Hazel's Life After Surgery

It's been three days since Hazel's first cornea replacement surgery at Cooks Children's Hospital in Fort Worth.  Friday and Saturday turned into much longer days than either Aubree or I anticipated as we stayed overnight at the hospital.  Unfortunately this also meant a trip from Fort Worth to our apartment and back for clothes, plus dropping off our dog Gus in Coppell to stay with his grandparents. 

We were discharged from Cooks at 6:30 am and got in our car before the sun came up for the second morning in a row.  Hazel still had her eye patch on and the "R" and "L" written above her right and left eye for the surgery had not faded.  Normally we would head straight home and jump in bed...but we had an 8:30 am appointment with Dr.Bowman's office for a post-op check.  After a stop at Starbucks we arrived in Dallas for our appointment an hour early, just enough time to close our eyes or zone out for a bit.  The doctor on-call at Dr.Bowman's office was able to remove Hazel's eye patch and take the first look at her new cornea.  The difference is incredible.  After three weeks of sitting with Hazel and looking into her eyes I became accustomed to her light blue eyes and cloudy corneas, but seeing her new cornea with a jet black pupil was like seeing her eyes for the first time.  We talked about Hazel's treatments with the doctor and about four nurses who were all fascinated with Hazel...probably since most of their patients are adults or senior citizens. 

The doctor gave us Hazel's eye drops (two different types) and an additional eye cream which must be applied daily.  Four drops from one bottle, two from the other and one application of the cream.  If you think it is difficult to give an infant one eye drop, just try giving them 6 eye drops and an eye cream every day.  They hate it and you end up feeling terrible for making them upset...that's just how it has to be.  The surgery and anesthesia made Hazel very drowsy and she slept for the majority of the first two days following the surgery.  But late Saturday morning Hazel was in her crib when she opened both eyes for the first time since the surgery.  There is not a good way for me to describe how it felt to watch her look around for the first time.  It was incredible.  It was amazing.  It was a big win for a family who really needed one.  Hazel would look around the apartment before the surgery but now it's very different.  You can see her tiny brain trying to work things out and use her right eye to see more of the world than she previous knew existed. 

If you look at the picture below you can even see light reflecting from the 16 sutures that are holding her new cornea in place.

Hazel the day after her first eye surgery

I've come across a few recurring questions about how Hazel is doing in the days following her transplant, pending tests, her new diagnosis of sclerocornea and her next hearing test...so a few follow-up answers:

What does sclerocornea means versus Peter's Anomaly? 
The new diagnosis is a big positive because it is a less difficult ailment than Peter's Anomaly, which is part of a larger syndrome.  This new diagnosis does NOT change any of the factors related to cornea surgeries for infants.  Hazel's high odds of rejecting the transplant remain and she WILL need multiple surgeries throughout her life to improve her vision.  There is not a set timeline for the surgeries such as "every 5 years" or anything like that.  Her early need for cornea replacements is so rare that every infant patient is going to have different results.  If Hazel's eyes can use her new corneas until she is 4 or 5 years old than they will be a huge success...because that would mean she was able to see and process light into her eyes for the first four to five years.  More surgeries will be scary for Hazel as a child, but they will improve her life.

When will we know if the cornea transplant was a success?
There is not a solid timeframe when they will declare the transplant as a complete success.  It is truly a day-by-day situation.  So right now the transplant has been a big success but the tides can change in a hurry.  The new cornea could fail in 4 weeks, 4 months or 4 years.  We really don't know when but the new cornea will start to fail at some point.  We will have regular visits to see Dr. Bowman and check her eye condition.  Unless you hear otherwise, assume that everything is progressing the way it should be.

When will results be in for the detailed genetic testing?
The blood work for the detailed genetic testing was taken at the hospital when she was born and takes 4 to 6 weeks to come back.  Most newborns do not get genetic testing that is this detailed but Hazel's obviously has a unique scenario.  We don't know anything just yet...still have another one to three weeks to go.

When is Hazel's next hearing screening?
The next hearing screening is next week on November 13 at the same office where she had her initial visit.  However, Hazel responds to noises and voices at home even though she doesn't have the neck strength or control to whip her head around and see what's making noise.  So we have been feeling very optimistic about her hearing and are anxious to see more detailed results on how much she can hear.

Other than that Hazel is doing well overall and is sleeping and eating plenty.  Her schedule is a little out of whack but she is dealing with major eye surgery about as well as any infant can.  The next surgery is going to be December 13 at the same location as her first transplant. 

I know how much time and thought has gone into praying for Hazel and we really do feel like it made a world of difference.  We've been reading all the passages where the Lord has healed the blind and we are asking Him to do the same for our child. 

Thank you again to everyone who has been praying for Hazel.