Finding Perspective

My favorite course in college happened during the second semester of my freshman year at Baylor with my good friend (and freshman roommate) Jeff Kok.  Jeff and I were looking to take a few classes together and needed to fill a 4-hour lab course...the class we settled on was astronomy.  Astronomy is in no way associated with the major I choose or the life I had planned out after college, but for whatever reason it always appealed to my personality.  Jeff and I would stay up late before tests to study and would always find childish analogies or mnemonic devices to remember the features of our solar system.  Some of which we still joke about as 30-year old dads who haven't been in a dorm room since 2004.  We definitely had some good times in that 12 x 13 dorm room...  As part of the course, students were required to complete three hours of course work and one hour of "lab" which consisted of actual laboratory work or watching a video.  One night, I attended a one hour video that was narrated by Stephen Hawking; the video started at the base level of existence, the cellular level of our bodies and expanded out farther and farther into the universe to show the grand scale of existence.  It took less than 60 minutes of being in the right place, at the right time for me to realize that the world that we live in was made by a Creator that spoke into existence a universe that is beyond comprehension.  That random video which I'm sure other student were ignoring or sleeping through was life changing for me.

But this is The Hazel Report -- so what does this have to do with Hazel?

When we got the genetics report on Hazel, we learned that her micro-deletion on Chromosome 6 was approximately 1.2 megabytes.  Do you understand how small that is?  Please allow me to put this to scale: if you're reading this blog on a standard 16 gigabyte iPhone, than 1.2 megabytes is 0.008% of the capacity of your phone.  It's nothing.  It's tiny.  But it means a lot to our daughter's life.  For the last 14 months, Aubree and I have been trying to get a handle on every situation and all the variables that exist for Hazel's health...because frankly, there is a lot to process and do.  There are times that we feel confident and happy but there are also times (like earlier this month for me) where the weight of all these surgeries is overwhelming.  But recently I've tried to take time to find some perspective.

I have found myself thinking back to a class I took 10 years ago with a friend who I met because God planned for us to be potluck roommates.  I'm not focused on that fact that there are bigger problems in the world than Hazel having a micro-deletion in her genetic make up.  I'm focused on that fact that the God who I place my faith in is the creator of this immense and complex universe -- so how can He not be able to conquer 1.2 megabytes of missing DNA?

GOD IS IN CONTROL.

Eye Surgery 8: More Than Expected

I am blogging this afternoon from an office chair in our bedroom as Hazel continues to nap the day away on our bed.  It was a rough morning for our little girl, she's earned the right to stay in her footie-pajamas as long as she wants if you ask me.  

If you only have a moment to read this, I'll go ahead and give a Cliff Notes version of the blog: the procedures went really well and Hazel is doing fine this afternoon.  Unfortunately, we got more than we expected this morning.  There's not a good way to summarize everything, so you'll have to read on to see the big picture and details:

The scheduled procedures today included two things -- first, an evaluation under anesthesia to examine both eyes and secondly, to remove the lens in her right eye which has a cataract and is hindering her vision.  Going to the surgery center is getting tougher than it used to be for our tiny family.  Hazel is much more aware of where we are and recognizes the nurses and doctors when the start to take measurements and notes.  She already doesn't like when people pin her down or get in her face, so trying to take blood pressure, attach leads to her chest and do pre-surgery eye drops is more challenging than it used to be.  It's kind of a joke in movies and TV shows but its true...babies can be freakishly strong.

About a half hour after Hazel went back for the procedure, both her cornea surgeon (Dr Bowman) and glaucoma surgeon (Dr Smith) came to the waiting room and pulled Aubree and I into a consultation room.  We have been concerned about the size of Hazel's left eye and knew there was a very real possibility that the EUA would reveal that her eye pressure was up.  And it was.  I forgot to ask exactly how high the pressure was in her left eye, but it was high enough that Dr Smith wanted to move forward with placing an addition tube in her eye to relieve pressure.  We all agreed to do the surgery today and place another tube in her right eye.

Even though we knew this was the next step to fight the glaucoma, it still caught me off guard somehow.  I think I'm just tired.  I'm tired of the rug getting pulled out from under us every time we think we are on the last leg of this marathon of eye surgeries.  It is what it is, but we just want Hazel to have a break from all of this for once.  In a lot of ways, today is just one of those days where it gets me down that Hazel only knows this form of life where she averages a surgery a month and has multiple doctor appointments each week.  I'm sure that later tonight Hazel will be clapping and laughing and the glass will seem like it's half full again.  I'll remember that she is blessed to have doctors that can give her vision when she born blind and that there are kids out there who don't have the medical resources that she does.   It was just a really tough morning but tomorrow is a new day.

Hazel is nearly 14 months old and the on-going support from all our family, friends and various church bodies has really been unreal.  It's scary to think where we would be without all the words of encouragement, the prayer, the hugs and emotional support.  Everyone is probably tired of me closing the blogs by thanking everyone who is supporting Hazel...but I don't know how else to say how truly appreciative Aubree and I are for each and every one of you.

I hope everyone is having a happy and safe holiday season to this point.  I will blog more as updates are available.  The next steps for Hazel are a check-up next week on her surgeries from today and another visit to the surgery center in a month for an EUA.

Hazel's First Year In Review

I've been meaning to do a recap of the first year of Hazel's life, but it wouldn't be a real Hazel blog post if it wasn't way behind schedule!  We celebrated her first birthday last month in a very fitting way as Hazel came down with her first case of strep throat and we ended up in the ER for a night.  I'll get to that later...but I wanted to lead off this post by letting everyone know that Hazel is having eye surgery this Wednesday, December 3rd.  This surgery was originally scheduled on November 5th but had to be postponed since she had a 100+ fever the night before.  Our cornea surgeon, Dr. Bowman, will be removing the lens in her left eye due to a cataract and Hazel's team of doctors will also take this opportunity to evaluate both eyes, check eye pressure, check the results of past surgeries,etc.  For older patients, a doctor would remove the cataract lens and replace it with a supplemental lens -- but Hazel is way too young for that so her only option is to wear her glasses at all times.  When her eyes are fully formed and grown, Hazel will be able to tell us exactly what she can and cannot see and at that point we can have surgery to give her two new lenses.  

This is the LAST scheduled eye surgery that Hazel has and we are praying that she will get a much-needed break from all these procedures.  As always, we would appreciate your prayers for a safe and successful surgery on Wednesday morning.  We are the first appointment on the books, so we will be there by 5 am or so and should be home by 11'ish.

It's been a crazy year to say the least...so take this as your warning, this is probably going to be a long post but I'll do my best to keep it interesting with some pictures: 

October 2013

• Born October 12, 2013 & incorrectly diagnosed with Peter's Anomaly in the NICU
• Failed two hearing tests in hospital
• October 21: First hearing test with ENT with inconclusive results

November 2013

• November 1: First cornea surgery is a success
• November 2: The first day Hazel can see the world
• November 13: Detailed hearing screening (Hazel passes the test)
• November 20: One of the worst days of our lives, Hazel has a reaction to an eye drop that sends us to the ER and a triage "all hands on deck" experience

December 13, 2013: Cornea transplant #2

January 29, 2014: Hazel's sutures are removed from cornea transplants, Dr Smith does her first procedure to alleviate eye pressure

February 2014: No surgeries?  Is that right?  I'm sure we had plenty of appointments :)

March 27, 2014: Eye surgery number 4.  At the time, we thought it would be her last eye surgery.

April 2014:  Announced that Hazel has a genetic deletion that less than 50 people have worldwide

May 2014

• May 8: Eye surgery #5, placing plate on both eyes for eye pressure and "path" for her tube in the left eye
• May 27: First MRI to evaluate the fluid in her head

June 26, 2014: Eye surgery #6, creating the "path" for a tube in the right eye

July 14, 2014:  We find out Hazel has moderate hearing loss due to hydrocephalus

August 29, 2014: Head surgery to place a tube in her head which connects to her stomach to relieve excess fluid caused by hydrocephalus

September 2014

• Sept. 25: Ear procedure to help drain excess fluid
• Sept. 29  Eye surgery #7 to remove a cataract in her right eye

November 5: Scheduled day for eye surgery #8, delayed by Hazel being sick.  This is the surgery happening on Wednesday, December 3.

Lucky No. 7 Post Op Report

In recovery room #7...a fitting number for today.

Hey everybody.  The tiny G-Wiede family is back at home today following eye surgery number seven to remove the cataract in Hazel's right eye.  We weren't very good about notifying everyone that this surgery was happening today so I wanted to be sure that I write a post-op blog as soon as possible.

The doctor performing the surgery today is our cornea surgeon, Dr. Bowman.  He did both of Hazel's cornea transplants in November-December 2013 and the other four eye surgeries have been glaucoma and eye-pressure related.  We checked Hazel in at the surgery center on the top floor of the Texas Eye Institute at 6:30 am and kissed her on the head to say goodbye an hour later when they took her back for surgery.

As he always does, Dr Bowman just came out  to the waiting room with an update and let us know that they successfully removed her lens and that Hazel is doing fine. They removed the cataract in her right eye but the tube in her eye (which is there to relieve pressure) was pressing up against her cornea because it was out of place. One of the advantages of being at the surgery center instead of a children's hospital is that Dr Bowman was about to enlist the help of a surgeon from the from Glaucoma Associates. Hazel's regular glaucoma specialist (Dr Smith) was in Fort Worth doing different surgeries but one of her associates was able to step into the OR and correct the tube.

Through all of these surgeries it can be hard to see the good through the bad...but today we were presented with one of those scenarios.  We didn't want Hazel to have surgery again, we wanted her to keep her lens and not go through the painful surgery process.  But if we didn't have her examination under anesthesia, we wouldn't of known the tube was out of place and the cornea could have been ruined.   Cornea failure is just about the worst thing that could happen for Hazel's vision outside of permanent blindness right now.

Anyways, since the lens was removed from Hazel's eye they were able to secure the tube better within her eye and it should not be an issue going forward.  Dr Bowman said he corneas still look great and that her eye pressures today were 22 in the right and 15 in the left, which is a good thing. So at least that aspect of her eyes along with her corneas got a good report. With her lenses removed, Hazel will need to rely on her glasses for vision so we will need to have them on much more frequently and consistently.  

The bad news is that she also has a cataract in her left eye :(  Hazel can't catch a break right now.  So we are going to have at least two more days like this:

1.  Remove left cataract and remove right eye stitches

2.  Remove left eye stitches and probably an EUA.

Thanks to everyone who is actively keeping up with Hazel's progress and praying for her health.  This was her 7th eye surgery, her 13th time under anesthesia and she will need to go under several more times within the next 6 months.  It's a lot for a tiny human to handle.

A Last Minute Update

Sorry everyone, I know how much y'all love Grant's posts, but this one is coming from Hazel's Mama. We have had quite a bit on our plate recently- who doesn't!- so we apologize for not being more on top of communicating what is going on with Hazel. 

First off, tomorrow morning (Monday Sept 29) Hazel will be having her 7th eye surgery (13th time having general anesthesia) to remove the lens in her right eye, which has developed a cataract. They will not be putting in an artificial lens until she is older. Since she will have no lens, she will be completely dependent on her glasses to see out of her right eye. Thankfully, baby glasses are super super cute! 

At this time we would love for people to be in prayer:

• That her eye pressure would remain steady and low
• That her eye would not react negatively to not having a lens
• That the procedure would not affect her cornea
• That she would get at least a 1 year break from eye surgeries

Secondly, last Thursday Hazel had a procedure to unblock the tube in her right ear and had a hearing test while she was under anesthesia. We were hopeful that the shunt surgery would remove pressure from the nerve responsible for hearing, and that her hearing would improve but the hearing test revealed that though her hearing has not improved, it had not gotten worse. This is great news considering how quickly she lost hearing from November to June. We don't know how progressive her hearing loss could be, but right now, she hears some tones well and some tones not well. Unfortunately, the ones she doesn't hear well are the tones that most closely reflect speaking. Her hearing is fully corrected when she wears her hearing aids (which are also super super cute), but both glasses and hearing aids at the same time is virtually impossible to enforce. 

Hazel is doing great recovering from her VP Shunt surgery in late August. Her head looks so much better, and the thing we have noticed the most so far is that the very prominent vein in her forehead has almost disappeared. Hopefully, this surgery will give her brain a better chance to develop normally as she grows.

We are so immensely grateful for you taking the time to keep up with Hazel and cover her with prayer. It has been almost a year since she entered our lives, and from day one we have been overwhelmed by the prayers being lifted up to our Savior on behalf of our baby girl. He is our strength and our hope and He has wonderful plans for Hazel and her life.

Surgery Update

A quick update on Hazel (12:57 pm):

Hazel is out of surgery and Dr Swift said everything went well. She is not awake yet but we are going back to see her soon.  As far as we can tell right now, everything went as planned. 

We found out this morning that some of the information we received yesterday was incorrect -- but it is for the better!

- The surgery took about half as long as expected

- Dr Swift said we should be able to go home tomorrow instead of a multi night stay

I'll update later tonight or tomorrow. 

Head Surgery Day

Well, today is the day...Hazel is getting a tube shunt in her head this morning. For previous surgeries, people have asked for specific times or things to pray for so I wanted to make a quick list of FAQs:

1.  Surgery time is 11:00 am. Hazel cannot have anything to eat past midnight and can only have clear liquids until 7 am. Please pray for her parents from 7 am to 11 am :)

2.  The surgery will last 210 minutes, which is 3.5 hours.  (11 am to 2:30 pm)

3.  The tube will connect from her head to her stomach to drain fluid and will require two incisions...one in her head and another in her abdomen. 

4.  We will most likely be staying at the hospital for 3-4 nights (Friday, Saturday, Sunday and possibly Monday). The long stay is mainly for evaluation of her ability to bounce back from the surgery mentally and physically. 

5.  Please pray for Dr Swift who is performing the surgery and for the anesthesia group. This is far and away the longest time she has ever gone under. 

I will update the blog after the surgery is over!!  Thank you to everyone who has been rocking a Hazel braclet, keeping up with the blog and praying for her. After ten and a half months we still feel a huge sense of comfort that others are lifting up our family in prayer. 

Countdown to the Weekend

The month of August is typically a time for counting down to something, like the start of the school year....or if you're me...the start of the college football season.  But ever since Hazel became a part of our world, the normal and routine things that happen throughout the year are anything but routine.

For better or worse, our little family is counting down the days until Hazel's surgery this Friday, August 29.  You might remember from previous posts that Hazel has hydrocephalus, where excess fluid is in her head and needs to be drained.  Hydrocephalus is not terribly uncommon but in Hazel's case, the extra fluid in her head is pinching the nerves in her ears and is the most likely cause for her  hearing loss.  We don't know with 100% certainty that the fluid is the cause of the hearing loss, especially since the vast majority of people with Chromosome 6 deletions experience some level of hearing loss...but it's the most likely cause.

The surgery is being done at Children's Hospital in Dallas to place a tube shunt in Hazel's head which will drain the extra fluid.  Normally, we get to sit at the hospital or surgery center and we are home by the afternoon, but since this is a head surgery we will be spending a few nights at the hospital for observation.  Aubree and I have known about this surgery for a while -- and in a perfect world, we would have done it weeks or months ago.  But those plans were delayed since we needed to prioritize the various eye surgeries and her recent ear surgery.  In any case, we are really hopefully that this surgery will help Hazel feel better overall and could possible allow her ear nerves to heal and recover.  

Overall, Hazel is doing  really well and is slowly but surely learning how to tolerate her glasses and/or hearing aids.  She is sitting up on her own really well, has perfected the high five, will wave hello at you, make all sorts of noises like "ga-ga-ga" or "da-da-da" and will laugh at just about anything...including our ridiculous dog Gus.  We are still waiting for the light bulb to go off where she will start crawling, but that will be a good-news bad-news situation whenever she can start to crawl away from us.  

As usual, we would appreciate any prayers for the surgery on Friday and I will update everyone as soon as I can.  In the mean time, enjoy a little video of Hazel laughing at her ridiculous Dad:

Living the Unexpected

I've been dragging my feet on writing this blog entry.  If you have spent any time reading posts on Hazel, you'll probably recognize that there aren't many instances where I am posting solely for the purpose of an update on how well everything is going.  Mainly it's because our life is moving at a pretty frantic pace right now and it's easier to cover the things that are going on in chunks instead of short bursts of information.

It's been about a month since Hazel had her most recent eye surgery and to be honest, her eyes are doing pretty well right now.  I mentioned last post that Hazel has her own tiny sunglasses to help with her sensitivity to bright lights and Aubree is taking her in on Friday to get a prescription done for her glasses.  We are still doing steroid drops four times each day in both eyes...but that seems like nothing compared to what she has needed in the past.  Hazel's most recent eye pressure check was on Monday, where both eyes registered pressures in the low-20s (that's a good range for her).  For the first time in her life, Hazel doesn't have an eye appointment for TWO MONTHS!  I wish this meant that Hazel was getting a break from doctor appointments and medical attention....but that's not the case.

The only reference we have for Chromosome 6 deletions is a comprehensive document on all the known active cases in the world -- which is 45...well, 46 counting Hazel.  In this document (linked here) it explains everything we know about C6 deletions and issues it can cause.  One feature of this deletion is that two-thirds of the people with this deletion experience some level of hearing loss.  To this point, the assessment of Hazel's hearing has been a bit of a roller coaster ride.  She failed two hearing screenings when she was born, had an inconclusive hearing test when she was a few weeks old, then had a completely successful detailed hearing screening in November 2013.  On July 14th, Hazel went to the ENT for Children to have tubes placed in her ears to drain excess fluid that was affecting her hearing and to have another detailed hearing test.  The procedure was a quick one and went really well... but the hearing test revealed that Hazel has suffered nerve damage and has "moderate hearing loss".  We are not 100% sure at this time if the hearing loss is permanent or the root cause of the nerve damage.  The top two theories are that the excess fluid in her head has been applying pressure to her nerves for too long or that this is related directly to her chromosome deletion.  Either way, she has been fitted for tiny hearing aids and will need them immediately to help avoid a delay in her speech development.  Aubree and I have also discussed learning sign language to help with her development or if she doesn't have her hearing aids in a noisy environment.

To this point, Hazel has had an MRI on three different occasions and we've determined that she will also need a tube shunt in her head to alleviate the fluid that has built up.  The neurologist and neurosurgeon believe there is a possibility that her hearing could rebound from the nerve damage that has already occurred -- but who knows.  The official date has not been set, but the surgery will be at the end of August and will unfortunately require a short hospital stay.

I'm trying my best to stick to the facts about Hazel's health issues...but it's hard not to feel like our family is being kicked while we're down.  This month was supposed to be the first time in a long time where there weren't any surgeries, we thought there would be less doctor appointments, more positive news instead of getting blind-sided by more health issues.  Guess that is just not in the cards right now.  I guess this is just life.

It would be hard enough to get Hazel to leave glasses on her face without ripping them off....so I'm not sure how we're going to get her cooperation when we also include hearing aids.  Our plan is to start both at the same time so that hopefully she will just see this as a single change instead of adding two different things.  Unfortunately, the hearing aids will need updated ear moldings every month or so to keep up with her growing ear size....which means more scheduling appointments, time, money, etc...

I know everything is going to be fine in the long run, but the relentless nature of Hazel's health issues doesn't seem to be letting up any time soon.

Post Op Update

We got a slight break this morning and didn't have to be at the surgery center until 6:30 am which is an hour later than the previous three surgeries.  Guess you've gotta enjoy the little things....  

Hazel had an uninterrupted night of sleep last night and was in pretty good spirits by the time we made it to the waiting room.  It was still dark outside when we arrived and the building was basically empty, but early surgery times are always better than any time later in the day.  Hazel stayed in good spirits up until about 7:30 in the pre-op room when her hunger started to outweigh any toys or funny faces that Aubree and I could offer.  All the nurses who have check Hazel in for previous surgeries always like to come by and say hello or see how much she has grown.  When Dr Smith arrived in our pre-op room Hazel was making lots of noises and getting anxious, but she LOVES Dr Smith and got a big smile once they were face to face.  Overall, this was a pretty uneventful day as far as surgeries go.  Everything went according to plan and there were not any "on the fly decisions" that needed to be made by Dr Smith or by us.  Both of Hazel's tubes have been inserted into her eyes and are fully functional.  It will be really interesting to see what her eye pressure is like when Aubree takes her in for her check up tomorrow morning.

Hazel is in good spirits and is essentially acting like nothing happened;  Aubree needed to be at work today so today I stayed home so that one of us will be with Hazel all day.  We have been playing, laughing, watched team USA vs. Germany in the World Cup, had some pureed sweet potato, had a bottle and right now she is taking a nap.  And as a bonus, Aubree works close enough that she was able to come home at lunch and see everyone for an hour or so.  

From this point, we don't have any planned eye surgeries for the immediate future...so we are in the monitoring phase for her eyes to see how she progresses.  We did get her fitted for tiny sunglasses and tiny glasses last week since she is very nearsighted, she will probably start wearing them in the next few weeks but who knows how long it will take for her to get used to them.  

I will keep everyone updated on some of the other issues that are on our plate for Hazel, including her excess head fluid, the ear fluid which is affecting her hearing and if anything happens with her minor heart condition.  The list of things we haven't addressed yet seems daunting when you list them all together, but they seem so secondary compared to her eye problems and finding out about her chromosome deletion.  We're really just trying to take this one step at a time and enjoying Hazel while she is still a baby.

I can't even tell you how encouraging it is to have people praying for Hazel so constantly and consistently.  It is tough to quantify the impact that prayer can have on a situation.  It's just impossible to know how things would be different if no prayers or fewer prayers had been said for our daughter.  Prayer is about faith and humility and turning things over to the Lord...not just for yourself, but for those around you.  Thank you to everyone who has been so faithful to God in this time and lifted Hazel up to Him in prayer.

Eye Surgery on Thursday

It's that time again...surgery week.  On Thursday, our little family will go to the surgery center in Dallas for Hazel's 6th eye surgery.  By this point everyone who reads the blog knows how we feel about these surgeries days...they are just about the worst.  We will go through the same motions that we've done 5 times before: Go to bed early the night before (which never works out).  Set our alarms for 4:15 am or so and barely get out of the house in time.  We'll be the first car in the parking lot, first patients in the building, we'll go through the same check-in process and sign all the same forms.  The hardest part is usually that Hazel can't eat for a few hours beforehand and can be unpredictable.  It is what it is I guess.

Overall I would say that Hazel is doing really well.  That doesn't mean that things are perfect...just that we've been in worse positions and things are slowly getting better.  There are still lots of concerns that we have about Hazel's health and more procedures to schedule.  I probably just need to make a list of Hazel's medical needs that could use prayer.  You know what...I'll add that to the bottom of the posts from now on.

I don't expect anyone besides Aubree and I to keep up with exactly what is happening at each surgery or appointment, so here is a refresher on what is planned for Thursday.  Dr Smith always starts her surgeries with an in-depth EUA (exam under anesthesia) to check Hazel's eye pressure, how previous surgeries are healing and to document how various parts of her eye are doing (Corneas, lenses, optic nerve, etc).  From that point, Dr Smith will be making a path for a tube to be placed in her right eye.  Six weeks ago, Hazel had a procedure which placed a plate and tube ON each eye and a path was created for the left eye where the tube can be placed IN her eye.  Following her surgery this Thursday, both eyes will have the tubes placed in her eyes to relieve fluid and get the pressure into a safe range.  Overall, we are hoping that this surgery is pretty straight forward and uneventful.

As usual, I will try and keep everyone up to date on how everything goes on Thursday and beyond.  If you would like specific things to pray about for Hazel, here is a list:

-  Successful eye surgery on Thursday

-  Focus and precision from Dr Smith on Thursday

-  Quick healing process

-  Hazel has fluid in her ears that is affecting her hearing... the fluid needs to be drained with a minor procedure.  It will require anesthesia, which is always pretty serious.

-  That Hazel's excess fluid in her head would normalize and not require a procedure to drain the fluid.

MRI and Eye Surgery #6

Just a quick update on Hazel's upcoming doctor appointments and procedures...

On Tuesday afternoon, May 27 Hazel will have her second MRI to get a good look at the excess fluid in her head.  This will be a good measure of how much fluid is building in her head since we have the MRI result from a month ago for comparison.  Depending on the results of this MRI, we will make a decision on when and how to relieve the pressure that is building from the fluids.  The most likely scenario is a procedure performed by a neurosurgeon to place a tube shunt in her head and drain the fluid.  I will update this issue when there is more information to share.

Secondly, we have a date set for Hazel's next eye procedure which will be on Thursday, June 26.  Her most recent surgery placed one plate and tube on each of her eyes and they made a path in the left eye to place the tube inside her eye.  The procedure in June will make a similar path for the right eye to place the tube and relieve pressure from her eyes.  This will also be an opportunity for our glaucoma doctor and cornea doctor to do an EUA (exam under anesthesia) which provides accurate eye pressures and will give them a chance to monitor her past surgeries.

There is not much else to report right now besides schedule updates -- but that's a good thing!  Hazel's little personality is really starting to take shape recently and she can be lots of fun.....or the opposite :)

Thanks to everyone who has been praying specifically for Hazel's upcoming MRI and for healing from recent eye surgeries.  I could probably start a separate blog that is filled with thank yous to all the individuals, families and church groups who have let us know that Hazel is on their hearts.  Sorry if the last paragraph always sounds repetitive with all the thank yous, but every week we are reminded somehow that our daughter is being lifted up in prayer.

Hazel Wristbands

Recently, our sweet friends Brooke Suarez and Amy Kraus from Valley Ranch Baptist reached out to Aubree and I with an idea for fundraising and promoting prayer for Hazel.  The idea was to produce Hazel Wristbands that would serve as a reminder to pray for Hazel's health and maybe the sanity of her parents!  After some discussion, we decided to put Hazel's name on one side of the wristband and a favorite verse on the opposing side:

"For we walk by faith, not by sight" - 2 Corinthians 5:7 (ESV)

This is a special verse to us since it perfectly reflects Hazel's vision problems and the path our family's life is on right now.  We are moving forward with faith in God's plan as our guiding light and not dependent on our own vision.

We hope that anyone who wants to purchase a wristband will use it as a reminder to pray and spend time with the Lord.  A wristband is more than a reminder to pray for Hazel; it is a reminder to pray for others in your life and a way to spread the message of Christ and the importance of prayer to others.  Don't get me wrong -- I want you to pray for Hazel!  But if anyone asks about your wristband, don't make it about Hazel's surgeries or chromosome deletion...make it about God and how He has impacted a tough situation with unbelievable support and love.

The secondary goal of the wristbands is to contribute to Hazel's medical costs and any proceeds will go towards medical bills.  It is important to us that everyone knows that any donations go directly towards medical bills and medical bills only -- not diapers, not clothes, not toys, not children's Tylenol, not everyday stuff.  Aubree and I are blessed with jobs and have always been prepared financially for "regular" expenses.

If you would like to purchase a wristband, Brooke and Amy are handling all the logistics and are selling them for $5 each. 

To order, please contact Brooke or Amy:

Brooke Suarez: Brooke82a@yahoo.com

Amy Kraus: Amykraus11@yahoo.com

Post-Op Update and Upcoming Surgery #6

Last week we took Hazel in to see her glaucoma specialist, Dr Smith, to get an accurate measure of her eye pressure and look at the progress of her pressure-relieving surgeries.  The best case scenario would be that Dr Smith does an EUA (Exam Under Anesthesia) and tells us that the previous surgeries were a success and that her eye pressures were in the goal range of less than 20.  What actually ended up happening was closer to worst case scenario.  Hazel's eye pressures were both in the mid-30s and scar tissue had formed in her eyes which had negated the passages that Dr Smith had created in her eyes to help fluid drain out.  As a reference, these are the options we determined are best for fighting Hazel's glaucoma....

1.  Control eye pressure with eye drops and see if pressure decreases naturally as she grows.  

• Result: Failed -- The glaucoma was too aggressive to be controlled long term with drops.

2.  Additional surgery to both eyes to create passage ways which will aid in fluid drainage and be a long-term solution for pressure control.  

• Result: Failed -- scar tissue formed over the passages and pressure is rising again even with eye drops.

3.  Plate and tube shunt.  A small plate is placed on both eyes, which is connected to a tube...an opening is created for the tube to be placed inside the eye and draw out fluid which dissipates into her body.

4.  [Out of options]

Last week we took the initial steps for option 3, resorting to a plate and tube.  This option is the higher risk because it involves placing foreign objects in the eye and a path must be created for the tube to go inside the eye.  There is a narrow area for Dr Smith to place the tube without hitting Hazel's cornea, lens, iris or causing structural damage.  Last Thursday Hazel had surgery to place a plate on both of her eyes and the path was created inside her left eye for the tube.  Both plates have been placed on her eyes....but only the left eye has a tube inside the eye at this time.  We will have to go back in 5 weeks +/- to do surgery on the right eye to insert the tube.  This will be eye surgery number six for Hazel...2 cornea transplants, 2 failed pressure relief surgeries and now 2 plate/tube placements.

The good news is that the plate and tube option is almost guaranteed to work....but the flip side of the coin is the higher risks involved for placing the plate and tube.  Before the surgery her eye pressures were at 35 and 37...at today's checkup her eye pressure was 13 in the left and 35 in the right.  This is a big deal for her vision and long term outlook -- Hazel's eye pressure hasn't been below 20 since she was three weeks old.  We're making progress but it is accompanied by risk.

Hazel's eyes will be bloodshot for a few more weeks and we are dealing with some swelling that looks pretty nasty.  Through it all, she is in good spirits and does not seem as bothered by her eyes as we thought she would.  We are trying to stay focused on all the other things a 7 month old needs to do: work on sitting on her own, eating solid foods, establishing a sleep schedule and other developmental benchmarks...but its hard to do it all.  

I will update the blog if anything new happens or when the surgery date is scheduled for the right eye.  Sometimes they don't give us much notice for the surgery date and other times we have a few weeks notice.  I can't write a post without thanking everyone who is praying for our daughter and showering us with support...it really does mean a lot!

Hazel the day after surgery

Update: Eye Exam and Surgery

Quick update from the Eye Institute of Texas Surgery Center. Hazel's eye pressure is high in both eyes today...they were in the high 30s and we need them to be below 20 ideally.  This is pretty rough news to handle. 

Dr Smith is placing a plate on both eyes, which will be directly above the eye and hidden beneath her eyelids. She is also placing a tube into her left eye to relieve pressure. Hazel will need the same type of tube to be surgically placed in the right eye in six weeks. 

This news sucks really bad but we are out of options...we've been fighting this option for a long time but this is what has to be done despite the risks involved. 

I'll try and update or post other pictures when she gets out. Should be done by 8:30 am or so. 

Eye Exam and Possible Procedure

This Thursday, Hazel will make another trip to the surgery center located on the top floor of the Texas Eye Institute.  The initial reason for this visit is to get an EUA (exam under anesthesia) where both her glaucoma doctor and cornea doctor can exam her progress...but there is a possibility that there will need to be another surgery in addition to the exam.  

Let me explain...

This will be Hazel's third trip to this particular surgery center...the first two visits were for her recent surgeries to relieve pressure from her eyes in a procedure known as a combination trabeculotomy-trabeculectomy.  Basically, the surgery is meant to create additional passages in her eye where fluid can drain.  These two procedures were a success at the time of surgery, but there is not a real definitive way to tell if they were a complete success without having her eyes re-examined and getting an accurate measure of her eye pressure.  The biggest threat to Hazel's vision at this point in her life is glaucoma and the eye pressure it creates.  If her eye pressure is too high it can pinch or strain the optic nerve in the back of her eye.  After a certain amount of time the nerve can become damaged to the point that it cannot function -- and that's when the lights go out for good.

In a perfect scenario, we would only be giving Hazel steroid eye drops to help the cornea transplants...but right now her pressures have been high enough that an additional eye drop is needed to keep her pressure in the preferred range.  We usually try and get an eye pressure check when we go to doctor visits, but it is getting harder and harder to convince Hazel to cooperate.  On Thursday they will get an accurate measure of her eye pressure and make a decision on whether or not to take a more drastic step to fight eye pressure.  The possible surgery would involve placing a plate on the upper portion of her eye that would be hidden behind her upper eye lid.  This small plate would also have a small tube attached which CAN be inserted into her eye if her eye pressure ever decides to spike and cannot be controlled with eye drops.  This is the last stand against eye pressure and carries with it some higher risks of damage to various parts of her eye if the tube is ever used.  If we ever had to place the tube into her eye is would be because there is no other option -- it's place the tube or risk losing her vision.

There is no guarantee that Hazel will need the plate to be placed on her eye, but I've been dread this day ever since I knew it was a possibility.  Nothing about her eyes has been easy and Thursday will no exception.  We are hoping that her eye pressure will be low enough that there will not be a need for more drastic measures to fend off her glaucoma.  But who knows...

We would appreciate any prayers this week for Hazel's eye pressure to be between 15 and 20, for positive reports about her previous surgeries and a sense of calm for Aubree and I.  I will try and post again on Thursday night or soon after with any news.  This will be the 7th time Hazel has gone under anesthesia and possibly her 5th eye surgery, so we will take all the prayer that we can get.

Hope everyone is having a great week. 

Detailed Chromosome Info

We have known about Hazel's chromosome 6 micro-deletion for a few months now, but recently we have been reading some detailed information about C6 Deletions which was provided by our geneticist (Dr Golder Wilson).  The PDF (found at the bottom of the post) is a lengthy document but is a good read with information about other children with this micro deletion and to what extent it impacts their life.  

I don't think that everyone will want to read through the document, but it is worth posting if even one person wants to learn more.  I wanted to post it just in case anyone wanted to thumb through it, glance at a few pictures of the C6 kids or learn more about what this could mean for Hazel.

If you decide to take a look, just know that Hazel's deletion is 6p 25.3 through 25.2.  Meaning....6th chromosome, "p" meaning the short arm of the chromosome and 25.3-25.2 is the specific portion where her deletion occurred.

Hope everyone is having a great week!

http://www.rarechromo.org/information/Chromosome%20%206/6p%20Deletions%20from%206p25%20and%20the%20end%20of%20the%20chromosome%20FTNW.pdf

Hitting the Reset Button

I feel like there has been a lot of changing and evolving information that I've put on the blog in the last six months, so now might be a good time to hit the reset button and give everyone a "current status" of sorts.  There are a lot of things about Hazel which some people know, but not everything we know about her makes it to the blog.  It's unrealistic to think that I will post every little thing that happens and many people have been focused on praying for her eye condition...unfortunately, there is more to Hazel's life than an eye condition.

After going through a detailed screening (a few months ago), we were able to determine that Hazel has a genetic deletion on the short arm of Chromosome 6.  It is considered by our geneticist to be a micro-deletion.  A chromosome deletion is exactly what is sounds like....if you were to take the long strands of DNA from her sixth chromosome than you would find that a section never developed and is simply not there.  There are a very limited number of Chromosome 6 deletions in the world (around 40 active cases) and it is very likely that Hazel is the ONLY person in the world with her specific deletion.  If you can't tell from the description, this is rare.  Really rare.  Like..."they don't have a name for it because its too rare" territory.  You won't find a fun run to raise awareness or a certain color of ribbon that people wear to raise funds for research.  Hazel is a 1-in-7 Billion scenario.

Her condition carries with it a number of potential issues, but there is not much data to work with to determine how likely health issues are to arise.  It's safe to say that more articles will be written about Hazel's condition than are available to read about her C6 deletion.  Being born with eye issues is on the list of possible problems, which is why she was born with cloudy corneas and has required four surgeries in her first six months.  She also has a few other things that could happen down the road because of her C6 Deletion, such as: heart conditions, spinal issues, hip dysplasia, enlarged head size, cognitive delay, emotional delay, delayed growth and a few others that I can't remember without consulting our genetics report.  Hazel's C6 Deletion is the top of the pyramid for her health issues and everything else that happens is a result of the genetic issues.

We have been going down the list of possible issues and addressing them one-by-one to try and get ahead of anything that we can.  Hazel has had two echocardiograms of her heart which found a slight defect called PDA, she has had a hip and spine ultrasound which ruled out any early spine and hip problems and most recently, Hazel had an ultra-sound of her head and an MRI.  The MRI from earlier this week revealed that there is extra fluid around her brain, resulting in a condition known as hydrocephalus.  We are being referred to a neurosugeon in order to get a second opinion and talk options for draining the excess fluid.  It might seem obvious, but conditions involving the brain and head are pretty serious...so it's been a stressful week for us.  We thought we were past the biggest hurdles when we did her fourth eye surgery, but now we have a new area of concern.  The relentless nature of these health issues is really taking its toll...

There was a time where Aubree and I did not want to fully disclose what is happening with Hazel and her genetic deletion.  It might sound strange since she is still a baby, but we were concerned about Hazel being thought of as a medical case or as the girl who has a disorder instead of just being a child.  At the end of the day, this is Hazel's life and this is how it's going to be...but this has been the hardest six months of lives.

We both feel comfortable now talking about her genetic deletion, especially since it is creating new health issues which can use the power of prayer.  We know how many people are praying for our daughter, including people who have never met us or know us personally.  Thanks to everyone who keeps Hazel in their thoughts and for all the encouragement over the past six months.

Hazel's 6 Month Photo

Back Home

We are back at home following today's surgery on Hazel's left eye. This should be the last surgery that she has for a number of years. Everything went according to plan this morning which is great news.  In addition to a successful procedure, we also got a positive report from Dr Bowman about the health of her corneas. The corneas are still "clear like windows" and her optic nerves look healthy (Eye pressure can cause damage to the nerves). 

Hazel is back at home with Aubree and I this afternoon and is doing just fine. She is irritable, in some pain and very aware that there is a patch over her eye...but that's all to be expected. Thank you to everyone who has been keeping up with Hazel and praying for a swift recovery. 

Dr Bowman (Left) and Dr Smith (Holding Hazel)