Thursday, June 26, 2014

Post Op Update

We got a slight break this morning and didn't have to be at the surgery center until 6:30 am which is an hour later than the previous three surgeries.  Guess you've gotta enjoy the little things....  

Hazel had an uninterrupted night of sleep last night and was in pretty good spirits by the time we made it to the waiting room.  It was still dark outside when we arrived and the building was basically empty, but early surgery times are always better than any time later in the day.  Hazel stayed in good spirits up until about 7:30 in the pre-op room when her hunger started to outweigh any toys or funny faces that Aubree and I could offer.  All the nurses who have check Hazel in for previous surgeries always like to come by and say hello or see how much she has grown.  When Dr Smith arrived in our pre-op room Hazel was making lots of noises and getting anxious, but she LOVES Dr Smith and got a big smile once they were face to face.  Overall, this was a pretty uneventful day as far as surgeries go.  Everything went according to plan and there were not any "on the fly decisions" that needed to be made by Dr Smith or by us.  Both of Hazel's tubes have been inserted into her eyes and are fully functional.  It will be really interesting to see what her eye pressure is like when Aubree takes her in for her check up tomorrow morning.

Hazel is in good spirits and is essentially acting like nothing happened;  Aubree needed to be at work today so today I stayed home so that one of us will be with Hazel all day.  We have been playing, laughing, watched team USA vs. Germany in the World Cup, had some pureed sweet potato, had a bottle and right now she is taking a nap.  And as a bonus, Aubree works close enough that she was able to come home at lunch and see everyone for an hour or so.  

From this point, we don't have any planned eye surgeries for the immediate we are in the monitoring phase for her eyes to see how she progresses.  We did get her fitted for tiny sunglasses and tiny glasses last week since she is very nearsighted, she will probably start wearing them in the next few weeks but who knows how long it will take for her to get used to them.  

I will keep everyone updated on some of the other issues that are on our plate for Hazel, including her excess head fluid, the ear fluid which is affecting her hearing and if anything happens with her minor heart condition.  The list of things we haven't addressed yet seems daunting when you list them all together, but they seem so secondary compared to her eye problems and finding out about her chromosome deletion.  We're really just trying to take this one step at a time and enjoying Hazel while she is still a baby.

I can't even tell you how encouraging it is to have people praying for Hazel so constantly and consistently.  It is tough to quantify the impact that prayer can have on a situation.  It's just impossible to know how things would be different if no prayers or fewer prayers had been said for our daughter.  Prayer is about faith and humility and turning things over to the Lord...not just for yourself, but for those around you.  Thank you to everyone who has been so faithful to God in this time and lifted Hazel up to Him in prayer.

Tuesday, June 24, 2014

Eye Surgery on Thursday

It's that time week.  On Thursday, our little family will go to the surgery center in Dallas for Hazel's 6th eye surgery.  By this point everyone who reads the blog knows how we feel about these surgeries days...they are just about the worst.  We will go through the same motions that we've done 5 times before: Go to bed early the night before (which never works out).  Set our alarms for 4:15 am or so and barely get out of the house in time.  We'll be the first car in the parking lot, first patients in the building, we'll go through the same check-in process and sign all the same forms.  The hardest part is usually that Hazel can't eat for a few hours beforehand and can be unpredictable.  It is what it is I guess.

Overall I would say that Hazel is doing really well.  That doesn't mean that things are perfect...just that we've been in worse positions and things are slowly getting better.  There are still lots of concerns that we have about Hazel's health and more procedures to schedule.  I probably just need to make a list of Hazel's medical needs that could use prayer.  You know what...I'll add that to the bottom of the posts from now on.

I don't expect anyone besides Aubree and I to keep up with exactly what is happening at each surgery or appointment, so here is a refresher on what is planned for Thursday.  Dr Smith always starts her surgeries with an in-depth EUA (exam under anesthesia) to check Hazel's eye pressure, how previous surgeries are healing and to document how various parts of her eye are doing (Corneas, lenses, optic nerve, etc).  From that point, Dr Smith will be making a path for a tube to be placed in her right eye.  Six weeks ago, Hazel had a procedure which placed a plate and tube ON each eye and a path was created for the left eye where the tube can be placed IN her eye.  Following her surgery this Thursday, both eyes will have the tubes placed in her eyes to relieve fluid and get the pressure into a safe range.  Overall, we are hoping that this surgery is pretty straight forward and uneventful.

As usual, I will try and keep everyone up to date on how everything goes on Thursday and beyond.  If you would like specific things to pray about for Hazel, here is a list:

-  Successful eye surgery on Thursday

-  Focus and precision from Dr Smith on Thursday

-  Quick healing process

-  Hazel has fluid in her ears that is affecting her hearing... the fluid needs to be drained with a minor procedure.  It will require anesthesia, which is always pretty serious.

-  That Hazel's excess fluid in her head would normalize and not require a procedure to drain the fluid.