Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Wednesday, February 20, 2013

Day 20: Meet Mason!!!

Day 20 brings us one of my personal heroes !  Mr. Mason and his mommy mean a whole lot to me.  He put up a good fight...and changed the world in his short time here....his mommy, my friend writes "When Mason left this earth, a part of me definitely went with him.  And although his time with us was far too short, Mason will live on in our hearts forever."


In February, 2012, the world as I knew it was turned upside down.  After a roller coaster of a ride with infertility, I was finally there – pregnant and loving every minute.  I had planned a pregnant lady’s dream day… breakfast with mom, my 20 week ultrasound and off to register at Buy Buy Baby.  Never ever did a negative thought enter my mind about that ultrasound.  There are no issues or birth defects in either of our families – what did I have to worry about?  We already knew we’d be having a boy, this appointment would have confirmed that and I would be on my way to pick out all things blue.  Shame on me for taking life for granted…
On the morning of February 1st, my doctor confirmed by ultrasound there was a problem with Mason’s heart.  All 4 chambers were there, but his aorta was barely visible.  Mason was not in a perfect position so we were referred to a cardiologist a few days later who would have a better look.  My mom spent the rest of the day trying to convince me the baby was probably in an awkward position and the fetal cardiologist would give him a clean bill of health.
Days (which felt like years) later when we had our fetal echo, the cardiologist gave us heart wrenching news there was indeed a very complicated, serious problem with Mason’s heart and the only way to fix would be open heart surgery very soon after birth.  We were referred to CHOP with the highest of hopes – there tagline is “Hope Lives Here” and we were full of hope.  We were anxious, terrified… but most of all hopeful.  We would pick up our lives (and cats), rent an apartment outside of Philly and do this.  We were in this for the long haul.  This was the hand we’d been dealt and it sucked big time, but we had reached acceptance.
Mason’s official diagnosis was posterior malalignment ventricular septal defect (VSD) and hypoplastic ascending aorta.  Throughout the rest of my pregnancy, we were followed very closely by CHOP, always checking on the size of that left ventricle.  If his left ventricle was too small, Mason would have the 3 stages of surgery (Norwood, Glenn, Fontan) typically reserved for hypoplasts.  If his ventricle was a good enough size, he would have an operated called a Yasui – almost unheard of, which involved patching up his VSD and redirecting blood flow from the aorta.  We were oddly thankful at the time for that VSD – it allowed his left ventricle to stay normal size and follow a less invasive path.
On June 20, 2012 our sweet little boy was born at 1:30pm.  Due to some issues with an epidural, I was put under general anesthesia for an emergency c-section and didn’t get to meet or hold him until later on that night.  What a surreal feeling I will forever cherish… Mason was very feisty and even then as he was about to embark on this wild ride, we were so full of hope. 
The next 2 ½ months were close to impossible.  Mason’s original surgery was on 6/22 and it went off without a hitch.  The famed Dr. Spray lived up to his name and had Mason off of bypass in less than an hour.  He was extubated only days later and we thought he was on the road to recovery.  However, Mason’s health began to decline around 4th of July.  He had to be intubated again, his heart rhythm was very irregular and he showed signs of distress.  An echo would reveal he had another very small VSD which was opened up bigger by high pressures. His kidney function was also starting to be affected – this would later become our Achilles heel.  On 7/6, Mason was sent for another surgery and the prognosis was not good.  I remember so vividly sitting in the cafeteria with Keith thinking what if this is it?  This can’t be it.  If he makes it through this, we’ll be fine, he’ll be fine.  I prayed to God for a miracle, begged for him to heal Mason and did a little apologizing along the way for not being a perfect Catholic all these years.  Well Mason surprised us all, even Dr. Spray, by coming out of surgery with flying colors.  Because of his depressed kidney function, he would need to be on dialysis until his kidney’s “woke back up.”  We were ok with that – dialysis would remove the extra fluid and it would be a longer harder road than we had planned, but Mason was here and we were fighting for him to stay.
The rest of July and August were full of ups and downs and some more downs.  Yet another hole in his heart in late July – small enough to be plugged via cath, thankfully did not require open heart surgery.  Because of the location of the plug, this affected his heart rhythm even more.  It was official – he would need a pacemaker when his kidneys got better.  But his kidney function continued to decline because of issues with blood pressures.  It was a slow, painful road – dialysis helped but it wasn’t a permanent fix.  We reluctantly met with palliative care and were moved to a private room – I should have taken this as a sign but I fought with the palliative team.  I told them I was not giving up and neither was Mason, I was resistant to their words, to reality.  We argued and fought but eventually, dialysis no longer became an option when a culture showed a yeast infection growing in Mason’s belly.  This was the end.  If dialysis was no longer an option, there was no way for him to survive long term.
We said goodbye to our sweet boy on Thursday, September 6th around 5pm.  He passed very quickly, a clear indication of how sick he truly was.  The pain I felt that day and continue to feel every day is indescribably excruciating.  When Mason left this earth, a part of me definitely went with him.  And although his time with us was far too short, Mason will live on in our hearts forever.

Mason Alexander Woznica 6/20/12 – 9/6/12

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