The Adventure of Mason James…

Day 1: The Best Day of my life!

Mason started to make his presence known around 11 pm on August 2nd in the form of contractions.  By 3 o’clock on the 3rd we were checked in at AAMC.  From then until about quarter of 10 we waited for the green light to PUSH!  Crystal handled the contractions very well and I was amazed at how calm she remained throughout the entire process.  Not once did she yell at me, or raise her voice and even the nurses were impressed with her demeanor.  They couldn’t believe it was her first child.  Once the green light to push was given I spent the better part of two hours staring at the top of Mason’s head while Crystal did all the hard work.  At 11:52 PM on August 3rd my 7 pound 8 ounce son was born.  Waiting for the baby to be born to find out his sex was difficult but the payoff was absolutely worth it.  I was the first person to know that he was a boy, and it was awesome.  I knew I was going to be emotional, but I wasn’t prepared for the wave of emotion that came over me.  Almost immediately Crystal and I started pouring out tears of joy.  He was absolutely perfect!  I walked down to the waiting room welcomed by friends and family and even though I tried to hold it together I lost it again.  Shelly even has video.  Crystal and I ended the evening alone in the room just staring in awe at this beautiful child that God had blessed us with.

 

Friday:

The day started like the last day ended, us being engrossed in our awesome son.  Visitors came through as well as the Pediatrician.  Everything was good and everyone loved him, he was so chill through everything and he never seemed to cry.  On the Pediatrician’s second examination he noticed a small murmur in his heart and ordered a echo cardiogram.  Murmurs are normally not a big deal but it was just a precautionary test.  A few hours later Crystal gets a call that Mason has tumors inside of his heart and asked her which hospital we wanted to have him transferred too.

BAM!   Punch in the Gut!

We both kind of lost it a bit and tears were shed, and then me being me, I jumped on google and started doing research.  HUGE mistake as that just got me even more worked up to the point of sobbing.  I never knew you could love someone you just met as much as I loved Mason and now something might be wrong with him.  After gathering myself and getting my emotions under control I spend some time in prayer and quickly had a peace that Mason was going to be ok.   From that point forward I promised myself I would have a positive outlook until I had a reason to think otherwise.  I was then tasked with telling EVERYONE else what was going on and trying to do it in a way that didn’t freak them out.  While I was able to stay strong, everyone else had their chance to cry and or freak out.  The day ended with us and some friends and family at Hopkins waiting for the rash of tests to begin on Mason so we could figure out what was going on.

Saturday:

Enter the term “Tuberous Sclerosis”.  All we really knew at this time was that Mason had several tumors in his heart and that they were more than likely Rhabdomyoma tumors.  In most cases when these tumors are present in the heart the patient has Tuberous Sclerosis.  For the low down on TSC go here and do some reading.

http://www.tsalliance.org

Since TSC can effect other organs in the body the doctors wanted to do tests on Masons brain, kidneys, and eyes to check for more tumors.  Everything came up clear except he has some lesions in his brain.  At this point we haven’t had the chance to talk to the head neurologist yet but from what I’ve been told so far the lesions are in a place that aren’t likely to cause seizures, but nothing is guaranteed.  TSC is something that 1 in 6000 babies are born with and the symptoms vary greatly from person to person.  Sometimes it goes completely undiagnosed, and sometimes it can have major issues.

Bottom line is the future is unknown for Mason, the tumors in his heart should reduce in size and they aren’t causing any issues with the flow of blood in and out of his heart.  As long as they don’t cause any arrhythmia he shouldn’t experience any  symptoms from them, but there is a chance that other tumors could pop up throughout his body as he gets older and throughout his life.  We’re praying that he will be fine and not experience any issues and now that we know what he has we can keep an eye out for things and he will more than likely get yearly examinations done at Hopkins.  Crystal and I will raise him and treat  him like every other child.  All we can do is love on him and thank God for every day that goes by without any symptoms.

A couple things that popped into my head throughout this whole ordeal is that James is my favorite book in the bible, and one of my favorite things to talk to people about is perseverance.  One of my favorite verses is James 1:12. “Blessed is the man perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.” Shelly also found out that Mason name means “Overcomer” and she found this verse.  Revelations 2:17 “He who has an ear let him hear what the spirit says to the churches. To him who overcomes, to him I will give some of the hidden manna, and I will give him a white stone, and a new name written on the stone which no one knows but he who receives it.”  We both have faith that Mason will overcome all of this and will live a full life.  We appreciate everyone’s prayers so far and if you’re still reading this I appreciate you taking the time .  Mason should be coming home tomorrow and Crystal and I would appreciate a couple days to just love on him and get adjusted to having him home before everyone starts coming over to see how beautiful he really is!

Thanks and God Bless,
Chris