Friday, August 29, 2014

Surgery Update

A quick update on Hazel (12:57 pm):

Hazel is out of surgery and Dr Swift said everything went well. She is not awake yet but we are going back to see her soon.  As far as we can tell right now, everything went as planned. 

We found out this morning that some of the information we received yesterday was incorrect -- but it is for the better!

- The surgery took about half as long as expected

- Dr Swift said we should be able to go home tomorrow instead of a multi night stay

I'll update later tonight or tomorrow. 

Head Surgery Day

Well, today is the day...Hazel is getting a tube shunt in her head this morning. For previous surgeries, people have asked for specific times or things to pray for so I wanted to make a quick list of FAQs:

1.  Surgery time is 11:00 am. Hazel cannot have anything to eat past midnight and can only have clear liquids until 7 am. Please pray for her parents from 7 am to 11 am :)

2.  The surgery will last 210 minutes, which is 3.5 hours.  (11 am to 2:30 pm)

3.  The tube will connect from her head to her stomach to drain fluid and will require two in her head and another in her abdomen. 

4.  We will most likely be staying at the hospital for 3-4 nights (Friday, Saturday, Sunday and possibly Monday). The long stay is mainly for evaluation of her ability to bounce back from the surgery mentally and physically. 

5.  Please pray for Dr Swift who is performing the surgery and for the anesthesia group. This is far and away the longest time she has ever gone under. 

I will update the blog after the surgery is over!!  Thank you to everyone who has been rocking a Hazel braclet, keeping up with the blog and praying for her. After ten and a half months we still feel a huge sense of comfort that others are lifting up our family in prayer. 

Sunday, August 24, 2014

Countdown to the Weekend

The month of August is typically a time for counting down to something, like the start of the school year....or if you're me...the start of the college football season.  But ever since Hazel became a part of our world, the normal and routine things that happen throughout the year are anything but routine.

For better or worse, our little family is counting down the days until Hazel's surgery this Friday, August 29.  You might remember from previous posts that Hazel has hydrocephalus, where excess fluid is in her head and needs to be drained.  Hydrocephalus is not terribly uncommon but in Hazel's case, the extra fluid in her head is pinching the nerves in her ears and is the most likely cause for her  hearing loss.  We don't know with 100% certainty that the fluid is the cause of the hearing loss, especially since the vast majority of people with Chromosome 6 deletions experience some level of hearing loss...but it's the most likely cause.

The surgery is being done at Children's Hospital in Dallas to place a tube shunt in Hazel's head which will drain the extra fluid.  Normally, we get to sit at the hospital or surgery center and we are home by the afternoon, but since this is a head surgery we will be spending a few nights at the hospital for observation.  Aubree and I have known about this surgery for a while -- and in a perfect world, we would have done it weeks or months ago.  But those plans were delayed since we needed to prioritize the various eye surgeries and her recent ear surgery.  In any case, we are really hopefully that this surgery will help Hazel feel better overall and could possible allow her ear nerves to heal and recover.  

Overall, Hazel is doing  really well and is slowly but surely learning how to tolerate her glasses and/or hearing aids.  She is sitting up on her own really well, has perfected the high five, will wave hello at you, make all sorts of noises like "ga-ga-ga" or "da-da-da" and will laugh at just about anything...including our ridiculous dog Gus.  We are still waiting for the light bulb to go off where she will start crawling, but that will be a good-news bad-news situation whenever she can start to crawl away from us.  

As usual, we would appreciate any prayers for the surgery on Friday and I will update everyone as soon as I can.  In the mean time, enjoy a little video of Hazel laughing at her ridiculous Dad: