Heavy Hearts for NICU Families

Life in the NICU has been heavy on my mind recently.  I don't know why.  It's not the same time of year we were "doing time" there.  The weather is good and not making anybody sad.  Things are going well!  But I just can't shake the memories of Ethan's birth, our time in the NICU, and the families who are going through those same things at this very moment.

That must be it…NICU life doesn't end.  Once you've been inducted into this "Hall of Fame" it never leaves your side.  You are so eager to leave, counting the days, begging the doctors, and praying for the day you can leave those doors forever with your baby in tow.  And yet it becomes such an important part of your life that a mourning for life in the NICU doesn't seem to leave.  

In the days of chaos now when I have a 6 year old and 1 year old fighting over a baby toy, the television is blaring some obnoxious "educational" show, dinner just isn't unthawing fast enough, and I'm trying to hold an adult conversation about work on the telephone, I think back to the quiet of the NICU.  Ahhhh….it was so peaceful, so quiet, but so alone.  So full of fear.  So full of guilt.  Full of tears.  

So it's a weird connection we have with the NICU.  And though I could contentedly go the rest of my life without stepping into those hallways again, the loss of the relationships we had with the NICU staff, the loss of the quiet, and the loss of focus on our sweet little baby as the world began to creep back in when we returned home is still in our hearts.  

But how can I even complain when we didn't experience the ultimate loss?  We walked out of that NICU on Oct. 15, 2010 with a healthy, teeny-tiny, baby boy in a car seat.  Some car seats leave empty.  There were days in that NICU when I had to leave Ethan behind while I went home to be with Trent and on those days it felt as though my feet were molded into concrete.  Each step was laborious.  The NICU door seemed that it might weigh a million pounds.  But we got the joy at the end.  It hurts so much to think of those whose feet may feel forever in the concrete because their arms were empty when they took the last steps through the NICU.  And I think that is why my heart is heavy.

Not a day goes by that the families in NICUs across the country don't go through my mind.  Some regular dreary Wednesday when life is boring and our focus is on the most recent gossip on TMZ or whose status update on Facebook is the most ridiculous, remember the families in the NICU.  They are everywhere...and just like you.  They didn't choose their time in the NICU…it chose them.  They are scared from their toes to their head, hopeful in their hearts, and a kind word of encouragement or simple prayer sent up for them will help calm their nerves and soothe their spirits.  

We're embracing our induction into the NICU, we've stamped our hands into the sidewalks, and will be forever changed by the experience.

A day of reflection

One year ago. 365 days.  In some moments it seems like I blinked twice and that time has passed.  In others, it seems like an eternity ago that we began a very unexpected chapter in our lives.

It was one year ago today (August 11) that I stood from my chair in the living room and knew something wasn't right with my pregnancy.  My water had inexplicably broken at only 27 weeks into the pregnancy, 13 full weeks before the full term 40 weeks.  

One year ago I took that scary trip in a Cessna airplane to Topeka and the doctors in that big hospital looked at me with uncertainty as to the future of my baby.  One year ago tonight the temperature was a hot and humid 95 degrees but storm clouds gathered to the north and my parents held each other in their car as they watched the airplane lift off into the unknown.

One year ago today I knew nothing about preemies.  Before that day prematurity was something that happened to other people, like women who treat their bodies terribly during pregnancy.  I couldn't stand to see pictures of babies in hospital beds with wires coming from their tiny bodies.  I would turn my head and ignore the beautiful little miracle pictured in front of me.

In this year I have read and heard so many stories of babies born at Ethan's gestation, 28 weeks (27 when my water broke), and there are some who have incredible survival stories, others who have struggled, and many who didn't make it past those precious first few hours.  One year ago I didn't know where we would fall in that category but I knew that I wasn't sure my heart could handle losing a baby I already knew so well.

I looked into the eyes of my doctor as she said, "It's up to the Big Man upstairs to know what will happen next," and saw tears well up in sympathy for us.  My parents were filled with fear when they patted my hand as I was wheeled to the ambulance that would take me to the awaiting airplane.  

My husband must have felt every emotion known to man within a two hour window as he kissed my head and watched them wheel me away, packed a bag, filled up the van, and went to comfort our son Trent before having to leave him for an unknown number of days.  He drove north into the darkness.

One year ago tonight he walked into that triage room where I had been since arriving and it was as if a cool breath was poured into my lungs and he could help make everything right.  

Our world was beginning a new chapter, and yet those words don't adequately describe the feelings.  Honestly for a few days it was a spiral downward.  We didn't know what to expect, we didn't understand, we were in an unfamiliar place with unfamiliar people.  Our friends didn't know how to react or what to say.  We cried tears that we were sure wouldn't come after crying our last tears.  

Today has been reflective, sometimes bringing tears, most of the time joy.  Because 8 days later the downward spiral stopped, began spinning upward, forward, and has led us on the most joyful path we've ever experienced.

As much terror that filled my bones, the pain of the separation, the inconvenience and short lived pain of the injections, blood draws, and numerous IV's…they pale in comparison to the miraculous joy we felt the moment we heard those cries.  And in 8 days from today, I'll share more of just what this miracle has done to change our lives.

Our unexpected gift

In March of 2010, we found out we were expecting our second child.  After five years since our first son, Trent, we were thrilled!  We had done all of the typical expecting parents things like pick out nursery bedding, go to all of the prenatal appointments, tell Trent all of the stories of what a good big brother he would be, narrow down our list of names, etc…

The pregnancy was relatively uneventful and in fact was much easier than our first.  I have chronic high blood pressure so I did meet with a high risk doctor in Topeka to monitor my medications, but his role was expected to be minimal.  

On August 11, 2010 I took the day to clean house.  With an especially big work week ahead of me, I wanted our home to be comfortable and clean while I buried my head in the computer.  We got a big box in the mail that day containing all of our nursery bedding.  When Landon got home from work we took out the pieces and talked about how the excitement was building at 27 weeks.  We knew we were having a boy and his name would be Ethan.

After I put the box away in Ethan's room, I needed to go to the grocery store for a few things.  While I was there I saw several friends and told them how well the pregnancy was going.  On the way home I noticed I was pretty exhausted and had some pain in my abdomen so I called Landon and asked him to get dinner ready so I could rest when I got home.

I put my feet up in the recliner and rested for a while.  When he said we were ready to eat dinner, I stood from my chair to go to the table and felt a rush of water.  I quietly walked into the bedroom and knew immediately that this was not normal.  I told Landon that I thought something wasn't right and called the nurse on duty at our local hospital.  When I told her my symptoms she told me to come immediately to the hospital.

The fear that swept through us was indescribable at that moment.  We dropped off Trent at my brother's house and went to the hospital.  By this time I had so much water running down my legs that my shoes were squishing.  

We were immediately checked in and as soon as the nurses saw my condition, our OB was called and we could sense urgency in their voices.  They tested the fluid and it was amniotic fluid.  My water had broken at only 27 weeks.  I had preterm prerupture of membranes (PPROM).  

In the meantime I had called my parents who were eating dinner at a restaurant about 35 miles away.  From the moment I told my mom that something was wrong until they walked into that hospital room, it was probably only 20 minutes.  

After the doctor examined me they explained that I was grossly ruptured and needed to be at a level III trauma center.  Living two hours away from any facility like that, they decided it was best that I was life-flighted to Topeka, where my high-risk doctor was located.  We texted and called family and friends as fast as we could to spread the word and ask for prayer.  In that moment we knew this would be life changing for us in so many ways.  Some of those changes played out in those minutes and some have yet to come.

I received a steroid injection before we left that would help with Ethan's lungs in the case that he would deliver that night.  That was the first moment that I realized the seriousness of what was happening….our baby could come much too early.  The life-flight crew arrived and led me through step-by-step how everything would work.  I was put into an ambulance and driven to the small airport just outside of town where a twin engine airplane was waiting to take me to Topeka.  Landon had left the hospital to get his bag packed, stop to tell Trent what was going on, reassure him of our love, and drive to Topeka to meet me.  

As we lifted off of that runway I stared out the window, crying, and wondering when would be the next time I would see my home, see my son, and what in the world was happening with my baby.  I prayed harder than I've ever prayed before in my life.  It was almost physically consuming, the connection I had with God in that little airplane as we flew through storms to the hospital.

We arrived in Topeka where my sister-in-law met me and stayed with me until Landon arrived.  They put me in triage and immediately began a series of blood tests, question after question, and a lot of waiting.  When the doctor came in he told me that I would likely deliver the baby within 24 hours.  

We were admitted to the hospital and Landon stayed with me in the room.  I could still feel Ethan kicking.  His heartbeat was strong on the monitors.  

The first full night we were there, a neonatologist from the NICU came to see us.  She sat down and in blunt terms began telling us of survival rates, premature delivery complications, solutions to complications post-delivery, and we were ushered into a world that was far, far from where we were just the day before.

For 8 days I laid in that hospital room in the same condition.  Aside from the agonizing pain from being away from Landon and Trent every day, nothing changed.  But on the morning of August 20th, I woke up at about 4 a.m. and knew something was different.  I'd been losing fluid all week and we knew there was no more surrounding the baby, but that morning he wasn't moving.  They hooked me up to a monitor and checked for activity but he was just worn out.  I knew it, the nurses knew it, and there was no turning back.  

At 4 p.m., the doctor came in to my room to prepare me for a c-section.  My parents held our hands tight before they took me to the operating room and prayed for us.  This was the first experience in my life where I truly felt the power of prayer.  I knew that the God that we have served for so long was right there with us.  I also knew that this would open doors for us to use this opportunity to share our testimony.

With Landon sitting at my head, Ethan was delivered at 4:59 p.m.  He cried when they pulled him out, which was an incredible relief to us.  Though he was quickly whisked away by a NICU team, I was able to see him for a few moments.  After the c-section was complete, they wheeled my entire bed into the NICU to see my baby.  He looked so incredibly tiny and frail.  He weighed only 2 pounds, 6 ounces, but he was all there….one beautiful little baby miracle.

In the days that followed, it seemed as if we had been drugged.  We learned new terminology pertaining to the NICU.  We touched Ethan's paper-thin skin through the doors of an isolette.  And we prepared to leave him there as we had to return home after discharge in order to gather our thoughts and begin making the trips back and forth to the NICU.  

The day we were discharged, Landon and I went to the NICU to visit Ethan first thing in the morning.  I cried so hard that there were a few moments I couldn't even put one foot in front of the other.  I felt like I had done this.  I wanted to protect my baby boy and he was no longer in my protective caccoon.  

Upon returning the second time that morning, the nurse told us that one of us could hold him.  It had been four days and we had yet to put our arms around him.  Holding a preemie requires a few nurses, lots of cord moving, piles of pillows, and coordination.  I watched as they did their jobs to get him ready to be laid in my arms and still was overwhelmed with a sense of "this is not how this should be happening."

But in those few minutes that I was able to hold his tiny little body against mine, my heart was again softened.  I knew that all babies, no matter how far along in gestation, are a gift.  They deserve to breathe, cry, and live.  It was my responsibility to be an advocate for my baby.  And now it is my responsibility to advocate for other babies who are born too soon.

Over the next two months we traveled the 2 1/2 hour drive from our home in Independence to Topeka just about every other day.  I made the trip every time.  Landon would come on the weekends, and Trent would come a little less often.  We juggled schedules, used video chat to see each other, stayed in the Ronald McDonald house down the street, and found our new home in the NICU. 

Ethan was on a ventilator for one month before he was able to be weaned off.  His brain and heart ultrasounds were returned with excellent results.  He was fed through a feeding tube and stayed in an isolette for about 1 1/2 months.  We only had one day where we encountered a setback when Ethan got "loops" in his digestive track.  They had to stop feedings for 24 hours until those loops went away.

Our families were so kind to come visit us, call every day, and offer their full support.  We needed it.  Trent found refuge with grandparents, aunts and uncles, and friends while we were gone so much.  He was five years old, just beginning kindergarten, going through a growth spurt, and lost his first tooth, all within a month.  We knew we had a strong little preemie, but that five year old was a pillar of strength for all of us.

The week before October 15h, Ethan had one major "episode" where he stopped breathing while he was eating.  This was "normal" for preemies, but nothing can prepare a mother who is feeding her baby to look down and see him go limp in her arms.  No matter how many times you've been there when it happened in the NICU and no matter how much you know to help the baby begin breathing again, you don't get used to it.  But that was his last episode.  We knew that if he went one week without an episode and continued eating all of his bottles, we were on track to bring him home.

The day before October 15th, we arrived at the hospital with car seat in hand.  We had to take some classes to prepare us to bring him home.  I can't tell you most of the things we learned in those classes because we were in a state of euphoria at the thought of walking out of there one last time with Ethan in tow.

Aside from a mountain of paperwork to discharge Ethan, that morning was uneventful and seemed to drag on forever.  But we were finally allowed to place his tiny body into the car seat, get a few pictures, and leave.  We drove home so carefully and went immediately to the school to pick up Trent.  

We arrived home to find a banner on the house welcoming his arrival and he easily fell into our routine.  He got used to the loudness of our voices, the temperature of our rooms, the smells, and the comforting arms that were always surrounding him.

Ethan has not had one setback since we brought him home.  Even though we have to account for his "adjusted" age and realize he doesn't reach most baby milestones until three months after the normal time, he is a perfect, healthy, "normal" baby to us.

We are lucky.  Many people do not share the same experiences.  Some 28 weekers thrive just like Ethan.  Others have to undergo surgery after surgery, month upon month in the NICU, and will always struggle with problems associated with being a preemie.  There is nothing we could have done to prevent this.  There is nothing we could have done to have changed the outcome.  Every baby born too soon is different, has different problems, and different outcomes.  But all babies, whether they are born at 28 weeks or 40 weeks, share one common bond: they are truly little miracles from God.  

My unfinished testimony

It was last summer that we sat in our Sunday School classroom and discussed the life of Job.  The hardships and trials he endured…the faith that remained so strong.  We discussed the different afflictions that might face us in present day.  I remember Landon and I remarking to each other how fortunate we were that so far in life our trials were limited in number.  One person spoke up and said, "I hesitate to even bring this up, but the worst trial I can think of is something happening to our kids."  There was an audible shudder in the room.  

A few months later I found myself in the self-help section of a Christian bookstore.  My eyes landed on a book called "Holding on to Hope" by Nancy Guthrie.  It was a journey through suffering to the heart of God, using the life of Job as the example through out the entire book.  How had our lives changed so much in a short time that a once seemingly distant Job now had uttered some of the very words that we were feeling.

When my water broke on August 11, 2010, only 27 weeks into my pregnancy, it seemed as if the world stopped spinning.  Yet it also seemed as if it were spinning out of control.  The trauma of rushing to the hospital, the fear on the doctors faces, the panicked sounds from our family on the phone…those experiences were enough to stop a person in their tracks.  But we were only beginning.

As the little Cessna airplane lifted into the stormy sky to take me to Topeka, a song popped into my head.  It was a praise and worship song I hadn't heard in years and yet there it was.  

"If you catch hell, don't hold it.  If you're going through hell, don't stop…..I'm goin' through, I'm goin' through, goin' through, goin' through, goin' through…don't stop!"

We faced heartache and fear that I'm pretty sure gave us a glimpse of the agony that is truly found in hell.  And as I watched the lights of Independence disappear through the little airplane window, I decided right there, we weren't going to stop.  In fact, we were going to charge ahead and come out more vibrant on the other side of this situation, whatever may come.  

After spending 8 days on bed rest, being away from each other by many miles, and delivering our precious baby boy, who only weighed just over 2 pounds, we spent the next 2 months in an alternate universe.  I spent many hours next to Ethan's isolate crying and wondering how in the world we would ever get through the pain.

But we held tight to the Christian faith and loving God that we believe in.  He provided beyond measure in those difficult moments.  We kept the fruits of the spirit rolling around in our minds and when adversity came knocking, peace would overcome our hearts.  When a nurse walked in without a smile, kindness was extended.  When we wanted answers to our questions right at that moment, patience took over.  

Now that's not to say we didn't have our own thoughts of "why us, God?" and "why would He allow our little baby to struggle?"  But as soon as the first of those thoughts came to mind, it quickly turned to, "what is the purpose, God? Show us how we can glorify you through this."  We are confident that He has an incredible purpose for us to have gone through this experience and we are excited to see it playing out in our lives now and what may come in the future.

BOLDNESS

For years, boldness has been a huge downfall for me.  I believe that Jesus is God's Son and He died on the cross for our sins.  I also believe that the only way to Heaven is through Him.

So why have I not been bold enough to offer my heart to friends and family who need Jesus?  Fear…fear of not knowing how they'll react, fear of rejection, fear of looking stupid, fear of not knowing what to say.  I can't explain why but the fear is going away.  I have a story to share and when the opportunity arises, I am going to share it.

LIFE

For me, Ethan's birth changed my heart.  I saw life hang in the balance.  We heard terms like "survival rate" and "viability" and knew that our baby would cling to every breath when he was born.  My ideals on abortion were completely changed.  Previously I would say that my stance would have been "pro-choice" which does not mean "pro-abortion" but that women should choose what is going on with their own bodies.  The thought of politicians in suits making those decisions for women was appalling.  But even more appalling is that babies born at the same gestational age as Ethan are still allowed to be aborted.  

Ethan wasn't a fetus at 28 weeks.  He was our baby, our little boy.  His name was already on the wall in his nursery.  He kicked and moved when I vacuumed the house.  He cried and breathed on his own the moment they pulled him from my womb.  

I was Ethan's chance of survival.  I was his advocate, his voice.  So my heart softened and now it makes me weak in the knees to know that a baby wouldn't be given a chance at life. 

PRAYER

Another growing point for us was in the power of prayer.  In our church we have a prayer chain.  I hate to admit it but to that point, I would think about the people on the prayer list, lump them into a generalized prayer, and call it good.  But when we began texting and calling our family and friends to tell them to pray before we even left Independence, I wanted them to earnestly pray.  I mean get-on-your-knees-and-call-out-to-God kind of prayer.  We prayed through our tears, we prayed while we laid hands on Ethan, we prayed for healing, we prayed for safety, and just about anything else that you could pray for.

There were a few times that we had some very specific needs in that hospital for Ethan.  I would share the need on Facebook and with our church, and I can attest that the prayers were answered, not in weeks or days, but within minutes.  

There were also times when I had a hard time praying.  Exhausted doesn't begin to describe our bodies and minds during those months and sometimes it was easier to cry than it was to pray.  But one friend and church member sent me a text message during one such desperate moment and said, "Just know that the body of Christ is lifting you to a Heavenly place right now."  Wow…what a wonderful thought.  When we, as Christians, find ourselves struggling to come into the presence of Jesus, our brothers and sisters will lift us up to Him.  

Now when I get the prayer chain or hear a prayer request, it is not a fleeting thought.  It is essential to help bear the burden of what others are going through and lift them to God.

WHAT'S NEXT….

After that day in Sunday School, Landon and I talked about our testimony and how it seemed we didn't have much to share.  We were both raised in Christian homes by Christian parents, had gone to church all our lives, been involved in praise and worship, and our suffering in life was, for the most part, bearable.  But now we have a story.  We can tell how full of joy our hearts were, even in the darkest moments.  How much deeper our love for each other, our families, and our God has become after our lives had been turned upside down.  

And our testimony isn't done.  We long to see the next chapter and watch as God unveils His amazing plan for us.  Pain and suffering are not behind us.  Life happens and we know that tears will flow again.  But it is our prayer that our lives will continue to reflect Christ and we will continue to grow in His likeness, no matter what life may bring.

Walking for Babies

One year ago this month (March), we found out we were pregnant.  Our lives at that point were simple, our thoughts on pregnancy were innocent, and our hearts were being prepared for something much bigger than we ever expected.

Five months later we were shocked when our life story took a change and baby Ethan was born at just 28 weeks.  He weighed 2 pounds, 6 ounces.

From the moment we entered the hospital, services were provided to us.  We were immediately assigned a social worker who kept us on track with all of the emotional, financial, and physical help we needed.

We took a tour of the new, state-of-the-art NICU a few days before Ethan was born.

Jenny was given steroid shots to help Ethan's lungs develop while she was on bedrest.

Materials were provided to our family that helped us understand what was happening, the new terminology we were learning, how to cope with the combination of heartache and joy, and even how our older son and extended family would handle the entire situation.

Immediately after delivery Ethan was given numerous tests that told us of the possibility of brain bleeds and heart problems, which there were none.

He was given surfactant to open the air sacks in his lungs.

The list could go on forever, explaining the different ways we have been impacted by March of Dimes, but each of these things would not have been possible without the research and money donated by March of Dimes.

Our family has the same goal as March of Dimes.  One day we would like to see a world where parents don't have to learn what bradychardia is, know what a pik line is and why it is so important, have to wait for days before they are able to hold their babies, and where the birth of all babies is pure joy, without fear, without sadness, without heartache.  Before we had Ethan, we did not know this kind of pain could exist in such a joyful moment.

So please help us along the way by donating to our March for Babies team.  This year our family has been selected as the ambassador family for the Bartlesville, Oklahoma walk.  Ethan's story and photo will be shared with other teams, businesses, and events, in order to raise awareness about premature births and the research that is still ongoing to help prevent it.

You can go to our team page at: www.marchforbabies.org/team/diveleys and make a donation there.

Donations may be made to the entire team or an individual walker.  March of Dimes uses 77¢ of every dollar raised to support research and programs that help moms have full-term pregnancies and babies begin healthy lives.  These dollars help families just like ours.

Any amount is appreciated.  If you have any other questions, please contact us at diveleys@taylornews.org.

A quiet Christmas tune brought comfort in a different time of year

This past August we got an early Christmas miracle with the premature birth of our second baby.  Ethan arrived on a hot August afternoon, weighing just over two pounds, needing assistance to breathe, and holding on to every ounce of life for the next two months in the neonatal intensive care unit until we were finally able to bring him home.

During that time I spent many hours in his room, holding his hand through the little plastic house, talking softly and telling him stories, and finding gentle ways to share my love in those four walls of a hospital.  But it occurred to me one day that I couldn't think of any lullabies to sing to him.  None of the sweet songs my mother sang to me would come into mind, and even the songs from church we sing on a weekly basis just weren't there.  

But there was one special song that ran through my mind over and over.  I would sing it to him, hum it through my tears, and think about each and every word as they flowed.

Silent night, holy night, all is calm, all is bright….

This song is usually reserved for the cold weather months of December when we celebrate the birth of Jesus, but it brought me so much comfort during those warmer dog days of summer.

Holy infant so tender and mild….

Our little Ethan was not only tender; he was fragile.  His skin was so thin at birth, you could see through it.  His lungs so premature, he used a ventilator for a month.  His arms and legs were no bigger than my index finger.  His entire hand fit into Landon's wedding ring.

And I was scared for my baby.  I thought about Mary, the mother of Jesus, so much during that time.  Though she'd been visited by the angel Gabriel who told her not to be afraid, surely she must have had her moments when tears poured from her eyes, her stomach turned in knots, and the fear went all the way to her bones.  

Son of God, Love's pure light...

The youngest years of Jesus life are largely unaccounted for in the Bible.  Wouldn't it have been incredible to see those years through Mary's eyes?  She saw his first smile. She listened as he cooed.  He held her finger as he took his first steps.  She celebrated all of his baby milestones just as any mother does.  

God gives us babies to get a glimpse of His incredible miracle.  In our family, we've had two miracles with the births of our sons.  Every baby is a special miracle.  But we literally watched as Ethan developed inside that his little plastic house for those eight weeks, just as he would have in the womb.  What an incredible experience to view that miraculous transformation before our eyes.

Sleep in heavenly peace…..

But the greatest miracle of all came that night, over 2,000 years ago, in Bethlehem when a baby's cry pierced the night air, prophecy was fulfilled, and Jesus was born to save us all.  Because of that truly incredible miracle so long ago, I could rock my baby in that NICU without fear, without despair, and experience love's pure light.

Jesus, Lord at thy birth; Jesus, Lord at thy birth.

(For those who read my column in the Taylor Newspapers, this will be a repeat from the Dec. 22 edition!)

Due dates and donations

Yesterday, Nov. 11, was special for me.  I don't know whether to say it was exciting, heart-wrenching, sad, or happy, but maybe a mixture of those emotions.  You see, yesterday was my due date.

It's hard to believe that to deliver a full-term baby I would just now be holding Ethan for the first time.  It seems like it was ages ago that my water broke and we faced some of the most difficult days of our lives.  And from the moment that the little life-flight airplane lifted off the tarmac, Nov. 11 has been the goal.  Everything has been aiming toward that date.

There have been several days that were our own milestones….the day I was supposed to have a baby shower, the day I packed away all of my maternity clothes, the day I had originally planned to have my c-section (Ethan never would have been a November baby due to the c-section, but Nov. 11 was 40 weeks), so it's nice to see this due date pass us.  It represents a finality of "preemie-ness," to use my own made up word.  Sure he'll have a doctors appointment here and there that will be due to his early birth, but for the most part from here on out we're looking at typical growth, development, and maturity.  

So yesterday was kind of an odd day, emotionally.  To celebrate the day, I bought a little chocolate cake from the grocery store with birthday sprinkles all over it.  We each got a slice last night for an evening snack and celebrated our little miracle.  But as I went to bed, I couldn't help but be sad….sad for the heartache, sad for the pain our baby had to endure, sad for the stress.  I guess it was time, once again, to have a little pity party.

Then I got up with Ethan at 3 a.m. for a feeding.  I was exhausted and he was ready to party.  I changed his diaper, gave him a bottle, and placed him on my chest.  Even in the darkness I could see his big blue eyes peering up at me.  And I started thinking….

I thought about baby Travelle.  His mommy is on one of my preemie mommy boards.  He was actually born at a later gestation than Ethan but he has had so many problems.  He's spent months in the NICU and still has many times when his life is at risk.  He's old enough now to look around, recognize his mama, and give her a look to let her know that he's having a bad day.  But she worries because the doctors give her looks telling her that the day may never come that she walks about the hospital with baby Travelle in his carrier.

I thought about one of the mothers in Trent's class, whom I called to talk about a class party and ended up telling her about Ethan.  She then told me that she too had a preemie, but he didn't make it more than a few hours.

I thought about the message that was left on our phone one day while we were in Topeka by one of Landon's superiors.  You could hear the lump in his throat as he told of his twin boys who were born about the same weight as Ethan, how he understood the emotions we were experiencing, and how only one of their babies came home.

I thought of all of the pictures on my preemie mommy boards online and how the soft lilly-white skin, the fuzzy heads, and chubby cheeks of some of those babies can be overshadowed by the glaring tube that still snakes its way from nose to tummy, even in babies who are a year old.  

And I remembered:  even though Nov. 11 was my due date and Ethan arrived on Aug. 20, it all happened for a a special reason.  We have a special mission in our lives now that was totally unexpected.  Our hearts break for families who we once held at arms length because of our ignorance about premature babies.  Ethan and Trent will both grow up knowing how special these tiny humans are and will hopefully have a desire to help make their lives better.

November is Prematurity Awareness Month.  Prematurity doesn't discriminate.  It doesn't care what color you are, your religion, your political preference, or how much money you make. You can be super healthy or not, young or old...it happens to us all.  

The March of Dimes is a non-profit group developed to do research on premature births and help make their early entrance into this world a little smoother.  I really don't know if a "cure" to premature births will ever be found because there are so many causes.  But the moment we walked into the NICU, the March of Dimes provided us with support materials to help us through that time.

Ronald McDonald House is a special charity to us.  Two weeks before my water broke, I remember very specifically being at my parents house watching television with Trent when a McDonald's commercial came on.  At the end they explained that the little hands image on every Happy Meal shows that a donation is made to RMH.  Trent asked me all about the RMH, thinking that is where Ronald McDonald lived.  I gave him the short version and told him that it is just for families of very sick babies.  We would never have to worry about it.

Two weeks later I felt like I was in the twilight zone when a social worker came in to my hospital room, sat next to me, and told how our family would benefit from the Ronald McDonald House located just down the street.  Even in that moment, I still thought, "That's for other people.  My family doesn't need that!"

Now I look back on about 20 nights spent in that big, beautiful home located two blocks from the hospital.  I even had other options sometimes to stay at different places but the RMH was a quiet refuge for a mom and family who bounced around hospital walls with dazed looks, ate at a different restaurant every night, and wanted some peace and quiet to calm our spirits. 

It wasn't until all of this happened that I began to understand giving to charities.  If you have a desire to give to either one of these charities, whether it's a donation  you want to make for the holidays or just another time during the year, here are a few ways:

• March of Dimes takes monetary donations through their website.  You can donate any amount and dedicate it to someone.  Their website also has videos and information about their charity and how the money is used.

The March of Dimes website is:  www.marchofdimes.com

• Ronald McDonald House accepts monetary donations.  They also appreciate physical donations and volunteer work.  Right now on their website there is a section called "30 Ways in 30 Days."  It explains the various ways to donate your time to any chapter.  There are chapters as close as Joplin, Tulsa, Wichita, Topeka, and Kansas City.  You can either go to them to help or search through their various suggestions to find a way that you can help.  We saw donated furniture, toys, toiletries, food, and more at the RMH of Topeka.  Just keep them in mind the next time you have a box of your kids toys that are heading to the thrift store and consider donating them to a RMH.

We will continue to stay in close contact with the house in Topeka.  If you have donations to make, you're welcome to give them to us and they'll get to the right place.  The Ronald McDonald House website is:  www.rmhc.org

Since Ethan was ready to party this morning at 3 a.m., I couldn't help but party with him after I remembered just how blessed we are to have his little warm body in our home and in our lives, no matter what date he arrived.  So he and I snuck to the kitchen, cut another piece of cake, and celebrated life.