Samuel Earl

At the time I wrote my last blog post, Sammy was having a bad night.  I got in Monday morning to find that he had needed more dopamine (almost up to the max) and had had a bad blood gas.  An early morning X-ray had showed his lungs were almost fully collapsed and he may have some edema.  Bad morning.  But he was alert and looking at Momma.  No real smiles, but bright eyes and fully alert.

Rounds told us they were going to switch him to the oscillator in place of the high frequency jet.  Basically the same idea, just a slightly different form of support.  No complaints there.  They were also going to check him for infection and what-not, a CBC and all of those good blood tests.  He was also ready for another blood transfusion.  Not surprising, his color wasn't as good as it had been (usually means they'd taken so much blood that he needed more volume).  Blood transfusion number 11.

He got moved to the oscillator around 11:30, right after rounds.  I left for lunch while they did it...too stressful for me.  After I got back, I got some time with him and noticed he looked groggy and wasn't as alert.  I could tell my baby didn't feel well.  A little after noon, they came for an X-ray to check his tubes for his oscillator...scariest moment of my life.  His oxygen dropped.  His heart slowed.  I was reliving everything I had watched Andrew go through...the resuscitation strategy...I had to back away...I am pretty sure I backed myself into the corner where I couldn't see the monitors.  It was too scary.  I was just reliving every moment of Andrew but with Sammy...

They were able to revive him, but his oxygenation never recovered.  His blood pressure was low.  He was glassy eyed...I knew things weren't right.  I did get a few moments of his eyes open, but he was looking through me, not at me.  No smiles.  I knew...

They did an echo cardiogram just to check and see what was going on with his heart.  He still had the large PDA.  He also had some hardening of the vessel from his aorta that takes blood to the rest of his body.  That means his blood pressure in his heart was fine, but it wasn't carrying to the rest of his body.  PDA surgery no longer an option with his unstable condition and the only way to help the heart condition was with medications which they were already doing.  To top it off, they told us the dexamethasone we chose to use that first week may have contributed to that complication.  Great.  Here we thought we made the right decision and it makes you question it, two weeks later.

The doctors tried so many different things...nothing was enough.  We met with the doctors that evening to find out our options were to turn off the machines, try everything we could at the expense of Sammy experiencing pain, or palliative care.  They told us they didn't feel he had a chance.  I could see it on the nurses faces...on the doctors faces...nothing was going to bring my baby back.  Cam and I both knew we couldn't put our son in any more pain, but we also couldn't give up on him.  We chose palliative care...knowing there could still be a chance.  They weren't going to stop any of his current support.

We took that opportunity to hold Sammy...to tell him how much we loved him.  I cuddled with my beautiful warm baby boy for over two hours...just loving him.  During that time, all of his stats improved...not enough, but some.  I maintained hope thinking maybe my love was enough to keep him here...to bring him back.  We went to the BP and slept restlessly through the night.  His nurse came in at about 6 at a time when I had startled awake as it was.  She told us that his blood pressure and oxygenation had dropped off through the night.  They didn't want us to lose an opportunity to say goodbye.

We went right away.  We talked to him, touched him.  Cam held him for the first time.  Then I held him.  Watching those stupid numbers on that stupid screen...knowing his body and brain weren't getting enough blood or oxygen.  It was too hard.  We knew.  We knew he wasn't coming back.  We knew he was suffering.  The only thing keeping him alive her medications and a machine.  It was too much.  We decided to turn it all off and just enjoy what time he had left.  A little after 7:00 AM this morning, he died in my arms.  His heart held on for a little bit, showing just how strong a fighter he was.  He proved that he was a stubborn, strong little boy.  We spent a long time afterward grieving and loving him.  Memorizing every part of his little body.  His perfect little face, hands, and feet.

Life will never be the same.  My sons will always be the center of my whole world.  I can't even put into words how frustrated, angry, or sad I am...there is nothing that can make this better...no words, no actions, nothing.  I can't even wrap my head around it.  But now Cam and I have two beautiful guardian angels and we will find a way to move forward together.  If anything, this whole experience has made my relationship with my husband stronger in a way I never thought possible.  Our love for our sons will always be a part of our lives, our marriage, and our love.

Samuel Earl Elliott

September 3, 2012 - September 25, 2012