After the Book

The most frequent question I'm asked after people have read "Ella", is:

Playing in Daddy's shoes

"So, how is Ella doing now and how was her hip surgery?"

The simple answer is: good.

The answer behind the "good" is quite extensive.  Ella's hip surgery was initially scheduled for June of 2011, but a week before we were supposed to go down to Salt Lake City, Ella contracted Croup...again.  Her surgery was re-scheduled for August.

Once August arrived, Ella seemed to be doing fine.  She had just recovered from another round of Croup, but seemed to be clearing up, but to our disbelief, with our car packed with suitcases, toys, luggage and movies to last hours, Ella woke up the night before our trip to Salt Lake City with (you guessed it!), CROUP.

She could barely breath.  Nothing seemed to work to open her airways.  We tried going outside sitting in the cool, night-air to see if it would help to open her up, but when precious time had passed and Ella was still wheezing heavily, we took her into our steamy bathroom, hoping that the steam would clear her right up.  It didn't.  Again, we went outside to see if this time, the cool air would help out.  It didn't.  Then, as a last resort, to avoid running Ella down to the Emergency Room, we stuck her head in our freezer, and guess what!  It worked!

Ella's new bear, Coco

We were immediately on the phone with the Salt Lake City docs discussing options.  Since Ella's surgery was initially scheduled for June and called off because of a case of Croup and we were looking to do the same thing in August, what was to stop her from contracting it again going into the fall/winter months?  After many, many phone calls with doctors, nurses, pediatricians and a quick run to our local pediatrician, we were headed to Salt Lake City for her orthopedic surgeon and pediatrician there to assess her.

First breathing treatment in SLC

Once in Salt Lake, Ella seemed to be the focus of almost all the medical personnel.  CNA's were running around trying to get height, weight, temp, etc entered into Ella's medical chart, nurses were monitoring Ella's breathing.  The pediatrician had us running down for x-rays of Ella's chest, upstairs for breathing treatments, and more.  Finally, we were given to "ok" to go ahead with surgery because they weren't sure when Ella would be well enough to undergo surgery, so they used extra precautions such as having steroids on hand to open Ella's airways in an emergency and other medical stuff that I just don't understand.

Her surgery went amazingly (if that's even a word).  They only had to cut and rotate her femur and once that was performed, the leg sat perfectly in the socket - no extra scraping of the socket itself or extending was needed.  Her leg also matched the other leg's length perfectly!  Praise the Lord!!

Right after surgery in Salt Lake City

Ella's first outing after surgery

Ella's "cotton candy" treatment

After surgery, Ella was quite sick.  She had to be on oxygen because of the issues she was having respiring.  She also underwent frequent breathing treatments that required me to hold a misting tube next to her nose for 10 minutes at a time (Ella called it "cotton candy").  She was also connected to an epidural that was numbing the pain from surgery this time, so she was turned every 2 hours at night and had to receive the breathing treatments every 4 hours.  At one point, Ella's nasal cannula became detached, so I had to hold the tiny prongs in her nose for the remaining hours of the night to keep her oxygen levels up.

After 3 days in the hospital, Ella was discharged and sent home with her second wheel chair.  Even with Ella's breathing set-backs, the surgery went so well.  And her recovery was astounding.  The night we returned home, we went to the fair.  Ella had fun checking out all the animals and even got to ride some of the rides in her cast!

As in her previous casts, Ella got sick again and made a mess of her casts, so we had to take an extra trip down to Salt Lake City to have a new, clean cast applied.

At the end of September, Ella's cast was removed.  Just two weeks ago, we made another trip down to Salt Lake City and were told that Ella's hips and legs look GREAT!  Her leg lengths looked perfectly symmetrical!  It's been a long time in coming, but it was SO wonderful to get such a great report on Ella's hips.
During that same trip down to Salt Lake City, we saw an Ear Nose and Throat specialist for Ella's breathing problems.  Since the final draft of the book was written, Ella has struggled with several Croup outbreaks and also what seems to be Asthma symptoms.  She has been placed on a daily dose of inhaled asthma medication and was also given a rescue inhaler just-in-case.  While in Salt Lake at the ENT's office, he "scoped her", meaning that he strung a small camera on a "string" up Ella's nose and down her throat.  I held Ella and watched the monitor as the doctor moved the camera around.

Ella had bumps in her throat that the doctor informed me was called, "Cobblestoning" that was caused by irritation from Acid Reflux!  She also had significant swelling near her vocal chords.  He suspected that she may also having narrowing in her airway beneath her vocal chords (because she was intubated for an extended period of time as an infant - it can sometimes cause the throat to grow around the tube and be smaller than usual), but he could not see that portion of her throat unless she was sedated.  So, he decided to treat her aggressively for the acid reflux to see if that helped her frequent Croup outbreaks, since Croup is just the usual cold virus that flares in kids who have small airways.  If the Croup persists, he will sedate her and look again at the lower portion of her throat and a surgery may be required.

Also, the same week as Ella's appointments in Salt Lake City for her hip and throat, she woke up terrified because she lost vision for a few moments.  As a mother, it was the most difficult thing to experience!  Ella had fallen asleep on the couch with her glasses on.  When she woke up, she blinked and realized that she couldn't see.  She cried out for me and said, "I can't see!"  Immediately, I ran to her side and asked if she could see me.  She turned her head toward my voice but her eyes rolled right past my face and she cried, "I can't see you!"  After a few moments, her vision came back, I assume, because she got up and began playing.  When I asked about her eyes, she said, "My eyes not wooking vewy good.  Dey aw shy today."  Needless to say, we scheduled an eye appointment.  She had just seen the ophthalmologist in August (3 months prior), but we thought maybe her retinas were detaching again.  We had also noticed Ella using her hands to "see" people, including us.  One huge indicator that Ella's eyes are not up to par was when one of Ella's best friends came over and Ella got up to her face, almost touching her with her nose and said, "Who are you?"  And then began examining her with her hands!

After Ella's eye appointment, we were told that Ella's retinas were still in tact!!  Praise Jesus!!!!!  They did an acuity test on Ella in which she performed at 20/50 (20/40 is required to drive - so if the results were correct, Ella will not be driving).  She has blind spots that hinder her perifrial vision that date back to her laser surgeries that killed the bad blood vessels, but also created scar tissue in her eye and killed parts of her retina.  Ella also has distortion in her central vision because when her retina pulled away in her first few weeks of life, it stretched things and when it laid back down, it left kind of a ripple effect in her vision.  And with those things hindering Ella's sight, she also has smaller than normal pupils which let in less light, so her world is a tad bit darker than the rest of us see.  It's no wonder she trips and falls all the time!  Ella is also incredibly near-sighted.  She is almost to the -12 mark in both eyes, but praise Jesus that her vision is symmetrical, and praise HIM that she has vision at all!!!

It has just been so good to get answers.  Even with Ella's breathing issues, we are just so thankful for doctors who can run tests and narrow down the possibilities of what we're dealing with.  Even if it's more surgeries, we know the drill.  This is a little girl that we were told that we'd never have.  This is a little girl that was said would never take a single breath.  This is a little girl that the doctors said would maybe never walk and need bone re-construction surgeries...and guess what!  She did have those surgeries and now she walks!  And not only does she walk, but she runs and jumps and climbs stairs and tears my house apart!  Praise the Lord! :)

What a miracle!  Every day, no matter how tough or agonizing as we watch Ella go through uncomfortable tests and painful surgeries, we are thankful!  This little life was meant to be here and we are reminded of God's goodness each day as we wake up to Ella's sweet voice ringing out on our baby monitor (that we have situated next to our bed because of Ella's frequent night-time breathing problems) as she sings songs to Jesus!

We will praise Jesus for all of eternity because He Is Good and He Is God!  Praise Him!  The King, the Creator, the Reason for living and dying and everything else!  We will never stop singing praise to Him!!!