Cornea #6

We're back home from a place we've been too many times before.  23 times we've had Hazel under anesthesia at this surgery center --  18 total eye surgeries and now cornea transplant #6.  Just typing it all out makes me tired and that's just for things we've done at this facility...not including her head surgery, ER visit, ear surgery, tooth extraction and annual MRI visits.

All before she has turned 5.

We haven't been to the surgery center since the first of the year and we weren't all that excited to be back.  We arrived in the morning and it felt oddly good and bad to be greeted by a staff that has known Hazel since she was still in an infant seat.  For the first time, Hazel picked out her outfit instead of wearing her PJs and was more interested in observing everything (Nervously and cautiously) than her toys or shows.  When the time came to change into her surgery gown, put on her medical bracelets and do the pre-surgery eye drops she fought a little bit but did the best that she could.  

Unhappy camper

Mommy and Hazel waiting to start surgery

The cornea transplant itself was not complicated in the grand scheme of things and went really well...it might just be that we are accustom to the work that comes with the best cornea surgeon in North Texas :)  After the surgery, we were told that the likely cause behind the build-up in her eye is an infection that took hold in the week before the surgery.  Not much that could have been done to stop it, just bad luck apparently...which made sense but also doesn't help us sleep any better at night.  It's just hard to understand why this happened to her when this eye has already been through so much.

Unfortunately, waking up from surgery was a major struggle and getting a determined 40-pound Hazel to calm down is harder than you'd think.  When she wakes up she doesn't like all the wires and monitors and always complains about them...but this time she was hell bent on getting the IV out of her ankle at all costs.  It was like her and I were sparring in a heavy weight title match for what seemed like forever.  To complicate matters, you can't safely take an IV out while her leg is thrashing around...so we had to hold her still for a solid 60 seconds until it could be taken out and bandaged up.

Not an ideal, smooth way to wake her up...but everything looked good today in post-op.

Sisters together at day-after check 

We're happy to be home but hearing Hazel know the word "Surgery" and asking not to have surgery was hard for our hearts to take.  At least now we can tell her when we are NOT going to have surgery, but unfortunately the stitches in her eye will need to come out and we will have to go through this all over again -- and she knows what it involves.

Thanks to everyone who is praying for our little warrior, she's as tough as they come.  

Back in the Saddle

Hi everyone.  Feels like a long time since I've gotten on here to write...mainly because it's been half a year.  As recently as last week I thought that I needed to write some updates on Hazel and our growing family just so everyone can keep up -- but unfortunately, more health issues are the driving force behind this update.  I'm going to start with medical and end with a family update...time sensitive things get priority.

Team effort at a recent eye exam

As a reminder, Hazel lost a battle in January when the retina in her right eye detached and we were not able to reattach it long-term.  The right eye has always struggled and fought our efforts to fix and strengthen it...so ultimately, making that eye healthy just wasn't in the cards.  Hazel has relied on her left eye for most of her life, but losing vision in the right eye just made it official. 

Wednesday afternoon we noticed that Hazel's right eye started losing pressure, was leaking lots of clear fluid and looked washed out.  We were able to get her looked at early this morning (Thursday) and a build-up behind her cornea caused a protrusion...which was the culprit.  Even though this eye is not functional, we can't have an exposed hole like this...so Friday morning we will be back at the surgery center to do a cornea transplant.  This will be her 6th cornea transplant...with 5 of those happening in this eye.

Probably goes without saying that this was a swift punch to the gut.  We already lost vision in the eye and now it's still haunting us from beyond the grave...it's just demoralizing.  Hazel is almost 5 and she understands where we are going before we even leave the house with context clues.  Today was just an exam and her nerves overtook her for the better part of an hour because she thought it was a surgery.  I have no idea what to expect tomorrow when it's the real deal and not a dress rehearsal.

Need prayers for calm nerves, focus from the medical teams (Doctors, nurses, anesthesia) and that she wakes up from the surgery smoothly.  

Before Wednesday, everything in our house was running smoothly...or as well as can be expected with 3 kids under 5 years old.  Hazel and Sawyer both love being big sisters for their new brother (Barrett), who is now 3 months old.  Updated picture of the little crazies is below for everyone.  

Hazel and Barrett

Sawyer First Day of School

Slippery Slope

The last 3 months have been a roller coaster ride for our family.  Leading up to Thanksgiving of last year, things were pretty quiet on the surface until an exam under anesthesia severely altered our path and put the health of Hazel's right eye on a slippery slope.  I don't expect anyone to remember the timeline, but I think this is all very important to understand how we got to where we are today:

• Mid-November: Exam under anesthesia shows scar tissue and fluid near retina in back of the right eye.

• Late-November: Surgery to remove scar tissue and fluid.  The retina is partially detached for the first time.

•  Early-January: Office visit confirms what we feared, that the retina is fully detached.

• Mid-January: Three-hour surgery is able to attach the retina and glaucoma tubes are not needed (Moved away from her eye center).

• Late January: Hazel passes basic visual tests for seeing light in her right eye, trauma has impacted her eye sight.

• Late-February (Last week): Eye surgery 18 to remove glaucoma tube that drifted out of place again.

Well that brings us to today, everyone following so far?  

Overall, the surgery from last week went really well and was significantly shorter than Hazel's last few times to the Surgery Center.  Dr Smith (Glaucoma) was able to go in and remove the tube as planned but also decided to remove the plate that is attached to Hazel's eye...it was also out of place and did not have an immediate purpose.  Not all bad news, but it meant the surgery was more intensive and adds a little more discomfort for Hazel.  After a short stint in the waiting room, Aubree and I were called back to the recovery area where Hazel was wrapped in warm blankets and still not ready to wake up.  

Daddy and Daughter in the waiting room

Sleeping it off in Post-Op

At this point, we still had not had a chance to connect with our Retina Surgeon, Dr Spencer, but we were pretty sure he was able to fit Hazel in today for an exam of her retina in the OR.  He eventually found us in our recovery room and had some bad news to share...the retina he very carefully and painstakingly attached in January was fully detached again.  

The news was hard for him to deliver and our eyes welled up with tears almost instantly.  The good mood from a quick and effective surgery vanished.  We know what this means.  We won some battles with the right eye but it is likely that we just lost the war.

There is no immediate action we are planning to take with Hazel's right eye, but you can't just go in an try and attach the retina over and over and over...you just can't.  Having one full detachment crippled her vision and likely turned it from functional to a last resort if something happens to her left eye.  Two full detachments in the same two month period is catastrophic.  Dr Spencer said he wanted to take some time and think over what steps to take next, but the reality of our situation is now that Hazel is likely down to only having vision in her left eye.  In the immediate future, Hazel's quality of life has not changed and she almost exclusively uses her left eye...so minimal adjusting for her day to day.

Snacks and a show -- waiting to be discharged

There are lots of other positives about her vision and I could list them off here....but in all honesty...I just don't want to right now.  But...I will share is that March 2nd will mark THREE YEARS since we have needed to do surgery on the left eye and we need that streak to continue.  Please pray for Hazel to continue this streak and that her left eye is healthy long term.  

I'm 100% sure that this news is going to discourage people who have followed Hazel, but we are dealing with this news better than you probably think.  After 4+ years of hard decisions and intense conversations we are better equipped than ever to handle this type of news.  We lean hard on each other and even harder on God.  

Until next time...

New Adventures and Beaten Paths

I've had a blog in mind for a few weeks now with the intention of writing about our family without it being a medical situation...but unfortunately those world's have collided once again.  Let's see...I'll start with the medical and go from there...

Last month, Hazel had a very important and lengthy surgery on her right eye and part of that procedure involved relocating tubes in her right eye that previously helped control her glaucoma and eye pressure.  At an appointment on Monday, Dr Smith was able to see that one of the tubes had shifted slightly and is out of position -- which needs to be corrected with a surgery.  So tomorrow morning (Thursday) we will be back for Hazel's 18th eye surgery.  This will not be terribly invasive since the plan is to cut back the tube and only leave the plate that is on her eye to use in case of future emergency.  We have had great experiences with the anesthesia group at the surgery center but any procedure has risks and Hazel is old enough that she gets nervous in the pre-op area.  In some ways seeing her mind race and struggle with anxiety is the hardest thing to deal with as her parent.  Prayers for all this would be great if you have 5 spare minutes.

Apart from the surgery, we have some new adventures happening in our family.  Namely, that if you haven't  heard or haven't seen Aubree lately...our girls have a baby brother on the way!  Baby boy is due at the end of May, so we still have some time but not a lot of time.  A week or so ago we moved Hazel and Sawyer into the same room and we are talking more about little brother but it is still very possible that they won't like someone else getting all the attention.  Especially Soy (Sawyer) who will only be 20 months older than her bro.  Life is going to get even more crazy than it already is but we are really excited to meet our little guy.

Aubree has also started as a market partner for Monat, a company focused on all-natural hair care.  She started using the products when this pregnancy started to damage her hair and she really loves the product.  I'm not bringing this up to sell anyone...but instead to share an impact it has had on her spiritually.  Aubree is excited to share the product, flash sales, before/after pictures and stories from consumers...in a lot of ways it has helped her discover a new boldness for sharing.  Selling Monat has given her more confidence to share how God is working in her life personally.  It's not all Hazel experiences all the time, some times it is something as simple as talking in our Grow Group discussions or checking in with friends to see how THEIR week is going. 

I'm doing my best to summarize her feelings but I'll also steal one section from her Facebook post...

"He made us all, perfectly imperfect.  I want to speak to our 'imperfections'.  Those are from God y'all.  It may be weakness of will, a physical ailment, a particular sin we struggle with.  God allows these in our lives, not because he is vengeful or because he is picking on us.  He wants to draw out attention to Himself, to show we need Him."

As per usual, our family has a lot going on but it never ceases to amaze me how you can see God work in your life...in all aspects of life...if you are prayerfully considering how his glory can be seen in it.

More updates to come on the procedure tomorrow...

Prognosis

Well, it's been 11 days since Hazel underwent a 3-plus hour surgery to try and save her right eye -- I do mean TRY, because nothing about this situation is guaranteed.  Sorry for ripping the band aid off in sentence one here...but this update is as much for documenting her progress as it is to help everyone understand Hazel's prognosis and hopefully to address some common questions that we hear.

Last Friday (one week after the surgery), Aubree loaded up Hazel and Sawyer to tour the metroplex with post-op visits.  First was a hike out to Fort Worth to see our glaucoma surgeon, Dr Smith, who did a check of Hazel's eye pressures and a visual inspection of her progress.  The eye pressures were good and in a standard range (15-20).  Closing off the tubes in her right eye to counterbalance the anticipated drop in pressure from the retina surgery paid off...and her right eye pressure nearly doubled.  Check point one went off with out a hitch with another post-op visit to see Dr Spencer after lunch to talk more about her retina and overall outlook.

We don't have as much exposure to the retina and back-of-the-eye surgeries as we do with glaucoma and corneas...so some of the news that we get from her retina specialist is just new to us.  Everything is more complex in that small space and you can't tell much about the back of the eye without an advanced degree and what I can only assume is very expensive equipment.

The first test for Hazel is a simple one, the nurse covers her strong eye with a tissue...turns off the lights...and shines a flashlight to test what she can see.  Hazel is known to be a bit of a cheater in these games and would rather be right than honest...like kids do.  But we know she has a red-reflex in her right eye and she gets the question right a few different times when asked if the light is on or off.
Dr Spencer did note that there is some blood in front of the retina, but that's not unusual for this type of procedure.  The expectation is that it will resolve itself and go away naturally.

Aubree and I don't do well with fluff or talking around issues, especially in medical situations.  So when the exam portion was over and it was time to talk future Aubree was blunt in asking about Hazel's prognosis...here are some key points:

• The chances of the retina staying attached is 50/50.  There has been a lot of trauma in this eye and any number of things can cause harm.  This means avoiding things that can alter eye pressure...no trampolines where you can land on your head, no sports where you can take a ball to the head, no swimming and in our case, try and avoid your 15-month old sister who has learned to grab you in the face.

• The right eye has gone through a lot of trauma...and at this point there is no expectation that it will catch up with the strength of the left eye.  What she will likely have in this eye is called "Ambulatory vision"...if you're like me this term didn't mean much at first....but it means her level of vision in that eye would be blurred.  She will likely be able to see large objects, colors, light, etc...in my mind this will mainly be a peripheral vision for her in most day to day situations.

When we found out the retina was detached, we knew it was bad and we knew it would be hard to reattach but I never knew what to expect after that point.  It's hard to explain to people that Hazel is doing well after surgery, that the surgery went as well as it could, that she is having great post-op checks and that she can see light out of that eye....but that the bar has just been substantially lowered for her.  It's been tough to handle.

As much as I wish there was an FAQ section of Hazel's blog, the questions we ask and the answers we get about her prognosis can change daily.  There is no crystal ball to tell us what to expect, even with surgeries that are common.  I'll be honest, I'd love to stop blogging about her...I'd love to have nothing to report...but we won't know when that day is until it is far behind us.

I should be clear...you can always ask me about Hazel and I'll tell you all about her or answer any curiosity questions.  Her story impacts a lot of people and I want anyone who asks about her to know whatever they want to know.  But I also want people to understand this is a daily struggle, a daily responsibility that Aubree and I carry with us...we don't know where the finish line will be.

We're just taking it a day at a time.

Not Out of The Woods...Yet...

So apparently my last post caused more than a few tears for all of Hazel's Prayer Warriors and you know, maybe that's not necessarily a bad thing.  Hazel's overall situation is just as serious today as it was yesterday but today is a day for celebrating and praising God for the work He is doing in her life.  No tears today, people!

WE ARE HOME!  Let's just call that praise numero uno.  Today has been a really long day and despite how many times I've heard the episode of Clifford the Big Red Dog that is on right now...it's like music to our ears.  The patient is sleeping away on the couch with her left eye occasionally opening the minimum amount to see the TV...with a new trendy outfit composed of a large white eye patch, puppy-themed surgical gown top with a woven grey jack over it, PJ pants and silver high top sneakers that she refuses to take off.  

Whatever man...you do you Hazel.

Glad to be home

Sleeping it off in post-op

Honestly I'm not really sure where to begin with recapping the details of today, especially because Hazel was under anesthetic for three hours and thirty six minutes.  The goal today was for Dr Spencer to reattach the detached retina and a few other minor things that contribute to that end goal.  At the beginning of the procedure, he noted that a tube in Hazel's eye (that was implanted long ago to control glaucoma pressure) was loose and a cause for concern.  Praise number two is that Dr Smith (Glaucoma) was in clinic this morning and was able to come into the operating room to consult.  We had not seen Dr Smith this morning until she came into the waiting room.  It's not uncommon to see Hazel's other doctors there as they meet their other patients...but as Dr Smith walked through the room we realized that she was walking towards us...to our surprise.  We talked through the situation and the options with her and settled on tucking the tube below the eye and cutting off flow to the other tube in the eye to counteract the reduced pressure that will happen due to the retina surgery.

For adults, it doesn't really matter that you lose a little bit of eye pressure when you have a retina surgery because it has minimal impact in the grand scheme of things.  In adults, your body bounces back.  But for someone like Hazel who has glaucoma and tubes to regulate pressure...you have to factor in how all these surgeries and fixes coexist in a space as small as her eye.  Thank God for people who are smart enough to not only explain this in english to us but who have the skill to make it happen.

After that early consultation it was all a waiting game.  Minutes turned into hours and we had a few check-ins from the medical staff but no real updates outside of estimates on the time remaining.  Three hours into it we were called in to meet Dr Spencer.  He walked into the consultation room looking more positive than pessimistic and quickly let out a large sigh followed by a smile.  Aubree and I laughed nervously, not knowing exactly what that meant.  

"I'll tell you, that was tough.  I almost gave up on it 2 or 3 times..the detachment was really, really bad.  But we got it fully reattached".  

I hope it's pretty dang obvious that this is praise number three.  I'm paraphrasing a bit of course, but this news...while positive...hit home on how thin the margin for error was today.  He did go on to say that the result of the surgery turned out better than he could have hoped, but unfortunately I think that means this was a tough case and the bar was really low.  I want to be clear here...we are not out of the woods.  This was the outcome we wanted for today but the health of this eye is still very fragile and will need daily monitoring to see how Hazel's body reacts.  It makes me want to wrap her up in bubble tape and keep her away from society...but she is 4 and has the energy to play for days.  We'll deal with how to channel that energy tomorrow...today is a good day for a fireplace, some tv, some comfort food and some rest.

Paul put our experience this week and today into words in 2 Corinthians 12...

12:7b. "Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me.  8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Today feels like answered prayer.  Amen to that.

Where We've Been

Happy New Year from Hazel

If you don't know me outside of this blog, I'm a nerd in a handful of ways.  Not like the good kind that is ultra smart or can help you with your math homework...more like Dad jokes, discovery channel and Microsoft Excel.  Over the Christmas break, I went back through the 58 posts from The Hazel Report and recorded all of her medical history where emergency care or anesthetic was involved.  Even with a period from January to November 2016 where I was too tired of all this to blog, the numbers are pretty staggering:

Service Type	Count
Ear Surgery	1
ER	1
EUA	7
Eye Surgery	17
Head Surgery	1
Tooth Surgery	1
MRI	4
Total	32

17 Eye Surgeries, 7 Exams Under Anesthesia and 8 other major medical events.  I wish I was here to report that this is a finalized list but alas....it's not.

Aubree and I try not to focus on where we have been but always looking towards where we are going with Hazel's health.  The critical time in a child's life for someone who has eye issues like our girl is really between birth and age 10 or so?  The question mark is because it's just an educated guess when you are dealing with something so rare.  This is the time where the eye develops, where the body adjusts and where investments (surgeries) can pay dividends (eye sight) later.  This is a fragile time of life for us.

Just after Thanksgiving this year, Hazel had a surgery on her right eye to do a number of things but one result of the surgery was to reattach a partially detached retina.  The purpose of the retina is to receive light that the lens has focused, convert the light into signals, and send these signals on to the brain for visual recognition.  No retina...no sight.  Last week when we got home from a visit to see family for New Years, we patched Hazel's good eye and it was really clear to us that nothing was coming through.  She couldn't find our Christmas tree in the room...she was feeling around for tables and walls...we would ask her to identify things and she would just reply "no thanks".  

A day later Aubree took her to get a sonogram of her eye and our worst fears materialized for the first time.  The retina is fully detached.  Somehow Aubree was able to keep it together and go back to the work for the afternoon.  I spent the first 15 or so minutes of my lunch break sitting in the parking garage at work wondering how long I should wait to make it look like I haven't been bawling. 

We've been through a lot and we know how to stay balanced and focused with our decisions and what the road map looks like to give Hazel the best treatment.  We weigh risks, we do our homework, we talk to all the people that we can to do our job as Hazel's parents.  But there's not a great way to spin this or to see the glass as half full.  No, this is not us giving up....it's just..........the prognosis for kids like Hazel who have a fully detached retina is not good.  Losing sight in that eye is now very real.  Right now Aubree and I are hurting, doubting and (speaking for myself) feeling depressed.  Despite how we feel, the morale in our house is still pretty good because the person who should be complaining the most doesn't complain at all.  Hazel is happy, her laughter and joy are infectious...it's hard not to feel the same way as her when she puts a big smile on her face.

There is a lot more I could say but I don't think tonight is the night.  For now, I wanted everyone to know that we have surgery scheduled for Thursday, January 11 to attempt to reattach the retina.  We will take it one step at a time from there -- more to come later in the week.