Surgery Day Schedule

Well, it's the eve before Hazel's first cornea replacement surgery and this is the first opportunity I've had to lay out our schedule for tomorrow.  Sorry for the late notice...but better late than never I guess.  Anyways, the schedule for tomorrow is as follows:

• 4:00 AM - Family wake up call, need to get in the car in the next 30-45 minutes
• 5:30 AM - Arrive at Cooks Children's Hospital in Fort Worth
• 8:00'ish - Surgery will begin after the pre-op work is complete, including her visit from the anesthesiologist.  The surgery could start earlier or later than the scheduled time.  The surgery itself takes between 60 and 90 minutes.

After the surgery Hazel will be in observation for a couple of hours...from what we can gather it will most likely be 4 or 5 additional hours in the hospital once the surgery is [successfully] complete. 

The biggest follow-up question that I've had about the surgery is people wanting to know when the doctors would know if the transplant was a success.  The short answer here is that we don't know.  In my mind, Dr. Bowman will be able to tell us if the surgery went according to plan and provide more details on the condition of Hazel's first eye after he was able to see behind the cornea.  After that point it will most likely take some time to observe and monitor her progress in the coming weeks.

 

Aside from the chaos in the first three days of her life, Hazel has been able to enjoy life as a normal infant.  She sleeps, she eats, she uses diapers left and right and loves to be close to her parents.  We even got to go do some trick or treating with her cousins for our first Halloween.  We've loved every minute that we have spent with her in the first three weeks...nothing about her situation has put anger in our hearts.  If anything, we love Hazel more than we ever thought possible and feel blessed that so many people have Hazel on their mind.

I will update the blog when I have time and when we have information to share...so everyone might need to exercise a little bit of patience.  We feel optimistic about her first surgery and appreciate all the prayers and encouragement.

Catching Up

Everything is pretty normal for our little family right now...or as close to normal as it's felt in the last two weeks. Life is starting to have a rhythm to it again and we're hoping that it will be smooth sailing until Hazel's first cornea surgery on Friday, November 1.

 

Anyways, I wanted to catch everyone up on a few topics and try to address some FAQs about the NICU, Peter's Anomaly and her upcoming surgery. This post will probably be a lengthy one (you've been warned) but I just wanted to knock this out all at once.  Here we go...

 

Life in the NICU

Hazel and Aubree in the NICU

Hazel found herself in the NICU at 6 AM or so on the day she was born, Saturday October 12.  An hour later Aubree and I were finding out for the first time that she was in the NICU due to her low blood sugar and that they wanted to get a specialist to exam her cloudy eyes.  We sat together for a few minutes and cried...it was hard to do anything else at that moment except to feel helpless.  After a few minutes I left to go to the NICU and Aubree had her morning check-up with our nurse.  My first experience in the NICU was in 2006 when my sister gave birth to her twin girls, one of which ended up in the NICU for a day or two.  I remembered the feeling in the room that day seven years ago as I walked the hall to visit my own daughter in the same environment. 

The NICU is a place that is hard to describe if you've never been there before.  First and foremost, it is extremely secure...you have to buzz the intercom to get access, they buzz you out when you leave, only two people allowed in at a time and hand sanitizing is not optional.  It's not always convenient to play by the rules but they are very necessary.  But once you are inside the NICU is a very quiet place with different stations for the various children who are receiving care.  Hazel was hooked up to a tiny IV in her hand and a foot monitor which kept track of her heart rate along with a bunch of other numbers that I didn't understand.  It was terrible to see her hooked up to so many wires and monitors...even when I think about it now it makes me feel a little down.  There were two chairs in front of Hazel's station where the parents can come and sit.  The first person I met in the NICU was our nurse, Sharon.  Good nurses are a lot like good teachers....no matter how much they get paid it isn't enough.  Sharon was a calming influence for me and helped us feel informed on how Hazel is doing and provided a TON of great information and advice for Hazel's care.  About half and hour went by with Hazel and I sitting together before Aubree arrived at the NICU in her wheelchair.  Needless to say, Dad's time holding Hazel came to an abrupt halt.

Hazel was in the NICU for a total of 36 hours or so...which doesn't sound like much, but it felt like an eternity.  Aubree and I would take breaks to talk with family in the lobby, eat meals, quick naps, coffee trips for me and also for Aubree's check-ups in our room.  Our immediate family was there most of the time to support us emotional and to take shifts holding Hazel.  It was a great feeling to know that someone was holding Hazel or sitting with her most of the time.  After a while you get to a point where the nurses don't ask who you are anymore when you buzz in through the NICU or if you take the short cut through Labor and Delivery.  Even our nurses in the Post Partum unit knew where they could find us.  Time crawled by slowly and we spent as many hours as we could in that room.

Sunday, October 13 -- an eye specialist is coming to the NICU to examine Hazel's eyes.  By this point her blood sugar level had normalized and the IV had been removed from her hand.  Dr. Joel Leffler is an Ophthalmologist who was kind enough to come to the hospital on a Sunday to check Hazel's eyes.  Aubree and I left the room while he conducted his exam at the urging of the nurses...eye exams on an infant can be painful to watch.  This is when we got our first diagnosis and explanation of Hazel's condition, Peters Anomaly.

That afternoon Hazel was discharged from the NICU.  My sister and I were in the room with Hazel while she was moved from a special NICU bed into a normal, rolling crib.  Our nurse Sharon overheard Aubree say that Hazel looks better without a hat on, so Sharon modified a hat to make Hazel a special headband with a bow.  Like I said earlier, Sharon was a gifted nurse who took special care of our girl.  I told her that Hazel would come back and visit one day to see her...a promise I plan to keep.  Aubree was still in our room when I brought Hazel back to the room.  I've never seen Aubree's face light up the way it did when she saw Hazel entering the room.  Not the first time we met, not when we got engaged, not when we got married or even when she told me she was pregnant.  THAT was the happiest my wife has ever been and that made our family feel even more special.  I love our little family.
 

Hazel with Sharon (Day of NICU Discharge)

 

 



 

Peter's Anomaly

 

I need to start this portion of the blog by making a disclaimer.  All the information that I have on Peter's Anomaly is from my experiences with Hazel's doctors and cornea specialists.  You might find conflicting information on the internet, but I'm just writing what I know about her case in particular.  Aubree and I have been doing our best to stay off the internet to avoid misleading information or horror stories.  Plus, this condition is so rare that there is not reliable data out there for what to expect...each case is specific to an individual.  That being said...

 

For Hazel, Peter's Anomaly was initially diagnosed in the NICU by an Ophthalmologist.  Hazel's corneas are cloudy and look similar to someone who has cataracts.  Some of the commons questions we get about Peter's Anomaly...

• Can Hazel see?  Yes.  Hazel can see contrast right now...she reacts to bright lights with a squished up face and will open her eyes when you take the light away.  She will stare right at you when you are up close...but she likely cannot see very much.  Hazel's cloudy corneas are currently preventing enough light from getting into her eyes.  Light is processed through the pupil of the eye, which is currently obstructed in Hazel's view.  Without proper amounts of light getting through the cornea and into the pupil her eyes will not develop like a normal infant would. 
• So why are we doing the surgery now?  The goal of the first two surgeries is not to give Hazel 20/20 vision.  The goal of these surgeries is to get new corneas in place which will allow her eyes to start receiving light and hopefully develop like a fully functioning infant eye should.  The earlier the surgery is done, the better her chances are.  The corneas come from a donor and a cornea which is 15 years old or less will be used for Hazel.  There is no blood in the cornea, so "finding a match" for the donor is not an issue. 
• What are the chances of success?  According to our surgeon, the success rate of cornea replacement surgery in older people is very high, somewhere around 96%.  In infants, the success rate is significantly lower.  This is due to the high-alert, ninja-style nature of her immune system.  An infant's immune system is extremely protective and is less likely to accept new tissue at such an early age.  From what we understand, success results of cornea transplants for infants ranges from 20% to 25%.  However, our doctor believes that his success rate is higher than the figures you will find on the internet.
• Will this be Hazel's only cornea replacement?  No.  Hazel will need multiple cornea replacements throughout her life.  Dr. Bowman has had patients who have their first replacement cornea last until they are 18 years old...but that is the high-end.  Once again, the goal of this surgery is for her eyes to start developing...not to fix her vision permanently.  The good news is that as Hazel gets older the success rate for cornea replacements also increases. 
• When and Where is the First Surgery?  The first surgery is on Friday, November 1 in the early morning at Cooks Children's Hospital in Fort Worth.  Dr. Bradley Bowman is a fellow Baylor Bear who will be performing the surgery.  Dr. Bowman will establish the weaker of the two eyes and do the cornea transplant on that eye first.  Following a few weeks of observation and post-op care, the second surgery will be in December of this year.

 

Those are the most common questions I can think of at this point, but I know that I've answered other specific questions along the way.  After a while all the conversations you have run together.  If anyone reading has a specific question feel free to post it in the comments of send me an e-mail (GrantWiede@gmail.com). 

I will do my best to update everyone once the surgery is completed next week.  Until then here is a great list of people who could be prayed over this week if you have room on your prayer list...

• Grant, Aubree and Hazel
• All of Hazel's Grandparents, Aunts, Uncles and family
• Dr. Bradley Bowman who is doing Hazel's surgeries
• Hazel's Anesthesiologist for the day of the surgery
• The staff at Cooks Children's Hospital

Thank you again to everyone who is taking the time to read about Hazel and keeping her health in your prayers.  We are so overwhelmed with the support and generosity of everyone and will continue to thank God for the amazing people who have been placed around Hazel.

Early Impressions

When I was a kid my Dad and some friends from church put up a basketball goal in our driveway. This might have been the single best moment of my childhood...the ability to play basketball 24 hours a day. I've always loved basketball. Even in the years before we had our own goal my brother and I would play Nerf basketball in the house and pretend to be our favorite players. We spent our hard earned chore money investing in basketball cards, posters,  Beckett magazines...there was no such thing as too much basketball. 

On a trip to San Antonio my Grandparents found themselves eating at the same restaurant as David Robinson, The Admiral himself. I'm not sure if they knew exactly who he was but they asked for two autographs for their basketball obsessed grandsons. I couldn't believe they had actually met one of the best players of his era while he was in his prime. I cherished that napkin...I kept it in my tiny cash box along with my favorite cards and took it out most days just to stare at its glory. But the most important thing is HOW David Robinson signed that paper napkin - with a bible verse under his name.  Hebrews 13:5-6

"Keep your lives free from the love of money and be content with what you have, because God has said, “Never will I leave you; never will I forsake you.” So we say with confidence, “The Lord is my helper; I will not be afraid. What can mere mortals do to me?” (NIV)

This was the first bible verse I took the time to memorize...it's amazing how much impact you can have on someone without ever meeting them. What an amazing person...to have so much fame and wealth but he still takes the time to sign an autograph and remind his fans that money is not the focus of life.  God is life and should be the focus. 

Aubree and I have been overwhelmed by the generous spirit of the people in our lives in the first 11 days of Hazel's life. All of the meals, e-mails, cards, flowers, Facebook messages, visits, phone calls, prayers and donations to Hazel's surgery are incredible. It doesn't matter to me if someone sends a two word text or a long-form message...everything helps us feel the love from the body of Christ.

Sometimes it just helps to stop and say thank you to everyone.  To stop and praise God for the people who we see on a regular basis and for the old friends who have reached out to give us support. You don't know how much you mean to us but you do.

Surgery is a week from Friday and we are continuing to pray for a successful procedure and a smooth recovery for Hazel.

Hearing Results Are In....Kinda

Well, today was our trip to the Pediatric ENT office in Frisco to get a closer look at Hazel's tiny ears and to evaluate her hearing.  The office is relatively small and they were running behind this afternoon.  So we ended up seeing the first doctor at 3:15 instead of at 2:15 when our appointment was scheduled...but at least I got to see the majority of the movie "Up".  It's all about multitasking lately.  Anyways...no one is checking out this post to know what I do with my miniature moments of free time. 

The exam portion went really well and Hazel was surprisingly cooperative.  They were able to get a microscope aimed into her ear canal and everything is where it should be...ear canals are a little small, ear drums looks good and everything is structurally intact.  They said they had to use the smallest tools that they own to clear out some build up from her ears...but it is a good thing that there was ear junk to remove since that could have messed up our initial screenings.  One of the best portions of the exam was that the doctor could not tell a difference between the ear which almost passed the hospital's hearing screening and which ear had no response at all. 

Next was a visit to the audiologist who works out of the same office.  They attempted to do their own hearing screening.  Basically they put baby sized headphones into her ears that are tube shaped.  It was dead silent in the room with the exception of the rhythmic sound of Hazel going to town on her pacifier.  Unfortunately, the equipment they have on hand was not small enough to fit her ear canals and too much noise was present to get an accurate reading.  They are ordering smaller attachments just for Hazel and a detailed test of her hearing will be done in the next few weeks.

I think that these inconclusive results would have stressed Aubree and I out in a world where hearing was Hazel's only challenge.  But today felt like a major win and gives us a much needed morale boost.  We are doing our best to stay positive but the last 24 hours or so have been rough until now. 

We appreciate all of the  encouraging Facebook posts, notes, e-mails, messages and prayers from everyone.  I honestly did not think that so many people would care enough to read about Hazel on the blog...as of right now, there have been slightly more than 3,250 page views on the blog.  Simply incredible.

I'm still planning to catch everyone up on our road to this point...more posts coming soon. 

Hearing Exam

So I'm a little behind on my updates, but I still plan to get some more posts together that detail our experiences in the NICU, what Peter's Anomaly is and details on Hazel's surgery.  Just have to find the time to do it all!  Today I've resorted to typing from my phone while one of my appointments is running late.  At least it feels good to do something useful instead of aimless browsing the internet while I wait...

In any case, today there is a more immediate need for prayer because we have a trip to have Hazel's hearing examined today at 2 pm. In the hospital Hazel failed both of her hearing screenings...although she nearly passed the screening in one of her ears. The nurses assured us that there are plenty of infants who do not pass their first hearing screening.  From what I understand, some babies need more time to absorb the fluids that can hang around in their ears after exiting the womb. The nurses also said that lots of the newborns who fail their initial hearing screenings will pass the same screening a week or two later. 

Hopefully this is the case for Hazel...we could really use a win.  

At this point it would be a relief if we were just able to focus on her vision, surgeries and navigating through the mess that is our changing health care landscape. It's hard to get straight answers since we have individual insurance and Blue Cross is more than a little confused on how the health care changes affect our situation. 

So please be praying for good news today at our doctor visit...we are both pretty nervous about the results. This time of waiting for test results, bills, surgery and other news can be overwhelming. Right now her are able to enjoy Hazel as a regular child but things are about to start happening and happening fast. I just hope things start to break right for my little girl. 

The whole family: Grant, Aubree, Hazel and Gus

156 Hours

 

It's 7:30 p.m. on Thursday night and it has been 156 hours since Aubree and I arrived at Baylor Medical Center in Frisco.  Hazel was a week late and it was time to induce labor before she went too far past the due date.  The contractions started a little after 9 a.m. and were predictably mild for a few hours.  We would roam the hallways and watch Netflix on the iPad...looking for ways to pass the time until things started to kick into high gear.  Time flew by at a surprising rate and by 11:30 p.m. it was time to start pushing.  It was not exactly the way you see it in a movie or TV, you know, where the water breaks, she pushes really hard aaaaaaand there's the baby!  Our situation was more typical of real life and after two hours of hard work, Hazel finally made her entrance into the world.


October 12, 4:45 a.m. - Aubree is in our room and Hazel is screaming in the nursery as I stand by for her first bath.  She hates it.  But what would you expect from a newborn?  I snap a few pictures to show Aubree and decide to get a few hours of sleep since I had been up for nearly 23 hours.  Being a parent of an actual human and not a baby bump is a BIG difference.

October 12, 7:00 a.m. - Nursing shift change!  Nurses don't care what you're doing during shift change...it's time for them to pass the baton and introduce you to your primary nurse for the next 12 hours.  Don't get me wrong, the nurses are great and care a lot about the women who give birth and the newborns who are under their care.  We were fortunate enough to know a few of the nurses from various classes took at the hospital.  It makes a big difference to see a friendly face in a new environment.

October 12, 7:30 a.m. - The on-call pediatrician comes to our room to introduce himself.  This is when our typical labor and delivery experience got turned on it's head.  We learned that Hazel was in the NICU after her blood sugar levels dropped and that her eyes are cloudy.  I don't like to talk down about people, so I'll just say his bedside manner was.........lacking.  The news was not well received and we felt very alone all of a sudden.  Can she see?  Is she in pain?  Is this common?  Will she need surgery?  What can you tell us!?  A million questions enter your mind and all you know is that you know nothing.

It is a strange feeling to go through a full pregnancy with the office visits, classes, preparation and have it shattered in a 3-minute meeting.  I don't know how to describe how it feels in that moment.  Shocked is probably the best word.  Shocked + Afraid + Sad + Hopeless...whatever that is...

 

First Picture with Hazel & Dad

 

Next Time: Life in the NICU

Hazel Everette Wiede

Our sweet girl Hazel was born on Saturday, October 12 at 1:24 in the morning after arriving a week after her due date.  We have been praying for our girl for a long time, asking God to bless us with a safe pregnancy, good results at check ups, a smooth labor and delivery and most importantly for a healthy child.  We have experienced a scare or two during our routine check-ups, including a consultation with a sonogram specialist who had to take a closer look at the ventricles of Hazel's brain when she was only a few weeks old in the womb.

 

I get it, all parents are scared to some extent.  Personally, I am an optimistic person...some times to a fault.  So when we had to see a specialist for Hazel's brain all I could say is that "everything was going to be ok".  And when Hazel decided that she was not ready to come out, I told Aubree that "everything is ok, it will happen when it happens".  Through an induced 17-hour labor and 2-hour delivery I tried to keep the energy in the room as positive as possible. 

 

But when Hazel landed in Newborn Intensive Care Unit (NICU) before she ever came to our hospital room I felt helpless.  Sometimes we felt hopeless.  The pediatrician informed us that Hazel's blood sugar had dropped and they had sent her to the NICU to help her body regulate the blood sugar in her system.  Infants who have trouble regulating blood sugar is not uncommon in the NICU, they had several "sugar babies" who came in and out of the NICU during our visit.

 

The main issue that we are dealing with for Hazel is her eyes.  Hazel has been diagnosed by a pediatric ophthalmologist as having a rare disorder called "Peter's Anomaly".  This condition causes her eyes to appear cloudy, similar to eyes which have cataracts, and does not allow her eyes to properly receive light.  We know that Hazel CAN see right now but she can't distinguish much more than the contrast between light and dark.  When she is near sunlight she squishes her faces and gives you an angry look and when the light is taken away she will open her big blue eyes.  I will go into more details with later posts but the end result of Peter's Anomaly is that Hazel is having her first eye surgery on November 1 to have cornea replacement surgery. 

 

So why am I starting this blog?  It's 98% for Hazel...there is already an army of prayer warriors who have her health on their minds and want to receive updates.  It's 2% for the sanity of Aubree and I...this will be a great outlet for our feelings, fears and how we are praying for our faith in God's plan.  It will help us to make this blog available so that we don't have to relive and re-explain everything that's been going on.

 

What are we asking of our friends and family?  Pray for Hazel and do it ask often as possible.  Don't read this and think to yourself that you will keep Hazel in mind...take 30 seconds, close your eyes and ask the Lord to show mercy on her sight.  Aubree and I believe in praying boldly and specifically for the things in our life that need prayer.

 

I will do my best to blog with updates and the daily happenings in Hazel's life.  There won't be a whole lot of posts about her first bath at home or our crazy sleep schedule.  All of that is normal for babies...we want you to know about her eyes, medical check-ups and health first and foremost.

 

In the coming days and weeks I will be posting on the following topics: our hospital and birthing experience, our experience in the NICU, our visit to the pediatric ophthalmologist who will perform the surgery and what will happen next.

 

We love our friends and family more than can be expressed in the written word.  But I want to say thank you to everyone who has been sending messages, e-mails, bringing meals, attending baby showers and keeping us on their prayer list.  There is no way we can do this on our own and we praise God for each one of you who is actively involved in our lives.

 

- Grant, Aubree and Hazel