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.

-Buddha



Saturday, November 12, 2011

Two steps forward..one huge jump back!



We didn't leave his side from 1:00 pm till almost 2:00 am.  Our parents took turns coming in and out of our pod, but Nate and I just sat there.  I would jump every time I heard one of the monitors beep.  Most of the time it was coming from another pod, but it still scared me.  The nurse could tell how uneasy I was.  She told me to ignore the beeps and watch her.  If she looked worried, then I had permission to worry.  I tried my best.  I still hate the sound of those machines beeping.

We took our ipod dock to the hospital.  We spent a lot of time playing music and singing to Xavier while he was in my belly.  So we played him lots of music and sang to him.  His heart rate would go down when he was listening to his favorite songs.  He likes "Black Bird" by the Beatles, Adele's verison of Bob Dylan's "To make you feel my love".  Tons of Pink Floyd, Prince, Phil Colons, way too many 80's songs and even theme song's from TV shows.  The theme from Growing Pains is still a hit.  We are a music family.  Nate is extremely talented and I love music.  Playing and singing in the hospital was good for the soul.  Good for my soul, Nate's soul, Xavier's soul, the nurses soul, the doctors, even the other patients.  Sometimes a song would make me cry, sometimes it would make me laugh.  A few times I fell asleep listening to music and staring at X.  The day of and after surgery were pretty uneventful.  We sat and he slept.  We had a sleep room the night after the surgery, but we didn't get much sleeping done.  I just could not be that close and not be at his bedside.  On Thursday, June 2nd, we did a  more of the same.  I felt so blessed to be able to sit there with him.  He even opened his eyes a few times.  His beautiful blue eyes.  He was so puffy and a little orange.  But he was perfect to me!!  Our parents finally convinced us to go the RMH and get some sleep.  The nurse told me to call as often as I needed to, and that if she needed me for any reason she would call.  I knew in order to be the best mommy I could be I should sleep, but leaving was hard.

We got to RMH at 3:00 pm..and I passed out.  Nate promised to call the hospital every hour.  Each time he called all was well.  My mother woke me at 6:00 pm to eat.  I ate and went right back to sleep.  I finally got up around 9 pm.  We hung out for a bit and then I had to sleep some more.  Nate called the hospital at 11, our nurse, Nicole,  said that he was doing well and was sucking on his binky.  That news made it much easier to fall back to sleep.  Then at midnight, my phone rang.  In a sleepy haze I hit ignore.  Thank God, Nate was awake working.  He asked what I was doing, what if that was the hospital.  It took me a minute to even realize where I was.  Not more then a second later, Nate's phone rang and my heart fell to my feet.  It was the hospital.  All they would say was that they needed us to come in right away.  We fumbled to get dressed.  I cried as I threw on the first ratty old T-shirt that I could find.  That cynical voice that I had been pushing down since this whole thing started took center stage in my brain.  "He is gone..your little boy is gone and you left him there.  He died without you there to tell him how much you loved him.  You will have to live with this for the rest of your life.  You are a horrible mother."  The drive over should take 15 minutes without traffic, I think it took 8.  A few inappropriate gestures were made and I am pretty sure we cut a few people off.  CHOP shuts down at night.  You have to go the long way to get to where our Xavier was.  My mom went to register and Nate and I flew through the hospital to get to an elevator that was working.  Finally it stopped at the 6th floor.  We raced to the CICU, down the hall to our pod and stopped.  His bed side was littered with people in scrubs, hair nets and masks.  They seemed pretty calm, but I was shaking and having a hard time standing.  A very young woman whom I had never seen before started walking toward us.  I just prayed for angels to come and hold me up.  She asked us if we were the Ross family.  We both nodded our head and Nate grabbed my hand.  "Everything is ok.  We had a bit of scare, but he is out of the woods.  He is going to be fine.  Dr. Gaynor is here and he wants to speak with you.  Go ahead to the bridge.  He will meet you there.  Give us a few minutes to clean up and you can come see Xavier."  I hugged this woman whom I had never met.  Then I broke down.  My mom was on the bridge waiting for us.  Her face had no color and I could tell by her blank stare that she was praying.  We told her what the doctor had told us and we all hugged and cried.  We spoke with Dr. Gaynor.  He explained to us that when they pulled the chest tube out some blood and air was trapped in his chest.  The pulling of the tube also nicked one of the lines in his heart.  That line started to trickle blood that was getting trapped in his chest since the tube was not there to drain it. This caused his lungs to collapse and he was losing significant blood.  Our ROCK STAR nurse noticed a change in his behavior and color.  She turned him to his side to try and make him more comfortable and noticed blood seeping out of the stitched up chest tube site.  Fate again was on our side, because the best cardiologist on the planet, Dr. Wernovsky was on call that night.  Along with Dr. Gaynor he saved Xavier's life.  They gave X a blood transfusion to help bump up his platelets. This was a set back.  They had to put a pig tail drain in his side, put the chest tube back in and keep him on the breathing tube for a few days longer.  We stayed in the hospital that night.  I never wanted to experience anything like that again...ever.  Dr. Wernovsky and the rest of the staff all came over to check on him.  They said that he like lots of attention.  He became almost a celebrity after that.  And the whole unit started to call him X-man because as bad as it got that night, his heart rate and blood pressure stayed perfect.  SO now everyone knew what we had known all along, our little guy was a fighter!

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