Cornea 3 Recap

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

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

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

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

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

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

Cornea #3 is in

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

Big Month Ahead

As they normally do, the holidays have snuck up on me and Thanksgiving has already come and gone. I'm blogging this morning from a dark hotel room in San Antonio while Hazel somehow manages to dominate the majority of a king bed. It shouldn't be physically possible but somehow she's making it happen. 

December is going to be a big month for the Wiede family, for both life changes and medical reasons. I'll start with the fun part, which makes more sense since it's in chronological order anyways. On Tuesday, December 15 we are scheduled to close on our first house!  We are staying in Coppell and found a great house in the bird streets through word of mouth...felt like a total God thing. The family who currently lives there attends our church and was hoping to find another family who would love their house and make it a home, so we're thrilled they decided to entrust us with the house. It's also exciting because Hazel will be able to attend Mockingbird Elementary and they have a fantastic special needs program. I get this question a lot (in some form or another), but we don't know exactly what Hazel is capable of mentally...we DO know that she is visually impaired and hearing impaired -- what I'm saying is that she might be as smart as all her classmates but she will likely need different methods of learning based on her impairments. We know that at a minimum, and if you want me to be totally honest there is every chance that she will struggle in a regular classroom and will do better in a special needs program. Only time will tell, all we can do is keep working with her and taking advantage of great programs like ECI (Early child intervention) to give her the best chance to succeed. 

So on Tuesday we close on the house, and in the early hours of Wednesday 12/16 we will be back at the surgery center for another eye surgery. For a few months now we have known that Hazel favors her left eye for just about everything. If she has a book or wants a better look at something she will tilt her head to use that eye and ignore her right one. Since birth her right eye has always been weaker, which is why we chose to do the cornea transplant on that eye first when she was only 3 weeks old. We've tried a few different things to balance out her vision-- putting a patch on her strong eye, more steroid drops in her weak eye...nothing has the impact she needs to improve her vision. At this point the corneal wall is slightly thicker than it should be and the cornea itself is getting cloudy. You've probably already guessed the outcome here, it's time to replace the 2 year old cornea in her right eye. This procedure probably sounds like the most serious surgery she could have, but the surgery itself is not very invasive. The best analogy here is replacing a foggy window, all the work is right in front of you...the challenging part is getting the new window is fit in place and seamlessly fit into the frame. The same is true for this cornea transplant, getting the cornea to gel with her eye is a game decided by millimeters...this is why surgeons go to school for 15 years (or whatever)!!!  We trust Dr Bowman and know this surgery will go well. 

So what's next?  

Hazel will have sutchers in her eye to hold the cornea in place for a few weeks, but the healing process should be pretty quick. We will have to go back to put her under anesthesia in January for removal of the stitches, but after that it's just back to the waiting game. We will keep our routine appointments and check ups scheduled...there's no telling what is in store for our little angel.  

I will update everyone on the surgery outcome but we could really use some pre-op prayer for the next 2 weeks. Please pray for steady surgeon hands (Dr Bowman) and also that Hazel has a smooth transition out of anesthesia -- the last few have been rough. 

Until next time...

Hazel is Two!

Man, time flies. Everyone tells you at each stage of life to slow down and enjoy the moments and I've found it to be exceptionally true for parenting. Our little baby girl is now a walking, talking, opinionated toddler who officially turns 2 on October 12.

There haven't been any surgeries in the past few months but we still have something for Hazel to do or get done to her just about every week. Last week it was a rapid MRI to do the annual check of her head tube...and later this week she will have speech therapy or physical therapy.  The week after it will be a trip to the cornea place, glaucoma place, visit from ECI or division for blind services.....  Life goes on. 

One thing I wanted to share is that we have some serious concerns over the health of her right cornea. It is getting more cloudy and it's really obvious that she favors her left eye. When Hazel had her first cornea transplant at 3 weeks old our surgeon was very realistic and said that if her corneas were accepted by her body for 2 years than that would be a major win. So I guess we should be happy with how it's gone so far but the thought of putting her through surgery....again...it just makes me sick. 

We have an exam under anesthesia scheduled for Monday 10/19 and we are anticipating that our doctor will recommend a cornea transplant in the coming weeks. So if you have an empty space on your prayer list please put Hazel's right eye cornea and left eye pressure on your list as we get closer to the exam. 

Exam Under Anesthesia Today

Today is going to be a live, last minute blog post from the Eye Institute of Texas as Aubree and I sit in the waiting room. So if you're driving down central on your way to downtown give us a wave!!  

Hazel is having an exam under anesthesia this morning to check her overall eye health, eye pressure and to ensure that the previous surgeries are still doing what they're supposed to do. Today was one of the easier transitions from the pre-op room to being away from Aubree and me...but Hazel is more aware than ever that we're at that place with all the doctors.  She has had 13 surgeries and has been under full anesthesia over 20 times (We lost track of the total). It's a lot for her tiny body to take in the first 22 months of her life. 

If you have a minute, we would appreciate prayers for no medical surprises today and steady hands for the medical team in the operating room. 

Overdue Update

After a 4 month hiatus the blog is back!   I owe it to everyone who has been praying for Hazel or wondered how she is doing to give an update, so apologies for the long absence.

A few medical things of note have happened in the last few months....

On May 13, Hazel went to the surgery center for an exam under anesthesia.  Her cornea surgeon and glaucoma surgeon got a great look at her eyes and confirmed what Aubree and I suspected...that Hazel is favoring her left eye and is not using her right eye often (if at all).  The issue for the right eye is the fluid in the back portion of the eye that is pulling on her eye and obstructing her vision.  She has had similar issues in the past where the doctors have removed excess fluid, but in this case the fluid is in the back of the eye it requires a new specialist, so now we have a retina surgeon!

After some initial check-ups and some back-n-forth with the surgery coordinator, we were able to get Hazel in for eye surgery #11 on June 4th.  The procedure went as well as we could expect and the reliable nursing staff of the Texas Eye Institute's surgery center were there to greet our frequent flier when she got out of surgery.  We are familiar with the routine at the surgery center, but we're lucky to have a nursing staff who knows our child and genuinely cares for her like they do.

I could probably expand more on the medical details of the surgery, but the questions everyone usually wants updates on are how Hazel is doing and if there are any more surgeries?  Hazel is doing really well, we still do eye drops 4 times each day and for the last few weeks we have been putting a patch over her left eye for a few hours each day to force the connection between the right eye and her brain to get stronger.  She tolerates the fashion-forward patches that Aubree ordered for her on Amazon, she's lucky to have a Mom with fashion sense....I'd probably end up making her look like a baby pirate.

We don't have any surgeries that we are anticipating right now, but Hazel's normal life will still include exams under anesthesia for her eyes, an annual MRI for her tube shunt to fight her hydrocephalus, regular eye exams for her glasses and regular check-ups with the ENT for hearing exams and to maintain her hearing aids.  All of that on top of the check ups that all other kids go through.

It's been an active spring and early-summer for our little girl.  Hazel is walking a lot more frequently on her own but still prefers to have a hand to hold since her vision is not great.  She has gone to Vacation Bible School at Park Cities Baptist, discovered that she loves the playground and enjoys the swimming pool, has learned some songs and loves music....seriously, she loves music...and will find any excuse to dance and force you to awkwardly dance with her.

It's been a while since I've posted and 4 months is a big chunk of her life...so here's a few bonus pictures for everyone.

Hope everyone is doing well and having a great summer to this point.  Until next time...

Post-surgery picture

Visit to see Gigi in Clifton

Posing at VBS

Swimming with the cousins

Pushing her cart, eye patch and all

Hanging with Yaya

Sporting new glasses with transition lenses

Fourth of July 2015

More To Do...

Well...it is an exciting time in Hazel's life right now.  Her last scheduled eye surgery was a great success and it was followed this morning by a post-surgery exam from her cornea surgery that had nothing but positive results.  In a way, this is uncharted territory for Hazel...and us.  Hazel still wears her glasses every day and she needs 2 steroid eye drops and 2 drops of Restasis each day...but it seems like a small price to pay.  It's funny how your perspective can change based on where you've been versus where you are.

But even though we don't have any scheduled surgeries, that doesn't mean that Hazel's medical journey is over.  Tomorrow morning Hazel is going in for an MRI that will focus on her ears and hearing.  In case you don't remember, Hazel suffers from three main ailments...she is visually impaired, has hydrocephalus and partial hearing loss.  Most people are familiar with her eyes, but forget that she has a tube shunt that runs from her skull to her stomach to control the fluid in her head....the same fluid that put too much pressure on her ear nerves and caused permanent hearing loss.  There is still a lot that we don't understand about Hazel's hearing, mainly because it's hard to give and get responses from a 17-month old who is only interested in walking and chasing the dog.  But the MRI should provide a lot more information about the structure of Hazel's ears and give us more insight to what our next steps are to help her speech development and hearing.

There is no surgical aspect to tomorrow's MRI, but going under anesthesia is always a risk.  We've been in this boat close to 20 times, but putting her under still makes me somewhat nervous.  We are praying for the anesthesia to go smoothly and that the MRI is clear and provides conclusive results.

If you have the time, I would appreciate any prayers for our little girl.  

Eye Surgery 10 Recap

Hopefully everyone is staying warm as another wave of winter weather hits north Texas.  The initial wave of snow and ice forced us to delay Hazel's 10th eye surgery, but we were able to make our way back to the surgery center this week to get her left eye taken care of.

I posted a few weeks ago about what this surgery would entail, but I need to clarify some of the details of what actually ended up happening.  The pupil in Hazel's left eye was receiving very little light because it was being obstructed by the eyelid and iris.  Originally, we thought this meant that Dr Bowman would need to remove part or all of her iris so that more light could enter her pupil -- this was not the case.  The procedure that was done is actually known as a vitrectomy, which means that excess vitreous fluid from the front of the eye would be removed with the goal of increasing her pupil size and removing unnecessary fluid.  I won't bore you details about what this fluid is, but (in this case) it was causing Hazel's pupil to become obscured.  Hazel's pupil is not nice and round like yours or mine, it is more of a disc shape, similar to the shape of a bean.  So by expanding the size of the pupil, part will still be blocked by the eyelid, but the part that is NOT blocked is similar in size to a regular pupil and is in the center of the eye.  I'm a visual learner....so hopefully that makes some sense.  Long story short....her eye now has a red reflex and can receive light, which is HUGE for her development.

Overall this was a very, very successful surgery.  The past few months there have been numerous eye surgeries and most of them follow a similar pattern....send Hazel back for surgery, kill time in the waiting room and then have a consultation with our surgeons that has both good and bad news.  This time there wasn't any bad news!!  There was no awkward pause following the good news or look of concern on the doctor's face...it was just GOOD news.  Sorry, I know that's repetitive but it's still an exciting situation for us.  The surgery went the way it should, her corneas look great, her eye pressures were low (8 in the right and 13 in the left) and everything else that we are monitoring was looking good.

So what does the future hold?  

There are still stitches in her eye that need to be removed, so we will go back in 6 weeks to get those taken out.  After that, we still have plenty of challenges on the horizon for Hazel but being able to take a break from eye surgery is a huge help.  For her eyes, we still need to get a prescription done for the lens in the left side of her glasses but that's it.  There are no more scheduled eye surgeries at this point.  Such a miracle...

We will still have plenty of appointments since Hazel has hearing loss, hydrocephalus and a mild heart condition...she also works with ECI (Early Childhood Intervention) and Division for Blind services to help her development through visual and physical therapy.  Oh...and all the other shots and things that kids need :)

As usual, the length of this post has gotten away from me.  I realize that most people are either reading this on a tiny iPhone screen or taking time out of their day to read these on the website, so please know that I appreciate that you've read this far!  It's been a long road to this point, mostly in uncharted territory for us....and we really appreciate everyone that has been there beside us along the way.

I'll be sure to post the next time Hazel has something important coming up!!  

Weather Delay

This will be the shortest update ever, but Hazel's eye surgery that was scheduled for tomorrow has been moved due to the weather. 

The surgery is getting moved a week back and will now be on Monday, March 2 in the morning. 

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!