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.