July 18, 2013

Til death do us part

**This is the fourth post in a long series.  If you would like to read from the beginning, you can find that post here.  In this post I share a deeply personal experience full of incredible joy as well as profound sorrow.  It is the end and the beginning of a story that has forever changed my life.  Something I never want to forget.**

Samuel’s diagnosis was not at all what we had expected.  It wasn’t what the doctors expected.  To say we were in shock would be an understatement.  David and I returned to our sleeping quarters, exhausted from the past week’s roller coaster ride, disappointed about what would be the outcome of our first child’s life, and utterly overwhelmed with heartache.  All of our hopes and dreams for this baby were washing away, out of our reach.  We had nothing to hold on to.  No control…  So we cried.  We cried alone.  We cried together.  We took turns comforting each other.  Never in my life have I felt such pain.  I thought the first time I might feel a pain so deep would be when one of my parents’ died.  Not from the death of my newborn son.

Getting up to pump in the middle of the night was like rubbing salt in a wound.  Not only was my child going to die—who knew when—but I would never experience the unique bond between us that nursing could develop.  I was going to continue to be milked by a machine. 

After far too few hours of sleep, I lay in bed the next morning wishing the day had not yet come.  Perhaps if I had stayed asleep the reality of yesterday would have remained just a nightmare.  Neither David nor I wanted to go to the NICU that morning.  It was so painful to accept that our hopes for Samuel would never come to fruition.  But Samuel still needed his mom.  He still needed his daddy too.  Somehow I would have to muster up the energy--the courage—to go forward.  Lord, please give me strength.  I am really going to need your grace today.  And so it began. 

My mom was going to meet us at the hospital around 9:00.  We managed to get ourselves ready for the day and force some semblance of breakfast down our throats.  No matter the amount or quality of food we consumed, at least we maintained that ritual to have a built-in time for prayer, a built-in time to reframe our mindsets about the day, about the path God had set us on.  Our son, Samuel, was the most amazing gift we had ever been given.  Samuel made it full term.  We got to meet him.  And we were getting some time with him—we couldn’t predict how much time, but every day, every hour we did have with him was going to be something to treasure for the rest of our lives. 

The three of us—David, my mom, and me—found Samuel looking absolutely peaceful swaddled up in his crib.  His nurse, the one we had worked with the day of the MRI and dry-breast experiment, was ready to help us maximize our time with him.  Would we like to get some footprints and give him a bath?  Oh!  That would be so nice!  Of course it wouldn't be a “normal” bath since we’d have to work around all his cords, but it would be Samuel’s normal. 

My mom stayed close by, camera in hand, as David held Samuel to have his prints taken.  The nurse asked if we wanted Samuel’s hand prints.  David and I looked at each other and laughed, “You can try.  But I doubt he’ll let you.”  Samuel always had little fists.  We had never seen his fingers open except when we pried them open while he was deep in sleep.  But Samuel’s nurse wanted to try.  Of course, Samuel didn’t care for the idea and refused to help her.  His way was the only way.  And his way was a closed fist that he’d rather shove in your face.  I popped Samuel’s bink in his mouth to help sooth him as his nurse realized it was going to be a far more difficult task that she anticipated.  David reassured her we really didn’t need hand prints.  We would always remember Samuel for his fists.   I washed the ink off Samuel’s fingers and the nurse proceeded to get footprints.  This was a much easier matter.  We managed to get several sets--a memory that we'd always hold dear to our hearts.   

After David and I wiped the ink off Samuel's feet, we took a moment to weigh him one more time. Our little boy had dropped a significant amount of weight when he first arrived at the NICU.  Not only had he gained all of it back, but nearly a whole pound more as well!  

At 9 days old, Samuel weighed 7 lbs. 12 ounces.  All with the help of mamma's milk.  I felt so much pride knowing that I could feed my baby, that my milk was something precious, something that could not be substituted not even by the hospital.  It was enough to help Samuel grow, for however long he would grow. 

David and I placed Samuel back in his crib while the nurse bustled around collecting the supplies for a bath.  She scrounged up a bath tub, some luke warm water, several towels, wash cloths and of course some Johnson & Johnson's baby shampoo.  My heart skipped a little beat when I saw the shampoo.  In all my preparations for the baby, I was going to prohibit that stuff from entering our house.  All those phthalates and parabens and nasty chemicals (perhaps you heard about the formaldehyde)...I couldn't possibly expose my baby to those things!  Good grief, I was being ridiculous.  Little did I realize how petty those worries were.  Today, I was going to bathe my baby with sweet smelling, gentle shampoo that had been used for generations.  This was possibly going to be the only time I would ever bathe my baby.  And that shampoo would be just perfect.  

Because we wanted to protect Samuel's PICC line (the IV line), we decided to give him a sponge bath rather than immerse him in water.  We removed all his cloths and laid him in the crib on a puddle pad. I chuckled because it was same kind of puddle pad used during my labor.  We then covered Samuel with blankets straight out of the warmer.  He was so content to lay there, warm, snuggly.  Mommy was right there, talking to him.  He was perfectly safe.  I leaned down to kiss his forehead, rubbing my nose in his auburn hair.  Lots and lots of kisses, all over his soft skin.  He loved those kisses so much, raising his eye brows and sucking his lower lip in satisfaction.  I could kiss him forever.

The nurse came over and asked if I was ready to start washing his hair.  Oh yes, I would love to!  I hope the water doesn't bother him too much.  I hope this doesn't make him overwhelmed and upset.  Okay, I'll just be very aware of his response to the bath and adjust accordingly.  Trying not to reveal my anxiety to Samuel, I carefully scooped a cup of warm water from the bath.  I placed one hand along his temple and forehead to protect him from getting any water in his eyes or ears.  Slowly, I trickled the water over his hair.  

Samuel squirmed, surprised by the new sensations.  I reminded him everything was okay, I was there, and leaned down to kiss his forehead again.  I squeezed a small drop of shampoo onto my finger.  I paused, noting the reality of this situation.  I was bathing my son.  He wasn't dirty, per se, he hadn't even really developed any kind of "cheese" in the folds of his skin.  But I was getting the chance to bathe him.  We were bonding in another way: touch.  I gently started to massage the shampoo into Samuel's hair, rubbing in small circles from his forehead, along his ear, and to the top of his neck.  Just as Samuel would relax when I would rub his head in the football hold, any tension that Samuel was feeling suddenly dissipated. 

My mom captured these moments, snapping the camera often so as not to miss a single one.  As I was rubbing Samuel's head, she joyfully announced Samuel was almost smiling!  He absolutely loved having his hair washed!  Now, it's generally known that babies don't truly smile until 6-8 weeks old.  Perhaps this is true from a physiological perspective, but in the way my newborn son could--he radiated absolute joy, smiling in response to having his head rubbed.  I suddenly felt a surge of love for my little boy, in this moment he and I were sharing something that would forever be in our hearts.  It was in that moment I finally believed that he knew I was his mom.  I was the one he had come to know so intimately in the last nine months, through the beating of my heart and the vibrations of my voice.  And now, through the touch and smell of my hands.  We would forever be bound through our love for each other.  

I finished meticulously bathing Samuel, carefully washing each crevice, gently rubbing his sensitive skin.  

He had really chunked out in the last week!  So many rolls to work around, including an adorable double chin hiding his little neck.  The joy of bathing Samuel was matched by the gorgeous weather.  Sunlight filled the NICU, casting a gentle glow on everything in the room.  As we dried Samuel's head, that sunlight highlighted how truly red Samuel's hair was!  His hair was definitely no longer brown.  We had ourselves a sweet little redhead.  :)  Who knew!  

Bathing Samuel was incredible.  We learned even more about him--about his love of massage, about what helped him feel secure, about his expressiveness.  We didn't have much more time before we had to meet with our palliative care team, but every minute we did have we would spend it with him. Of course I still needed to pump, so while I took a little break David helped dress Samuel in clothes we brought from home.  

We had several outfits for our new baby washed and ready at home.  All of them were gender neutral, all of them we planned to use for all of our babies long after Samuel would grow out of them.  But this outfit we had chosen specifically for Samuel.  Back when we were on the east coast, people would constantly ask us, "What are your hoping for, a boy or girl?"  This question really irritated me.  I would usually reply that I'd simply like a happy, healthy baby.  Ten fingers.  Ten toes.  I seriously could care less if it were a boy or girl.  One night, David and I were discussing my frustrations about this question with one of my girl friends.  She was agreed the question was rather strange, so sarcastically added that we better hope it's not a hippopotamus!  From that point forward, our little baby was our baby hippo.  I found these onesies from Carter's about a month before Samuel was born.  Seven white onesies all with baby animals appliqued on the front.  One of the seven animals was a hippo.  Perfect for our baby hippo. :)  

I couldn't believe the morning had passed so quickly.  Did we really have to go meet with the palliative care team now?  Why couldn't we just wait, spend more time with Samuel and pretend everything was going to be okay?  Both David and I were incredibly nervous to have this meeting.  We didn't know what to expect, we didn't know what kind of scary information we would receive, we didn't know how we would handle the information.  
We met with our assigned social worker and case nurse.  Both gave us big hugs of reassurance before leading us into the meeting room.  In the room, we were greeted by one of Samuel's neonatologists, the palliative doctor, and another nurse.  The conference table was bare other than a box of tissue.  Windows let in the beautiful sunlight, a source of comfort for me in that moment.  A reminder of God's grace.  The palliative care doctor started the conversation.  We discussed what David and I understood about Samuel's condition.  It is terminal, nothing we could have done about it and nothing we can do about it.  Knowing that, how would we like to proceed?  Where on the scale of "extending Samuel's life at all costs" to "cutting out all medical intervention immediately" would we like to be?  This decision is of course deeply personal.  Each family has different values and therefore a different approach.  For us, the decision was something neither of us wanted to make.  Neither of us felt we had the wisdom or understanding of God's plan for Samuel, so how could we possibly be the ones responsible for the decision?       

Earlier in the day and after a great deal of prayer, David and I agreed we would not work to extend Samuel's life at all costs because no amount of medical intervention could fix his underdeveloped lower brain functions.  Samuel's body would never be compatible with life.  Therefore, it made sense to explore the possibilities of simply helping to keep Samuel as comfortable as possible until the very end. Samuel's neonatologist walked us through the possibilities slowly, answering all our (my) questions with great patience.  He explained that a "comfortable-til-the-end" approach would minimize the amount of medical intervention.  For example, Samuel had been receiving a heel stick every six hours to test his glucose levels.  As long as the glucose levels tested low, the doctors would administer a hydrocortizone shot through the IV.  If we wanted to proceed with drastic medical intervention in hopes of extending Samuel's life as long as possible, continuing these tests would make sense.  But these tests are frequent, and they hurt.  If we chose to simply ensure Samuel's comfort until the end, then it would make sense to cease testing his glucose levels and stop the medication.  

I was shocked to hear that we could stop monitoring Samuel's health, that we could discontinue any further medication.  Weren't all the tests and medications helping our baby throughout the last week? Did we do all that in vain?  Was the medicine actually making him uncomfortable?  I was very confused.  I didn't want to do anything that would expedite Samuel's death, didn't want to do anything that would kill him.  It seemed that if we chose to discontinue Samuel's medication, the medication that helped stabilize his glucose levels, the cause of death would then be hypoglycemia.  Something we could prevent as long as we continued the medication, right?  Why would we choose to let Samuel die of something we can control?  We can't control the lower brain functions but we could control the glucose levels, so why stop controlling those?!  My confusion was mixed with fear, anger, helplessness.  So many emotions, so much chaos.  This really was no different than what we had been experiencing the past week--more finite, sure, but no more chaotic.  In every other chaotic situation, I had sought order.  I could gain a sense of order if I had more information.  So we continued to ask questions.  Both doctors provided an overwhelming amount of information, all very helpful, but it was heavy information.  Complex information.  

The last bit of info we were asked to consider was if and when we wanted to give the "do-not-resuscitate" order.  The what?  Do Not Resuscitate Order.  You know, should Samuel stop breathing in the NICU we wouldn't perform CPR and/or put him on a ventilator.  I stared at David, my mind blown.  I did not know we had this kind of power.  I was still adjusting to the roll of Mom, and as far as I knew that roll did not include choosing when to let my child die.  Mom of a NICU baby is of course different, but even after a whole week in the NICU I still did not fully understand the goal of NICU care.  Until now.  Now, in a sudden moment of clarity, I understood that babies in the NICU were receiving every ounce of medical knowledge and care to not only help them be able to live on their own, but in many cases this kind of medical intervention was saving the babies' lives, and might even include the need for resuscitation.  Without the NICU nurses and doctors our Samuel would not be alive today.  He had yet to be in a position where he needed resuscitation--I had not considered the fact that he could have needed resuscitation before we got the diagnosis--but now we were being asked to consider whether or not we would like to give the do-not-resuscitate order should that situation arise.  Until we give that order, the nurses and doctors will continue to do everything short of a miracle to save Samuel's life.  But there will come a time when we have to give that order...when we make the decision to not do everything possible to save our son's life.  

What a burdensome position to be in!  What makes David and I qualified to determine when we will stop doing everything possible to save Samuel's life?  We are his parents.  We conceived him, I carried him in my womb, birthed him.  We gave Samuel life on this earth, and now it is up to us to decide when we will just let him die?!  It all seemed too much to process right then and there in the meeting, so we decided to reconvene the next day.  The neonatologist was called into another meeting.  Upon getting up from the table, we thanked him.  In a very gentle, paternal manner, as if we were kids of his own, he squeezed my shoulder then David's shoulder as if to offer reassurance, to say "you guys are so strong," to remind us that they will do everything we can to make Samuel comfortable.  We were in such great care.  What an incredible blessing from God to have been given the opportunity for working with such an incredibly gifted and compassionate medical team.  

David and I left the meeting room shocked, exhausted and yet determined.  We had to find a way to decide what was best for our son.  The past week was full of pivotal parenting moments, forcing David and I to act outside our comfort zones, outside our expectations.  This new twist was no different.  Yet, in an abstract way it was.  This was the ultimate test of our faith.  And we had every reason to continue to turn to God.  He had not left us alone yet.  In every step of this journey, He provided us with someone or something that would help us over one hurdle after another.  Today, the Lord provided us with our parish priest.  We had only just met our priest two months prior to Samuel's birth in a meeting to prepare for his baptism.  Still new to the parish, we really hadn't much time to develop a personal relationship.  Father was busy running a large parish and Catholic school.  He has one of the busiest schedules I've ever known a priest to have.  But today, the day after I called him with the news of Samuel's diagnosis, Father made the hour and half drive south to visit us in the NICU.  He arrived just after we had met with our palliative care team.      

We took some time to pray, discuss the events of Samuel's birth and diagnosis, and explore the ethical obligations we had in determining what was best for our son.  Father provided us with much needed reassurance about our actions in accordance to God's plan.  We were morally obligated to provide Samuel with the necessities of life--food, water, shelter--as long as he needed them.  Other than that, our moral obligations were to help Samuel be as comfortable as possible until he dies.

A huge weight seemed to be lifted off my shoulders, off David's shoulders too.  We recognized that we had a responsibility as parents to care for our son.  At first, it seemed we needed to do something about his situation, to act in a way that would affect the outcome of our son's future.  In fact, we were trying to control our situation, ease our own sorrow, extend our time with Samuel.  Our inevitable future coping with the loss of our son could be postponed if we continued significant medical interventions.  But many of those interventions would likely cause Samuel to be uncomfortable. Clearly, our motives had been self-centered.  Even the reasons behind not giving the do-not-resuscitate order were all about David and I.  We were afraid of how we would cope with Samuel's demise, his death, the feelings of emptiness that could ensue, the possibility of isolation.  We were not sure we would be okay.  But Samuel would be okay.  He would be in Heaven.  He would reach the goal that David and I strive for every day.  We didn't need to worry about Samuel.  Instead, we needed to let go of controlling our future.  Our decisions for Samuel should not be based on our Earthly desires.  We would have to let go of that control.  We would have to place our complete trust in God that He will provide even after Samuel was gone.  That He will care for us, support us, and bring us healing.

That night we stayed with Samuel as long as we could.  The idea of sleeping in a building a block away from our son was terrifying.  What if he died while we were sleeping?  What if we weren't with him?  We gazed at Samuel, so sweet, so peaceful in his crib.  Today was incredible--bathing him, holding, kissing him.  We hadn't yet given the no resuscitation order, so in theory if anything happened while we were sleeping the NICU team would do everything short of a miracle to save Samuel.  David wrapped his arm around me and started praying.  

Lord, thank you so much for the gift you have given us in Samuel.  Thank you for giving us a diagnosis.  Thank you for the opportunity for us to prepare for the end of Samuel's life, for his return to You.  Please give us the courage to be present with Samuel so that we can offer him our fullest selves, our deepest love.  We ask that You bless us with wisdom and understanding, so that we can know and accept Your plan for Samuel and for us.  Thank you for all the support we have received from our friends and family.  Please bless all our friends and family that they, too, may find peace with this situation.  Lord, we know that Your way will be done, but give us the courage to accept Your way.  We pray that in Your time, Samuel passes peacefully and that we can all be together as a family.  Tonight, please bless him and keep him safe.  Amen.                 

I leaned over the crib and kissed Samuel's forehead as I had done so many times before, soaking up every detail of my son.  His skin, so soft from the recent bath.  His hair smelled so new.  The way he sucked on his lower lip, his brows relaxed.  His fists, clenched as always, but now resting under his chin on his chest.  Content.  Happy.  Loved.  By remaining present in the moment, each and every second, joy surged through my heart.  Fear of losing him was brewing in the background, but I had acknowledged earlier that this fear stemmed from selfish roots.  Why let the fear diminish whatever time we had left with him?  Searching for the courage to say goodnight, I swallowed my tears, took a deep breath and blessed my son with a sign of the cross on his forehead.  Goodnight, sweet Samuel.  May God bless you and keep you always.  I love you. 

The following days were miraculous.  The courage David and I found within ourselves was like nothing we had ever experienced.  We found the courage to live in the present moment rather than worry about the future.  We found the courage to pour every ounce of ourselves into loving Samuel. We found the courage to smile, laugh, and feel joy.  We also found the courage to allow ourselves to feel fear, worry, frustration and anger.  We found the courage to trust in God's plan, to trust that God would take care of us after Samuel returned to his arms.  David and I truly felt the hundreds of prayers being offered for the three of us, as if we were being carried by Jesus himself, carried through the storm. 
Wednesday, two days after we had received Samuel's diagnosis, we needed to make a couple scary decisions before our meeting with our palliative care team that afternoon.  But first we wanted to see how Samuel was doing.  Since we hadn't received a phone call overnight, we assumed nothing major had happened.  Hopefully our little boy would be in a good mood.  :)  Apparently the limited poking and testing was making a huge difference!  Additionally, Samuel's PICC line had been removed!  Samuel had been fully weaned from the IV, and was receiving 100% breast milk through the feeding tube. These adjustments certainly seemed to help Samuel, for he had slept peacefully all night--no change in his condition--and he continued to be at peace that morning.  Thank God for one more day with our son! We would continue to make memories today.  Memories we would cherish forever.              

Those memories included having our family photos taken.  One of the (many) beautiful things the hospital provided to families who will lose a baby was a complementary professional photography session through an organization called Now I Lay Me Down to Sleep (truly a remarkable organization, check out their website here).  We had Samuel dressed in the outfit from home.  I had done my hair and wore makeup for the first time since weeks before Samuel was born.  We were comfortable, we were ourselves.  We were our little family.  Our grief counselor brought us a miniature rosary for Samuel and a soft blanket for him to rest on.  Over the next hour, the photographer helped us forget we were in the NICU.  He captured our joy, our sorrow, and everything about Samuel.  David and I took turns holding Samuel, carefully moving the cords.  Upon saying goodbye, he informed us the pictures would take roughly four to six weeks to process, but if we needed anything sooner just let him know.  Why would we need pictures sooner?  That seemed strange, I'm sure four to six weeks would be just fine.  I was just happy to have these pictures whenever we would get them.

After the photographer left, we had little time before our "decision" meeting.  We needed to eat lunch, I needed to pump, and we still needed to decide what we were going to do.  Even though I'd grown accustomed to leaving Samuel behind whenever we continued our "normal" lives (i.e. feeding ourselves), it still tore at my insides every time I had to say goodbye.  I had taken for granted the fact that I would have to juggle feeding myself while holding Samuel, or figuring out how to run errands with a newborn.  It was very surreal to go about my daily routines without my son in tow.  

Over lunch, David and I prayed, talked and mulled over the decisions we had to make.  What was best for our son?  We both knew deep in our hearts that we just wanted Samuel to be comfortable to the end, and we wanted the three of us to be together.  In our first meeting, it was actually suggested that we take Samuel home.  The three of us could be together, just us.  Just our little family at home.  We would be discharged from the hospital, free from most medical interventions that seemed to be keeping him alive and drive him home.  No freaking way.  There was NO way I was risking a 45 minute drive with Samuel. What if we never made it home? What if he died on the way there?  I just couldn't fathom being in that position.  But Samuel had been doing well...-ish.  Was there actually a way to make it safe for him to ride 45 minutes in the car?  A car seat was certainly risky, but were there other options? What would it be like to take him home?  Would we have medical support available, like an in-home nurse?  Dozens of questions filled my mind.  I would need answers, I would need information, before being able confidently agree to bringing Samuel home.    

We walked into our meeting, greeted by the same palliative care doctor from the day before, our social worker, our case nurse, our grief counselor, Samuel's nurse (our favorite one who was there when his eyesight was diagnosed), and the neonatologist that admitted Samuel on his birthday, April 22.  It was a team of people we had learned to trust.  People we knew would do everything as best they could for us and for Samuel.  David and I knew we had made the right decisions for our son.  So we began.  

It is our wish that Samuel be made as comfortable as possible until the end, minimizing all sources of pain.  I paused, looking to David for reassurance.  He grasped my hand, and not looking away from David, I said, "Should Samuel stop breathing, we do not want to resuscitate him."  I turned my eyes back to the palliative doctor, "We are giving the do-not-resuscitate order."  Okay.  That was it.  The words were given.  Should Samuel stop breathing from this point forward, with or without us by his side, he will pass.  

I looked for more information regarding what the end of life might look like for Samuel.  The palliative doctor explained demise may be a simple slowing of breath until his body no longer has enough oxygen to function.  Perhaps he could start experiencing seizures.  Perhaps Samuel would experience pain as his systems started to shut down.  Perhaps his digestive system would deteriorate to the point that Samuel could no longer handle food.  He may start to regurgitate, and it may come to the point that Samuel could die from asphyxiation.  We do not know how Samuel will die, we can only guess.  But either way, David and I will have a hospice team by our sides helping us to manage the day-to-day changes.  

All this information, however gruesome I may have perceived it just a week ago, was incredibly helpful.  We now understood what we were facing.  Unknown, sure.  But having never witnessed death before, having information about what it could look like was incredibly reassuring.  I felt confident that I would be able to experience it with Samuel.  I could be there for him to the end.  This surge of confidence reaffirmed our second decision: David and I wanted to take Samuel home, after a few baby steps if possible.  We'd like to feel comfortable with him off the oxygen monitor.  We could use practice in identifying when he needs increased oxygen support.  We want to feel more comfortable suctioning his excess secretions, so that we can better meet his needs when a nurse is not around.  We would also like to try rooming-in with him here at the hospital while we still have support from the nurses we have grown to trust.  

Great!  Our case nurse immediately started making phone calls to see if there was a room available for us that night.  Oh, but I'm not sure I'm ready to room-in tonight. Perhaps tomorrow?  Either way, if you change your mind the room will be available.  Okay, but what about all our stuff in our room across the street?  Our social worker made a quick phone call confirming we can leave our stuff there until we are discharged, free of cost to us.  Wow!  So we're really doing this?  We're really working to bring Samuel home, free from the hospital environment.  This was just so amazing, we couldn't believe it! The palliative doctor started making arrangements for hospice care near our house shortly thereafter. The grief counselor offered her reassurance--she would stop by tomorrow.  Samuel's nurse left to pack up his NICU things in preparation for whenever we were ready to room-in.  We were left with the neonatologist.  He had been silent during the whole meeting, as it turns out from shock of the situation.  His first day on the job happened to be the day Samuel was admitted.  He had yet to experience death of a patient in his new role, in this new hospital.  Our son, his first patient, would be his first death.  He expressed his sincere condolences, offered reassurance that he and the rest of the NICU team would do everything in their power to make Samuel comfortable.  He acknowledged his admiration of us, Samuel's parents.  How we were so strong and so willing to love Samuel, regardless of the situation.  This doctor suddenly looked so young to me.  He, just like us, was gaining wisdom through this experience.  Our physical youth made that all the more apparent.  

We returned to Samuel, excited for what was to come.  Who knew how much longer we had with Samuel, perhaps we wouldn't even make it home.  Our goal was to go home on Friday.  Of course, that would totally depend on Samuel.  But it was a goal, and up until that point we would continue to live in the moment, no differently than we had been.  I picked Samuel up out of his crib and sat to rock him.  David sat in a chair next to us.  We talked.  Laughed.  Noted all of Samuel's sweet little quirks. Prayed, thanking God for this amazing gift.  Our son, so cute, so sweet, a reflection of our love.  Truly a miracle that we'd had 10 days with him so far.  We heard a bell, which stopped us in our tracks. David immediately looked up at Samuel's monitor, then chuckled.  That bell was not Samuel's bell.  His monitors had been turned off.  We would no longer be alerted of Samuel's condition.  We would simply have to use our parenting instinct to assess how to meet Samuel's needs.  David and I looked at each other.  Most parents don't have to monitor their child's face color on a regular basis.  A child's ability to process oxygen through their blood stream is something normally instinctive, and doesn't usually need to be worried about.  Our parenting experience would be different, but at least we were parenting. 

Samuel's night time nurse stopped by to see how we were doing.  Had we considered moving into our suite yet?  She would be happy to help if and when we were ready, even if that meant at 11:00 that night. This was our moment, our moment to jump in and be parents 24 hours a day.  I giggled, nervous, excited.  David nodded.  Yes.  Let's do it!  It was surreal watching the nurse unplug all the monitors, move Samuel's oxygen supply to the portable tank, stuff the cradle drawers with extra diapers, bulb syringes, cotton balls, saline solution, etc.  We were really doing it.  We were moving out of the NICU!!  Down the hall, into the elevator, turning the corner to the rooming-in suites we found our room.  It was compact, had a pull-out bed, small bathroom with a shower, a sink, a TV.  Just enough space for Samuel's crib by the in-wall oxygen.  His nurse connected him to that main supply, ensured we were doing alright, and said goodnight.  If we needed her, just give the NICU a call and she'd be right up.    

Suddenly, for the first time, Samuel, David and I were alone as a family.  Quiet.  Just the three of us.  I was completely overwhelmed with joy.  Nothing could make me happier.  While Samuel was content, asleep in his crib David and I made ourselves comfortable in our room.  The rocking chair was placed between the bed and crib, perfect for middle-of-the-night comfortings.  David turned on the TV, just as he would have if were at home.  ESPN of course.  :)  He picked up Samuel, made himself at home in the chair, and relaxed.  No bells.  No scheduled interruptions.  No tests.  Just mom, dad and Samuel. 

A few hours passed and it seemed responsible to try and get some sleep.  Even though we were both exhausted, we were still a little more apprehensive.  What if Samuel had an oxygen deprivation spell while we were sleeping?  There weren't any bells to wake us up.  Samuel would either have to recover on his own or would die quietly.  David wrapped his arm around my shoulder as we stood over Samuel.  He reminded me that God would take care of Samuel no matter what happened, and He would take care of us.  Together we prayed that the Lord bless Samuel and keep him safe, that if it was time for Samuel to return to Him, that it be done without pain.  At least we were all together, alone as a family in our room.  

We laid down next to Samuel.  I could see him breath, his face so perfect and relaxed.  I felt a wave of peace sweep over my own body.  In that moment I knew God was watching over all of us. So, the three of us slept. 

I woke about three hours later to my little boy's cough-like cry.  I was immediately alert, evaluating what Samuel needed.  I thought at first he was experiencing gas pains.  Perhaps we just needed to rock with him laying tummy down on my lap while I patted his bum.  After 20 minutes he was still inconsolable.  Obviously he didn't need food--he was on a continuous feed.  Perhaps he wanted me to stand--he always seemed to know when I was sitting, and he much preferred if I stood and bounced him.  Another 10 minutes passed, bouncing in the football hold while massaging his head.  Still upset. Ugh, an hour and half until his next dose of gas medicine!  Poor guy!  By this point I was getting exasperated.  The oxygen was cranked pretty high to help combat Samuel's tendency to gasp during a crying fit.  I really needed to figure out what he needed so we could help him calm down.  We just changed his diaper two hours ago, he shouldn't need it changed now.  David noticed my tension and offered to help.  He took Samuel for a little bit, trying to comfort him, "shhh-ing" in his ear, an effective method in the past.  Another 10 minutes passed, still no progress.  Perhaps it really is the diaper.  Okay, let's give it a try.  David placed Samuel in his crib.  I began undressing the little man, unzipping his swaddle sleeper.  I removed his arms and started unbuttoning his footie from home.  Aaaahhhhhhh....Samuel's body and then face unexpectedly relaxed.  I removed the swaddle sleeper all together.  Samuel had finally quieted. Ohhhhhh.  David and I looked at each other.  He was HOT!!  We laughed and high-fived each other for finally figuring out what Samuel needed.  Too many layers, get them off!  We did end up changing Samuel's diaper, which happened to be quite full.  So perhaps Samuel was uncomfortable for both reasons, but he had just taught us a valuable lesson.  Sometimes our baby's comfort is simply a matter of temperature.  

The following morning we woke to the sunlight.  Oh my gosh, we did it!  We made it through the night, by ourselves! And Samuel was still with us! We had another day.  Thank you, Lord!  Just as soon as we woke, the whirlwind of appointments began.  We had visitor after visitor after visitor, all pushing to check on Samuel, get the paperwork completed for our discharge the next day, and plan our at home care. Samuel was still sleeping quite peacefully, which made the chaos much easier to handle. It seemed as soon as I opened my eyes, it was past noon.  But I had been awake for over four hours and still had not showered!  David and I were truly experiencing the life of busy parenthood.  Not in the way we expected, but missing a shower was certainly normal, right?

By dinner time, we had met with David's family priest, our social worker, our case nurse, our neonatologist, our hospice nurse, received Samuel's feeding and respiratory equipment, all while caring for Samuel.  Change his diaper.  Check his temp.  Suction his mouth.  Comfort him.  Change his feeding tube.  Give him his gas medicine every four hours.  Small tasks, each of which do not take long, but when interrupted they most certainly do!  Finally, after a very long day David, Samuel and I relaxed.  We settled in for bed.  I rocked Samuel for a couple hours, soaking up his sweet, chubby cheeks.  Rubbing his soft head, admiring the cowlick that had developed on the crown of his head.  Red hair. Wow.  I still was in total awe that our son had red hair.  As we rocked, his expressions melted my heart.  He'd suck on his lower lip and raise his eye brows.  He would furrow his brow.  Raise one eye brow.  Blow bubbles unintentionally.  Occasionally his breathing sounded muffled, which was my cue to pull out the bulb syringe.  Samuel was sleeping peacefully in my arms.  I did not want to put him down.  But I needed to pump.  David lay on our bed, Samuel asleep in his.  I pumped quietly (as quietly as a pump will allow...), totally consumed with love for my family, gratitude for the gift we'd be given.  So blessed.  

I was able to get about 30 minutes of sleep after pumping before Samuel's cry woke me.  As soon as I picked him up he calmed. He was not happy to be laying in his crib.  I rocked him back to sleep and tried to get some more sleep myself.  Not even 20 minutes later, Samuel started to cry again.  We started the process all over, rocking to sleep until his eye brows relaxed.  The routine of short sleep intervals continued for several hours.  I pumped again, and the cycle continued.  About four hours in David got up to take a shift.  Earlier he had asked if he could take a break tonight so he'd be okay to drive home the next day, so his willingness to help at this wee hour was especially appreciated.  David, Samuel and I did not get much sleep that night.  But again, this experience felt so much more like what we expected as "normal" parenting!  We did not complain.  

As the sun rose, I was too excited to try and sleep any more.  Today was the day!  Friday, May 3, we were finally going home!  I got up to take a quick shower--I had learned from yesterday.  Shower while you can or be okay in your own stink.  Refreshed, I ordered breakfast and pumped.  Samuel's nurse stopped by to do one last check up.  She had organized all my breast milk so that it was ready to go on ice.  More excitement was added to the day because my middle sister had flown up to meet Samuel and help us move home.  She had never been a "baby" person, in fact she thought babies were pretty gross.  But as soon as she saw Samuel, I saw a different person.  She cooed over his red hair. She smiled.  She thought he was cute.  She fell in love with her nephew.  I felt a new bond with my sister--we both loved the same little boy.  

Within four hours, we were ready to pack up the car and drive home.  My mom had come up with my sister, both of whom helped load the stuff from our room across the street into their car.  While they were loading, nurses, doctors, technicians, and specialists all stopped by our room to say goodbye. The outpouring of support was phenomenal, surprising even.  Everyone was over-the-moon that we were going to take Samuel home.  Our case nurse had the day off, so we were introduced to a new nurse--just as helpful and sweet as our original.  She helped us acquire a "car-bed" from the hospital as a safer traveling option for Samuel. Rather than sitting in a car seat, he would lay in the bed, secured with the same 5-point harness.  We had all we needed.  The food pump, oxygen tanks, diapers, milk storage containers, pacifiers, syringes, and all the saline we could possibly ask for.  It was time.

David and I took a few last pictures of Samuel in his car bed before we left the room.  From this point forward we would be on our own!  Our own little family until God would call Samuel home.  Simply amazing.  David kissed me, then kissed Samuel and left to bring the car to the curb where we would load Samuel.  My mom and sister had already left in their car to meet us back home.  At 12:15 PM, I signed the discharge papers.  Oh my goodness.  This is it.  Samuel, let's go home.  

The case nurse helped me wheel Samuel down to the car on a cart.  We waited at the elevator, my heart excited.  As soon as we rolled in, I noticed Samuel's color was getting dusky.  Having learned from the two previous nights with him, I simply turned up the oxygen.  He just needed a little bit of help.  We exited the elevator and walked through the sliding doors outside.  Fresh air.  For the first time my son was feeling fresh air.  But his skin...oh.  His skin.  It was so gray.  So dark.  The nurse reassured me that the natural sunlight changes the color of the skin. No, no.  This is too dark.  He needed more oxygen.  Oh no.  His tank was already at capacity.  He needed more, but the tank was already maxed at four liters of pressure.  Oh no.  This is not good.  What is going on?  The nurse continued to wheel him to the car.  She lifted his bed inside the car, David at the door helping her.  As the three of us looked at Samuel, the nurse checked the tank like I did.  Sure enough, the pressure was maxed.  Samuel was fussing, uncomfortable.  David and I were trying to remain calm.  What was going on?  Couldn't we help him?  The nurse paused, and gently spoke, "Guys, this may be it.  This may be that last spell that we were talking about."  She then took the stethoscope that we had in our bag of tricks to monitor his heartbeat.     

Samuel continued to fuss, so David started praying.  Praying so hard, so calmly, so full of faith.  As soon as we started praying, Samuel eased his fussing.  His brow unfurled.  He knew his mom and dad were there.  It seemed he felt God's presence.   

Lord, we continue to thank you so much for the gift you have given us in Samuel. We thank you for all these days that we have had with him, for all the memories we have made. Please bless and care for Samuel as he returns to to you.  Please help him feel at peace, bring him comfort, free from pain.  We trust you will care for Samuel as he returns home to you.  We thank you for the gift of Baptism so that he can return home to you.  Please carry him safely back into your arms.  We ask all in this in your name, as we continue to pray the words our Savior gave us: Our Father, who art in Heaven, hallowed be Thy name. Thy Kingdom come, Thy will be done, on Earth as it is in Heaven. Give us this day our daily bread, and forgive us our trespasses, as we forgive those who trespass against us, and lead us not into temptation but deliver us from evil.

We prayed fervently, I prayed in desperation, searching for something I could do to help my son.  All I could do was pray.  Then, an overwhelming sense of peace filled the car, a warmth like a father warm embrace enveloped us.  There is no other way to describe that feeling.  But as we prayed, Samuel was calm, and he was safe.     

The nurse took a moment as we paused in our prayer to mention his heart beat was quite slow, 50 maybe 60 beats per minute (his heartbeat should have been around 140). Our son's life was ending. And we were ready.  We removed the canula, removed the feeding tube, removed the stickers on his cheeks that held the tubes in place.  Now we saw Samuel's face in its natural beauty, what he was born with.  The nurse excused herself so we could be alone in the car with him.  There was no point going back into the hospital.  We were discharged, and therefore in theory could go home.  But we were in no position to make decisions, emotionally distant from everything but our son.

David held Samuel, tears streaming down his cheeks, shoulders curled tightly forward.  I wrapped my arm around David, and my other around Samuel.  We were together.  Samuel was not in pain.  My tears soaked David sleeve, my heart aching as I watched my son take a breath here and there.  The occasional breaths were his body's last attempts at life.  They happened irregularly, slowly occurring further and further apart.  David asked if I wanted to hold him.  At first I did not.  I was alarmed by the fact I could hold my dying son.  But this was a fleeting emotion.  I wanted nothing more than to hold Samuel in his last breaths.  I lifted his head gently with one hand, his body with the other, and leaned him up to my chest.  The weight of his head fell on my breast, triggering sobs from deep within, from a depth I had never known until now.  It was as if my heart had become a black hole and gravity was pulling every ounce of my being inward.  David held me as I shook.  He cupped his hand around Samuel's tiny body while his tears now stained my shirt.  

With a deep breath, I laid Samuel back down on our laps.  David still caressing his head, gently, respectfully.  Tears still streaming down both our cheeks, lips still trembling.  The nurse climbed into the front seat, turned and checked Samuel's heartbeat one more time.  She silently sat back, and nodded.  Samuel's time was very close.         

A decision had to be made about what David and I were going to do.  Did we want to return home, if so how were we going to get there?  We were certainly in no condition to drive.  Could people come pick us up?  What were we going to do about my mom and sister?  I had to let them know before we got home.  Did we have to stay at the hospital?  No, because you have been discharged you do not have to stay.  If we had discharged you moments later, things would be different.  Thank God, thank God we were discharged.  Yes, let's figure out a way to go home.  All I want to do is go home. Please, I just want to go home. 

The case nurse, Samuel's nurse, and one of Samuel's neonatologists who was off-duty all stepped away to help figure out a solution.  The neonatologist opened my side door and proposed a solution. If we were comfortable with it, the case nurse could drive us up to our house in our car, she could follow behind in hers.  Oh my goodness, that is beyond generous and it would be so wonderful if you wouldn't mind.  David nodded in agreement.  We removed the feeding equipment and oxygen tanks that we no longer needed from our car.  I called my mom, trying to explain what had happened without startling her.  She was driving and I couldn't risk her getting in an accident.  I explained Samuel had his last breaths, and that we were coming home.  She should meet us at our house.  It was muddled, I was speaking between sobs, I hung up unsure if she understood.  We then pulled away from the hospital, Samuel laying on David's lap, his head at the window glistening in the sunlight.

David felt for his heart beat one last time.  Just as he did so, Samuel took one last, newborn sized breath.  Driving in the sun on our way home, our son, our baby boy, our Samuel David, had died.    
The drive home was one of the most beautiful I have ever made.  The mountains on either side of us were crystal clear.  The sky flawlessly blue.  Every tree seemed greener than before.  The sunbeams, so warm, so bright, so comforting, danced among Samuel's auburn locks.  David and I were filled with so much peace as we carried our son home.  He had died peacefully.  We were all together.  We were taking him home.  And his soul...his soul had returned home too.

**Video courtesy of Mick Klass Photography with Now I Lay Me Down to Sleep**

1 comment:

  1. That video...
    there are just no adequate words to say other than...BEAUTIFUL! I wanted to leave a comment, even though my words feel so inadequate. I just wanted to let you know that I read it, and watched, and am changed. To see my friends have a baby, and then say goodbye to him, is just something that has changed me. Thank you Beth, once again, for sharing your story. I believe it is a profound thing you have done, and certainly not easy. I see that video and MY arms ache to hold him! I cannot even imagine how you feel. Will you let me hold him in heaven?

    Oh, and I loved the part about his bath. Sweet little man loved the water! :)

    I hope it has brought you a measure of peace having it all down in writing. You did so well mama.