Jingle All The Way

Part 1: 

Two weeks later and we find ourselves back in a familiar position. A place where the staff knows our names and have seen Hazel grow up over the last 4 years...where we have started to learn about as much about the nurses home lives as they know about our own.  It’s nice to know and be known to some extent I guess.  Exactly one year ago we were here for Hazel’s 4th cornea transplant and today she is having a less severe surgery in an effort to make that same struggling eye better.  

It’s 9:30 at the moment and she has been in the O.R. for close to 2 hours...a longer wait than we are used to...

Hazel is growing and maturing with every visit here. She is learning how to cope and she communicates better than ever about how she feels...what would make her comfortable...what her options are in any situation. Today when it was time to go back to the OR, the anesthesiologist and OR nurse found out that Hazel likes to sing Jingle Bells and likes to find that ornament on our tree. She didn’t want to be held and didn’t want to walk so she chose to sit on the rolling bed with her toys...as they rolled down the hallway with jingle bells playing on the nurses phone :)

More updates soon...

Part 2: Post Op and Beyond

It's the day after surgery and things have settled down.  Shortly after I wrote and published Part 1 of this post we were met in the waiting room by Hazel's surgeon who gave us a brief reports and brought us back to sit with Hazel in post-op.

The procedure itself was the first time we have done anything in the area of her retina in the back of the eye.  The membrane that was clinging to the area was multi-layered and took a lot of diligent work to remove --  in the words of Dr Spencer, it was a "tedious" surgery to complete...hence, the time.  What could not be seen until some of these layers were gone was that the retina had actually detached near the base and surgically placed back into position.  We were not expecting the retina to be detached because it never showed in her exams under anesthesia, but the positive view of this is that we got her back in for surgery so soon and now we can work towards resolving it.  

Hazel took longer than normal to come out of the anesthesia but I think we also came back sooner than we normally do.  As per usual, the nursing staff was amazing and always takes care of our girl.  It's always a mystery about how Hazel will react when she wakes up, I think this time around we got the sweetest...calmest....most reasonable version of post-op Hazel that we've ever seen :)  She was still barking out orders of who could sit on the bed and who should stand, when she wanted Cheerios or when chocolate milk was in order...but I'll take bossy over upset any day.  

Mom and Patient

This part might be more info that everyone needs....but, well...whatever...I'll make up for it with a cute picture below.  Hazel threw up in the car for the first time following any kind of trip to the surgery center.  Luckily it didn't end up being a big deal and the most likely cause is that Dad and Mom let her go a little crazy on the amount of chocolate milk after being down that long.  Oh well, at least we got her car seat cleaned out in the process.

A few hours later she was back to her old self...eating and watching tv.

Six weeks from now (early January) we will go back in for an EUA to see how effective these measures were and to remove the sutures in her eye.  Until then, not expecting to post many updates.  

Thanks to everyone who is following Hazel, commenting, liking, praying or reaching out to our family.  We are truly lucky and blessed to have the support that we have and it is just as meaningful now as it has ever been.

If I don't talk to you sooner, have a wonderful December and Christmas season.

Exam Results & Next Steps

I'll admit, not my most creative or well-conceived blog title but it gets the point across :)

Last week Hazel had an exam under anesthesia to check her overall eye health and to specifically look at the fluid in the back of her right eye that is clouding her vision.  We were nervous about how the pre-op portion would go as well as the result of the exam -- but God went ahead and did that thing that only He can do and gave a situation with our biggest worry the biggest sense of calm. 

Hazel is 4 years old now and she is far past the stage where she forgets things, for better or worse she has a steel-trap of a mind for experiences and knows what it means to get in the car in her PJs vs going to the same building for an appointment.  So when we got to the surgery center before the sun breached the horizon there were some tears and whimpering but she never lost control.  After a few dozen trips to the surgery center we know some tricks to make things easier....like weighing her at home before we arrive so she doesn't have to stand on the scale...and bringing the latest and greatest assortment of toys helps her mind stay occupied.  Hazel chose to bring her Lego structure which alternated between being called a "church" or a "school".

Hazel and Mom before her exam

The exam itself went really well and Dr Spencer (Retina specialty) was able to get a good look at both eyes...plus we got a bonus visit from Dr Dao, who is Hazel's Ophthalmologist.  We were anticipating that the fluid in her eye would not resolve itself based on her history -- which it did and it didn't at the same time.  There was a mix of things in the back of the eye: blood, fluid and a membrane.  The blood and vitreous fluid actually did resolve on it's own, but what we couldn't see from an in-office exam on eye sonogram was the membrane that is hanging out near her retina in the back of the eye.

The Good News:  This is a good root cause for what is blocking her vision and is easily resolved through a surgery.

The Bad News:  Usually we can do this surgery on the same day, but due to her sties and the higher risk of infection we have to schedule this in 2-3 weeks.

No dates have been established yet but we will be back in the surgery center before the end of the year and the procedure shouldn't be terribly invasive or painful.  Honestly, the hardest part of doing these is the added trip to the center, the coordination of schedules, the follow up visit the next morning....all necessary evils but when you've done it two-dozen times it adds up. 

Stay tuned, I will post again when we have the surgery date scheduled!

Exam Time Again

Well, it's been a long time since my last post in May...partly because there has not been anything out of the ordinary going on and partly because having two kids is exhausting.  Nonetheless, we're back and blogging again because it's time for another (say it with me now)...EXAM..UNDER..ANESTHESIA!  

Tomorrow morning (Thursday) we are taking Hazel in with a slightly different cast of characters who are looking at her eyes.  The focus this time around is mainly on her right eye; there has been some fluid that accumulated in the back of her eye and we have been visiting our retina surgeon (Dr Spencer) for the last two months or so to keep tabs on it.  The best case scenario is that the fluid and blood that is back there would resolve itself and drain -- but from my experience and seeing how Hazel's body functions...I'm not confident that it will be gone tomorrow.  If that's the case, Dr Spencer will do a minor procedure to remove the fluid that is clouding the vision in that eye.

To add more factors to this equation...poor Hazel had a rough fall at school last week and the frame of her glasses gave her a sizable bruise on the bridge of her nose and a big red scrape down the left side of her nose.  Plus a swollen lip for good measure.  She has also been struggling with sties on both eyes that are painful and take time to heal.  Couple all that together with a change to a new room with older kids at daycare and it has caused her to have a rough week.  

So how is this important?  Well, Hazel isn't a baby anymore and she doesn't forget things...she has been really gun-shy lately and feels the pain on her lip when she eats or wipes her nose.  It's been a bad week for her and I'm worried that she isn't going to handle going to the surgery center as well as she usually does.

I'll close how I usually close, by asking for anyone who takes the time to read this to take the time to pray.  We are praying for a smooth "sleep" and wake-up from the anesthetic, praying for positive results on her eye health (cornea clarity, eye pressure, no other vision impairments) and for Hazel to handle the situation like a champ.  Updates coming tomorrow on the results :)

High Five!

I know....a week in between blogs when Hazel has an EUA is too long...I need to do better.  That being said, today is one of those times where I'm actually excited to do some extra typing after a work day where most of my day is spent with my hands on a keyboard.

The exam on Wednesday was a total success from a medical perspective...and honestly not too bad from a pre-anesthesia standpoint either.  Hazel is old enough now where we can tell her things like, "Today is Monday...and on Wednesday we are going to go see Dr Bowman!"  and she understands what we are saying.  We aren't quite to the point that we can explain surgery vs. office visit or exam under anesthesia vs. a painful surgery -- but we are proud of how far she has come with her communication skills.

A typical EUA is not a long process, something in the range of 30-45 minutes before they are completely done and we usually get pulled into a private room before she is awake for a report.  Dr Bowman was up first and the joy on his face was more apparent than usual.  He was thrilled with her progress and the way the cornea is bonding with her eye, Dr Smith was next and had Dr Dao along side...both with bright smiles and a certain skip in their step.  Hazel's eye pressure was down to a normal level, the nerves looked healthy and we were able to tweak her glasses prescription.  We  were event able to reduce the steroid drops needed in her right eye.  I like to imagine that if these weren't skilled doctors at the top of their professions that they might have started throwing around high fives and chest bumping like a team that just brought home the championship trophy.    I am probably remembering the vibe in the room the way it seemed in my head, but we don't get many reports where there is good news that isn't followed by bad news or something else that we need to watch closely.

Hazel usually needs some time to snap out of the anesthesia and doesn't like all the cords and stickers and band aids, which is nothing new.  But on the way to the elevator she snapped out of it like the little actor that she is and suddenly perked up..."All done Dr Bowman!"...our little girl is growing up.  I'm sure we will be back at the surgery center at some point and things won't always have a positive outcome, but I'm taking our victory and running with it this time...we'll cross the next bridge when we come to it.

Wednesday was a good day.

Hazel Checkpoint

Hazel is now closer to four than three, which as I type it sounds a lot crazier in text than it ever sounded in my head.  Part of her long-term treatment and care plan is to have regularly scheduled exams under anesthesia so we can do a progress check on Hazel and anything else that would be beneficial like a new prescription for her glasses.  In this case, we are a little overdue to remove the sutures in her right eye that need to be taken out from her most recent cornea transplant.  So if you have a free minute, we'd appreciate prayers for safe anesthesia and good result this coming Wednesday!

All of the check-ups since the cornea surgery have had great results and Hazel is showing some progress with the vision in her right eye.  We have been working with her on patching the left eye in order to strengthen the right eye...with some varying degrees of success.  She's a crafty little girl and finds ways to bend the eye patch to see things better or tries to negotiate her way into cutting her patching time short.  We encourage her to play with her baby sister or ask her to read how many fingers we are holding up...and she does pretty well but there is still a long way to go.  It's still crazy to think that we've been blogging and tracking her progress for so long :)

In the early months of tracking Hazel's progress, we became friends with the Fears family and their daughter Finley who has a similar story to our daughter and their journey through pediatric eye issues.  The connection of our families encouraged the Fears to start a new organization called Fearless HOPE, which is Christ-driven and aims to help provide hope to children and families of children who are experiencing vision impairment and loss.  Aubree and I are testaments to the type of emotional support and information that families need to help give their children the best care available.  We share resources, we share stories and we want other families to know that they are not alone!!

On Saturday May 13th you will find Hazel and the rest of our family at the Race 2 Vision event that supports Fearless HOPE and the great work they do.  I don't call in many favors or ask for people to contribute to fundraisers, but if you are looking to give back to your community I can tell you that there are very few organizations who are trying to connect families like ours who need support.  

The Race 2 Vision event is a family-friendly event with a bounce house, face painter and some kids who have benefited from being involved in Fearless HOPE will be running to raise funds.  Hazel's tiny legs aren't quite ready to do a "per-lap" fundraiser but if you'd like to donate on her behalf we would EXTREMELY grateful and you might get a big ol' Hazel hug out of the deal.  I'll include the link and information below about the event, but it's going to be a great time of fun and celebrating the great things that Christ in doing in the lives of these kids.

Fearless Hope Race 2 Vision: http://fearlesshope.org/race-2-vision/

When: May 13th at 9:30 am

Where: Wakeland High School Track in Frisco (10700 Legacy Drive, Frisco)

Why: Because you love Hazel and she would love to see you :)

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.