OUR TRIALS

Daddy & Brady Patrick, 1 day old

Aidan & Conner are not our only children.   On May 4th of 2005 Brian and I welcomed our first son, Brady Patrick to the world.  Brady was a gorgeous little beefcake baby just like his dad, with the same cleft chin – nearly 10 pounds with a full head of red hair.  It was 5 days after my 37th birthday (which I thought was my 36th – somehow in my pregnancy brain I lost a whole year!).  Brady was born with Downs syndrome; (a fact we had known since our 12th week of pregnancy) and a heart defect quite common for children with Downs.  As soon as he was born, Brady was rushed to the NICU to monitor his heart. and some other issues.  When I first say Brady again he had a feeding tube and an oxygen canula in his nose and he was hooked up to a pulse oxygen monitor that seemed to alarm every 3 minutes. I spent the next 3 days sleeping in my room without him and then sitting in a recliner all day holding him.  On the 2nd day the IV's began, first the hand, then the foot and then the head.  To see your child cryout while they try to find a line and then seeing those tubes poke out of their delicate limbs is heartbreaking. On day 3 Brady also suffered a chemical burn in his right foot from a faulty IV it left an enormousness wound on his leg that would take months to heal.  On Mother’s day I was discharged from the hospital and went home without my son.  I would spend the next 2 weeks of my maternity leave in a recliner in the NICU from early morning until Brian was almost too tired to drive us home.   

BRADY PATRICK - MOTHER'S DAY 2005     
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I prayed every day to see those IV’s out of my son’s hands, head, to not have to listen to the oxygen alarms and finally the day came and we brought our son home.   I think we slept – all of us – at least 12 hours that night.  I was determined to soak in every remaining minute, and every sweet baby smell of what was left of my maternity leave.  Sadly 12 weeks goes by very fast – and I had to go back to work. Brady was doing well, he was so full of smiles and such a happy baby.  He needed oxygen 24/7 but was in the capable and loving hands of my Mom and my Lovey (grandma).  I enjoyed going back to work, I loved the deals, I loved the analysis, I loved my co-workers and employees and I was comfortable and actually blessed that my mom who had waited so long to be a grandma was enjoying her time with Brady. 


But by my second week back to work Brady’s cardio team determined it was time to correct Brady’s heart, he was strong and the time was present.  We never for a moment doubted the plan.  We had surgery and all appeared to go well.  Don’t get me wrong seeing your child lie motionless on a gurney with a stitches from his throat to his navel is horrific but he came out of it so beautifully and so quickly, we were out of the PICU in no time.  On Sunday we were getting ready to go home when Brady began to accumulate fluid in the pleural cavity – this was due to damage in the lymphatic tissue around his heart. It had been “nicked” during surgery.  We were upset, but still we remained confident in our team and their plan. 

I always tell people the worst place to be when you are trying to get well is the hospital.  Over the next two weeks we were in and out of the PICU, Brady had been dehydrated, that led to blood clots, then he developed a staph infection, that led to an increased heart rate, that led to a medication that was to slow his heart but actually caused it to stop. 


One of the few and only evenings Brian and I slept at home we were quickly awaken by a call to return.  I know Brian flew like the wind but time seemed to just move so slowly, I couldn’t walk fast enough, the elevator seems to creep up the floors and then as we turned to his room we saw the crowd of nurses and doctors.  I could hear my own heart beating it was so loud I couldn’t hear anything else – what could have happened; were we too late; was he gone?  I know it was only seconds but it seemed like an eternity before we made our way into the room.  Brady was lifeless on the bed and they were resuscitating him.  Seconds later in a whirlwind we were on our way back to the PICU.


That night in the PICU Brady coded twice more.  A parent should never see their child in this situation once let alone three times.  After much prayer Brian and I decided that we could not let Brady endure that again – or maybe it was that we could not endure it again.  We asked the doctor to put a DNR (do not resuscitate) on Brady.  Brady seemed to rally and over the next 2 weeks there were lots of ups and downs.  We were blessed to have our friends rally around us with almost 24-hour support.  Brian and I never left again and bless her heart my Mom made lots of middle of the night trips back up to be with me.  People we never even met or knew were praying for Brady.


On Friday the 7th of October – Brady was 5 months and 3 days old I took a shower in the PICU bathroom and readied myself to leave the hospital for a meeting with my Partners.  I felt Brady was stable, Brian and my Mom were there and this was important.  They had supported me for weeks, really months and I felt safe going, I felt a peace I had not in weeks.  I didn’t cry when I left but I was anxious to get the job done and get myself back to that room.

When I returned Brian was asleep, sitting up on what had been our couch, bed and dining room chair for weeks.  I think for the first time I saw the realty of my son’s condition.

His blood pressure was stable but they had pushed so many fluids that he was bloated to twice his size.  His right leg was black from his toes to mid-calf; they had damaged a vein in his leg trying to get a central line into it – and the leg had already been damaged from the NICU stay and now it was necrotic – it was dead.  He was still on the ventilator and I had not heard his sweet voice in so long.  I had not fed my own baby and I had not been able to hold him in my arms, against my heart for weeks.  In that moment, despite what my eyes saw, I felt peace.  I knew the reality of this world would not save Brady, that he had surely fought the good fight, that he had brought people to the Lord that never even prayed before, he had done his job and it was time for him to go home. 

His blood pressure was stable but they had pushed so many fluids that he was bloated to twice his size.  His right leg was black from his toes to mid-calf; they had damaged a vein in his leg trying to get a central line into it – and the leg had already been damaged from the NICU stay and now it was necrotic – it was dead.  He was still on the ventilator and I had not heard his sweet voice in so long.  I had not fed my own baby and I had not been able to hold him in my arms, against my heart for weeks.  In that moment, despite what my eyes saw, I felt peace.  I knew the reality of this world would not save Brady, that he had surely fought the good fight, that he had brought people to the Lord that never even prayed before, he had done his job and it was time for him to go home.

Brian awoke almost immediately, he agreed with me right away.  In time I would find that he had been here at this moment for some time but needed for me to find my way there on my own.  We talked to our team and they all agreed.  We gathered our family and I held Brady as they removed the remaining IVs and the ventilator.  Brady was so heavy and so stiff from the fluid but I was so comforted to have him in my arms again after so long.  Despite what was in front of my eyes and in my arms, I still wanted to believe.  I thought maybe God would let me keep him; maybe he wanted to give us a real miracle that no one could deny; that He would hasten him – that he would breath on his own.  Alas he did not; he curled the corner of his lip in a small smirk of a smile for the briefest of moments, then his eyes closed as if he was falling to sleep as he had in my arms so many times before.  He made a small gasp and he was gone. 

You think you will cry out; I am sure everyone was crying but I couldn’t hear anything but my heart pounding again, it seemed muffled and almost in slow motion.  I don’t know how long I held Brady, but my arms became so tired under the weight that I couldn’t hold him any longer, I was afraid I would drop him.  Brian took him and held him to his chest, my dad held him and my mom.  Eventually everyone else left the room.   Brian and I were alone with Brady, we bathed him one last time.  We dressed him in a favorite sleeper – it barely fit he was so swollen.  Then the nurse took him; there would be an autopsy and then we would to have lay our son to rest.

It was late now, but still light out, we gave most of the toys in the room to the hospital, my brother helped us load up what we wanted to keep and all that we had accumulated in the room and the three of us got into the elevator silently.  I knew I was going to break, I just wanted to get out of the hospital, into the car and again the elevator seemed so slow.  The last few weeks just played over in my mind all the way down to the garage.

Once we pulled out of the parking garage I began to cry.  I cried until I couldn’t cry anymore and then I cried again.  I cried for 3 days straight.  We had to shop for something to bury our son in – we had to write an obituary – we had to tell everyone that what we had prayed for – would not be and then on the 10th – we had our son’s memorial service and our son was cremated. 

We were blessed by every second of our time with Brady.  Blessed to be his parents, blessed to know his spirit and his beauty and we would not give up one tear if it meant not having our time with him.  Even in the darkest days, even in the saddest moments, we never thought of a life without Brady – our biggest concern was how would Brady’s life be without us.