Checking In

Hey Everyone.  It's been a few weeks since Hazel went though another cornea surgery and I get questions pretty regularly about how she is doing...which is probably a less-than-subtle hint that I should publish a quick update for everyone!  If you're keeping score at home, this was her 5th overall cornea surgery...which breaks down into 4 cornea transplants in the right eye, and 1 cornea transplant holding strong in her left eye since 2013.

Day After Surgery - Cornea Transplant #5

Overall it's not hard to say that Hazel is doing really well despite having some side battles with things that normal 3-year old gets to battle during the shifting season of cold/warm Texas weather.  She had a double ear infection this month and a short period where she had a fever and stayed home from school with some stomach issues...not great things to add to the list when she is just trying to get back to the normal flow of life.  But I guess in some ways the normal flow for Hazel still involves lots of extra junk.

...ear infections, cornea surgeries, fever, surgery post-ops, tummy aches, exams under anesthesia....

What's normal for Hazel is not normal for everyone, but for now she doesn't know it and she does the best job that a toddler can do to be cooperative.  She is a happy kid in spite of all she endures.  My hope is that one day all this activity slows down and normalizes...that Hazel can spend her time being concerned with trivial topics like seeing a Disney Movie or going to the park instead of having another trip to the surgery center around the corner.  Only time will tell.

So what's next?

We have appointments with our ophthalmologist later this month to see if it's time to start patching her strong eye in order to strengthen her weak eye.  In the same week we will have our third post-op visit to Dr Bowman to check on the health of her cornea and the red reflex that you expect to get from a clear, healthy cornea.  After that, we will likely schedule an EUA to check on her eye health, get eye pressure measurements and remove the sutures in her eye -- possibly in late March or April, but that decision will come after meeting with Hazel's medical team.

I'm no more jaded today than I was three years ago that Hazel has the support that she has.  She has medical support, family support, friend support and the support of prayer warriors who lift pray for her weekly or more.  One day I'll be able to tell Hazel about the countless people who love her and care about her well-being, I imagine that once she can grasp the concept that will be a special day for her and for her mother and I.  So if you're in that group that still prays for her, I am thankful for you and thank God for you.  We're three and a quarter years into a long journey and there is still lots to do.

Until next time...

Take It From The Top

I feel like I'm running out of ways to recap surgery days, but I think it just comes with the territory of writing enough of these things over the last 3+ years.  I suppose that this blog is as much for me as it is for you, I can barely keep up with everything that Hazel has gone through and the dozens of times we've sat and talked with our doctors about the current health of Hazel's eyes.  At the very least it's a good way to document things, like Hazel's fifth cornea transplant :)

Today was different in a couple of ways from what we're used to at the surgery center, mainly that we did not have to arrive until 6:30 a.m. -- a fact I wish I knew when I woke up about half an hour too early.  Typically Hazel is first on the surgery schedule, but with increasing demand and the short turnaround time for this surgery we were just happy to be on the list.  After about an hour in the waiting room we found ourselves in the pre-op area where Hazel now has her own routine of putting on her "bracelets" (medical bands) and using the "blue pem" (purple marker) to draw on them.  There  were very few tears this morning and Hazel was in surprisingly good spirits, I'm not sure if it's because we've gone there 4 times in under 3 months or if she just had a good morning of being brave....either way, it was kinda nice.  Dr Moore is our anesthesiologist who came from a background working in pediatrics and it's been really nice working with her for the past few months instead of getting a call from (fill in the blank) doctor from generic anesthesia group -- it just helps to build a rapport and fine tune the methods that work best for Hazel to go to sleep and wake up.  Plus, Dr Moore has toys and plays Paw Patrol on her phone -- our tiny patient approves of these methods.

The agenda today was to remove from blood and excess fluid that is present in the right eye, do some preventative work on the blood vessels to stop future blood issues and to put on her new cornea.  The procedure took about 90 minutes and Dr Bowman grabbed us from the waiting room with a spring in his step and a smile on his face.  "It couldn't have gone any better" was the exact phrase he used to start our recap discussion...the red reflex in her eye came back STRONG and that's really exciting for us since the clarity for light to reach the back of her eye is so critical.  Her eye pressures were both below 20 today (which is great, but below the norm for her), so we suspect the anesthetics and timing of taking the pressures might have skewed the numbers but we are still happy to hear the news.

Today was the part that we can't do without Hazel's team....tomorrow is the first day where persistence and practice are the name of the game for Aubree and I.  Hazel will have a few days and weeks to let her eye heal before we start doing any sort of patching or strengthening exercises but we're still just hopeful that this surgery is a longer term fix than the previous attempts and that she gets a window of opportunity to see what she can do with the right help.  We're hopeful and anxious and proud of our little girl, she was an all star today.

Until next time...

Back to the Drawing Board

If you've been keeping up with Hazel and/or the blog, you know it's been an active 2-3 months for our lil' bug.  She had cornea transplant #4 on November 30 (This is #3 on the right eye)...in December it was a mysterious fluid in her right eye that scared the junk out of us (turned out to be blood)... and an exam under anesthesia in January to get a closer look at the right eye.  Since that time we've been back again to the surgery center for another exam under anesthesia and unfortunately there is still more that Hazel needs in order to improve her vision.

We took Hazel to have an exam on February 1st when the blood in her eye was not dissipating like we hoped and thought it would do naturally.  This time around we had "The Big Three" of Hazel's eye doctors all in attendance to look at her corneas, glaucoma and to update her glasses prescription...I have to admit, it was really cool for us to get to see and talk to all three in one day.  These are busy, in-demand doctors and seeing them all on the same day made us know how much care and support Hazel has every time she goes back.  The end result of the EUA was that the cornea from November was starting to get cloudy and the blood/fluids that are impeding her vision are still lingering.  Cornea transplants on kids is really tricky and their hyper immune systems just don't like foreign substances...so the best guess right now is that the attempt to remove the blood and the complications from the surgery causes the cornea to be rejected.  

Tomorrow morning (2/13) we are taking our girl back to a place she's been too many times before to have a procedure on her right eye that she has had three times before.  We are really, really hoping this is the last time we have to do a cornea transplant and that her body doesn't throw us any curve balls.  The silver lining with corneas is that there is a high supply available and (in Hazel's case) there is not a limit on the number of times we can keep trying new corneas if it is really necessary.  There IS a finite window that we have to strengthen her right and every time we put in a new cornea and it only lasts for 3 months....6 months....a year....it just ends up being lost time.  

On top of everything else, Hazel currently has a sinus infection and an ear infection...just in case upcoming surgery isn't enough.  So prayers for her health and a calm demeanor would be really appreciated along with prayers for our surgeons, anesthesia team and the support staff.  

So I'm back here blogging for the 51st time, asking for everyone who has been running a marathon with Hazel to run a little further and pray a little more.  I'll get updates back out as soon as I can...

Getting Back on Track

Well, if you missed my last post than you might not know that Hazel made another trip to the surgery center on Wednesday (1/4) to do an evaluation under anesthesia.  This was a follow up to her cornea surgery in late November, but was a week ahead of schedule due to some complications.

We knew going into the day that the main components of her eyes were still in really good shape...including the back of her eye which is hard to evaluate, even under anesthesia.  What we didn't know was the source of the fluid in her right eye.  Lucky for us, we have good surgeons who have dedicated their personal and professional lives to helping kids like our daughter.  It's hard to express how lucky we are to live where we live in terms of medical know-how.

As it turns out, the source of the fluid that was clouding her vision came from a blood clot.  They can't say with 100% certainty why there is a clot to begin with, but the best guess at the time of the exam is that it could be from the re-positioning of her glaucoma tube or the patching needed during her November cornea transplant.  At the end of the day, finding the source would just be an answer to a question...but it doesn't really matter long term.  Dr Bowman and Smith agreed that the best course of action was to make a small incision behind the cornea and remove a "sheet" of the blood from the upper half of the eye to immediately increase her field of vision.  The remaining portion is likely coming from the source of the blood...which needs to heal and resolve itself.  Your eye could do this part naturally over time, but they also added a slow-release steroid to expedite the process.

Thanks to everyone who is praying for Hazel so constantly and consistently.  I know people were praying specifically for her transition waking up from anesthesia and this time it went a lot better...so thank you for being there for Hazel.

The reality here is that none of these evaluations and surgeries to help Hazel's ailments are fun or happy or bright.  They're just not.  But this outcome is one of the better ones that would could have hoped for -- there are a lot of unknowns for Hazel and finding a problem that has a solution has to be taken as an optimistic sign.  One other bit of good news is that her stitches from the cornea surgery were able to come out ahead of schedule, which eliminates a need for another EUA next month.

Overall, I think I'm just anxious to get things back on track for Hazel.  She is going to have multiple EUAs each year and every doctor wants her to check in every few months.  It's a lot to do and a lot for a three year old to handle...physically and emotionally.  But my hope is that she can put together some good months, followed by some check-ups that have positive news so she can just be a kid.

Until next time...

Nothing [Worth Having] Comes Easy

Hello and a Happy New Year to you and your family.  I have a quick update that I wanted to post about Hazel since she is going back in tomorrow for an exam under anesthesia...

Hazel has been doing pretty well overall since her cornea transplant on November 30, if you remember from my post-op blog post she was back in action and riding her tricycle the afternoon of her surgery.  Since that time, our focus has been on keeping up with eye drops and refilling prescriptions -- all things that we are used to doing.  One thing we know needs to be done to strengthen her right eye is to put a patch on her strong eye for 1-3 hours each day.  Typically, Hazel can still function and play and find toys around the house without much trouble while she is patched; she doesn't like it but most days a small cup of popcorn or some fruit snacks will win her over as a reward.  Last week Aubree patched Hazel's eye for the first time since the cornea transplant and Hazel was calm and cooperative...until she missed a doorway and ran into her bedroom wall.  We didn't know what to make of it and Aubree held her hand as we walked into the living room...I stood silently by the fireplace as Aubree walked her to within an arm's length and asked her to find Daddy.  Her head swiveled around, scanning the room for me but it was pretty obvious that nothing was happening.  We brought her favorite books over and asked who she saw on the pages...she guessed a few of her favorite characters but they were only guesses.

The next day we spent a few hours driving through the metroplex and visiting a few of Hazel's doctors and getting consultations.  After a visual examination of the eye and a BP scan (Sonogram of your eye), we discovered that she had a fluid in her eye that was clouding her vision.  They don't know if it is a membrane or scar tissue from the previous surgery yet -- but that's why we are taking her back to the surgery center tomorrow to find out.  There was no structural damage to the cornea, her retina or the vitreous cavity in her eye -- all important players in her eye health.

I feel better today knowing that her eye is still healthy and that the (likely) problem here is just removing that fluid...but for that 24-36 hour period, it was hard not to imagine worst case scenarios and let your mind wander to places it's better not to go.  Nothing worth having comes easy, and for a curious 3-year old who loves life and exploring new things there's not many things more important than her eyesight.  We'll keep doing everything we can to take care of her along the way.  :)

Updates coming after the EUA tomorrow, we'll be there bright and early at 5:30 am.

Cornea Transplant 4 Recap

I am a few days late on posting an update, I started this post from the surgery center on Wednesday and pieced the rest together over the weekend.  Sorry for the delay!



Wednesday 11/30/16
I hate being here, no offense to the surgery center, but sitting in this waiting room anxiously passing the time, trying to escape via music or Instagram or texting or whatever...we've just been here too many times. I've lost count of how many times Hazel has been in this scenario. We used to keep her tiny gas masks at our house, thinking it would be a neat memento and reminder of all she has endured...but after you get past 15 or 20 masks they just become sad reminders instead. I think in lots of ways we have just learned to look to Hazel's future and not fret about the past.  Sitting here as the sun rises, surrounded by people waiting for their elderly patients to be done with their surgery while we wait for our frequent-visitor toddler...today is just tough.

Alright, I said three years ago this blog is 98% Hazel and 2% for Aubree and I...think I've used up my talking space.

This morning is Hazel's fourth cornea transplant, she's had one in her left eye and this is the third in the right.  We have 1 or 2 tricks up our sleeve for keeping her calm before going back to the O.R. and honestly, she did better today than most days. The nurses now call her medical bands "bracelets" and we draw little stars on them, Hazel voluntarily let's us do her pre-op eye drops, the new anesthesiologist brought her a puppy toy with a tiny pink crate.  I also owe a special shout out to "Christmas Monkey" (Curious George) and Daniel Tiger on the iPad.  This is a method that has been refined over time :)  This time around, they had Aubree walk back with her to the O.R. to help the transition of using the gas mask and getting her to sleep.  The staff said it made a difference and this time was better...but if this is better it makes me really sad about how poorly she usually reacts before going under. Maybe it's just a blessing that we haven't had to experience her raw emotions and her reaction when the procedure begins.  Not sure I would of handled that situation with as much grace as my wife.  At the end of the day, these are necessary surgeries and no 3 year old would be excited to willingly participate.

About 90 minutes after going back, we got a recap from Dr Bowman and Dr Smith.  It was a two-part procedure...her glaucoma tubes needed to be re-positioned since they were slowly moving out of place and getting clogged in the process. A scary number that we anticipated today is her eye pressure was up to 40...if it wasn't surgery day this would be a horrifying situation...but with her tubes cleared up we expect that number to drop by more than half. Anywhere in the low to mid teens is ideal, but 25+ is when the warning alarms start sounding. The new cornea also went on without any issues with the exception of one or two blood vessels that will make her eye more red than normal for a few weeks. It looks bad but the blood doesn't make it any more painful. I suddenly feel like I'm being too robotic about this....THE SURGERY WAS A GREAT SUCCESS!!!  One of the tubes that needed to be re-positioned was causing irritation and pain for Hazel...which means this surgery will be a serious improvement on her quality of life.

Exhausted and asleep after the procedure

The only hard part this time around is that Hazel had a really, really rough time coming out of anesthesia. The longer she is under the harder it is for her to normalize, but this was something else. She was focused on ripping off her eye patch and refused to be distracted or reasoned with...she is a year older now than her last surgery and the recognition skills of a three year old seem much further along. We spent about an hour playing defense and keeping her hands out of her face until she finally went to sleep with the aide of some additional meds and what Dr Bowman deemed the "Civil War bandage treatment" for her head. It was physically and emotionally draining...Aubree and I were both stressed at the situation and each other.  Tears were shed by patient and parent, toddler punches were thrown, but we made it through to the other side.

At this stage we're just trying to be diligent with her recovery plan and eye drops. Once the sutures are removed in January our prayers will be aimed at the future and that transplant 3 is more successful than cornea 1 or 2.  I don't know if we can keep up the pace of one cornea transplant in her right eye per year. It's just too much for her. It's too much for us... we just want this one to last for a few years.

Back on her bike by the afternoon

Anxious to hold little sister at the house

After three years of posting I am as grateful now as I was in 2013 that so many people pray for Hazel and for us. Praying for situations that are difficult can make you question why things happen in the first place but I can tell you from my experiences that Hazel's story has produced more positives and reasons to praise God than anything else. Life is just tough...but it doesn't have to feel that way if you surround yourself with supportive people and realize that there are some things that are far beyond the control of any one person.

Until next time...

Warrior Hazel at her post-op visit the next morning

Big Sister Hazel

Wow, this is officially the longest period of time where I haven't posted a blog update for the Hazel Report, but maybe that's a good thing.  The turbulent waters that Hazel was born into are calming down as she gets older and I think it's fair to say that her vision and hearing loss are now more manageable...not that any of this is really in our control, but we can keep her up to date with check ups and therapy and all that good stuff.  Unfortunately, today is not one of those days where I get to pop on and tell everyone how great it is going...after three long years, our little girl still fights every day for things most of the world gets to take for granted.

Sorry, I wanted to rip off the band-aid first and post a disclaimer that not all news is good news today...so let's get some positive vibes out there and then I'll come back to what's on the horizon for Hazel.

If you didn't already know, Hazel is now a big sister...a very, very proud big sister and her focus each day is 50% dedicated to "Where is Sawyer??" and giving her dozens of kisses on the head.  Our little girls will share the fun fact that their birthdays are one day apart as Sawyer Elizabeth came into the world three years and one day after her sister.  We weren't sure how Hazel would handle sharing the spotlight, especially because she is behind on her speech due to her hearing loss and other factors; this means she is behind on her ability to rationalize, communicate and have things explained to her in a way that she can cope with changes.  In any case, the Lord knew how much we struggle with explaining concepts to Hazel so he just went ahead put love for her little sister directly into her heart.

We were also excited to be a (small) part of helping spread the word on Fearless Hope, the non-profit organization founded by our close friends Dallas and Chris Fears.  Their daughter Finley was born blind in a similar manner as Hazel and NBC 5 recently did a feature story on the foundation and it's origins, so I wanted to share a link below.  We are also attending the Fearless Hope Gala this Saturday 11/19 to raise funds dedicated to helping other families of visually impaired children, to hear encouraging stories of hope from others and to spend time with those who support these special kiddos.

Video: http://fearlesshope.org/fearless-hope-story-on-nbc/

Fearless Hope Gala: http://fearlesshope.org/gala-sign-up/

Alright, enough stalling..time for updates.  Like a lot of kids with early cornea transplants, Hazel has one strong eye and one weaker eye, in her case the weaker eye has always been the right.  The right eye has struggled more with glaucoma and eye pressure, it is the eye that usually requires more attention, more eye drops, more surgeries, the list goes on...  To this point, the right eye is also the eye that already had one cornea fail and needed a second cornea to be put in right around this time last year.  We don't have a concrete reason why this imbalance exists, but its a trend that seems to happen for kids like Hazel.  This morning we went in for an exam under anesthesia and the report is that the right cornea is cloudy, the corneal wall is too thick and the whole cornea is failing.  So now we are looking at cornea transplant number three on this eye.  We still have time to help her right eye gain strength and develop, but the more times the eye rejects a cornea or her ability to take is light is impaired the odds of having two healthy eyes reduces.  She is only 3, so this isn't a time to sound the alarms and panic, but Aubree and I both know we need to dedicate the time it takes to do things like patching her strong eye every day.  I'm praying that as she gets older we can reason with her more often and she will wear the patch...but it's been a struggle to this point.

The surgery will be scheduled in the next few weeks, so as soon as we can get her back to the surgery center the better.  Today was not totally unexpected but it was still very defeating in lots of ways.  We know that there is never going to be a point of total stability with Hazel, but it still scares us when the ground below us starts to crack and shake.

Fearless Hope

In her first week alive, we took Hazel to see her cornea surgeon for our initial consultation and to get some guidance on how to best care for a child who is visually impaired.  Dr Bowman immediately put us in touch with a family who he said really reminded him of our family -- and that's how we became friends with Chris and Dallas Fears.  The Fears have a daughter (Finley) who has a similar condition to Hazel and was born blind.  Finley has been through the process of learning about corneas, learning about glaucoma and the Fears had a lot of great and insight into how to handle everything as a parent.  Their friendship and support has been a HUGE help to Aubree, Hazel and myself.  

The Fears family is passionate about helping out others and have started Fearless Hope, an organization that is Christ-driven with the goal of providing care for children and families along with emotional support during tough seasons of life.

This Saturday, January 16th, they are hosting the inaugural Fearless Hope Resolution Run (5K and Fun Run) to raise awareness and funding.  The run is in Frisco town square, includes a t-shirt and the cost is $30.

Hazel and parents will be there, the weather is warming up, this will help you meet your New Year's running resolution....what other reasons do you need!? :)

I hope to see lots of people there!

Links:

Run Registration: https://secure.getmeregistered.com/get_information.php?event_id=122905

Fearless Hope Page: http://fearlesshope.org/

Hazel's story page: http://fearlesshope.org/hazels-story/

Cornea 3 Recap

It's been more than two years since the first time Hazel set her tiny foot in an operating room for a cornea transplant, it seems like a lifetime ago to us.  We've lost count of how many total surgeries Hazel has endured, but the fact that someone out there was able to give her the luxury of sight by donating a cornea is not lost on us.  I still remember the first time Hazel looked through her first cornea transplant and saw light for the first time, it's one of my favorite memories and I'm lucky to have captured it with a photo :)

Overall, the surgery went about as well as we could hope.  We got to the surgery center at a few minutes past 5:30 am and went through the normal pre-op procedure...taking weight and height, asking about changes in health, regular medicines, allergies...blah blah blah.  At this point we can answer any questions the nursing staff has before they ask them and know to give Hazel numbing and anti-biotic eye drops.  She doesn't let us put her in a gown or take her blood pressure like she did as an infant, but in some sense it's comforting that she is growing and smart enough to realize and remember where we are.  I'm getting sidetracked... let's move on to the surgery.

Having a healthy eye without a clear cornea is like building a Ferrari and putting frosted glass in place of the front window, it takes away from all the amazing things the rest of the car can do.  This surgery was not the MOST invasive or nervous surgery that we've been through, but it is way up there in terms of importance.  The donated cornea was 4-years old and had a very high cell count (3500), which is a great thing...more cells means more ways to connect and bond with Hazel's cells.  Dr Smith was in the room to go first and re-position a tube that currently helps regulate the fluids in Hazel's eye and fight off her glaucoma.  These tubes and the cornea don't play very nice, so this was a rare opportunity for her to move the tube without risk of disrupting the cornea which was about to get removed anyways.  While Dr Smith finished up, Dr Bowman was on deck and ready to do the cornea transplant.  After about 90 minutes Dr Bowman came out to the lobby and went straight to the corner where Aubree and I always sit; he pulls up a seat from the kid-sized table next to us and delivers the good news....the transplant went great and her eye pressures were in the acceptable range, so we would be able to go back and see her in a few minutes.

One of the big prayer requests from Aubree and I was that Hazel would have a smooth transition out of surgery when she wakes in the recover area.  We made a point to let the anesthesiologist know that the previous exam did not go very well at the end and they made the right adjustments this time around...Hazel was tired and cuddly after the surgery, which is a great alternative to screaming and scared.  We got her home where Mommy and daughter were both able to take a nap and recover from the early morning festivities.  Today Hazel is nearly back to normal and is anxious to run around the house and burn off her energy from a day full of rest.  We have a follow-up appointment next week in addition to the quick post-op check this morning, so hopefully everything will still look good in the coming days.

Thank you to everyone who has been praying for Hazel and sending messages and encouraging thoughts our way.  This has been an unusual month and will be a memorable Christmas for years to come, we are thankful during this holiday season that we have such a supportive group of family, friends and our church family to bless us with such overwhelming support.  We know you all love Hazel and we love you just the same.

In case this is my last blog of 2015, have a very safe and Merry Christmas as we celebrate the birth of Jesus Christ who gave His life so that we might have eternal life. 

Cornea #3 is in

VERY quick post that we are out of surgery and Hazel is sleeping in recovery. More details later but the surgery went as scheduled and now we'll start the recovery process.