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.  

Ethan's Homecoming Video

Ethan came home!

There aren't many fancy words or prose that can be used to share our good news.  It's pretty simple and yet one of the most joyous occasions of our lives.

Ethan came home!

We were thrilled last Monday to talk to our doctor and find out that the countdown was on.  She told us that if Ethan continued to eat all of his food from a bottle and didn't have any breathing problems, he was on track to be dismissed on Friday, Oct. 15.  She also warned us that many times one little problem can set back dismissal by a week, and that those little problems are fairly common.  So we waited each day, each feeding, each phone call to find out if he was still progressing with success, and he was.  

So Thursday afternoon Landon and I loaded up our van with all of the essential baby stuff, including the car seat, blankets, bottles, baby bag, clothes, and our own suitcases and headed north for one last time.  We completed several required classes and went out for dinner to celebrate.  That Friday morning when we arrived at the NICU, everybody knew what was about to happen because of the ear-to-ear grins we couldn't keep off our faces.  Ethan got a quick bath, was changed into clothes of his own, and was finally removed from the monitors and cords that held him in that NICU.

The staff came out to wish us well and tell Ethan goodbye, after all he had been a special guest for over 8 weeks!  And we left the hospital to drive home with our baby boy in tow.  

Now we feel complete.  Now our family of four turns of the TV, spreads a blanket on the floor, and stares at this little bundle of wonderment.  Now we play soft music and rock him to sleep.  And now, even with the middle of the night feedings, we all sleep.  

It's hard to explain our state of mind since Aug. 11 when I was rushed to the Topeka hospital.  We've had our highs and lows in life before.  This experience had those highs and lows, but it was almost as if we were in an alternate universe for that period of time.  And when we drove home on Friday, it felt like we were driving back into a normal life…comfort and stability.

To be sure, the first thing I did was unpack our luggage after numerous nights staying at different places in Topeka.  I emptied my cosmetics into the drawer in our bathroom, threw away the remnants of the travel soaps, washed every stitch of clothing in hot water, sprayed down the suitcases with Lysol, and tucked it all away to be used for a fun vacation someday in the future.

But for now we're leaving the suitcases in the closet and staying home.  For the time being, we'd rather lay on the floor, talk softly, and enjoy life as a family of four.  

Preparing for a homecoming

It's like the night before the biggest, dream vacation of your life.  You prepare all your clothes, pack the bags, double check tickets, count pairs of underwear, fill the cosmetics, and make sure everything is just where you need it to head out the door to your exciting destination the next day.  Then you lay in bed and worry about the things you may have forgotten, whether or not you'll make the plane on time, if the clothes you chose are the right ones, or the different people you'll encounter on your journey.  

It's like that, but so much bigger.  We're not preparing for a vacation.  We're preparing to bring home our baby Ethan!

Two months ago I was planning a fall baby.  I'd hoped to schedule his delivery sometime around the last week in October when Landon and Trent are both out of school for a few days.  But on a hot August day, 92 days before I was due, my water broke much too soon and a little over a week later we had a 2 pound, 6 ounce baby boy named Ethan.

Today, 55 days later, he has gained three more pounds, grown over two inches in length, learned to breathe without help from machines, digested food, taken bottles, and won the hearts of so many who have prayed for him, cried for him, hugged his family, shared kind words, and held him close.  

And we prepare to bring him home.

It's still a bit of a mystery exactly what day we'll bring him home.  There is a criteria he has to meet in order to go home that includes maintaining body temperature, sleeping in a crib, taking full bottles, breathing on his own, and several other rules.  He's accomplished most of these and the last few are close.

So we know we're close too.  We're close to choosing the perfect outfit for the ride home.  Close to packing his tiny little body into a car seat and gingerly taking curves on the highway to get home.  Close to showing him the nursery, his brother's room, our living room, and his new home.  Close to 3 a.m. feedings that we haven't been able to participate in thus far, baths with soft wash cloths and yummy smelling baby soap, snuggling on the couch with our little boys as we watch a football game, and watching the simple yet miraculous act of him inhaling and exhaling that sweet baby air.  

It's similar to that dream vacation, but oh, so much bigger!.  We've packed the bags, picked out the clothes, filled out the paperwork, and made sure everything is lined out just as it should be.  But our journey isn't a quick, one week cruise or a moment on a sandy beach.  Instead it's a lifelong journey that will surely have some challenges, yet  it will be overflowing with love and laughter.  Continue the journey with us, dear friends, as we continue to share our story coming to life.  

Suck, swallow, breathe...

This afternoon I gave Ethan a bath in his hospital room, rubbed him down with lotion, wrapped him in a warm blanket, and sat down to attempt to bottle feed him, which is a task he hasn't quite mastered.  Preemies aren't born with the "suck, swallow, breathe" reflex coordinated.  They can suck, swallow, and breathe, but not all at once.  

After a minute or two of trying him with the bottle, his body went limp, the color out of his face, milk poured out of his mouth, and alarms started sounding to alert the nurses to come help.  We repeated this scene about three times in 10 minutes.  It's "perfectly normal" for preemies to experience these apnea and bradycardia attacks, but that still doesn't keep this mama from feeling scared, sad, and helpless in those moments.

But those trained, skilled nurses came to his rescue in such a calm, gentle manner.  They were reassuring and tender in their approach, and now an hour later he is breathing steadily, has a full belly (through the feeding tube), and is sound asleep.

Surely God looks down at us sometimes and wonders when we're going to get the "suck, swallow, breathe" reflex.  He feeds us the best quality, nutrient rich, life saving formula that is filled with love, joy, peace, and all of the other good stuff.  Yet we choke and sputter on it, sometimes even forgetting to breathe when He is offering us food.  

Our immature hearts must grow and develop in order to take what He gives us, allowing us to become the men and women of God that He created us to be.

Someday soon our little baby is going home with us and on that day he'll be eating from a bottle like a champ.  And at some point he'll move on to regular milk, baby foods, and eventually join us at the dinner table with our own home cooked meals. 

We've had baby foods, milk, and solids, but there are moments in this season of life where we must close our eyes, fully trust God, and remember to "suck, swallow, and breathe."