Today we saw Doctor #5 in two weeks. It's hard. I'm a Mom who loves my little girl more than I thought possible and I work in a hospital full of sick kiddos and often sad stories. I never dreamed I would be one of those parents. It is so much different to be "on the other side" and I hate it! Everything went so well for me during pregnancy, but things took a turn for the worst when my little girl couldn't breath.
Laryngomalacia - the worst case they'd ever seen -- surgery 24 hours later. My prayers were answered and we brought home Miss Ella a week or so later. Then there was the first head CT scan at about 3 weeks of age. Yep, there was something else wrong (
enlarged parietal foramina) and of course it was extremely rare and no one had seen a case quite like this. We went along with life following her closely with many doctor appointments. She had a hospitalization for RSV and then tubes in her ears, but nothing complicated. Issues with weight gain and growth were followed closely. Her 18 month head CT revealed that most of her sutures in her skull were closed. The 2 doctors were rather stunned, but in relation to the large holes in the back of her skull it wasn't too appalling to them. Then her 2 year appointment came with her pediatrician. He reviewed her last CT and got scared. They labeled her craniosynostosis. I was shocked --- I know what that means! I remembered them worrying about her sutures, but I knew we were going to follow that, but I didn't know it had scored her the diagnosis from the radiologist!
That's when the routine visit to her neurosurgeon turned into a full day at the hospital and another half day for another head CT. Miss Ella now has a third rare condition.
Craniosynostosis. Kind of rare to happen at her age, but why would it be anything less than rare?
I'm frustrated! I'm scared! I'm mad! I'm having a big ol' pity party for my little girl! It's been a rough 2 weeks. This is my blog and where I put my feelings and my feelings today are crappy and I think this is unfair!
It was really a challenging call for everyone to decide the right time for surgery. We had always been told to wait as long as possible to close the holes in so that they could use her own bone. But now we are being told there is so much space to fill since now they have to enlarge her skull to give it room to grown AND fill in the holes, so cadaver bone is a must. Well....they didn't want to do cadaver bone before??? And of course the risk of having to re-do the surgery because her head is not close to fully grown. But now we have no choice. In the end we were advised to choose a time that works best for our family and get her in for surgery soon. If and only if the ophthalmologist could rule out any damage to her optic nerve from the pressure in her head. If there was damage, she would be going to surgery ASAP (after a LONG visit to his office, her optic nerve is fine, but she is at a higher risk of vision issues, so we should follow up with him as well). The neurosurgeon and plastic surgeon assured me they would work with me on a date and they are flexible. I spent hours looking at the calendar for a perfect date.....then I got the voicemail to call her back for the surgery date they set. OK, our decision was made for us. We'll deal with it.
My job was not-so-nice in dealing with my time off. I'm asking for 2 weeks. I called them within 5 min of me knowing the date. I WORK at the children's hospital where my daughter will be having neurosurgery! Seriously? The first thing she said was, "well, how much vacation do you have?". I brought up FMLA and she told me I wasn't eligible. I still feel she is WRONG and I need to make those phone calls, but I haven't felt like doing it in my time off this week. I don't have the energy to fight for myself!
I'm a flood of emotions -- surgery, keeping family informed, dealing with my job, dealing with my out of control 2 year old, playing single mom while Joe is out of town, feeling guilty for leaving next week. Why does she have to have another issue? Are all of these issues my fault? What does this mean for future family decisions? Is she just a 2 year old or does her head hurt or is something else wrong? I have to strongly evaluate every fit she throws!
I'm thankful this round of appointments is over. I purposely schedule all her appointments while I'm working weekends so we have plenty of time for the issues we are now used to. Sadly, I now feel Ella will have regular appointments with a pediatrician, neurosurgeon, ENT, plastic surgeon and now an ophthalmologist! She understands going to the doctor and thankfully she's OK with it. Thank God my schedule allows for this while I work weekends or I'd be fired!
Ella will have surgery January 12th. It is expected to be a 5 hour surgery with a night in the ICU and about 4 more nights on the floor. That will likely be the LONGEST 5 hours of my life! The neurosurgeon and plastic surgeon will work together to expand her skull and repair the holes.
The positives are -- it will be done. She can likely be a regular kid with less restrictions. They can't promise me anything because they don't know how much space will be left. They referred me to a support group for parents of kids with craniosynostosis and most kids do wonderfully and you'd never know they even had surgery ---- but these are the kids who have one skull defect and it's repaired at about 6 months of age. All but one suture is fused for Ella and she has the 2 additional large holes. I feel we have a different situation. No one really knows how it is all going to go and it scares me. I know she is a fighter and it is comforting to see these kids doing so well.
I'm thankful for my awesome support system. Joe is amazing! Family and friends have been awesome! I ask for prayers for Miss Ella and her surgeons. We look forward to a fun Christmas in Iowa and then home to prepare for the big day.
Other parents struggle through many worse things and I am very appreciate and cognizant of that. I am very thankful for what I have and the wonderful resources we have access to. I'm just plain sad and frustrated today!
Ella made this - turkey body is a tracing of her foot and her hands made the feathers! Fun craft! Her favorite part were the googly eyes!
They made it to Kindermusik within an hour of landing in Salt Lake!
I'm guessing this was an "ella do it" moment
They ventured to a park I've never been to and found the broken man which Ella loves to tell me all about!
This is the life!
Equal opportunity for jewelry!
To the moon and mars!
Yum! Cookies!
It's just not a vacation without some of Alyssa's specialty "self portraits"!
The "short gate" that allowed Joe, myself and Nicky to easily get over, but not Ella had to go. She never did it, but we all knew she could make it if she tried. It's gone and our old martini room/breakfast nook is now an Ella playroom. 
Joe installed a new Nicky door. I'm concerned about how I'm going to get my large laundry basket through it, but I'll figure it out! Nicky used to have access to outside at any time. Now we have to let him through the door so it's been an adjustment for me this week. All in all, it's working well. Ella is still safe from tumbling down the stairs and Nicky lets me know when he needs to go out......although it took me a while to figure it out on more than one occasion! 
We now have red wall in our kitchen! I have always wanted to update something....but it seemed to be too big of task and I was hesitant to paint this wall for fear of bringing out the defects ---- it's the back of our 100 year old fire place and it shows! Cool clock, he found that too! Maybe he's been watching the new Nate Berkus show!
We went out to a Brazilian Churrascaria to celebrate. Ella enjoyed all the excitement and then created some for all of us! We hope you had a wonderful birthday!
My coworker/neighbor made Ella this cute bag and filled it with Elmo goodies and treats. The best was the toothbrush! So thoughtful! 
Cheese! This is what I get what I ask for a smile!
Daddy and Ella out on the street. More trick or treat, more candy....MORE, MORE, MORE!
Love these bumble bees!
She does love her doggy!
