Friday, May 23, 2014

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.

Monday, May 19, 2014

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:

Amy Kraus:

Wednesday, May 14, 2014

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 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 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 really does mean a lot!

Hazel the day after surgery

Thursday, May 8, 2014

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. 

Tuesday, May 6, 2014

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.