The ENT told us the structure of her ears was normal and an ABR test indicated only minor hearing deficiency in very low tones. This was no big deal and should not affect speech and language development. Whew! We were lucky once again with this girl!! I don't remember who told us that the MRI did, however, show some malformation of the bones of her neck. Maybe it was her pediatrician or maybe it was sent on to neurology right away. Either way, we ended up in a consult with neurosurgery as a result of a scan of her ears. There were several things wrong with the vertebrae of her neck, but most notably was that her spinal cord was being pinched by her vertebrae. That doesn't sound like a good thing and it's not. She was experiencing no side effects like numbness in her arms or legs due to this. I do remember her neurosurgeon saying sometime in that initial meeting that a trauma like a car accident or a tumble the wrong way could paralyze her for life if her neck was injured. I fully believe, once again, God had a hand in Emily's life. The purpose of the scan was not intended to include her neck. Our next appointment with neurosurgery was to discuss spine surgery.
Here are the nuts and bolts of the surgery that was going to take place: all of the bones that are at the occipital bone (the bone that holds up your head essentially) were not formed. Below that, her spinal cord was being pressed on by cervical spine and her neck was considered unstable.
1. occipital bone
2. cervical vertebrae (7)
Her neurosurgeon and an orthopedic surgeon (both nationally recognized) would remove the parts of the bones pressing on her spinal cord, remove bone from her hip and fuse that onto the occipital bone where bone was missing and then use rods and screws to fuse her neck together from the occipital bone to cervical spine vertebrae #5 (there are 7 vertebrae in your neck, so 80% of her neck is fused and immobile). Surgery was scheduled for December 23rd and was expected to take 8 or 9 hours. Ironically, one of my first thoughts upon hearing this was that Casey wouldn't have a normal Christmas morning because Emily and I would be in the hospital for a week. I knew these were 2 of the best, most capable surgeons in the country and, again, the problem could be fixed. So I began to breathe through all this information and decided (as the surgeon is still talking) we would just call Santa and ask him to come early. The surgeon then explained that her head would need to be held immobile for 4 to 6 months and she would
most likely wake up wearing a halo screwed into her skull. (If you don't know what a medical halo is, google it.) And I almost threw up. Yes, her spine was still going to be fixed and safe and that was a blessing, but I have my limits. And the thought of seeing my 18 month old daughter outside of the operating room with screws in her head, seemed too much to handle at that moment as he began to explain how we would have to clean each of the sites where the screws entered her head. That's what was weighing most heavily on me about the whole thing - Never mind we had been informed that my baby was going to be cut open and they were going to be near her spinal cord with knives. I was focused on screws and Santa. Crazy or coping mechanism? Even I don't know.
The surgery ended up being rescheduled to December 28, so Santa was able arrive on Christmas morning and the 4 of us stayed huddled close around each other here, not travelling to see our families out of town in fear of catching germs. Okay, my family just did a major eye roll here, because I'm kind of a germ-a-phobe, but if Emily even had gotten the sniffles they would have postponed surgery again. And I had myself mentally ready for this and wanted it done and Emily's spinal cord safe. So we had a merry little quarantined Christmas :)
We arrived at Cincinnati Childrens around 6:00 in the morning the day of surgery for all the pre-op stuff. It's a lengthy process of questions, answers, tests and worrying. Eventually I got to carry her to the operating room annex where a team of no less than 6 nurses and anaesthesiologists were there to help put her to sleep while I held her. After she was asleep I didn't need to be strong any longer. I turned into a freaking mess of snot and tears as we were being ushered away from our daughter into the surgery waiting room to sit with all the other families whose children were in surgery. Thankfully, Tom steered me to the ladies room where I locked myself in a stall and had a good noisy, ugly cry. When I emerged to wash my hands, the grandma of a little girl was there to tell me she understood the bathroom cry she had heard. She had just sent her granddaughter off for open heart surgery a few minutes before. A cold dash of water and some perspective had me pulling myself together. Emily's surgery was long and complicated, but she didn't have a chronic heart condition, for goodness sake.
After I finished my bathroom cry, we were surprised to find out the family who's child has the longest surgery of the day gets a private room with recliners, blankets and a TV to sit and worry in. With Emily's surgery scheduled for 8 to 9 hours, we were the winners so Tom and I hung out in our little room all day before a nurse came in and said surgery was complete and we could head up to the ICU waiting room. We bolted up there expecting to see Emily, screws in head, very soon. Instead we sat there in that waiting room for well over an hour. Finally, we were taken back to where she was laying, still sedated from surgery. For the first time in 10 hours, we could see our baby and she was hooked up to all kinds of tubes and monitors and she was not wearing a halo! We were told surgery went better than the surgeons had expected and they felt she was stable enough to be placed in what was called a Minerva brace. For as beat up as she looked laying there, it was a picture much better than what I had expected. I don't think many parents would have been so excited to see their 18 month old baby laying in bed looking like this, but we were overjoyed. It's all about perspective, I guess.
We stayed in the hospital a week and Emily and I rung in 2010 by cruising the hospital hallways in a borrowed wagon.
This post could go on forever with details from those 4 months of our lives with that brace. I could write for hours alone about what we did to help her sleep in that thing - It wasn't comfortable for her at all, and every evening ended up with me in bed with her at 8:00 p.m. watching Jersey Shore on my laptop sipping a glass of wine...
She adjusted to the bulky, heavy brace like a rock star. It was only a few days after we came home, that she started crawling. Her head was immobile so she would crawl for a few feet and then stop and sit up to see where she was.
We borrowed a walker that secured her, so she could move around upright for 4 months. And she started to gain strength in her legs.
Then we started to see her pull herself up along furniture.
And walk behind her little grocery cart.
My dad made a little push wagon with all-terrain wheels so she could walk outside.
She turned 2 in that big bad brace.
Seeing how close she was to actual walking, I implemented squatting boot camp here at home so she could learn to get up to standing by herself.
And then my special, brave, little girl took her first steps in that damned brace at 26 months of age.
The brace finally came off at the end of April.
By the way, her x-rays today looked good and her neck appears to be stable. She will always have a shorter neck and will never be able to turn her head or look up, but her spinal cord is safe and that's all that matters to us. Today we talked about the vulnerability of her neck now and how we will always have to be a little cautious with her activity for the rest of her life, but it's nothing we can't handle. We have that 6 inch scar on the back of her neck to remind us to be more careful at playgrounds and that we will have to choose something other than soccer to play. We also have that 6 inch scar to remind us God is going to make sure everything is going to be all right. And that scar not only lets me know where to part her hair evenly for pigtails, it gives me the courage to get through somethind I find tough. Because if my little girl can brave such battles with a smile on her face, I sure as heck can too.
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