Eye Surgery 10

I keep hoping that I won't have to post about upcoming surgeries, but unfortunately we just aren't there yet.  Our little Hazel is still squarely in the middle of the battle zone.  Every surgery that she's had for the last few months has not been planned out and this eye surgery is no exception.  But this war of attrition is just where we are right now and no one can say with any certainty when these battles will end.  

Next Monday, February 23rd we will go back to the surgery center for a procedure on her left eye.  The pupil in her left eye has started to migrate up (Or "north" as I keep saying) and her vision is being impeded by other parts of the eye.  The pupil is really important to the development of Hazel's eyes because it is where light enters the eye and helps it grow and develop.  At this point, the pupil is moving upwards and is being blocked by her iris...so the only solution in this case is an iridectomy to remove the iris.

I hate that this surgery has to happen but it does.  You don't think of the iris as something that the eye can afford to lose...and it has caught most people off guard when I've said what the surgery involves.  But when the choices are either: the left eye will stop receiving light OR you can remove the iris?  Not much of a decision to make.  

If I'm being honest, this surgery feels like Hazel is being forced to lose a part of her eye and not gaining better use of her pupil.  I still have trouble accepting why God allowed her pupil to move at all...she's been through enough already.  By this point we were hoping that Hazel would be in glasses with two prescriptions lenses and be working on improving her vision, not needing surgery to save it.  But Hazel has not had much (if any) vision from her left eye for several weeks.

Overall, Hazel is doing as well or better than many of her doctors thought she would do when she was born.  She gets a lot of help from physical therapist, two vision therapists and her team of doctors that monitor her vision issues, hearing loss and hydrocephalus.  Hazel is on the border of figuring out how to walk and still dislikes crawling (which is fine!), she actually enjoys wearing her glasses and is more accepting of her hearing aids every day.

If you have the time and are willing, we would appreciate your prayer this week.  Please pray that...

• The surgery goes as planned
• The examination would not find any more issues that will need more eye drops or surgery to correct
• This will be the last eye surgery for Hazel

Eye Surgery 9

Well, 2014 is in the rear view mirror but the new year is starting off in a familiar place for us -- back in for another eye surgery. Today is eye surgery number nine for Hazel and is currently underway as Aubree and I waste time in the waiting room.

I will update later, but today all three of Hazel's main doctors are in the house (Cornea, Glaucoma and primary Ophthalmologist).  

Thanks to everyone who has been praying!

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: