Monday, April 28, 2014

Me, of shaky faith

Disclaimer: I recognize I am not the only person who is suffering the death of my child(ren).  I ask these questions from my uniquely broken heart, and on behalf of all bereaved parents whose Christian faith has been rocked to its core.  Really, there are endless combinations of suffering (e.g. terminal illness, life in a third world country) that could prompt similar (though probably not the same) questions.  And I'm not expecting answers.  None of them would be good enough anyway.  Rather, I'm openly acknowledging that because of Zachary's (and B.W.'s) death, I am incredibly distraught with my faith, confused about prayer, its impact, and God's intent for a relationship with those of us on earth.  I am not quoting bible scripture here because it could be construed as being taken out of context, which of course it would be...

What shall I pray for, if not for the life and health of my children? 

When my child is suffering and on the verge of death, shall I have the audacity to pray for his return to health - a miracle - with full hope (faith) that God will oblige/intervene? 

Am I to praise God if he spares my child's life - a miracle indeed? 
Am I to submit to "it's part of His plan" if God chooses not to intervene? 

Shall I relinquish belief that God is all-powerful and only meekly ask Him for "strength in and through" whatever becomes of my child? 

Why would God give me the gift of Zachary, allow him to thrive for his first week of life, and then permit him to suffer tremendously the next, and die at 14 days old?  What kind of an impact, in the grand scheme of humanity, could Zachary's life have had in 14 days, that merits his death and our perpetual grief, as part of "His plan"? 

Why has God allowed two of my children to be stripped away from our loving family when so many other families - on the spectrum from loving to abusive - are fully in-tact?  How can suffering of this nature be so unevenly distributed? 

I do not want human answers.  I do not want answers from anyone who has prayed for their children who only live and thrive, which I assume they believe is "part of His plan".  I do not want to hear platitudes about Zachary being in a better place. 

I suppose this is really between God and me. 

Friday, April 25, 2014

Grief logic

-- On the evening of Friday, January 17, 2014 --

Things are not looking good.
Actually things are now looking very bad.
The brain scan revealed a grade 4 hemorrhage.
This is not a small one.
It's a massive grade 4 bleed.
It is so big that there is significant midline shift of the contents of Zachary's brain.
Yes, he has started to show signs of recovery from the sepsis.
Yes, his open PDA is all closed up.
Yes, on Monday, before the infection, his brain scan was totally clear.

The bleed must have been triggered by the sepsis or his body's reaction to it.

It has a global impact on Zachary's ability to function.
Cognition, motor and sensory abilities will be severely affected.
This kind of bleed does not discriminate.
We have never seen this turn out ok, or anything close to ok.  

Our recommendation is to remove Zachary's life support.
He may die on his own.
I'm so sorry.


-- Today, April 25, 2014 --

Do you know you can save 5% if you have a R*dcard? 

Yes, I know.  No thanks. 

Can I ask why not? 

(Please, please don't cry.  Don't cough up and spew out grief on this poor gentleman.  He has no idea this is your first trip to this store, alone, since before Zachary died.  He has no clue how hard this is just to be out and shopping, that your newborn should be sleeping in his carrier in the cart, that you cried all the way to the store as you replayed the words of the neonatologist on that pivotal Friday night.) 
Um, we just don't want another bill.  We'd rather have one big credit card bill each month.

But, you can get the debit card.  There is no extra bill for that...

(He's going to push me.  Of course he is.  Gretchen.  Hold it together.  You can do this.  You can break down in the car after escaping the check out line.)
Yes, but I'd have to provide my banking information and I don't want to do that.  Listen, I just don't want the card.  Ok?

Ok.  (head shaking in disapproval...) Man, someone told you that it would be that hard.  It's not.  It's really super easy.


Save 5%.  It's simple.  It's a no-brainer.  Why not? 

Because I had to give the cue to remove the tape that was holding his ventilator in place, so that he could begin to die.

Because he never felt the sun on his skin or listened to the birds chirp.

Because we had to pay for his funeral rather than start his college fund.

I couldn't care less about the items in my cart or about saving 5%. 

Nothing makes sense.  Nothing is right with the world.  Zachary is dead. 

Wednesday, April 23, 2014

End-of / after life wishes

Heads pressed together, tears and snot and breath intermingled, B heaves and sputters, choking on his words.  He can hardly breathe as he tells me.

I saw the body bag out there.  They're going to put him in it.

We are in the hospital, in October of 2006, after having just delivered our first son, B.W., who died in utero just a day or so earlier.  Fifteen hours of induced labor.  I birth my dead son, my only child.  Just six days after my 29th birthday. 

We spend time with B.W.'s dead body.  He is naked and loosely wrapped in a blanket.  We cradle him, touch him, kiss him and marvel at his features, our tears dripping all over his pink skin.  His hair is so soft, his nose so springy.  He has my lips and ears, B's fingers.  I begin to count his taste buds and realize it is impossible.  Through our sobbing and utter devastation, we try to take all of him in. 

He is ours for a little while. 

Then, the nurse comes in and says she is going to bathe him, dress him and bring him back.  Uh, ok.  I am heartbroken and shaken to my core - in complete shock - not knowing what I want, or how I want it.  It is all so wrong.  This is not at all how I imagined bringing my first child into the world.  The day before his birth, we had picked up the glider for his nursery and shopped a flea market looking for things to make his room special.  Sure.  Ok.  Please bring him back. 

She brings him back in a basket, an ugly basket.  He is tightly swaddled, wearing a funny train-themed outfit (one I did not choose, but am now forced to treasure) and a hospital hat.  There is some donated bear or stuffed animal in the basket with him which I despise, so I choose to ignore it.  We lift B.W.'s body out of this strange scene she has created around our son.  I hold him, but I can't study him, can't have the same intimate touch and experience that I did before she took him away and turned him into some kind of human baby doll.  I am angry at the nurse for stealing my dead, perfect, son.  We try our best to make the most of what's left of him and the time we have.   

And then, hours later, when we give the nod that we are done holding our dead son (how can you ever know when you're "done"?), they take his body, presumably put it in the body bag B has seen outside our door, and then the morgue, until the funeral home comes to pick "him" up. 


After years of pain and regret about our last moments with B.W.'s body, and the indecision and confusion about what to do, how to ask for it, I vowed it would never happen to me again.  That, if I were unfortunate enough to have to experience the death of another of my children, I would find a way to weed through the immediate shock, confusion and despair to discern my wishes and make them known. 


The neonatologist and nurse tell me they will try to do anything they can, anything we wish, as it relates to the end of Zachary's life.  Our dear friends want to do the same.  Through the sheer pain and exhaustion of this hell we are living - while still furiously praying for a miracle - I begin to plot our last wishes for Zachary.  C.T. and I will bathe him on his last day (something C.T. had looked forward to doing).  I will have to continue to pump breast milk during his last hours, so time and space will need to be designated.  Zachary will be baptized around mid-morning.  A nurse will help us create Zachary's hand and foot molds. There will be a professional photographer who will take photos of our last moments and any that we want after his death.  There will be a special blanket and an outfit chosen by me.  C.T. will select some books that we will read together to Zachary.  Each of us will get to hold him for as long as we wish, before his support is removed.  C.T. declares he wants to hold him 1) before he is dead 2) while he is dying and 3) after he is dead.  We don't like the seating arrangement in Zach's hospital room, where we will hold him as he dies.  I ask that it be removed and that some other, more cozy, option be brought in. 

I pull the neonatologist aside and explain that I do not want Zachary's body put in a body bag, nor do I want him to wait in the morgue until the funeral home van comes to stack "him" with any others that require transport.  I tell him that I want to walk out of the hospital with Zachary.  That I want to deliver my son's body to the funeral home myself.  He says he has never heard this particular request before.  Of course not.  I remind him that there aren't many people who have a second chance at this. 


And it went almost exactly as I planned it.   After Zachary died, and our others wishes were mostly carried out, I was wheeled down to the bottom floor of the hospital, with Zachary's body dressed and wrapped in a blanket, in my arms.  I waited for someone to ask to see the baby - I would have been proud to show him off... or maybe I would have punched the person.  I don't know because no one asked.  B went to get the car.  Zachary's doctor and nurses, and the funeral home people, waited with me and two of my children, one alive, one dead.  After tearful hugs and kisses between our family and the NICU folks, I stood up with Zachary and carried his body out in the snow and into our new vehicle, the one we had recently upgraded in preparation for his arrival.  No need for his car seat. 

I was able to give Zachary a death somewhat unhindered by protocol, tradition and the circumstances of his dying in the hospital.  I am glad that I could do that for him, and for us.  I still cannot believe I had to do it.  That he died.  

Sunday, April 20, 2014

Holiday misery

The Easter decorations didn't come out this year.  Even the thought of their pastel cheeriness seemed blasphemous in the face of Zachary's absence and our unbearable grief.  Going to church was out of the question.  We haven't stepped foot in our church since Zachary's funeral on January 25.  I can scarcely tolerate seeing all the in-tact families.  And demonstrating any kind of outward praise or worship (the kind that is expected on the celebration of the resurrection..., and really, every Sunday) feels an incredible fraud, when at home, our prayers come out only as cries of pain, mourning and anger.  "Celebrating" the holiday with our extended families was too much to bear without our Zachary.  Everything feels so drastically wrong and up-ended that the normalcy of getting together with family for food and small talk would have triggered an even deeper state of despair for us.

However, we could not totally ignore the holiday.  C.T. expected that the Easter bunny would pay him a visit, as he does each year, and that there would be some form of an egg hunt.  I trudged down to the basement last night to locate his basket and the plastic eggs.  When I found the tub of Easter stuff, there it was.  The basket that would have been Zachary's, handed down from when Cameron was an infant on Easter in 2008.  My knees hit the concrete floor as my wailing echoed throughout our home.  I want my Zachary back.  My baby.  Why?  Why?

We usually buy an Easter lily plant in memory of B.W. at this time of year.  Of course, this year, and from now on, we will always buy two memorial plants on Easter to acknowledge the perpetual absence of two of our three children.  How incredibly unfair.  How heavy the burden feels this year - the first without our Zachary. 


Today, on Easter, it has been exactly 3 months since I held Zachary, sobbed over him, kissed him a thousand times, as he died in my arms between 3:15 and 5:05 p.m.  The machine stopped breathing for him.  I watched his color fade, until he was gray and cold.  My poor, sweet, beloved baby.   

Zachary was supposed to be here with us this Easter - would have come home from the hospital about 5-7 weeks ago.  I miss him desperately. 

Saturday, April 19, 2014

Brother love (Part 1)

Like his parents, from the day we told C.T. about my pregnancy with Zachary, he never fully trusted that his baby brother would become a living sibling.  Some of the first words out his mouth were something to the effect of: I'm excited but scared. Of course, he/she might die.  I'm certain that seems (gasp) so, so troubling for people who have the luxury of shielding their children from the reality of death.  But when a child in the family has already died, there is no choice but to get real, to face the enduring consequences of that loss and the vulnerability of all of us to death.  B.W.'s absence was and is ever-present in our home - reflected in our family rituals, our values and attitudes, our priorities and our friendships.  Our talk of the new baby boy was always tempered with..., if he survives.  When we finally told our family and friends about my pregnancy with Zachary, most couldn't contain their excitement and certainty.  We grimaced and attempted some form of outward optimism for their sake, but also flailed our bloodied and permanently broken parts, to remind people what we knew firsthand as a result of B.W.'s death: that there are just no guarantees.  Not for this baby, not for any of us, at any attained age.   

Of course, this doesn't mean that we didn't have hope for Zachary.  The three of us hoped and prayed and dreamed.  C.T. imagined all sorts of things about his little brother during my pregnancy...  What kind of theme do you think he will want for his birthday?  Will he be good at math, like I am?  I'll have to go easy on him when we kick the soccer ball, right?.  I will hold him and rock him before bed, ok?  Mom, do you think I can give the baby a bath by myself, as long as you watch?  I'm going to give him half of my stuffed animals.  (Again, all of his questions and declarations prefaced by something like "if he lives,...".)

When Zachary arrived prematurely, but almost fully expected to survive and thrive, C.T. was the proudest big brother you can imagine while still somewhat cautious about Zach's permanency in our lives.  Impatient that he was not allowed in the NICU, he peppered us with questions about Zachary every time one of us returned from the hospital.  He wanted to see any and all pictures and videos the minute we walked in the door. 

By the time C.T. was allowed to see him in the NICU, Zachary was in septic shock (and ventilated, medically paralyzed and puffy with fluids).  He was critically ill, but showing signs of increased stabilization and still had a fighting chance to live and recover.  I lifted and carried C.T. over to Zachary's isolette, and although I was worried about how C.T. would react to seeing Zachary like this, it took just a minute or two for his fear of the wires and the sound of the oscillating ventilator to melt away.  I asked C.T. what he thought about Zachary.  He whispered he's so cute with his arms wrapped around my neck.  I can't even try to choke back the tears as I think about how much C.T. loved and wanted his brother Zachary.   

A few days later, on the day before we removed his life support, my sister and brother-in-law brought C.T. and my two nieces to visit Zachary.  C.T. showed the girls how he could reach in and feel Zachary's soft hair and touch his toes.  He spoke about bringing Zachary home.  It was probably one of the most painful experiences of my life to watch C.T. introduce his cousins to Zachary with such pride and optimism when I knew Zach would die the next day. 

That evening, B and I sat down with C.T. and explained that his beloved brother was so sick that he would not survive.  That all of this talk about Zachary (hopefully) feeling better and coming home was actually not going to happen.  Ever.  I saw his world crumble right before my eyes, just as mine had two days earlier when we learned of Zachary's brain hemorrhage and prognosis.  I have never heard C.T. cry and scream like he did that night.  His pleadings: He's going to die?  Why?  When did you know? I thought you said Zachy didn't have a brain bleed?  Momma.  Daddy.  The reverberations of his sobbing shook my body as I held him, tears streaming down my own face. 

C.T.'s hopes and dreams for Zachary shattered, just as we knew they could be.

Tuesday, April 15, 2014

Mothering through medical bills

I've been avoiding it for over a week now.  Zachary's radiology bills are overdue.  There was a snail mail malfunction and they never received two of the previous payments I made.  Although I have followed up and corrected those, there are more charges that have come due, or that insurance isn't paying, and the responsibility falls on me to figure it all out and make the payments.  There have already been a couple of pained phone conversations in the last several weeks, with the billing department of the radiologist.  The on-hold wait times and the abrupt tone they use for debtors like myself is not eased or softened at all by the fact that the patient, my infant son, has died.    

I sit down to log on to the health insurance site, to compare the bills I have received with the explanation of benefits and insurance payments online.  I filter by Zachary's doctors and providers.  There are 21 distinct billing entries, just for his x-rays and echo exams.  It stings all over again when I see "Newborn" as the family member who has incurred those charges.  Even after my husband spent part of an afternoon on the phone with the insurance company, imploring them to correct the error (they have had his full name since the day after his birth), many of the records still show "Newborn".  When you're expected to pay large sums of money for health care, that didn't save your son's life, you assume that all interested parties would at least acknowledge he has a name. 


I was with Zachary for his first chest echo exam.  I was warned it would be exhausting for him because it typically takes a full hour to get all of the images of the heart and arteries.  He held my finger and I laid my hand on his head as the tech squeezed the warm jelly on his chest and neck.  He squirmed and fussed a little bit at first, but ultimately fell asleep for most of the exam.  The technician was visibly pregnant and struggled to situate her body so that her arms would be at the right angles to use the probe through the portholes.  We worked together to shift and position Zachary so that she could get the hard-to-reach images near his neck.  I knew he felt comfortable because his mommy was there with him.  Throughout Zachary's life, I physically ached for any comfort or relief I could provide him, since it was my body that had put him at risk for prematurity complications. 

I was also with Zachary for his first head ultrasound.  Although he showed no signs of neurological problems or brain hemorrhage, I was on edge with anticipation about this exam and its results. The man performing the exam was so wonderful.  He put me at ease immediately with his calm and serious demeanor, and after hearing about my involvement in the chest echo exam, acted as if I were an integral part of getting the images of Zachary's brain.  Throughout the exam, while holding Zachary's hand and moving my other hand around to accommodate the probe moving around on his head, a few tears slipped out and down my face.  After the exam was over, as we attempted to wipe up all the jelly on Zach's head, the tech gently touched my shoulder and actually asked me how I was doing.  He noted how good Zachary looked.  The fact that he took just a couple of minutes to acknowledge my fear and exhaustion, recognize that this was damn hard and see the love I had for my son, meant a lot to me.  That head ultrasound, performed on Day 7 of his life, was clear.  Crisis (officially) avoided.  Or so we thought. 

A few days later, after Zachary had developed sepsis, I saw the nice tech gentleman again in the hospital cafeteria, from afar.  Zachary was finally stable enough that B and I hurried to the cafeteria to stuff our faces with some much-needed food.  I remember looking over at the tech and thinking I would never interrupt his meal, and honestly didn't have the emotional energy to speak to him in our crisis (even if it looked as if Zach might be through the worst of it).  But, I prayed for him silently, on the spot.   

One day later, at a time during which Zachary was showing true signs of recovery, that same tech would perform the follow-up head ultrasound, which is routine in cases of sepsis. It revealed the massive grade 4 brain hemorrhage, with midline shift (of the contents of Zach's brain).  Although Zachary's body began to recover from the sepsis, his brain had been all but destroyed as a result.  We weren't with Zachary for that head scan.  We hadn't been alerted of when it would happen and had stepped away from his bedside to grab a bite in the cafeteria.   

I think I would dissolve into a sobbing heap on the floor, at his feet, if I ever got the chance to come face to face with that ultrasound tech.  I'm not sure why it matters to me, but I'm glad he was the one.  The one who was with my Zachary, the one who gently scanned his brain and saw the damage first.  And I don't even know his name. 


After I finish my due diligence on the health insurance website, I swallow hard and pick up the phone to dial the radiologist billing office.  I am going to tackle this one today.  I get a recording that thanks me for my patience and asks that I continue to hold, that my call will be answered in the order in which it was received.  I wait for 20 minutes or so and then I think maybe someone is finally answering.  No.  It has put me through to voicemail where I can leave the details of my inquiry and expect a call back within 24 hours.  I hang up.  I don't know if I'll be ready, like I was today, when they call back. 

Saturday, April 12, 2014

Unrelatable me

Are you enjoying the beautiful weather?
The sun taunts my grief, reminds me that life and the seasons are humming right along while my world has been absolutely shattered.  I imagined strolling outside with my Zachary in this season and instead he lays in ashes on my bedroom dresser. 

Did you have fun over spring break?
We tried our best to provide C.T. with breaks from the grief-filled walls of our home.  Mostly, we grieved.  I spent time on the phone with medical billing people related to Zachary's care, and bills that are now due or overdue.  I had a meeting with the hospital's risk management officer and patient advocate to talk about mistakes in Zachary's medical care. These tasks are about as far from fun as you can get. 

Are you doing better?
Seriously?  Zachary is still dead. It has not yet been three months since he stopped breathing in our arms.  I wake up in a terror anew, each morning, when I realize, yes, my Zachary is truly dead.     

Innocuous questions cut me like a knife these days.  The complete ignorance about the hell I am living sends me reeling and floundering for where to begin to answer.  I try to regain my composure, shut my gaping mouth and respond in a way that honors my grief and Zachary's life, while attempting to remember that the asker has no experience with the death of a son or daughter.  I believe I have mostly failed to do this well - for many reasons including my own inadequate words, an unwillingness on the part of the asker to hear anything but positivity and distractions such as interruptions from children.  Sometimes I feel like a complete fraud when given no opportunity to "get real" about Zachary and our state of mourning, in a conversation. 

I wish there were a Zachary-shaped hole in my chest to represent the depth of my anguish and to ward off any attempt at cheerful interactions.  I wish it was still customary to have a formal, intentional period of mourning - a time during which it would be understood that patronizing a grieving parent with small talk is senseless and hurtful.

What is hard for me to grasp is that some people really think that if they don't mention Zachary, I will be somehow better off - that they, single-handedly, can spare me the grief of my dead son.  They believe I won't think about him, or be sad, unless they bring him to my attention.  They do not understand that Zachary is on my mind and heart at all times.  Every breath I take grieves for him.  There is not a thought or word or action that isn't filtered through the lens of Zachary's (and B.W.'s) life and death.  It means the world to me when the first thing someone says to me includes a reference to Zachary or how we're coping in our grief.  Conversations that keep a safe distance from the topic of Zachary feel contrived and even seem to marginalize Zachary's life and my grief (although I hope this is never the intent).     

In his book, Lament for a Son, Nicholas Wolterstorff suggests that some people find the topic of child death so painful that they feel incapable of talking about it.  They fear they will break down, or perhaps, fear the vulnerability of their own children to death. 

"So they put on a brave face and lid their feelings - never reflecting, I suppose, that this adds new pain to the sorrow of their suffering friends.  Your tears are salve on our wound, your silence is salt."

I wish I could relate to talk about the weather finally warming up, appliance failures and repairs, spring break trips, disobedient children, wrenches thrown in schedules, volunteer work, the perfect Easter basket, health scares and eating organically.  But my loved and cherished little boy, Zachary, burst into our lives and then died at two weeks old, taking the old Gretchen, and leaving only a shell of who I was.  It's all about me (and Zachary) and my grief right now. 

Thursday, April 10, 2014

Bookends of his life

Baby out, crying vigorously and active.  Placed on warming mattress under blankets in radiant warmer.  Dried, stimulated and bulb suctioned.  Baby pinked up on his own.  No respiratory distress.  Birthweight 1200 grams.  Apgars 7 and 8 at 1 and 5 minutes.  He was briefly held by mother then taken to the NICU in heated transport isolette.  

I lather on these eight phrases from Zachary's medical records like salve on an open wound when I'm attempting to deny his ultimate fate.  Those words, and the beautiful birth images they trigger for me, soothe the pain for just an instant. 

I close my eyes and I can almost bring myself back to that room and those hours.  The stifling heat, my nausea, brought on by the bolus of magnesium.  An onslaught of painful contractions.  My labor and delivery nurse and the NICU staff racing to prepare the room.  The silence of the 8-9 people in the room as I pushed... waiting to see how Zachary would do, how effective the steroid treatment had been for his immature lungs. The young nurse who cried at the beauty and size and health of our premature boy.  I remember Zachary's cry, his dark, dark hair and eyebrows, his perfect fingers and toes, his wide open eyes and outstretched arms.  The neonatologist placed Zachary in my arms shortly after they took measurements - something unexpected given his gestation of 28 weeks.  The explosion of love and pride I felt for Zachary made me feel like I was glowing and floating.  (The pictures prove otherwise.)  I knew there were going to be challenges over the coming weeks for Zachary and the rest of our family, but he was here.  Alive.  With an excellent prognosis for survival.  I can say without a doubt that his birth was the most amazing experience of my life.  

I felt so fortunate to have such a beautiful soul entrusted to my care.  I thanked God a thousand times over, that night and in the coming days, for the gift of Zachary.  The doctors reassured us that we were going to "take this one home".   

And then he died 14 days later.