Emmie slept most of the day on Thursday.  She had to have a little oxygen after the vent came out but that was only for a couple of hours and it was a very low flow.  When we moved out of PICU Friday, we got to really see her come back around.  She saw her toys and wanted to play.
And, of course, go for a walk.

The kids all came for a visit on Saturday and Emmie couldn’t have been more excited to see them.

The beautiful weather meant a trip outside. 

Emmie enjoyed watching a construction crane in the parking lot.

Grandmere and Papa were awesome and so willing to help.  They got to watch the kids for a few days and then Ge and Granddaddy got the same privilege (at least I hope they think it was a privilege).

Our first happy time in the therapy chair was on Monday morning.

Emmie’s room.  All cleaned up and ready for us to head out.

She broke out on Tuesday right as we got there and discovered that the parking lot was full. No worries as I circled back around and she got valet treatment.

Our traditional meal at Chick-fil-a after discharge.  She loves the chicken nuggets.

The day before surgery, we took off to Atlanta for Emmie to have her pre-op appointment.

Mark and I were in awe.  She walked right up to the scale, allowed Mark to help her up and stood there while it took her weight.  Then off she traipsed to the room.

Where she lifted up her leg for the blood pressure cuff and stuck out her finger for the pulse ox.  Not a single whimper or cry.  That was a first.  She knows the drill now.  We’re so excited that the stresses of a normal vital check are over but so sad to know that she has gotten used to this and it’s just a part of her life.

The fun little cozy coupe did not hurt her calm demeanor at all.

After a quick blood draw we were off to have some fun.  We went to a local mall that had an American Girl store and a carousel.  Both were big hits!

A sweet blessing at the American Girl store came as we spoke with one of the sales clerks.  She wanted to know all about Emmie.  I mentioned she was having surgery the next day and we wanted to do something special before then.  Emmie spent the whole time playing with the babies and the play food.  I talked Mark in to getting a diaper bag for her (it came with goodies, ya’ll).  As we were picking out stuff for it, the store manager came over with a bag of stickers, coloring sheets and all sorts of prizes.  I felt bad because all Emmie wanted to do was play with the babies at the time.  She definitely has enjoyed those goodies since then and American Girl made sure to win us over even more with their sweet sales staff!

Emmie loved the carousel but didn’t want to ride the horses.  Just give her a bench to sit in and go around and around on and she’s happy.

We then went out for supper at a much recommended restaurant.  It was pretty good.  This was our (Mark and I) Valentine’s day celebration.  Emmie was so sweet and content to eat her fruit and fries while Mark and I chatted away.  Okay, we chatted with her too.

We have family of family that lived near by and had offered a long time ago to allow us to crash at their carriage house if we ever needed to.  We decided to take them up on the offer for this trip.  It was so nice and quiet and perfect for a quick rest before heading to the hospital the next day.  This is what she did when she realized she was going to share our bed.

After Emmie and Mark got a good night’s rest (nerves and prayers woke me up at 2:45 a.m.), we headed to the hospital.  Papa and Grandmere made a super early morning trek to be there before surgery.

I realized in the waiting room that we had not gotten a picture of her curls and I snapped one really fast knowing they may all be gone by the end of the day (they had to cut/shave the bottom half of her curls).

In our personal surgery room just waiting.  She did good again with the blood pressure cuff and pulse ox.   After her happy juice.  She was as good as can be. The anesthesiologist came by and talked with Super Bear.

Grandmere and Daddy just hanging out.

Let the waiting begin.  This was after lunch as we watched the surgery waiting room slowly clear out until only us and an emergency surgery family were left.

Meanwhile back home…The kids had gotten the shirts in on Tuesday and were ready to show their support on surgery date.  Aunt Tracy came by to get her shirt as well. That right there is a good friend.  Braving my children, her children and a few extra while unknowingly preparing to deal with a stomach bug after she left (three of her kids and herself got it…only one of ours did).

Ge and I checked out the garden.  And Ge promptly cleaned out the fountain.  It was cold ya’ll.  But she said the pump would get clogged and it needed to be done.  Anything to keep busy, right?

Then time passed and we had her.  We were with our girl.  I was not prepared for how hard it would be on her.  The silent cries as she tried to tell us she was hurting and uncomfortable.  We know the ventilator was necessary for her protection but we were so glad when it came out.  We were told she would be sedated and they tried.  Oh how they tried.  But, the forced air from the ventilator kept waking her up and making her uncomfortable.  They had her on three to four different sedation meds and she never could get in to a good sleep until the respiratory therapist turned off the ventilator at 4 am.  Then sleep.  Glorious sleep. She rested so well until morning rounds when they removed the ventilator.

Then we got to hold her and let her sleep some more.

That evening, she got to see her brothers and sisters on skype.  I know it doesn’t look like much here but her whole attitude changed once she saw her sidekicks.  She was thrilled to see them all.

Emmie had spinal fusion surgery on February 17th.  Remember when I said that NF was a marathon?  February 17th was one of the longest miles.  She went back with her neurosurgeon at 7:30 in the morning and we saw her at 8 that evening.

The logistics went like this:  They went in to the front and took out two vertebrae.  Then they stitched her up, flipped her (with the halo for stability, breathing tube in place, etc).  They put in metal rods in the back of her neck, secured with hooks.  Secured with hooks because they don’t make screws small enough for her bones.  Then they closed her up, flipped her.  Again.  And replaced the two previously removed vertebrae with a straw filled with her bone.  She spent 24 hours on a ventilator and only had a slight dip in her breathing when it was removed.  She was on narcotic pain relievers Wednesday and Thursday but by Friday morning pain was being controlled with acetemetophin only and we were moved to a regular room.  We are also pretty certain that valium makes her throw up.

Going over the details with Dr. Chern.

To say this surgery was extensive is an understatement.  It was intense and a lot of work and a lot of quick thinking and planning on our neurosurgeon’s part.  He and the whole surgical and orthotic staff were amazing.  Emmie’s orthotist came out each time he was with her to give us a personal update.  Dr. Chern came out of surgery and was so great at going over everything they did and how she did.

They straightened her spine, ya’ll.  It went from this:

 to this:  in a matter of hours.

She did well in the hospital.  Over the weekend, we were worried because she refused to stand.  When we brought it up with Dr. Chern, he wanted to get some x-rays done and have physical therapy come by.  We were just trying to rule out muscle and neurological issues.  By the time physical therapy came by, she showed off and walked to the bed with no problems.  She continued to improve enough throughout the day for us to go home on Tuesday.  Six days in the hospital.  And then home.

Recovery is going to take some time.  In adults, kyphosis surgery is not nearly as involved as hers had to be and it takes about two to three months to recover.  Six months to fully recover.  But, she’s up and walking.  She’s laughing and talking and this weekend she wanted to climb stairs.  Each day she is getting stronger.  We’re continuing with the over-the-counter meds of ibuprofen and acetemetophin and that keeps her mostly happy and going.

To our knowledge no one has really done spinal fusion for kyphosis on a child under 2 years of age.  She’s one of the firsts.  She was a first for our doctor.  Doctors all over the country are watching and learning from our Emmie.  Whether this is a permanent fix or not, we know that God is using Emmie to help children that come after her.  We can’t wait to see how God is gong to write her testimony (or any of our kids for that matter).

What’s next?

Next comes the biggest step.  Emmie will go back sometime in around two weeks.  She’ll be put under general anesthesia and they’ll do a CT scan to make sure the bone is grafting to the rods and straw.  If that is confirmed, they’ll take her in to the special procedures room and remove her halo.  She’ll wear the neck brace she had before the halo for a few more weeks and then she’ll be brace free.  For the first time in over a year.

And then we watch closely and pray.  If she has spinal stability over the next six months, we can consider the surgery a success and no longer have to worry about kyphosis.

At some point after the halo is removed, she’ll also have an MRI to check on the growth of the plexiform neurofibroma.  We were unable to do it in the halo because it would present with artifacts (distortion) and make it impossible to see what is going on. The rods and plate may cause some distortion but it should not be as bad as when the halo was on.

Was.  I can not imagine life without the halo.  It’s just become a part of our lives.  Part of who she is.  And yet, I can not wait to feel my baby’s cheek against mine.