Control. Pt. 2.

When Rob and I decided to start having children we somehow knew we needed to handle our expectations with care.  Although we did not have a reason to believe so at the time, I think we both felt like it could possibly take longer to get pregnant than we would like.  We trusted our instincts and we were patient.  For almost one year I tried not to obsess over calendars and kits.  I purposely distracted myself with my job and eventually, with applying to grad school.

I was accepted to grad school in March 2009 and from then on my excitement and preparation for furthering my education seemed to take pregnancy even more off of the forefront of my mind.  After I was accepted I felt like it was clear that that was the direction my life was going to take for a while.  We shifted our focus as a couple and planned on waiting a bit longer for our children to start arriving.  But by the beginning of that July I experienced persistent stomach pains that led me to believe I was getting an ulcer.  Imagine my surprise when I learned I was pregnant and I was still expected to be starting grad school the following month.

I should have taken notice of that process and how it played out.  The timing did not work exactly like I thought it would and even though I was okay with it at the moment, I did not have exact control over events that would change the course of my life.  Although I suspected it would take a little time to start having children I never could have guessed just how little control I would have in getting them and keeping them here.

After Henry's death I felt powerless.  Although I still had faith in God I struggled with the notion of how much control I actually had in my life.  I had the ability to make my own choices but my behavior and personal righteousness no longer felt like a guarantee against life's hardships.  Prior to Henry, I believed that things would work out the way I wanted if I kept being a good person.  When Henry was born I felt like Rob and I had paid our dues but even though we were loving and devoted parents we never took our baby home and that was a reality that shook me deeply and could have sent me spiraling.

I started to think about my motivation for being good at all.  If I was just being good to avoid tragedy and it still found me, then what was the point?  Why be kind, why be patient, and why be faithful when during the times that it really mattered life did not seem to work in my favor?  Henry's death alone seemed to be too much to bear but that was not the end of seemingly unbearable things for us.  We lived through infertility, a devastating miscarriage, a very premature baby, and then nine long weeks of his hospitalization.  So why even try to do what is right if it could not give me my children when and how I wanted them?

I then came to understand the obvious: even though good behavior definitely has its benefits, no one is guaranteed an easy life.  No one.  No matter how saintly they may be.

I now see practicing goodness in a very different way.  I try to be good not because it is insurance against disappointment or grief, but because I enjoy it.  I like to smile, I love to laugh, and thankfully I am not prone to violent crimes.  And I guess above all else, I am obedient in going to church, being kind, and trying to be a thoughtful representative of my faith so that I can show my gratitude to my Father in Heaven and His Son.  When I think of goodness in terms of showing my love to and for Them, it really is not a question of whether and why to be good at all.  We may not have control over every single thing in our lives, but we know that Someone else does and He knows best.

We are joyfully expecting another son in February of next year.  This next Koelliker boy is healthy and is being cared for by excellent doctors.  As with his brothers before him, we do not know exactly what will happen.  He may come early and he could even come under frenzied circumstances.  Or, he could surprise everyone even more with a completely expected and normal delivery.  We simply do not know.  But we do know that we love him.  Oh, how we love him and each of his siblings that have come before him!  And even though it took me five years and four pregnancies to get here, I feel like that really is okay for now.

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

Hope.

In keeping with the spirit of the season, my wonderful friend Jessica invited me to join in with her on a service project for NICU and hospital-bound moms.  Like me, Jessica has also spent time with her babies in the hospital when she was on bed-rest with her first child and in the NICU with her second.  We are two mamas who know how it feels to be lonely in the hospital and we want to send some Christmas cheer to mothers in need this year.

If you're interested and want to learn more, please visit our site and join with us as we bring hope to mothers and families who fight every day for their tiny babies.

Dear Friends,

This Christmas season we have much to be grateful for. We are looking forward to everything that comes with the holiday season: decorating our trees and watching our children immediately re-decorate them, assembling gingerbread houses at annual family parties, watching The Christmas Story by the fire, and wrapping little presents in the late evening hours after our babies have gone to sleep. 

Just a few years ago, Jessica celebrated Christmas much differently. Instead of being home with her family, she was up at the University of Utah, in the Maternal/Newborn Care Unit, confined to a hospital bed. The pregnancy of her first child, Evie, was high-risk and required her whole body, mind and spirit to be fully focused on keeping her baby alive and growing inside of her. Jessica spent 7 weeks up at that hospital, and she watched Christmas and New Years Day come and go in that lonely little hospital bed. Many nights were spent watching snow softly fall outside her windows, shifting from her left side to her right, and placing her hand firmly on her stomach, waiting for a reassuring kick. 

It was a hard time, made more difficult by the holiday season looming outside of Jessica's hospital room. Life seemed to pulse on for everyone else, but in her world, life had stopped altogether. She'll never forget that Christmas of 2010, and the never-ending ultrasounds, NST's, and IV's that punctuated her time there. Christmas is a time for miracles, and in the end, she got hers in the form of a beautiful 5lb 15oz baby girl she and her husband named Evie. She finally left the hospital on January 24, 2011, and shed many tears as she walked out of those doors and back toward her life.

Less than two years later, she found herself making that familiar drive toward the University of Utah hospital, where her second daughter, a newborn named Nora, was being treated at PCMC for a life-threatening condition called Necrotizing Enterocolitis (NEC). The hospital became her home, once again, this time as her newborn daughter fought for her recovery, and Jessica watched helplessly at her bedside.

Christmas is a magical time for most of us, but it can also be a heartbreaking time for many families who find themselves in similar situations. This holiday season, we are asking you to remember those families who are spending Christmas inside the walls of the University of Utah Hospital, specifically those mothers who are facing life-threatening pregnancies, like Jessica was, or those who are spending every waking moment at the bedside of a tiny loved one in the NICU, like Erin.

Erin and her husband are what the NICU nurses lovingly refer to as “repeat offenders” since both of their two boys were in the hospital.  Henry, Erin’s oldest son, was born in fetal distress and spent four days in critical care.  Two years later, her second son Eddie decided to arrive 12 weeks early and spent 61days in the NICU.  Between the 65 days that she spent in the unit with her boys, she learned more than she ever wanted to know about living in the hospital and worrying about a sick baby.  Being a NICU mom means being forced to wait and from the minute that her boys were born, Erin waited for most of the special moments that all mothers and babies cherish.  

After their births, Henry and Eddie were immediately passed into the NICU for emergency support and Erin was not able to see either of them until hours after they were born.  Erin waited for 4 long days to hold Henry for the first time and six days for the chance to hold Eddie close.  During those first scary hours when the condition of both boys was still uncertain, she waited for encouraging news in her hospital bed and desperately prayed for hope, help, and peace.  As the days progressed, she waited for test results and status reports in the hallways of hospital and in the unnaturally quiet walls of her home.  But mostly, Erin spent her days in the NICU by the beds of her children as she watched as they fought for their lives. 

Tragically, Henry took his first and last breaths in the NICU and Erin is still waiting for the chance to be with him.  Two years after Henry’s death, Erin waited for Eddie to grow in the very NICU that her oldest son lived and died.  She winced with each blip and beep of Eddie’s monitors and she prayed that he could have a peaceful and full life.  She talked with his nurses each day and on the bad days, she cried and wished for a better life for her second son.  Thankfully, the day did come when Erin’s wait was over and she and her husband took Eddie home.  At 37 weeks gestation and exactly 5 lbs, he was just as impatient as his parents were, and he couldn’t wait any longer.

With so many babies born each day, there are some like our Evie, Nora, Henry, and Eddie, who will come under special circumstances and who need extra help.  By the grace of God, all babies will come into a loving home with good parents who will stay by their side and support them.  But even mom and dad need help now and then.  And during this season of giving, we ask you to remember the mothers.

On Friday, December 20^th, we will be delivering care packages to women in the Maternal/Newborn Care Unit and the NICU at the University of Utah Hospital.  These packages will be filled with magazines, lip-gloss, nail polish, lotion, encouraging cards and treats, which we hope will make a big difference to these exhausted and brave mothers who are living their lives in the hospital this Christmas. Sometimes, we all need something special to remind us we haven’t been forgotten, and to help us get through another day with hope in our hearts. With your help, we hope to provide that love and support to these special mothers in need.

We know that there are many worthwhile charities and causes that are deserving of your help.  But we also know that even the smallest donation to us will make a big difference to a mother who is tired because she has spent two months in the NICU with her baby who was born at 23 weeks.  Or to another mother who has been on bed rest in the hospital for a month and is fighting each day to keep her baby.   

This is a grass-roots effort that will be fully operated and managed by us, but rest assured that the money that you donate or each cookie that you bake will go to a deserving mother in need. We would be so humbled by any offering you can give us, whether you donate your time, money, or talents, we would be thrilled to have your help.

With Love and Gratitude,

Jessica & Erin

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

Angel.

Thursday had been a good day.  At some point in the early morning his kidneys started to function and he had his first wet diaper.  We felt greatly encouraged; maybe things were finally starting to stabilize.  Maybe the intensive treatment he was receiving was starting to run its course and do what it was intended to do.  Maybe he was healing just as we were all hoping he would.

Over the course of that day, his blood gas (tests that monitor oxygen and carbon dioxide in the lungs) was a bit more stable and he was more animated.  He fought his nurses when they tried to change his tubes or check his vitals.  And he seemed to be spring-loaded with energy.  Due to the cords from his ventilator, he had to lay flat on his back but he positioned his arms to his sides with his hands by his head, clutched in tiny fists.  He looked strong, stalky, and so much bigger than his 6 1/2 pounds; as if he would walk off his open incubator if he could.

But that night, he had his first seizure.  And as we talked to his doctor on Friday morning I was hit with a reality that I had been forcing myself to avoid.  Perhaps his condition was as serious as his team of doctors, nurses, and brain specialists had been telling us since his birth.  Maybe he was as sick as they said he was.  And although I tried hard to ignore it, it was at that moment that the probability of his death crept into my thoughts.

I do not remember much of that Friday but I am sure it was filled with more tests, phone calls, and hopeful reassurances.  We received some important visitors that day.  Friends, family, and church leaders who all came to impart love and hope.  They brought us messages of peace and told us about other children who had been born in similar circumstances who were now grown and were functioning, healthy adults.  And although we were hesitant to leave his side that night, we left in good spirits and were trying our best to be brave.  We were focused on the big test that was going to be administered the next morning, the test that we had been waiting for with baited breath.       

After his birth, Henry was taken to the NICU and placed on a cooling blanket (known as the THAPCA study).  Since he was not breathing when he was born his doctors suspected that he had been without oxygen long enough to be in danger of organ failure.  The THAPCA blanket would cool his body down and hopefully slow the progression of damage and help restart his systems.  His team would use monitors, blood tests, and other scans to determine Henry's condition but an MRI would be the definitive diagnostic tool to let us know how he was really doing.  But being on the THAPCA meant that Henry had to be resting on his blanket for 72 hours to give his body enough time to heal.  And so, for 72 hours after he was born we spent time with his nurses, his doctors, and with our family, and we thought about the MRI and what we would find.  As the days went by and as the seriousness of his condition started to become more clear, I hoped that whatever the news was, that it would be something that we could work with.  That even if Henry had lasting effects from whatever happened before or during his birth, that we would be able to take him home and provide him with a full and happy life.

And then, finally, it was Saturday, February 13th.  And it was the day of Henry's MRI.

It was still dark when we got to the hospital that Saturday morning.  We had not slept well.  I had to get up in the night to pump and Rob called the NICU at regular intervals.  We were restless, anxious, and eager to be by his side.  And most of all, we were hungry for good news.

Henry's MRI was to be performed that morning at Primary Children's Hospital and so a team of Life Flight nurses came to transport him between hospitals.  I was still not able to walk very quickly so Rob pushed me in a wheelchair as we followed our baby through the quiet halls and tunnels of the hospitals.  In a small waiting room, we prayed and hoped that Henry would not be too uncomfortable during the procedure.  Henry was particularly sensitive to noise and we worried that the rattling of the machine would cause him to seize or make it difficult for him to breathe.  And I think that in some ways I felt that his behavior in the test would reflect the results.  If he reacted well, then everything would be fine.  If not, then... After what seemed like hours, the team emerged around the corner with Henry's isolette.  He did well and handled everything beautifully.  Relieved, we went back to the NICU and were told that we could expect to receive the results later that afternoon.

But as time wore on that day, we intuited that something was not right.

After his MRI, Henry had been moved off of the THAPCA blanket and out of the first room in the NICU.  He had his very own room in a quieter part of the unit.  Initially, I took this to be a good sign since the babies moved rooms in the NICU according to their needs.  The first room was for the smaller, more critical babies and the fact that he moved rooms seemed to indicate that he was progressing.  His sweet nurse had changed his bedding after his return and he was lying on a green blanket with little frogs.  And although we had yet to hold him since he was still intubated and needed his ventilator, it was the first time we felt comfortable really touching him.  

We then met in Henry's room to learn the results of the MRI.  The neonatologist who had been working with Henry since his birth was off that day so we met with a new doctor, a nurse practitioner, and a fellow to talk things over.  The results of the test were conclusive and they were devastating.  The time that Henry had been without oxygen, however long that may have been, had proven to be fatal and he had total brain damage.  We searched their faces for hope.  For the possibility of eventually taking him home but we found and received none.  The neonatologist told us that Henry could very well live on the ventilator for an indeterminate amount of time but there was no telling how long his body could last.  He was already getting the highest level of adrenaline to help his heart and he could not receive any more.  As he was at that moment, he was in danger of going into cardiac arrest.  They told us that we did not have to make an immediate decision but we would need to decide what to do if Henry got into trouble.

What happened over the next few hours is understandably very personal but most of it occurred in that room and all of it was motivated by love.   Our little Koelliker family embraced for the first and last time and we said our goodbyes.  Since Henry came on his own time (he was three weeks early), we decided to take him off of his ventilator and let him leave on his own terms.  And Rob and I were both cradling our son as he took his last breath. 

I have seen many things since that fateful day but I never wanted to see that room in the NICU ever again.  I hoped that shuffling out of those doors on that February night, numb with grief and dumbfounded by loss, would be the very last time.  Or that at the very least, that I would never go back there until I was fully ready.  But life had other plans.  And we were regular visitors in the very same unit that Henry lived and passed away in for almost nine weeks after Eddie was born.

And so, on the night before Eddie came home from the NICU we decided to revisit Henry's room.  It was vacant and we felt like we needed to take the opportunity to pay our respects.  Eddie's time in the NICU was so unlike his brother's.  We would be walking through the double doors the next day with everything that we had hoped for coming into it.  Everything that we so desperately wanted for both of our sons.  We knew that we had a lot of people to attribute the miracle of Eddie's life to, but we always felt like Henry was a constant and silent advocate for his brother's well being.  And as we approached the room that night, the lights were off and everything seemed to become very still.  In silence, we took our time looking around.  It was being used as a makeshift conference room at the time so there were no beds or isolettes inside.  And as we stood there, I inwardly hoped for some small sign, for some clue that Henry knew we were there at that time and in that moment to pay tribute to him.  I searched the room trying to find something to provide me with comfort but came up short.

And then, Rob found it.  

On the wall opposite the door was a laminated sheet of paper that the nurses put next to babies' beds.  These sheets show the baby's name, doctor, nurse, and the goals that that baby has for the day.  This one particular sheet happened to be on the exact same wall where Henry's bed was placed on the day that he passed.  And it still happened to have some information on it for the baby that had just left the room a couple of days before.  The names were all standard and meant nothing to us, but the goal stood out and happened to say, "good night's rest."  We hoped that whoever that baby was who was in Henry's spot and in his room had indeed had a good rest on that night.  But more than that, we knew that wherever he was, Henry was resting.  That he was at peace and that he was very much aware of us.  

But I believe that Henry did not rest for long because, much like his papa, he probably went to work almost immediately, and did the thing that he knew how to do best.  He started to protect his family.  

I believe that he is our angel.  That he will always be Eddie's older brother and our son.  And I believe that some day we will see him again.  Until then, we will think of him each and every day, but particularly on the day that he earned his wings.

Happy angel day, sweet, sweet Henry.  We love you so very much.

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.

December.

December means a lot of different things to a lot of different people.  

To some, it is all about this guy; the presents that he brings and the reindeer that he cavorts with:  

Santa made an unexpected house call this year.  His elves must have told him

about this good little boy who is hibernating for the winter to stay away from germs.

For others, it is the only time of year when it is socially acceptable to wear applique Santas on their clothing:

But for us, it means this:

This:

Henry's cemetery hosts a Christmas Luminary each year where they fill the grounds

with thousands of candles in paper bags.  The lights around its sacred lawns 

are some of the most magical ones that we see each year.  

(The orange light in the picture above is a candle in the snow resting just above Henry's grave. )

And finally, after three long years of waiting, being able to do this:

And this:

But what December really means to us is a greater opportunity to celebrate Him:

Church of Our Lady 

Copenhagen, Denmark May 2010

Because of this:

"He rose from the grave to "become the firstfruits of them that slept" (1 Corinthians 15:20).  As Risen Lord, He visited among those He had loved in life.  He also ministered among His "other sheep" (John 10:16) in Ancient America.  In the modern world, He and His Father appeared to the boy Joseph Smith, ushering in the long-promised "dispensation of the fulness of times" (Ephesians 1:10).

...We testify that He will someday return to earth.  "And the glory of the Lord shall be revealed, and all flesh shall see it together" (Isaiah 40:5).  He will rule as King of Kings and reign as Lord of Lords, and every knee shall bend and every tongue shall speak in worship before Him.

...Jesus is the Living Christ, the immortal Son of God.  He is the great King Emmanuel, who stands today on the right hand of His Father.  He is the light, the life, and the hope of the world.  His way is the path that leads to happiness in this life and eternal life in the world to come.

God be thanked for the matchless gift of His divine Son."

"The Living Christ: The Testimony of the Apostles, The Church of Jesus Christ of Latter-day Saints"

Merry Christmas from our home to yours.  May your day be filled with peace and your heart be filled love.

Rob, Erin, & Eddie Koelliker

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.