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Monday, March 1, 2010

The Day I Died...

February 27th has finally passed. I've been an emotional wreck.

It has been two years since the last time I held him in my arms. I died with him that day. But...the difference between Ethan and I is the fact that I was "resurrected" into an entirely different person. I'm not me anymore. I'm not the same mother, "wife", sister, daughter, or friend.

I was so very naive before I lost him.

I thought we were untouchable. No mother ever thinks that she will outlive her own child. And here I am living that very horror. There is nothing natural about it. Our babies--no matter how old or young--aren't supposed to die. Not babies who were perfectly healthy a few days before. Not babies who barely had a taste of this world.

But there we were, losing our son.

Ethan suffered brain damage from the spontaneous bleed. There was just too much blood. The Neurologist told us that it looked like it all came in one gush. Everything was fine until he woke up from his nap. It was 5pm and he was never the same after that. Something was off so we brought him in. The ER doctor didn't recognize the symptoms...

...the unusual posturing.
...the absence of crying.
...the eye deviation. mentioning the still bleeding heel stick.

When we got to the ER shortly before midnight, the doctor tried to send us home. John and I knew something was wrong so we insisted that they start checking. Ethan was having seizures as we sat in the waiting room. But babies don't seize like adults do. We didn't know. He would look around wildly, eyes ticked to the left, but his body didn't shake.

Only his left hand did. Ever so slightly it would shake.

None of the staff knew Ethan was seizing either. I know they didn't. Even when his vital signs rapidly changed while he was hooked up to the monitors -- no one ever told us that he was having seizures. John and I frantically called the nurses and doctor over whenever it happened, but they silently looked at him with bewilderment on their face. He had seizures every 10-15 minutes in between short bouts of sleep. We sang, cried, and rocked him to try to soothe whatever discomfort he may have been in. It was very difficult for me to hold him when he was in distress. John held him.

Ethan didn't cry at all, but you could tell he wasn't comfortable.

Clearly, they didn't think my baby was in the middle of a medical emergency. No anti-epileptics (seizure medication) were given to him the entire time we were in the ER. We knew he was going to be admitted, but they didn't tell us why. It was after 7am (almost one hour after change of shift) when they began the paperwork to initiate transport to Kaiser San Francisco. So, we didn't make it to Kaiser SF until a little before 9am. Only one parent was allowed in the ambulance so I went and John followed behind. When we got in the room, Ethan let out a single high pitched shriek.

This was the last cry I heard from him.

There were three doctors and two nurses already in the room. They told us that he was having seizures as soon as we placed him on the bed. Seizures! John and I started to freak out and things went very quickly after that. They gave Ethan two anti-seizure medications as one of the doctors asked us a slew of questions about head injury and family history of seizures.

Of course, none of them applied.

They performed a spinal tap and it came back bloody. Ethan was then switched to the ICN (NICU) because he was only four days old. He was too small for Pediatrics and the ICN doctors said would be able to take better care of him. There was a lot of debate about the cause of the seizures so there a whole bunch of work up being done. His coagulation labs came back abnormal so they asked us if we had any history of bleeding disorders in our family.

Again, nothing applied to us....yet.

The Hematologist (Dr. Awesome) came by the next day and explained to us that Ethan had severe Factor VII Deficiency. She told us that it was very rare and that she was consulting with Hematologists all over the nation on what to do about him. She also explained that spontaneous bleeding happens for no reason with severe bleeders. A Neurologist (Dr. G) was also called in so she could give us all a better idea of what the long term damage would be.

I kept hearing "There's a lot of blood" over and over and over.

The blood was clotted thanks to the plasma, blood transfusions, and NovoSeven, but it would take an unknown amount of time for the clot to be reabsorbed back into his body. I thought that was good news at first, but I guess it really wasn't.

Surgery was not an option.

He had hydrocephalus. The blood was irritating his brain tissues and causing swelling. We were hoping that they could perform shunting to relieve pressure and drain the CSF, but it simply wasn't possible. The specialists in Oakland Pediatric Neurosurgery had nothing to offer our son. The clotted blood created a large cork at his brain stem (where the CSF exits to surround the brain). So, the CSF had no where to go and it was building up in the center of his brain.

It was only a matter of time before he passed.

He failed two brain death exams. He was essentially gone, but the ICN couldn't withdraw care without our consent. I didn't want to believe it. I didn't want to complete a DNR. I didn't want to withdraw care. I didn't want to utter those words period -- no mother should have to.

The most heartbreaking thing was he would still move from time to time. The doctors said they were just reflexes, but those movements gave me the most horrid feeling of hope. We were utterly exhausted and our minds were playing tricks on us. Sometimes, I would hear the other babies cry in the ICN and for a split second I would think it was Ethan. My hope would be quickly shattered as I realized that it was impossible for him to cry because he was on a ventilator.

He was admitted to Kaiser SF in the early morning and was on the ventilator by that evening -- his first night there. Ethan started to desaturate as they performed the ultrasound that confirmed his head bleed. He lost his ability to breathe on his own less than 24 hours after the bleed.

I was singing to him the very first time we saw him move.

John and I just found out the results of the MRI from his Neurologist. She was a mother and she teared while she told us the results of his EEG. She probably told parents bad news everyday, but my son's prognosis made her cry. He really was a very special boy. The ICN's Social Worker cried the day he died, too.

We took a moment to be alone with him after we found out about his poor prognosis. John and I sobbed at his bedside. I think I was in emotional denial because I didn't lose complete composure initially. I was primarily consoling John. He was taking it very hard. Call it mother's intuition but I knew it was bad before they even told me.

I was heartbroken.

I didn't know what I would tell the boys. Children shouldn't have to learn about death at such an early age. Kev and Boo were only 4 and 2. The thought of explaining to the cubs that their baby brother wasn't going to come home made me lose my mind. I was bawling when I suddenly felt compelled to sing Ethan a lullaby--the same lullaby that I sang to him when he was home from the hospital--and that is when he moved.

John and I were hoping that he moved because he heard me singing, but we knew better.

Because of that moment, I would sing that lullaby to him the day he slipped away, at his viewing, and every day at his graveside for the first year of his "afterlife". I only stopped singing after his first birthday because he was a "big boy". Even in death I didn't want to baby him. But, two years later and I still tell him to go to sleep every time I visit him.

Just like I did when I tried to soothe him as he had seizure after seizure in the ER.

His face haunts me to this day. That blank expression is something I will never forget. He didn't feel pain because his pain receptors were already damaged. And that is the only thing that gives me comfort when I think if those horrifying hours in the ER.

I wish it were me instead.

It was so hard to make the decision we did. The options were to let nature take its course and allow him to die slowly from the hydrocephalus or to give permission the ICN to withdraw care so he wouldn't suffer any longer. It was just John and I that could make that decision. No one else, just us.

I wanted a miracle.

I clutched my rosary and for the first time in my life I prayed with such furiosity that my heart hurt. I wanted a sign that everything would be okay, but things just kept getting worse. I didn't even know how to pray anymore. It had been years since I attended CCD, but I tried.

The part of me that had forgotten about God died at that moment.

I remembered Him for the first time in years as Ethan lay sick in the hospital. God had granted me many reprieves before with my own brushes with death. Even then, I didn't fully understand that magnitude of what the Lord allowed me to overcome. I thought I gave God importance in my life. Now that I look back on it, it was a shame that it took that long to understand that God was always with me. Even when I felt like I was being abandoned.

"The light of Christ shines brightest during times of darkness."

I was selfish. I wanted my boy to live. No parent should ever have to hold their dying baby. Aside from praying for a miracle to cure him, the realist in me prayed that God would take him quickly so we wouldn't have to make that decision. I didn't feel right having to be responsible for his fate.

At that time, I would have rather seen him code than have to live the rest of my life wondering if I killed my son.

Even though it was obvious that we weren't "killing" him by withdrawing care, I didn't want to making that choice. Conversely, we also didn't want him to suffer by dying a slow death. I don't think any parent should have to choose. To this day, I still wonder what would have happened if we allowed nature to take its course. The likelihood of some sort of divine intervention was less likely than what would have happened if we didn't withdraw care.

I shudder at the idea of the agony his little body would have gone through if we didn't make the decision we did.

There really was only one choice. He was gone. There was no activity in his brain. The part of the brain that controls breathing was heavily damaged by the bleed. There was no way he would live.

We had to withdraw care.

John and I didn't care about developmental damage. In fact, we were willing to care for him even if he was going to be severely developmentally affected by the bleed. We just wanted our son to have a chance at life.

Oh, how I wish we were that lucky.

We signed the paperwork. The doctors reassured us that we were making the right decision, but it wasn't enough. They also helped us mentally prepare for the possibility of Ethan not dying right away. They also prepped us on various "end of life" events that could happen when we were along.

We spent our final night holding him. I missed him already.

Ethan was extubated at 10:06am and passed away shortly before 11:00am. We played the song that you are hearing right now so Ethan would think that he was at home. My sister-in-law was spending the weekend with us when he came home from the hospital. She played Myxx over and over and over. I like to think that he felt comfort as this song played. We also brought blankets from home. We swaddled him in his soft blankets and held him until he passed. He died peacefully, without any of the scary gasping the doctors warned us about.

It was just as if he were sleeping.

He died in his Daddy's arms. I carried him into his world and his Daddy carried him out. I can only imagine what John feels like as his father. The day he passed away will stay ingrained in me for the rest of my life. The sights, the sounds, the people, the moments will always be a part of me. I was only 25 when he died -- a baby watching her baby die. My innocence died that day too. My youth died. My sanity died. My heart died. The old carefree Tiffany died. All of me wanted to die right there with him.

But I couldn't.

I had two cubs who needed me at home. But as Lord as my witness, I swear I would have killed myself if I didn't have the boys. My baby died! Who would want to live after that? Only a mother who lost her child can understand what I was feeling at that time. There are only three people in my life that probably come close to understanding what I was going through -- other mothers who lost their babies far too soon.

It is a sisterhood that I wish I wasn't a part of.

Life loses it's luster when you see your child's body in a casket. He was my baby. My son. A part of my life. And he is gone.

I had to fight to stay strong for my cubs.

Chalk it up to a delayed reaction, but there is not a big enough distraction for me this year. I am hurting and my "emotional hemophilia" has kicked in all over again. I just want to be distracted. I don't want to think about it anymore. I'm bleeding inside. I can smile and laugh and pretend that I'm okay, but dammit....I'm not okay.

I am not okay.

I've heard a couple of times before (on Catholic radio, from religious figures, from devout Catholics) that I should feel privileged to be part of such an elite group of women -- mothers who lost their babies. Being a part of this sisterhood is supposed to be a blessing. Most people have children who live full lives well into old age, but the Lord chose me to share in his Passion. I've been told that John and I were selected to be Ethan's parents for a very special purpose. God lost his Son, too. Our Father watched His Son suffer. Mother Mary outlived her Son just like I did.

It is supposed to be an honor that we share in this Passion.

I'd like to believe that this is true. Perhaps we are indeed lucky to have a child that was called to God before we were. Maybe we were chosen to suffer for a reason. I don't know the truth, but I can hope. Hope is all I have left. I can only look forward to whatever greatness He was in store for us. If I don't hold onto that belief I will have nothing but bitterness left.

And, I refuse to die completely. I refuse to lose faith.

A very wise friend shared a quote with me once. We were still in high school so I didn't fully understand the quote until just this very moment.

"There is no coming to heaven with dry eyes."

My eyes have poured oceans of tears. I suppose this is a good thing. When it comes time to meet my Maker, how deserving would I be if I've never felt suffering? Eternal life is a privilege, not a right. I am not a holy person. By no means do I believe that I get automatic admission to Heaven just because Ethan died.

However, I do believe that I am supposed to learn something from this experience.

I believe that Mary, Mother of God, wept when she lost her Son just like I wept for mine. So if there is no coming to heaven with dry eyes, then Ethan did not die in vain. Even though no amount of blankets, blood drives, or fundraising dollars can bring him back, I know he was chosen to be with God for a special purpose.

And as his mother, I can only be honored that I can shed the tears that I do.

Someday this will all make sense.


  1. "There is no coming to Heaven with dry eyes"

    My senior quote..... My mantra!

  2. It is so painfully true. Love you Jilly Boo.