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.)

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

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

Now.

I had almost forgotten how much fun summer could be.  Maybe it was the way I processed my grief.  Maybe it was because for two years I trained myself to avoid parks and playgrounds during the day.  And maybe it was because my heart ached each time I heard about summer play groups and play dates.  I walked away from sandboxes and always averted my eyes from umbrella strollers.  Maybe it was a combination of all of these things.  But it probably had to do with more than that.

Last year I knew that summer was happening but we were very much removed from it.  Eddie was born on the Thursday before Memorial Day weekend and we spent all of the major summer holidays in the hospital with him until we came home on the 24th of July.  And although we were immeasurably happy to have Eddie in our family at that time, the first weeks that we spent together were not exactly what we had envisioned summer to be like with our new baby.

From the onset, I did not know what this summer would feel like but after being shut inside all winter I knew that whatever was lying ahead of us had to be better than what we had been through.  We could not wait to be around people again.  To be able to spend time with our family and friends.  And we were very eager to not to have to worry about germs.

And so far, Eddie's days as a toddler in summer have been simple ones and they have been filled with firsts.

He enjoyed his first play group, his first swim in a pool, and his first time at a splash pad.  He loved his first root beer float and sunk his teeth into his first bite of corn on the cob.  He attended his first of many barbecues, his first of many family reunions, and he loved being on his first hay ride with his cousins.  He slept in a cabin for the first time and he also spent the night in a hotel.  He held a sparkler for the first time and wished our country a happy birthday.  He rode (very slowly and safely) on an ATV for the first time.  And then he celebrated being out of the hospital for one full year.  He went to his first rodeo (he actually went to two in the same week) as well as the zoo and the aviary.  And he played in the dirt, swung on a swing, and had a picnic in the park.  All for the first time.

Now that Eddie has gotten so many firsts out of the way we have found ourselves in the happy position of being able to repeat things.  Some things we have done many times and some we have only done once but either way, Eddie has been busy.

And now that he is gradually figuring out that life can be much more rewarding on two legs rather than four, I suspect that life with Eddie will get much busier.  And fairly soon.

First.

Last month our little prizefighter turned one year old and from the moment that I woke up that day, my thoughts continually returned to that little pain that I felt on the lower right side of my belly just one year before.  I thought about how that pain increased as the day progressed and I then thought about the moments leading up to Eddie's emergency delivery.  And as I recalled and replayed the events of that day I was humbled by how all of the pieces seemed to fit together.  I thought about how all of the people, places, and things just happened to be exactly where they needed to be and how everything was just as it should be so that Edward Henry Koelliker could come into this world.  And I could not help but smile.

I also thought about the time that Eddie spent in the hospital and how particularly terrifying his first days of life were for Rob and me.  He did remarkably well from the start but Rob and I had been in the NICU before - and we knew too much.  I had faith but I admit that I hoped for the best but half expected and absolutely dreaded the worst.  And as the days progressed my shock from his prematurity wore off but I was riddled with anxiety and fear.

But even as a tiny baby, Eddie made it difficult to be frightened for too long.  With each and every one of his milestones he grew stronger and he made it abundantly clear that he was his own person.  And that he was here to stay.

And he was and still is everything that we needed in our family.

                                       

We celebrated Eddie's special day with our family and friends and while the party was in full swing I overheard snippets of conversations that I am assuming were started with recollections of where everyone was the year before and what they were doing when they heard the news about his unexpected birth.  From what I gathered, each person was in a different place and was going about the business of their own life.  But everyone remembered where they were and how they felt.  And they all expressed their gratitude for being able to celebrate Eddie's first year and for his incredible "fight."

Eddie with his loving grandparents

Three generations of Koelliker boys  

The birthday boy right before he dived into his celebratory cupcake

Sweet, sweet Eddie, boy, have you ever given us a year to remember!  

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

Big.

Eddie knew that big changes were in the air.  

Although he couldn't read a calendar and know that spring had finally come, he figured that it must be getting warmer because his parents weren't bundling him up in so many blankets and jackets like they used to.  He could also see that more sunshine was coming through the windows in his house.  Last week, he was able to sit outside on the front porch with his mom for the first time in a very long time.  His mom took his socks off so he could feel the breeze in between his toes.  

He grabbed his feet and squealed with delight.  He smiled a lot. 

The next day, he went for a long walk with his dad and his trusty dog Riggins.  It was a little colder that day but he didn't mind.  He flapped his arms and legs in the wind like a baby bird and he enjoyed saying hello to his neighbors.

He could see that things were starting to get green around his neighborhood.  He noticed tiny flowers starting to make their way out of the dirt and it made him happy to see their pretty colors.  He thought that since the flowers were starting to grow and his grass was getting greener by the day, that maybe he should work extra hard to be ready to play this summer.

He hadn't been swimming in a swimming pool yet, but he knew that he would be going a lot very soon.  So he got busy working on his impressive physique.

He also figured that while he would be at a swimming pool that he would likely be eating tasty foods at summer barbecues.  He hadn't had a lot of table foods quite yet but he thought he should eat more to prepare.  So he worked on developing his pincher fingers and feeding himself.

He also started eating more solid foods like squash, sweet potatoes, yogurt, and cottage cheese, and he liked everything he ate...except for peas.

And as he started to eat more solid foods his gums started to hurt a bit.  And then a little bit more.  And a little bit more.  And then one day, his very first tooth started to grow.  It hurt a lot and it kept him up a couple of nights, but he was excited to have it.  He liked to put his fingers in his mouth so that he could feel it.

And he noticed that once he had his tooth that he could make more grown-up noises like "ga ga" and "ba ba."  He loved hearing himself make these new sounds and he practiced them a lot.

And he thought it was probably a good time to master sitting up.  He had been working on it for a few months but hadn't seen a need for it until the weather got nicer.  He thought he should probably try a bit harder.  He is still working on it, but he knows he will be sitting up all on his own very soon.

But in order for Eddie to feel completely ready for the times he could meet his friends and play with his cousins, he thought he should be able to move.  He had noticed that most people can move around without being held.  He was especially interested in watching Riggins walk and dance.  He really liked being with Riggins.

And so, today, he decided to crawl.

And now, once people stop coughing and having runny noses, Eddie has made enough big decisions that he will be able to be outside and finally meet the people who love him so very much.

And he couldn't be more excited about it.