Grieving our Infant Loss

The first thing we were told by our grief and loss counselor while still in the NICU was everyone grieves differently.  Yep.  That couldn't be more true.  I have witnessed more accounts of grief in the last three months than I ever imagined I would in my lifetime.  I have learned that reading articles or books or blogs about "how to grief the loss of a loved one" is not very helpful for me simply because no one's experience is like mine.  BUT.  Reading others' accounts has definitely helped me accept my unique grieving experience as being perfectly normal.  My perfectly normal.  :)

People have asked me--or perhaps secretly wonder--how I'm doing.  About six weeks ago I hated that question.  It was a dumb question.  Dumb because how I was doing was a general question.  It seemed people didn't actually know what to say to me, so they decided that simple question was the best approach. I mean, what does a person say to a mom who just held her baby as he died at only 12 days old?  Even now, I honestly don't know what I would say to someone in a similar situation.  But I wouldn't ask "How are you doing?".

Why exactly is that a dumb question, you ask?  Six weeks ago it was a dumb question because I didn't want to talk about how I'm doing.  I wanted to talk to you about my son.  I wanted to tell you about him.  Tell you about his little quirks, the joy he brought us, how he changed us.  I want to tell you about what it was like holding him as he died, as his soul went to Heaven.  I think the hardest part about the question, and this is still true today, was that my honest answer to "how I was doing" surprised people:  yes, I missed my son.  I was (and some days still am) incredibly overwhelmed with sorrow that I don't get to raise him.  However--and this is a BIG however--I felt more joy over the fact that we got to meet our son, got to spend 12 days with him, getting to know his spunky personality.  I felt joy over the fact that we were able to baptize him so that he could be return to our Father in Heaven.  We had so many happy memories in those 12 days.  I have no regrets.

Sharing my joy about my son, even when he was no longer with me, really seemed to shock people. That perceived shock led me to question my grief.  Was I actually grieving "properly"?  Was I dishonoring the memory of my son because I was mostly joyful and at peace with the situation?  This questioning of my own grieving became yet another aspect of my grief--it led me to isolate myself from others.  From a "fix-it" perspective, not very productive.  But it was all just part of the process for me.

For those who have never experienced tragic loss, let along the loss of an infant, I'd like to share different aspects of my experience.  Many people--friends, family and even strangers--have asked me about it.  I'll start by saying, and this will come as no surprise if you've read Samuel's story (it starts here), my grief is VERY faith-based.  Without my faith, I have no idea how--no, if I would be able to find peace with the loss of my first child.

My grief has come in waves.  Waves of overwhelming, life-stopping sorrow.  Waves of disbelief and shock (did I really have a son, is he really gone?).  Waves of ferocious anger, at people for no reason (I could chew your head off for driving 2 over the speed limit rather than 5 or 7...) and with God for letting this happen.  Waves of guilt--as David puts it, bargaining--questioning my actions as if I could have done things differently and had a different outcome.  And then there are waves of peace, joy, acceptance.  I guess that would be when the waters are calm ;-)  Needless to say, life is an ocean... nah, I'll spare you the silly metaphors right now.

The Monday after the funeral (a Saturday), after all the visits from family and friends were over, once it was truly final that our baby wasn't there with us as highlighted by the empty co-sleeper, the days were incredibly lonely.  My arms were so sore, literally aching with emptiness.  The weight of the loss made deep breathing a challenge.  David seemed to be a world away, experiencing his own grief in a very different way.  I wanted to talk through it all.  I wanted to cuddle with David, finding comfort in the physical contact.  But David needed space.  He needed to be with his own thoughts, his own emotions.  How could I talk through my grief if David wasn't available?  This distance deepened my sense of loneliness.

But David was not the only other person who experienced the loss of Samuel.  My mom, my dad, my sisters, my grandparents, aunts, uncles, cousins, my friends.  We all were grieving in our own way.  I found so much comfort in talking to my mom every day.  In the past, we talked on the phone maybe once a week. Samuel had changed that.  We now talked every day.  We talked about little triggers in our days that would bring on a heavy wave of sorrow.  I found this to be incredibly helpful in understanding my experience.  One of my sisters--the one who met Samuel the morning before he died--was also a tremendous support.  She spent time with me, filling that sense of loneliness.  My girlfriends emailed words of encouragement.  And all of our loved ones continued to offer prayers.  While I felt alone, I was far from it.

Five weeks after Samuel was born--three weeks after he died--David went back to work.  This was a huge step in continuing on with our changed lives.  We were going to have to learn how to live in this new normal. What was this new normal?  We had to learn how to be a mom and dad without our baby.  We would have to learn how would we answer the question, "Do you have any kids?"  We both had to experience Mother's and Father's Day.  I had been planning my youngest sister's bridal shower during the pregnancy and was looking forward to wearing my little baby while hosting, playing pass the baby.  How was I going to get through that weekend?  Then there was my sister's wedding...and my cousin's wedding...and camping with our college friends... So many events that we had planned to share with our baby.  How were we going to get through those?

Both David and I have embraced this new reality.  It's taken time to learn how to walk into the fire, to allow ourselves to feel the sadness, feel our loss whenever it strikes us.  But by doing so, I have discovered who I am as a mom.  Sure, I'm a mom without my baby here on Earth, but I have learned how to be a mom with my baby in Heaven.  Whenever we can, David and I visit Samuel's grave site (an hour or so south, sharing with his maternal grandparents' pre-purchased grave sites).  We pray every day.  We don't need to pray for Samuel--generally, we pray for people who died so that they may find peace in Heaven since we cannot be sure how long they are in purgatory.  We know Samuel is in Heaven.  He was baptized and 100% pure of sin since he was years away from the age of choosing to do wrong.  Instead we talk to Samuel, asking him to pray for us.  This has been a tremendous source of hope for me, and it's been remarkable helping me get to know my son on a spiritual level.

Throughout our journey, David and I have been very intentional with every decision about our response to the loss of Samuel.  It has helped us find healing.  It's helped us cope.  The funeral was our last act of parenting.  We were very deliberate in our choices of funeral directors.  Deliberate in where and how Samuel would be buried.  Deliberate in the choice of readings, music and ministers for his funeral.  We were deliberate in all of our final gestures in regards to Samuel's body before the burial.  After his funeral, as I mentioned before, I had moments of confusion and loneliness.  But eventually I found more ways to cope, find peace and healing.

Most rewarding has been sharing our story of Samuel with everyone.  Sharing on my blog was incredibly therapeutic.  Before the blog, I finished Samuel's baby book to share with people at the funeral.  We made a photo album of our 12 days with Samuel.  David and I have a nice leather box that holds all the sympathy cards that we can read and re-read.  We have "Samuel's Box," which holds his hippo onesie and footie sleeper, his hat, his blanket, his canula, pacifier, and all the other little things that were Samuel.  We will be making a cardboard photo book of Samuel for his future brothers and sisters to read.  When we have the land (hopefully soon!) we will be planting Samuel's Garden. David and I, and our future children, can care for the garden.

David's parents took a stone from their yard and had it engraved with "Samuel's Garden." That way grandma and grandpa can always have a tie with Samuel.  All of these little things have helped me discover my new normal.  They have helped me grieve to the point of acceptance and peace.

Every day is a new day.  And every day has been different.  But I'm so full of joy knowing my son is in Heaven.  I have felt him comfort me.  And for how crazy it sounds, I've even heard him call me mom in my dreams.  I so deeply believe that Samuel brings a unique perspective to our family, a perspective that will hopefully teach our future children about the beauty of death, the power of community, and the grace and unconditional love of God.  If there is one thing that Samuel has given, it is the laser-like focus on living a life worthy of Heaven.  And for that I am grateful.  

                           

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**

Til' death do us part: answered prayers

**This is the third post to a long series.  If you would like to read from the beginning, you can find that post here.  If you haven't yet grabbed a cup of coffee from reading the previous posts, may I suggest taking a moment to do so now...or at least stretch your legs? Up to you.  In my very first post of this series I mentioned, "...the last time I posted seems a lifetime away." It would have been more accurate to say it was a lifetime away. **

David and I woke the next day, Monday, April 29, refreshed, still full of hope.  Our son was now a week old!  How could a week have passed so quickly?  Samuel had changed so much in those seven days.  His cheeks and chin filled out, he was sleeping easier, and his hair--oh, his beautiful, thick head of dark brown hair--was lightening to this beautiful amber.  Everything about him was amazing to me.

We made our way through our usual morning routine--grabbing some breakfast, spending a few minutes in prayer, scrubbing up--and then visited our little Samuel.  He was still sleeping quite peacefully.  It was so nice to see him comfortable.  Perhaps much of his comfort was due to the fact that we had started him on Baby Beano a couple days ago (David and I suspected that he was experiencing severe gas, to which anyone can attest being the cause of great discomfort.  Poor little guy just needed some relief!  The very sweet neonatologist offered some gas medicine, and voila! Problem solved).  Samuel's continued tranquility brought David and I great peace of mind.  We were also pleased that the IV weaning process continued to go well.  The ratio of breast milk to IV fluid continued to increase, putting Samuel closer and closer to being fed my milk exclusively.  This success was partly due to the fact that he had started a continuous feed.  Rather than being fed a large meal (about 60 mL) every 3 hours, he would now receive 21 mL every hour at a steady flow.  The hope was that Samuel's digestive system could better handle the smaller amounts (imagine eating several small meals a day rather than three ginormous meals) and that his glucose levels would finally even out.  So far, it seemed to be working!  I joked with his nurse that if Samuel were feeding at breast, he would definitely be a snacker, requesting food every 20 minutes.  It was much less exhausting to satisfy his constant need for food via a tube!  ;-)

Even though Samuel was making progress, we still didn't have answers to what was causing his condition.  The doctors and specialists continued to work hard, researching, hypothesizing, testing.  We were still a long way from being able to take Samuel home.  David and I decided it would be helpful to make a trip to our house to grab a few of our things, perhaps a few more clothes, take care of a few business-like items.  We didn't want to leave Samuel alone, so David offered to make the trip himself.  We confirmed with the nurse that there weren't any meetings with specialists scheduled, then David kissed Samuel and me goodbye.  Hurry back, David!  We don't like being with out you!  

I was pretty nervous to be alone with Samuel.  Of course the nurses were there, but I relied so much on David.  Our combined parenting felt much more secure than doing it alone.  If I was being pushed over the edge by the intensity of the NICU and temporarily couldn't be there for Samuel, David would step in, and vise-versa.  But, it would be no different if we were at home.  When David would go back to work, I would be alone with Samuel.  I would have to muster up all the courage, patience, and selflessness I could manage.  Today, I would do the same.

After David left, our nurse let me know that Samuel would be receiving another little test that morning: an electroencephalography (EEG), or a brain activity scan.  I've always been fascinated by how the brain works.  In the past, I studied the effects of music on the brain and how the brain's sensory processes function.  Today, while providing a loving, comforting presence to my baby, I could get a tiny lesson in lower-brain functions--how cool!  The neonatal EEG technician was spectacular (yes, there is a neurology sector that specializes in newborns and premies, who knew?).  She gently placed each electrode on Samuel's head, careful to not hurt his sensitive skin.  The process to connect all 24 took just about an hour, during which Samuel generally didn't fuss.  In fact, he was quite content to have this nice lady continue to rub his little head.  I should note that the previous day we had discovered that one of the most effective methods of soothing Samuel was to hold him snug against our bodies in one arm like a football and massage his head in a circular motion with the other hand.  You could just see his satisfaction as his eye brows raised every so slightly and his mouth dropped open....ohhh yeaaahhhh.... :)

Once all 24 electrodes were connected, the technician wrapped his head snugly to keep them in place.  As she was doing this, Samuel laid still.  I was smiling as his peaceful state when suddenly his alarm went off.  I glanced at the monitor and saw his oxygen sat levels had plummeted sharply, suddenly.  In the past, I had seen him recover on his own.  But I had only ever witnessed these drops when he was fussing, as if the sudden drop in oxygen levels was a result of him not taking in enough air while crying.  Here, the drop was random.  And he wasn't recovering.  The saturation level dropped lower, and lower, and lower.  I started to panic.  What is going on? Oh no, what's happening to my baby?  He's turning so gray! Why isn't anyone coming over to check on him? Aren't there any nurses around?  Please, come help!  I turned around, wondering where the heck a nurse was to help me with Samuel.  There was one nurse in the area, preoccupied with another baby.  Fortunately, I had developed a good rapport with her throughout our week in the NICU.  I looked at her, desperate for help, "Samuel doesn't look very good, do you have a sec to come help?"  She rushed over and concluded that yes, indeed Samuel was hungry for oxygen and his little body couldn't seem to recover on its own.  The nurse grabbed the blow-by oxygen and held it over his face.  Come on, Samuel, perk up. Come on, baby. Don't die, baby. What the heck?!?!  My heart was racing.  My eyes darted between Samuel and the oxygen sat numbers on the monitor.  Come up. Come up. Come up. Come on, just come up already!  It took all the courage in the world to hold myself together, to not freak out, to put my trust in the nurse and God.  God had given us the opportunity for superb medical care, and this nurse was a shining example of that medical care.  Focus on that.  Samuel's numbers began to climb.  Slowly, but they were climbing.

Finally, after what seemed like an eternity, though it was probably only one minute, Samuel's sats were back in a "normal" range.  What. The heck. Was that?!?!?!  Why did my baby's oxygen levels suddenly drop like that, unprovoked?  He was breathing, wasn't he?  He wasn't fussing.  He seemed perfectly normal--well, he was Samuel's normal.  Shaking, I thanked the nurse for her assistance.  She offered her reassurance.  It's okay now.  The technician returned to wrapping Samuel's head.  We chatted about what had just happened.  Gently, she disclosed one of the reasons for the test, "We'd like to see what the brain is doing during these sudden drops, or spells.  I bet you don't want this to happen, but I am hoping he has another spell in the next hour."  Another deep breath, I comforted myself, remembering our constant prayer: 

Lord, thank you so much for the gift of Samuel, for Your love, for our capacity to love.  We ask that you bless the doctors and nurses as they continue to work as hard as they can to find answers.  And Lord, please help us find the answer.

I stayed to watch the first few minutes of the test.  My stress level had seriously increased within the last 15 minutes, I hadn't pumped in nearly four hours (I was pumping every 2-3 hours), and Samuel seemed to be okay again.  I decided to take the next hour to pump and get some lunch.  I really couldn't wait for David to return.    

When I returned to Samuel's bedside, the tech had completed the EEG without experiencing another oxygen spell.  Samuel's assigned nurse had finished her lunch and was finishing up changing Samuel's diaper.  This was the same nurse who had been working with Samuel since Saturday.  She was there when we got his eyesight diagnosis, the mom who saw his eye color.  She was there to help us get the gas medicine.  She encouraged us to try the football hold/head massage combo.  And she was the nurse who suggested to the doctor that we put Samuel on a continuous feed.  I trusted her with everything.  I explained what I had witnessed, how it had scared me.  She was so comforting, reassuring.  She never once said, "Samuel could outgrow this," but she did say that the doctors were continuing to work hard an find out why Samuel was experiencing these spells and therefore be able to find a way to help Samuel. She then took the next few minutes to train me in using the blow-by machine.  If Samuel had another spell while I was around, now I had the ability to help him.  

I spent the next hour rocking Samuel while I waited for David.  It was bliss, rocking my son, humming to him.  His face was so relaxed.  His head had a few remaining marks from the EEG hidden among his thick hair.  My love for him continued to grow deeper and more unconditional with every minute I spent with him.  I just knew that whatever it was causing Samuel's condition, whatever his high-needs would ultimately be, we would figure out a way to thrive.   

        

While we were rocking, Samuel's nurse came by to see when David would be back so we could meet with the geneticist.  I said 4:00 PM should work great, David would be back soon.  With just under an hour until our meeting, I laid Samuel in his crib and kissed his forehead before leaving to quickly pump.  Sitting quietly in the pumping room, I pondered what we would learn in this meeting.  I felt excited and afraid at the same time.  Could we possibly have results from the DNA tests this quickly?  If so, what would we learn?  Will David and I truly be able to handle caring for a high-needs child?  As I finished, David texted that he had returned.  He brought our nursing pillow, one of Samuel's blankets and a little crucifix from home to use at Samuel's beside in the NICU.  I gave my milk to Samuel's nurse, then followed her and David into the meeting room.  The geneticist and neonatologist on call were both waiting for us.  Looking forward to answers, hand in hand we sat down. 

Samuel's nurse closed the door.  After quick hello's, the neonatologist informed us that we had some test results come back.  The geneticist began: 

"Samuel has Trisomy 13."

Shock.  Instant tears.  Suppressed gasps.    

"There is no easy way to say it.  The DNA tests showed he has three copies of the 13th chromosome.  It is full trisomy.  As you may already know, Trisomy 13 is incompatible with life."

We did already know.  Trisomy 13 is very similar to Trisomy 18. 

"I honestly didn't think this would be Samuel's diagnosis, as I told you last week.  He shows very few signs of the syndrome. But it is.  It is Trisomy 13."

Silent breaths, silent tears, taking it all in.   

"Do you have any questions for me?"  

I looked at David, a tear rolling off the tip of his nose.  He looked back at me.  Our baby boy, our son, our perfect Samuel was not going to survive.  We thought learning our son would never see was hard. I gave David space to ask a question.  He closed his eyes as if to say no, then I thought of something: "Why didn't he miscarry?" 

The geneticist welcomed the question, responding, "Generally, that is the case.  But some babies, though rare, do make it to term.  Those that are born with Trisomy 13 or 18 don't live past the first few days of life.  Of those that do, less than 5% make it a full month.  Of those babies who live a month, only 1% will make a year.  Past that, it's truly unknown."

More silence.  More processing.

"Why doesn't Samuel exhibit many of the typical symptoms?"

"We can't be sure why Samuel's trisomy is so subtle.  But as with any baby, each case is unique.  Here is some detailed information about Trisomy 13.  Feel free to read through it, or not."  The geneticist handed us a thick packet, then continued, "We can't say how long Samuel has to live.  But we are putting together a palliative care team to help you make decisions regarding his remaining days."  

I asked, "What kinds of things will we need to decide?" This was all so foreign to me.  Neither David nor I had ever been the party responsible for making decisions at the end of someone's life.  We had no idea what to expect, what decisions needed to be made, let alone what would be ethical.  

The doctor explained we would need to decide how much medical intervention we would want for Samuel, ranging from doing everything imaginable to extend Samuel's life to doing absolutely nothing at all, which would include removing the feeding tube, oxygen support, everything.  He expanded on that by saying most families choose to simply make the last days of their loved one's life as comfortable as possible.  We would work with the palliative care team to help us decide what that might look like.  As long as we needed it, the medical staff would provide as much support as we wanted, as we needed.  

We thanked the doctors.  Before we parted ways, we asked if it was okay to have a priest come and baptize Samuel as soon as possible.  We had to get him baptized so that he could return to Our Father in Heaven.  There was nothing more important right now.    

"Of course.  Anything you want."

We shook hands and the doctors left.    

Samuel's nurse hugged us.  Tears in her own eyes, she said, "You asked such great questions, and you know the first thing I thought of when you asked why Samuel didn't miscarry?  I know in my heart it is because God wanted Samuel to meet you, for you to meet Samuel." She then left the room for David and me to be alone.  We broke down.  Sobbing.  Holding each other.  Shaking.  Completely and utterly heartbroken with the diagnosis.  But it was an answer.  We got an answer before it was too late.  God heard us, he answered our prayers.  We now had the answer to the cause of Samuel's condition.  

Over the next hour, we focused on communicating the diagnosis to our immediate families.  I texted my dad to see when he was going to be home from work.  I wanted him and my mom to be together when we broke the news.  He replied with too late a time for my liking, so I requested he go home now.  We called the hospital priest to request a baptism as soon as possible.  We called David's parents.  Short, sweet.  Not much to say.  We called both of my sisters.  Both were several states away with full-time jobs and too far to be able to fly home any time soon.  We called Samuel's god-father, our future brother-in-law.  We called David's brother and sister-in-law.  We called David's sister.  And finally we called my parents.  We worked through the tears, then let them know we were going to have Samuel baptized tonight.  My parents lived only 30 minutes from the hospital, and our hope was they would come up for the baptism.  It was our plan, three months prior to his birth, to have Samuel baptized on Father's Day.  To have all his family and friends around him.  Obviously, that plan had to change.  If my parents could at least be there with us...at least there would be a representation of the entire community that loved Samuel so much. 

We had a plan in place.  For this evening at least.  We attempted to choke down some food, and as per the usual ritual, pausing before hand to pray, to thank God for finding an answer, asking that we continue to be blessed with the grace, strength, courage, and understanding we would need to live out the path God had laid before us.  After dinner, I needed to pump--my ability to produce milk was still vital to Samuel.  No one knew how long he would continue to need food.  Meanwhile, my parents arrived at the NICU and were waiting in the family room.  When I was finished, David and I went to Samuel's bedside.  His peaceful face showed no signs that he would die.  Death seemed truly unrealistic when you looked at him.  But it was a reality.  We were not going to let this new reality wasn't change the way we lived our life with our son.  Just as we had for the past week, David and I would continue to savor each and every second with Samuel.  He was our gift from God, for however long.  How could we not treasure each and every moment? 

David and I laid our hands on Samuel.  We shed tears over him.  We kissed him.  We blessed him with the Sign of the Cross.  It was 8:00 PM, about the time that the priest said he would stop by for the baptism.  I went out to the family room to see that the priest had in fact arrived, whom along with my parents I welcomed back to Samuel's beside.

Typically the NICU doesn't allow more than three people at a time, including parents, to visit the babies, but our rules had suddenly changed because of the circumstances.  Our night-time nurse had positioned a privacy screen around Samuel's sleeping area.  The priest requested some sterile water for the Sacrament of Baptism and permission to use the Holy Chrism, a wonderfully scented oil used in the Sacrament of Confirmation.  Father instructed me to hold Samuel with his head in the center of our circle while David held a soft towel under his head.  After an opening prayer and scripture reading, Father baptized Samuel in the name of the Father, and of the Son, and of the Holy Spirit.  My heart was so heavy, so conflicted.  I was disappointed that Samuel had to be baptized like this, in the NICU.  I was scared about facing Samuel's demise and ultimate death.  But I was also filled with joy that our son was now free from original sin, completely pure in spirit, and would return directly to God's loving embrace as a saint.  The priest continued the ceremony with the Sacrament of Confirmation, confirming that he received the Sacrament of Baptism.  He anointed Samuel's forehead with the Holy Chrism, "Samuel, be sealed with the gift of the Holy Spirit."  

We concluded the ceremony, wiping away our tears.  My parents hugged us, my mom cupped her hand around Samuel's sweet little head.  My heart swelled with gratitude that my parents could be there.  They took pictures of the three of us.  We then asked the nurse to take pictures of all of us.  Afterward, my mom asked if she could hold Samuel.  Typically, this would not be allowed.  But again, these were not typical circumstances.  I place Samuel in his grandma's arms.  I have never felt so much joy, so much pride.  To see my mom as a grandma, to give her a grandson.  The depth of her tears I will never fully know.  My dad stood next to her, gazing at little Samuel.  I didn't mourn for myself, that I would be losing my firstborn child.  I did feel sorrow, guilt perhaps?, that my parents would be losing their first grandchild.

  

That night, I learned something about my dad, that his Hebrew name is Shemu'el, or Samuel.  In choosing the name "Samuel David" we were very intentional about the connection to family and strong Biblical roots, but from what we knew the name came from David's side.  Samuel David is of course my husband's namesake, but that would also make Samuel his great-grandfather's namesake, for David was named after his maternal grandfather.  But David's grandfather was nicknamed "Sam," an outcome of his life-time service in the air force.  Stories about Sam depict a man who was strong, independent, with a passion for life--an inspiration to David, and through the stories an inspiration to me.  We were inspired to consider the name Samuel.  It was a name that both David and I loved, why not combine it with David?  Both names would have a family tie, and both are reminders of two strong people from the Bible.  Samuel's name continued to prove to be perfectly fitting as we discovered his fighting, independent personality, but now even more fitting because his name ties to all of his family roots--his father's and his mother's.    

My mom placed Samuel back in his crib.  It was time to say goodbye.  She leaned down to kiss his head, fighting back tears.  My dad lovingly pressed his hand on Samuel's tummy, then turned with my mom to walk out.  David and I followed them.  We thanked them, hugged again, and said goodnight. 

David and I returned to Samuel and just as we had the nights before, we stayed late.  Rocking, holding, talking, even laughing.  The privacy screen made Samuel's space feel like a real room.  We soaked up every minute, both of us present, in the moment, so that we would never forget.  It didn't matter how many days we would have left with Samuel.  Every day that we would be given we would be sure to live to the fullest, to LOVE to the fullest.  

**To be continued: Til' Death Do Us Part**