Tommy.

This post has already been written in my mind for months. It has been reworked and reworded many times and even though I had to emotionally prepare myself for the possibility of posting it much earlier than I ever wanted, the framework has essentially stayed the same. And it has always started with the joyful announcement of the arrival of our third son, Thomas Ray Koelliker.

Unlike his brothers before him, Thomas has the distinction of having a completely expected birth. The ventilators, isolettes, and feeding tubes that were so integral to the other births in our family were tellingly and blessedly absent.  This third boy in a family of boys will someday tell his own special tale about the day that he was born.  A day that did not include a frenzied drive to the hospital, an emergency procedure, or having to separate from his parents and go to the NICU because even though the countdown to get to his arrival was a storied one, the actual day of his debut was mercifully peaceful.     

On the morning of Thursday, March 5th, 2015, Rob and I walked hand in hand through the doors of University Hospital.  We could not help but giggle as we made our way to the maternity ward.  We had already spent countless hours in those familiar halls and units.  Henry had been born and died in the NICU where Eddie spent the first nine weeks of his life and I was officially closing the door on a pregnancy that required a lot of medical attention.  And as we went up the elevator and checked in to have our baby we could not get over the fact that we were checking in and not being rushed in.  That for the first time my hospital bag was pre-packed and organized and most of all, we could not believe that we had made it to March.  That after all of the emergency visits and scares and the hours spent worrying and planning Plan B's and even Plan C's, that we had made it to 36 weeks and 6 days gestation.

Due to construction, the maternity ward sent us across the hall to the place that Rob and I knew all too well, and as we checked in at the desk of OB Emergency Services I was relieved to do so for the very last time in that pregnancy.  We were visited by nurses, doctors, and anesthesiologists and we were assured multiple times that the NICU was on call in case our little one needed expert attention.  (In fact, several of our favorite NICU nurses stood at the ready that day and all weekend just in case we needed them.  It was a gesture that gave us incredible reassurance and peace in an uncertain time.) Because even though I had made it as far as I could physically go with my pregnancy there was still no guarantee that Tommy would be born healthy.  My doctor was ecstatic that I had basically made it to 37 weeks but she cautioned us that even at almost full term, Tommy would very likely need to spend time in the NICU.  And so, with much reason to fear, but every reason to hope, I walked to the OR to have our baby.

And in what felt like a matter of minutes, my doctor lowered the sheet and told us to get the camera ready because Tommy was coming.  Rob and I clutched hands and drew a collective breath.  I steadied myself in Rob's gaze as the moment that we had been worrying about and praying for was finally about to arrive.  

I closed my eyes and willed my ears to hear the cry of a healthy baby boy...

...but Tommy's cries could not necessarily be described as sounding like mere cries.  He bleated.  He wailed and he screamed. 

Rob and I hugged, cried, kissed, and prayed.  And then we did it all again.  And as they closed me up and the pediatricians examined our tiny treasure, I laughed out loud.  I laughed and released the trauma that began in a delivery room just down the hall from my operating room almost exactly five years before Tommy's birth.  I laughed and gratefully accepted the cheers of joy and congratulations from the medical team in our room.  But mostly, I think I laughed at the unfamiliar sound of a baby being born because although Tommy may be our third child, his cries were the first we had ever heard from our children in the delivery room. 

  

Rob followed Tommy and the pediatricians to the nursery for a thorough examination to ensure that he was healthy.    

And as they were stitching me up Rob came back into the room with an enormous grin and announced that Tommy did not need to go to the NICU and that he wanted to be with his parents in the recovery room.  

So, for the first time, we were able to hold one of our children on the day that he was born.

And he got to stay with us during the entire weekend while I recovered.

The poor boy battled extreme jaundice due to my negative antibodies fighting his positive ones and at one point we thought he might have to stay in the hospital under the lights or even get a transfusion.  Thankfully he was ultimately deemed healthy enough to leave and his peaceful delivery was book-ended with a peaceful journey home.

Sweet Tommy will be turning 3 months old this Thursday and not a day has gone by since his miraculous arrival that I have not thanked Heavenly Father for His mercy in allowing Tom to be in our family.  He is sweet, genial, and incredibly patient.  And I am certain there are not enough positive adjectives to describe just how much we love and appreciate having him with us.

Welcome to the party, Tom, we absolutely adore you.

Time.

In the middle of last July I felt pregnant.  I did not have physical evidence quite yet but there was just something within me that knew that someone else was in the picture.  After seeing a few negative results from over the counter tests I scheduled a blood test with my doctor's office.  When the blood test came back negative I was stunned.  I still felt pregnant and as the weeks went by I could not shake the feeling. I began to worry that I was developing a psychological condition.  I wondered if my desire to become pregnant was causing my body to create hormones or sensations that led me to believe I was pregnant even though the tests said otherwise.

By the beginning of August I became seriously concerned that I was imagining things.  Symptoms were starting to materialize and in fact, they were too big to ignore.  I told Rob that I was going to take one last test and then I needed to see my doctor to seek help.  But as I suspected all along, the "final" test I took was not really the last because it came back positive.  And that test was really just the first in a series of blood tests, scans, and procedures that became routine to monitor our baby and keep him safe.  In the first few months alone, this baby easily beat out his older brothers by the sheer volume of appointments, ultrasounds, shots, and prescriptions that were necessary for what became a very high risk pregnancy.  

From the first meeting with my doctor it was made clear to us that although things were starting well, that due to my complicated history, there were great risks associated with having another baby.  Even though Henry was born at 37 weeks and was technically full term he was still early and I was given an increased risk of early deliveries after he was born.  Eddie only fulfilled that risk and then some when he was born much more premature than we ever could have expected.  His abrupt birth was the wild card in my pregnancy deck.  Much like other premature births, the exact cause of Eddie's sudden arrival was and is still unknown and so there was no telling how long this next pregnancy would last.

And so, it seems that from the very beginning we truly did not know what was coming with this new babe.  My track record was not much help since it is punctuated with two surprise births, a tragic loss, long hospital stays, and quite a bit of trauma.  Initially, the risks did not seem to matter as much.  Although we worried, prayed, and loved our new little one since the moment we knew he was coming, we did not have cause to truly worry until the second trimester.  By the beginning of the third trimester we were operating in full panic mode and did everything we could to keep our baby in where he belonged.

I became well acquainted with OB Emergency Services at the University of Utah Hospital.  One of our greatest concerns was that I would repeat the process of Eddie's premature labor and I would be too dilated to keep the baby safe.  My doctor was understandably worried about that too so I was instructed to go straight to the ER any time I could not get contractions to stop at home. Between the beginning of November 2014 and the week before Tommy was born, I was in the ER seven times.  

(It got a little old...)

I originally wrote the majority of this post in the middle of January but I was never able to complete it.  At the time, I was on modified bed rest and had been to the emergency room for contractions four times within a matter of weeks. I had just started my third trimester and although it was absolutely incredible to be past 28 weeks (the week that Eddie was born), I did not feel like I could be honest enough about my feelings to blog about them. I wish I would have mustered the energy and courage that was necessary to detail what it felt like to be in the throes of what was to our little family, something very stressful/wonderful/scary, but I could never quite put my feelings into words.  Looking back, I think it is mostly because I did not want to remember every part of that time in my life.  It was my hardest pregnancy yet and it challenged me in almost every aspect of my life.  And to be honest, some things are too humbling to own up to in writing.

But for posterity's sake, I think I owe it to my family to at least make an attempt to describe that important chapter in our family's history.  And aside from the fact that I am taking this quote completely out of context and I have never been able to get through more than three chapters of A Tale of Two Cities (Dickens puts me to sleep faster than Benadryl), when I think of my pregnancy with Tommy I think it truly was the best times, it was the worst of times.  It was a time of the fulfillment of dreams, it was a time of great anxiety, it was a time of unending love and service from family and friends, and it was a time of physical pain, sleeplessness, and sacrifice.

It was a time when these two cemented something that was already special and made it into a bond that is unbreakable and completely limitless.

It was an eerily quiet time, a time of forced rest, great sickness (poor Ed), and snuggles that turned into peaceful afternoon naps.

It was a time to sit at every possible opportunity.

And it was a time for my profile to expand to limits that I never thought I would see again. But most of all, it was a time for us to appreciate time and to be grateful that we had it. 

(This was taken the night before Tommy was born and it was our final picture 

as a family of four. I'm certain that Henry is right next to his dad.)

Sharing.

Eddie is in the thick of toddlerhood.  He is quickly learning how to assert his growing independence.  He runs, he jumps, he screeches, and he wails.  He is constantly singing, humming, or reciting the alphabet and he throws spectacular tantrums.  It comes as no surprise to me that I find myself reminding him to share at least three or four times a day - sometimes more depending on where we are.  I try different approaches with him and try to make the idea of sharing enticing and exciting.  I try to sweeten the deal for him or distract him with something else so letting go of what he wants at that moment does not hurt as much when he has to give it away.  But you know, try as I might to make it a little easier for him, sharing does hurt sometimes.  

Whether you are a kid or an adult I think it can be hard to let go of something you just found or something you have wanted for a while because you never quite know when it will come back to you.  By sharing you not only have to let go of something you want or care about but you also reveal something about yourself in return.  You share information and you share something about your interests, your hobbies, your feelings, etc., and sometimes you cannot be sure how it will be received.  Will someone take what you share and give it back to you?  Will they give you back something sweeter?  Or will you be left feeling even more vulnerable afterward?  Sharing is a risk.  But I think all parents hope that their children will learn somewhere along the way that it is totally worth it even when you do not necessarily get back what you give.

Certain aspects of my grief have been surprisingly easy for me to share.  Over the years since Henry's passing I have learned to talk about him in a way that feels safe for me.  I have learned some hard lessons through trial and error.  There have been moments when I felt like I shared too much and did not get enough back.  But generally I now know what I usually say to a stranger or what I like to share with a friend and I am able to filter the more delicate and private emotions out of certain conversations and keep them to myself when I need to.

Several weeks ago I had the opportunity to share my family's story in a very public and very formal setting.  I have the great privilege to be a member of a committee that is raising money to expand the NICU at the University of Utah Hospital in Salt Lake City.  Both of my boys were patients in the hospital's NICU and it understandably has a tender and sacred place in my heart.  My committee chair invited me to speak at a social for members of the University Hospital's board and its volunteers and when I was first given the chance to speak I immediately accepted, feeling like it was a great honor.  It was only as time went by that I became increasingly more nervous because I realized that I would be sharing information that would make me extremely vulnerable. 

My time to speak came and went and thankfully that specific incidence of sharing was successful.  I gave insight into some of the most personal, painful, and joyful moments of my life and it was received in a way that made me want to share again.  If the story of our children invites and encourages other people to remember NICU babies then I would share it again in a heartbeat.  

Much of what I said at the event can be found in the contents of this blog.  I started with him, talked about him, and also how extremely grateful I am for him.  I talked about the terrors of having a baby in the hospital and the nightmare of grief and I also talked about the realities of bringing a preemie home from the hospital (it is just as hard, if not harder in some ways, than having them hospitalized).  But ultimately I told everyone in the room that night that I have seen and interacted with superheroes.  I told them that superheroes wear white coats and scrub tops and they spend years of their lives in school.  They sacrifice their time from their own families to be with people they have never even met and they save lives.  

Superheroes also undergo emergency procedures and surgeries to save tiny babies or those in fetal distress.  They hold tiny hands and sit by bedsides listening to loud monitors.  They travel incredible distances each day just to sit in sterile hospital rooms and sometimes they even live in trailers in a hospital parking lot just so they can be near their precious babies.  

But the real superheroes in my book are those who are newly born.  Sometimes they weigh as much as a can of soda and other times they are perfectly round and chubby.  They sleep in isolettes, they eat through tubes, and most of them fight for their lives from the very instant that they are born.  They struggle more at 2 1/2 pounds and two seconds of life than most adults will in an entire lifetime.  And they cannot stop.  I am the proud mother of two superheroes.  One had to retire his cape early, even though he tried his hardest not to, and the other just turned two last month.

I showed this video at the end of my little speech and I want to share it with you.  I am so proud of my superheroes but there are so many others who need our help.  Please let me know if you or someone you know is interested in joining their fan club and helping us help them.

PS - In a way, this blog has been proving ground for my thoughts on grief, death, hospitalized babies, and broken hearts.  Thank you for always making this a safe place for me to share. 

Hindsight.

Dear Me,

This is yourself from two years in the future.  For you, it is May 20, 2012.  Right now you are pregnant with your second son.  You are now in your third trimester and your belly is getting bigger by the day.  You are healthy, you are content, and you are understandably, very happy.  You and Rob have come a long way.  Explanations of all of the difficult days over the preceding two years are not necessary other than to put into perspective how truly happy you two are at this moment.  You have found that the grief that you two endured before only enhances your joy now.

As you read this, you are likely fantasizing about the future.  You spend most of your free time immersing yourself in articles about babies and how to handle colic.  You like to wonder about your son's hair color, the shape of his smile, and the smell of his baby-fresh skin.  You and Rob already decided that you are going to name your baby Edward Henry; a name that you absolutely adore.  And as of today, you are planning on calling him Teddy as a nickname. 

But as happy as you are, you can also admit to yourself and to others that this pregnancy has been a tenuous one.  You have taken a total of eight pregnancy tests to not only confirm that you were pregnant in the first place but to also make sure that you were still pregnant after your worries got the better of you.  You know yourself well enough to have expected that you would be scared to be pregnant again after suffering loss but you never could have prepared yourself for the day to day questions and scares that frequently pop into your head.  Rest assured that you are doing everything that you can to take care of your baby and you are doing a great job.

However, despite your best intentions and efforts, your baby is coming sooner than you thought he would.  Much sooner, in fact.

In three days time you will start to feel a little pain on the lower right side of your abdomen.  It will not be a searing pain but it will be constant enough to make you uncomfortable.  You will go to bed that night and you will have a vivid dream that you are in labor.  And as you go through the motions of the next day the pain will increasingly get worse.  You will try your hardest not to worry too much because on that day, more than any other day that came before, you will be resolved to not think about the worst case scenario.  

Erin, since you will be trying so valiantly not to worry that day you will not recognize that you are in premature labor.  

I know that it sounds crazy but because you will be trying so hard not to overreact you will not understand that your pains are actually genuine contractions.  Since you are only 28 weeks and 1 day pregnant on May 24, 2012, the possibility of having your son today will not even enter your mind.  You basically thought you had a free pass on trauma with babies, pregnancies, and deliveries since you already experienced a lot of it beforehand but what you thought should happen and what will actually happen will be very different.

You will be scared on this day.  You will be worried and you will be disbelieving.  You will feel overwhelmed at the prospect of having another son in the NICU again.  And you will cry.

But you will get to meet him:

And see this:

And when you see your son's face for the first time you will realize then and there that the little boy that you were expecting to call Teddy is actually not Teddy at all.  He is and has always meant to be Eddie.  He is scrappy, he is determined, and he plunges head-first into any and everything and he never ever gives up. 

And in a day or two you will be able to do this:     

The days and weeks after these ones will be long and I will not lie to you - there are some hard times ahead.  Eddie will live in the NICU for nine weeks and there will be moments when you will be seized with absolute terror.  You will want to run away, you will want to hide, and you will wish that he could have been born on his due date.  You will feel incredibly lonely as you sit by him in the hospital and you will get frustrated by the turn your life is taking.  But you will not be able to change any of it.  The only thing that you can truly control is your faith.  This piece of advice is no surprise to you but it bears repeating and I hope you keep it in mind as you enter the days that lie ahead of you.  Have faith.  Have faith in your own capacity to withstand the unimaginable, in your relationships with people that truly love you, and have faith in Eddie.  Have faith that not everything that starts out scary has to end scary.  And most of all, continue to have faith in Him.

Erin, be of good courage.  Let the NICU redeem itself for you.  Let other people help you.  Take heart in the examples of the good people around you.  Lean on Rob, your parents, your siblings, your friends, and on your church.  And allow your wounds to heal even if they do so in unexpected ways.

From the onset these days will seem like they will be endless and you will not immediately see a way out of them but I promise that they will end and you will be forever changed because of them.  Eddie will only be 2 lbs and 8 oz when he is born but take comfort in knowing that he is big enough to heal most of the fissures in your broken heart and just small enough to save some room in there for his older brother too.

Enjoy these last few days of your pregnancy and look forward with hope.  I know you think that you are happy now but you have no idea what lies ahead and how much happier you will become because of it.

Always,
Yourself

Wishing.

Dear Henry,

As you know, tomorrow is your birthday.  You would be turning four.  And I wish that I could give you a hug.

For the past three years we have celebrated your special day without being able to hold you.  Up until your little brother came along our arms were as empty as our hearts and it was absolute agony.  We mourned you and we also mourned the sorrows of not feeling like the parents we knew that we had become since you were born.  At times, the loneliness threatened to destroy me or at the very least, drive me mad.  But in a bizarre way, on nights like tonight after I have hugged Eddie and tucked him in, it almost made it easier before because we did not know exactly what we were missing.  Eddie is here now and he has taken up so much of our lives that he has spoiled me.  I cuddle him, I kiss him, I wrestle with him, and I am able to scoop him up on a whim.  And as I held your brother today I could not help but wonder what you feel like, because I know now what I am missing - and I am missing so much.

I am missing the beating of your heart against mine.  I am missing the sensation of your fingers on my neck.  I am missing your hand in my hand, and I am missing your arms wrapped around my waist.  I am missing your face and the shape of your smile.  I am missing the color of your eyes and the sound of your feet as they patter around our house.  I am missing the sound of your voice and the pitch of your laughter.  I am missing folding your clothes and arranging them into piles.  I am missing the sight of you with your brother.  I am missing the sight of you with your grandparents, aunts, uncles, and cousins.  But above all else, I am missing watching you with your father.

I am not sure how things work where you are.  

And I do not know what you look like or how tall you are and sometimes it drives me crazy.  I wish I could see you.  I wish I could hold you and tell you in person how much I love you.  Because Henry, as simple as it may sound, I wish I could be with you everyday and even though it has been four years, I continue to make that wish every single day.  

I do not know what you are doing exactly where you are now, but I have a feeling that whatever it is, that it is something good.  Some of our family members have told us stories about you and how they have felt you close by when they have been around the world and it has brought us great peace.  And as much as I wish I could have you here all of the time, I know that you are involved in magnificent things.  Even though I wish that I even had the option to be selfish and keep you with us, I know that you are doing good.  And it makes us, as your mom and dad, so very proud.

So son, even though I wish that I could hold you tomorrow and every day, I am starting to become okay with where you are now.  You never belonged wholly to your dad and me anyway.  You were just ours for a moment; and I want you to know that as brief as that moment may have been, that it was enough.

Wishing you the happiest birthday, my sweet, sweet boy.

All my love,

Mom

Saved.

It was overcast that morning but still hot.  The air was sticky and heavy and we had not slept well.  Truth be told, we had not slept well for six weeks.  As I brushed my teeth that morning I remember looking in the mirror and thinking about the day ahead.  I would pump, wash my parts, and then repeat this process four or five more times.  I would leave the unit to eat lunch and dinner but then I would return.  I would talk with nurses, a doctor or two, and other moms, but I would mostly sit in tense silence.  Rob and I would talk by the bedside and Rob would ask questions about procedures and equipment.  And over the course of the day, there would be A's and B's; although some of them would be scary, most of them would be minor.

As I thought about what would happen that day and what every day had been like for the past month, it felt like it had finally happened.  As if the string that was flirting with the flame had finally burned through its last thread.  And it snapped.  

The snap had everything to do with being in the same place for weeks on end and doing the same things each and every day but doing most of them against my will.  And wishing we ,and especially, our baby, were somewhere else.  It was emotional exhaustion, it was likely due to postpartum hormones, and it was the inevitable result of experiencing such extreme emotions over the course of one day for many days in a row.  At that moment it felt as if a vital neuron that connected one piece of my brain with another had been completely severed. 

We traveled our familiar route to the hospital that morning and as we turned a corner I told Rob that this was the day that I was going to have my nervous breakdown.  I was only half surprised by my conviction.  Rob may have thought I was joking but I said it with certainty.  The collapse of my sanity loomed ahead of me like an event.  The clock was ticking and there were merely hours to go.

I had been on the brink of collapse from the moment that I saw our 2 1/2 pound baby in his incubator on the day that he was born.  For the first four days of Eddie's life I lived in terror.  We did not know if he, like Henry, would leave us.  After one week he seemed to be stable but he was so tiny and had such incredible obstacles ahead of him; obstacles unlike any that I had ever imagined. At 28 weeks gestation, he had to develop and grow and do all of the things that should have been taking place within me and with my help.  As I sat by his bedside day after day I would wrestle with questions that I never dared ask aloud: how was Eddie going to make it through and do everything that needed to be done?  How was he going to go home?  And most of all, how was he going to safely come out of a place that up until that time had only meant death and devastation to us?  

From the moment I discovered I was pregnant with him, I loved Eddie carefully.  With the kind of love that wants to be uninhibited and naive but knows too much to be easy.  He had my heart completely, but he also had the scars that came with it.  The sleepless nights, the tears, the resentment, the faith, and all of the other emotions of a wounded mother.  

That day, without even being around them, I knew that the alarms on his monitors had sealed my fate.  For the past week or so Eddie had been going through a particularly rough period where his doctors were weaning him off of caffeine.  Up until then, he was given caffeine to help keep his heart rate up so he could breathe more easily.  Once they started cutting back, Eddie's body had to remember to breathe on its own and sometimes he would forget.  These little spells of forgetting (A's and B's) could last for just a second or they could be longer and if that were the case, he would become gray and limp and have to be tickled or touched in order to start breathing again.  Even though we knew his spells were normal and even comparatively mild, it was still difficult to watch.  And although we knew he would come out of them, we still silently prayed during each one.  Hoping that he would become stronger.  That there would come a time and a day when he could breathe freely.

Out of all of the sensory memories I have with Henry's time in the NICU, the monitors were the ones that I associated the most with his stay.  After his passing I hoped that our subsequent experiences with our children would make the monitors' jarring sounds a distant and dreadful memory but instead, it was the opposite.  Although in some ways it felt like an eternity, Henry was only in the NICU for four days.  Eddie was there for 61.

That morning as we walked to Eddie's room I immediately felt my body tense.  The doctors, pharmacists, and nurses had already gathered around him and were going to do their rounds and talk about how he was doing, what he needed, and if anything needed to change in his treatment.  I left Rob with the group so I could pump in the other room.  I do not remember my exact thoughts as I pumped that morning but my ears strained, searching for the sounds of alarms - Eddie's alarms.  I would hear a ding and a beep and then more frantic beeps and I would wonder if it were him.  If it was my baby who was having a bit of trouble at that moment.

I cleaned my pump parts slowly and thoroughly and shuffled into the room.  Wishing that I could be home, on vacation, in the bathroom.  Anywhere but there.  As much as I loved and love Eddie, it was agony to be in his room all day.  Truthfully, nothing triggered my "flight" instincts like having to sit by my two boys in the NICU.  Yes, I wanted to see them and help them and be their advocate but I was virtually powerless when they were at their most vulnerable and I could not bear to see them with tubes, under lights, and with leads on their heads and on their hearts. And on that day I could not stand to be helpless anymore.  I had gone as far as I could and could not and did not want to go any further.

As I made my way to Eddie's side, Rob turned to me with a jubilant grin.  He took my hands in his and told me that Eddie would be able to try nursing for the first time that day.  That Eddie had made enough progress and taken enough strides that his doctors felt like he was ready.  

Without going into too much detail, I will tell you that that news saved me from a mental breakdown.  

That the promise of nursing one of my babies for the very first time and of immediately providing him with something that he needed and that would soothe him, brought me back from the edge of collapse.  And even though there were still difficult days after that morning, that after that, things were not quite so hard to take.  The beeping gradually subsided, and eventually, altogether stopped.  Eddie came home.  And on the 24th he will be turning 18 months old.

If one believed in coincidences, one would think that what happened that morning was the perfect one.  It was a wonderful coincidence that I had the opportunity to do something with Eddie that I had been dreaming of for a long time on what happened to be the day when I was basically finished.  That may in fact be true, and if so, I am grateful.  But there are so many inexplicable coincidences, consequences, phenomena, and hardships in this life.  And as a person who has experienced a few of these things firsthand I do not merely believe in coincidence or happenstance.  

I believe in faith.  I believe in hope.  And I believe in mercy.  I believe in God, His Son, Jesus Christ, and I believe in the Holy Ghost.  I believe in families and in human decency and goodness.  I believe that mistakes and frailties are inevitable but that they are not unforgivable.  And I believe in love.  I believe that love saved me that day and that it has saved me throughout my life when I have been at my weakest moments.  And when I have I wanted to simply stop.  

My heart is full of love for my brave little preemie tonight.  He is currently cutting four teeth, battling through a nasty cold, and is waking up at all hours during the night.  And, oh, how I love him!  He is full of life, curiosity, and passion.  He lives to be outside or to be opening something new.  He hardly sits down during the day unless he is eating or taking his nap and even then, he usually changes position.  He screams, he giggles, and he babbles.  He has a one-sided love affair with our "doggie" (poor Riggins) and thinks that every animal or any other object that moves is a doggie too.  And lately, he will not go to sleep unless he can nuzzle his head into a blanket and snuggle up with a board book.

Happy 18 months, our amazing Eddie.  You have saved us - in so many, many ways.

Help.

Before I had my own children I rarely heard about complicated births.  Although I heard about an occasional horror story about a baby who came close to dying, there was usually a miraculous recovery.  And if by some sad chance the baby did not make it, I did not know him or her or the family personally.  There was always a safe distance between my heart and the realities of new life.  I heard tales of mothers having difficult labors that lasted for 24 hours or more but I knew nothing about premature babies, let alone babies that were born under 5 lbs.  And I never heard much about infertility until we started thinking about having children ourselves.  But as I think of it, there was always that one couple, surely you knew people just like them, who never were able to have their own children.  They were always the nicest couple in my extended family or ward.  He was the scoutmaster, or something similar, and she was the favorite young women's adviser.  Everyone wondered why they did not have kids yet but they never talked about it - at least not openly.

Fast forward to my life now and I find myself thinking about that certain couple a lot.  Although I do not know their exact thoughts, I think that surely that I can guess their hearts at one point or another.  I ache with them as I see them look at other families in their neighborhood and ward.  I feel their longing and their emptiness at not being able to share in what brings other people so much happiness and contentment.  To say that they are jealous of what they see, and what they so desperately want, is not completely true.  Yes, they long for what others have and at times they wish other people were in their shoes so that they could feel solidarity in their heartache.  But mostly they just want to be part of the club.  They want to be up all night, wear spit up on their clothes, and wrap their little ones in cozy blankets.  They cry when they hear that a new baby is on its way partly because they wish for such happy news themselves, but mostly because they want their children to grow up with yours.  They want to be in your playgroup.  They want to join your carpool and they do not want to miss out on making memories with people that they care about.  They do not want to be left behind.

Two years ago, I felt like we were becoming "that other couple."  The couple that someone knew who was related to someone else or was a friend of a friend of someone who had gone through something tragic.

And I did not welcome this title gladly.

In fact, sometimes I think about my thoughts or my words through that difficult time in my life and I am surprised at how I fought events that were completely out my control with such vehemence.  But I had become part of an equation that was never supposed to be in my life.  Up until that point, I knew of people who struggled and they did it so heroically and so effortlessly.  They smiled in public, they said all of the right things, and they still participated in life.  They showed up and they played the game.  But when it was my turn and after I had buried my firstborn, I found that I did not always want to play.

Now, four years after becoming a mother, I am all too aware of what really happens when babies are born.  What really happens is that more often than not there seems to be that one moment when something could or does go wrong.  That instance when heart rates plummet or blood pressures sky rocket.  When a doctor is just out of reach or a head is too big.  There are so many incongruities in the process that, up until I had Henry, I thought to be perfect.  Now that I know what I know, I know that each baby has its own story.  And it might be different from anything that you have ever heard before.

Being the mother of an angel baby and of a former preemie brings its fair share of burdens.  If you have followed this blog a lot or even just a little you are familiar with our journey.  But our experiences with our children and having been "that couple" for two years also brings awareness.  In the years that have past since Henry's death we have learned of so many other angels.  So many other beautiful children that are gone and who will always be remembered by their loving families.  We have received midnight phone calls about mothers in difficult labors or babies that were too early and have needed a little extra help.  And we have been asked for advice from loved ones who are looking for the best possible way to be helpful to someone they care about who is in crisis.

With these thoughts in mind, I have created a new page on this blog, "Coping with Loss: Some Unsolicited Advice."  Here you will find some ideas on how to help someone, including yourself if that is your circumstance, to feel loved during a hard time.  Chances are that you will know someone (or know someone who knows someone) who has suffered a neonatal or infant loss, a miscarriage, had a premature baby, or is coping with infertility.  Any or all of these events are highly traumatic and any support that you could offer to a couple or individual who is going through one or any other number of these situations would likely be greatly appreciated.  Please keep in mind that the sufferings of bereft parents will be individual because their trial, much like their child, is unique.  And their grief or coping processes will be as well.  But hopefully our little page will help generate a few ideas on how to care for someone, or for yourself, if they or you are grieving.

I invite you to look at our ideas and I welcome your feedback.  If you have anything that you would like to add to our list, please leave a comment or contact me by email to let me know.  We would like to make this an open forum and a safe place for grieving parents and people who care for them.  With your help, we can assist people who need a little extra support through difficult times.  Life is hard and it can also be unfair, but a little bit of love goes a long way.

"And whose receiveth you, there I will be also, for I will go before your face.  I will be on your right and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up." Doctrine & Covenants 84:88

Wow.

Last Saturday I stumbled upon a bin of Eddie's clothes and as I opened the lid I gasped at what was lying on the top.  Above all of his newborn and 0-3 month clothes were tiny pajamas, delicate little hats, and the smallest most perfect onesies I have ever seen.  Clothes so miniature that one would unwittingly mistake them for doll clothes if not for the "p" on the label.  I gaped over the size of these tiny treasures.  Of how they fit within my forearm and how my hand almost stretched over the entire torso of each outfit.  Of how the clothes almost disappeared as I held them against my chest.

I saw clothes, but most of all, I saw a journey.  Visual reminders of a boy so eager to be part of the world and join his family that he literally could not be contained.  A brave, joyful soul who spent the first nine weeks of his life in the hospital and in the loving care of attentive and incredible nurses.  A boy who was affectionately dubbed as "the mascot of the NICU" for his sweet nature and his ability to continually exceed expectations.  But most of all, evidence of a fighter and of a boy who fought ounce by little ounce, to go home.

A preemie onesie and one of Eddie's 6 month onesies 

I now look at these preemie clothes each day with a solid, energetic, and healthy baby on my hip.  He misses nothing and notices everything.  He sees that I am holding something and so he lunges and lurches for the fabric too - ever curious and always willing to participate.  He is now over 17 lbs and has more than tripled in size since the day he came home from the hospital.

A standard-sized board book and a progression of onesies

And of all of the words and phrases that I could think of, write about, or say when I piece his incredible journey together, one frequently comes to mind:  wow.

The first week after he was born

Last week 

We will be celebrating Eddie's very first birthday next Friday and as we lead up to that jubilant event I cannot help but think of the day he was born.  I think of how that day started at home with a vivid dream and ended in the hospital.  A day of utter terror over his early birth but also a day that reawakened a love so complete that when the doctor announced that our son was coming and there was no way to stop him that I could not help but be excited.  That even though I knew Eddie was coming 12 weeks early and that he would face enormous odds, that I found myself grinning.  That even though we had again found ourselves in an unthinkable situation, that I simply could not wait to see him.  To meet this beautiful being who was obviously just as excited to see us. 

Holding each other for the first time

Oh, Eddie, how we love you!  Oh, how we adore you and your mega-watt smile and easy laughter.  We love your enormous and beautiful blue eyes and your perfect bottom teeth.  We are so thankful for your happy nature and curious spirit.  You bring such joy into our home each and every day.  We are so humbled to have you in our family and are so profoundly grateful for your good health.  This year has been crazy.  And nothing like we could have ever imagined.  It started out so scary and much of it was spent inside and away from people, but it has turned out to be one of the best of our lives.  Thank you for letting us accompany you on this journey and for trusting us to take care of you.  We do not know what the future holds but we know that with you in it, that it will be better...and that it will undoubtedly be exciting.

Love always,

Your Mama and Papa

Three.

Last year we celebrated Henry's birthday with a secret.  Just barely into my second trimester and finally getting over the worst of my morning sickness, we had yet to announce my pregnancy to anyone but our parents.  We decided to keep our happy news quiet for several reasons, but one of the biggest was that we felt it would be best to wait until after Henry's anniversaries.  Although we were certain that no one else was more excited about adding to our family than Henry, we wanted to reserve his day for one more year.

We knew what the next year would bring.  We knew that although Henry's birthday was and always would be a special day, that February 9th, 2012 was different, because hopefully, it was our last time commemorating his birth with empty arms.  It was important for me to have one last birthday to grieve Henry without distraction.  I wanted to allow myself to dwell a little longer on things that I normally could not think about everyday.  Images, memories, and sounds that were far too sad to revisit very often.  And, admittedly, I needed one more time to really feel the poignancy of his loss.  To be swallowed up in the emotions of truly missing him - my firstborn, my baby, "the one that got away."

I needed to feel the rawness again.

To lose myself in the intensity of loss just one more time before a little bit more of it went away.

Because I knew that once another little person entered into my life, that things would change and although they would absolutely be for the better, that I would likely not feel the same way again.

At the time, my grief was my strongest and most obvious connection to Henry.  Last year marked two years since his death and although my grief had certainly softened since his passing, it was still my conduit to him.  My tears, my heartaches, and my little rituals kept him fresh in my mind.  And they kept him as a constant in my life.

Several months after Henry passed away I realized that I could no longer hide in my house and that at some point or another I would have to re-enter the real world.  Up until that point Rob, my family, and my friends, cradled me from the shock of loss.  They sheltered me, fed me, and loved me and with their support I was able to gradually come out of my shock and start to grieve.  But I knew that that would change once I began to work again and to fully interact with the outside world.  It would have to.  The world had to keep spinning and I had to find a way to move with it.  But my little universe had been completely rocked and it had been rocked drastically.  In my lowest moments, I felt powerless and helpless, and in the dark, I felt doomed to be the victim of my circumstances.  To be forever missing something and always missing someone.

And then sometime between landing a new job and the simple passage of time it became clear to me that in order for me to get through Henry's loss that I needed to hold nothing back.  That one of the only ways that I would truly be able to survive such a devastating loss would be to immerse myself in the experience and let it follow its course.  To dive in, and not expect to tread water until I was ready.  I knew that even though at the time, our house was empty and our hearts were ravaged, that someday someone else would come along.  And when he or she came, I wanted no regrets in missing Henry so that I could turn myself over to them without regret.

So tomorrow we will celebrate the birth and life of Henry Robert Koelliker.  We will launch balloons to the heavens, we will undoubtedly shed some tears, and we will revisit some special and sacred places.

And I will clutch, hug, and kiss my sweetest and most meaningful connections to my oldest son.

And as I look into Rob's handsome face or Eddie's beautiful blue eyes I will be gently reminded of the boy who is waiting for me.  Who is surely so much like his father and his brother but is very much his own person.  And he is the one that I will never stop missing.

Seven.

Seven years ago today Rob and I were married for time and all eternity in the Salt Lake temple.  

I knew on that day that I was making the right decision.  There was no doubt in my mind that not only would Rob would be an incredible husband, but that we would be immensely happy together.  Growing up in my church, I was taught about the importance of marrying in the temple so that my family could sealed and bound together so that death could never separate us.  I always knew that this was a true and important principle but I never could have known how soon the blessings of eternity would bless our little family and impact my life.  Thanks to the decision that we made to be married in that sacred and special place, we will be Mr. and Mrs. Rob Koelliker forever.  What is more, thanks to that wonderful fall day, we will always have our Eddie, and someday, we will be reunited with our Henry.  My heart swells with emotion when I think of everything that November 10, 2005 gave me, because it gave me everything.

What a blessing it has been to be Rob's wife, his friend, and the mother of his children.  I look back at our years and experiences with a joyful heart and as I look to our future I only see more reasons to smile.  And on this happy day of celebration and reflection I cannot help but cheer.  

Rob, here is to our past, our present, and all of the millions more inside jokes that we will share in the next seven years and beyond.  

I cannot wait.

Peace.

As I fed Eddie tonight I took a moment to look at him.  I studied his face, the wisps of hair on his head, and his partially closed eyes.  I noticed his arms, which were both open wide and then I looked carefully at his pudgy hands.  I saw that since he was lying on his back, his legs were draped across mine and his body had gone completely slack.  And at that moment it became apparent to me that he was perfectly relaxed.  That he was likely in that blissful state between sleep and wakefulness, and that he was at peace.  I looked at his face, noting his slack lips, his long lashes and full cheeks and then I nestled into him. 

After a few more snuggles I carefully tucked him in and gently closed the door to his nursery and as I went through my nightly routine of washing, sanitizing, and tidying, I was struck by a feeling of completeness.

I was thinking about how much I love to return to my childhood home.  A house that is no longer necessarily mine but still a place that feels comfortably familiar and safe.  And as I thought about why I still love going to my parents's house I thought about my nights there and what made them so peaceful.  I thought about my dad tucking me in or my mom tickling my back and it occurred to me that after two and a half years of waiting, that Rob and I finally had the opportunity to provide someone with similar memories.  That we now have the chance to create a peaceful environment for Eddie and provide him with a place that he will love coming home to.

I was taken aback by the significance of this realization.  By not merely how long we have waited to have this seemingly simple opportunity, but by the bliss of parenthood in general.  By how even the most ordinary of actions such as diapering, dressing, and washing a baby suddenly become extraordinary when they are done for your baby.  By the beauty of knowing that Eddie is peacefully dreaming in his crib; a crib that is under our roof, just up our stairs, and within our reach.  And by the happiness that comes in seeing someone that was once so impossibly small grow and thrive.

Tonight I looked Eddie and although I briefly thought of our life before him, I really just saw him.  And only him.

Named.

When Rob and I were first married a little boy with blonde hair would come into my work with his dad.  I never knew his exact age but he looked to be about two or three years old and was just learning how to talk.  A typical toddler, he would climb on our office equipment and he kept his dad busy chasing him around.  I happened to notice him toddling away one day and I heard his dad call after him.  I was paying close attention because I was curious to learn his name.  I heard it and I smiled.  It was perfect for him.  Not only that, it was a name that I did not hear very often but one that was noble, intelligent, and strong.

I can vividly remember going home to Rob later that night and telling him that I knew what I wanted to name one of our sons.  Whenever I heard or thought of this name I could see him.  He was blonde, stalky, and full of energy and life.  He had Rob's face and was gentle and good.  Fortunately, Rob liked this name too and over the next four years we toyed around with other names but always came back to that one.  And on February 9th, 2010, Henry received his name through a special blessing (like a christening) in the hopsital.  I am still in love with the name Henry.  Probably even more so now than ever before.  I never grow tired of hearing it, writing it, reading it, or saying it, and I feel like my visions of our blonde haired boy are quite accurate.

But just as surely as I knew that I wanted a Henry, I also knew that there had to be an Edward.  

The name Edward has been used quite a bit in the Koelliker family as a middle name in honor of Rob's grandfather, Edward Conrad.  I never met Grandpa Koelliker but I know that he was a loving husband, devoted father and grandfather, and was a faithful member of the Church of Jesus Christ of Latter-day Saints.  He lived an exemplary life while living with a debilitating illness and has left an enduring legacy through his family.

It was our great honor to bless our little Edward Henry on September 30th and name him after these two outstanding people.  On that day, and every day, I am grateful for Grandpa Koelliker and Henry because they are not only part of our family but they give Eddie proud examples to follow.  I look forward to seeing their influence in Eddie's life as well as the influence of his other grandfathers, great grandfathers, and other righteous members of our family.  

(Four generations: Great Grandma Hess, Grandma Thomson, Mom, & Eddie)

On Eddie's day, the sun was shining, the leaves were changing on the trees, and we were all dressed in our Sunday best.  And for the first time in Eddie's life, he was able to be surrounded by both sides of his loving family.  

(Grandma & Grandpa Koelliker, Dad, & Eddie)

His grandparents, aunts, uncles, and cousins all gathered together to celebrate his special day. 

And he enjoyed the attention.

September 30th was a happy day for many reasons but I think the one that I appreciated the most was feeling the love of so many.  Eddie is one loved little boy.  I have known it from the very beginning.  He is obviously loved by us and our family but there are so many other people who have taken a vested interest in him and who want only good things for him. And I am sure that if we extended an open invitation to everyone who fasted, prayed, or cheered for him during his first months of life that we would fill even the largest of meetinghouses.

In our church, a baby is blessed in a circle of men bearing the priesthood and I keep returning to the thought of this sacred circle because it leads me to think of the numerous circles of support that I am blessed to have in my life.  I think of my family and then I think of the friends and acquaintances I have made in school, work, the NICU, and church, and before I know it, I start to see multiple circles.  And as the circles grow and as I take time to think about each member of each and every circle my heart becomes flooded with profound gratitude.  I love each and every person in my circles; some of them I have known since childhood, while others, just for a month or two.  They are all unique and I appreciate them for different reasons but there is a common denominator between them all and that is love.

I want to say thank you to the members of my amazing circles of support for being so willing to love Eddie as we do.  Thank you for your tremendous faith and providing us with strength.  Thank you for feeding us, visiting us, and for making us laugh when we needed humor the most.  Thank you for your thoughtful texts, phone calls, emails, and other little notes.  Thank you for being patient with us while we hid in the NICU and barricaded ourselves at home for so many months.  Thank you for your happy thoughts.  And thank you above all for your prayers.  We have felt your love from the very beginning and it has helped.

Honesty.

It is finally starting to feel like the beginning of fall in our little home and I am very happy to greet a new season.  It was an unusual summer.  Indeed, it was probably the most bizarre summer of my life.  And to be honest, I do not even know when this past summer really started.  I cannot remember the exact day when I consistently wore flip flops or when all of the barbecues were in full swing.  I have a vague recollection of when June, July, and August began but only because of shift changes or new room assignments.  At some point, I do know that the weather started to get hotter because the air conditioning in the NICU turned on and I had to take a sweater with me each day when I sat by Eddie.  I also remember the summer holidays but only because, like the rest of our days, they were unlike any Memorial or Father's Day that had come before.

Although I do not recall exactly what happened each and every day that Eddie was in the NICU, I will never forget how it felt to be there for two months.  Our lives changed the day Eddie was admitted and they changed immediately and drastically.  Aside from all of the emotions that were involved in the birth of our son, our entire schedules were turned upside down.  We adjusted everything so that we could be by Eddie's side.  Each day, Rob and I would start the day together in the NICU at 8:30 a.m. and then Rob would go to work.  I would stay at the hospital during the day until Rob got off of work and we would then leave the NICU at 6:45 p.m. when the nurses changed shifts.  We would then go home and eat dinner and be back at the hospital by 8 p.m. and stayed until 10 p.m. or later.  Then we would wake up and do it all over again.  And every day started and ended with the same questions: would Eddie be able to manage his breathing?  Would he eat well?  Had he gained or lost weight?  And who would his nurse be for the next 12 hours?

It was an exhausting and emotional routine and at times it felt like my nerves could not bear another day.  But time passed and somehow we became accustomed to our unusual and highly regimented schedule, all the while looking forward to the day when Eddie could come home.  Day after day we drove the same route, formed new (and lasting) friendships with Eddie's nurses, and adjusted to our new lives.  We ate, slept, and breathed the NICU for nine weeks and then suddenly, and blessedly, Eddie came home and our routines and schedules changed once again and even more drastically.  And to be perfectly honest, at first it felt like bringing him home was almost as frightening as it was to have him in the hospital.  Maybe even more so.

Eddie was born on May 24th and even though one or both of us was with him every day since he had been born, in many respects, it felt like he was not truly ours until July 24th.  Yes, we had a baby and we changed his diaper, took his temperature, and fed him every three hours during the day, but always with the careful assistance of a nurse - and always in a highly controlled setting.  Eddie's first hours in our home were our first hours utilizing parenting skills that we had only been partially exercising for the past two months.  And for me, those first hours were scary ones.  Not only was he an infant and we had to learn to interpret his signals to give him what he needed, he was also on supplemental oxygen and he was just five pounds.  What was more, his immune system was (and still is) fragile and we had to screen every visitor to make sure they were germ-free to keep Eddie healthy.  For me, everything was new, everything was high-stress, and everything was very, very important.  

During that first, tenuous month I was confronted with some surprising realizations: being a mom is hard work; parents really do not get much sleep; babies cry a bit more than you would like them to; and new moms tend to get stir crazy.  Even though I had heard similar revelations from other parents, these realities still shocked me largely in part because after Henry's passing I made some well-intentioned vows to myself that were a little unrealistic.  At the height of my grief, with empty arms and an angry heart, I promised myself that I would never need help.  That if we were blessed with another child after losing Henry that I would never grow tired of waking up with him or her in the night.  And more importantly, that if I ever felt like I needed help or I was tired that I would never ever admit it.  Admission of such feelings would be a betrayal to my own sense of pride and to my grief in general.  During those dark days, I ached to comfort, soothe, and love my Henry and if I could not be with him then I wanted to be with his sibling.  And it felt incredibly ungrateful to be choosy because I knew in my heart that no amount of sleep deprivation or colic could be worse than the hollowness of loss.

And in a way, I was right.  Even though we are still very much operating on all cylinders in the wee hours of the night in our house, the lack of sleep is an easy sacrifice to make.  In fact, it is not a sacrifice at all.  But it took me the first month after Eddie came home to give myself permission to be a somewhat normal mom with somewhat normal emotions.  I tried to stay strong in my resolve after those first long weeks but I eventually had to make some concessions.  I needed to come to terms with the fact that I could talk about being tired and admit that it made me anxious to hear Eddie cry and still be true to my feelings and Henry's memory.  That it was okay to beg for advice from the experienced mothers around me and admit that I did not have all of the answers even if I did have the best of intentions.  And once I did that, things started to get a little easier.

Eddie's second month at home was incredible.  He began to fully track things with his eyes, he started to coo and babble when we sang to him, and he has started to smile and giggle.  In fact, he sometimes smiles so big and so broadly that the little corners of his eyes close and he squints (it looks like my cheesy grin is genetic).  And as of three days ago, he has officially spent more time with us than he did in the hospital.  He is now a little over four months old, six weeks gestational corrected age, and is 9 lbs and 4 oz.

His presence makes our house feel like a home and to be perfectly and completely honest, he is healing our broken hearts.