The stomp your feet and pound your fist pity party

We had our first care conference today.  It's exactly what it sounds like….those who care for your baby while in the NICU, along with the parents, gather around a conference table and discuss his current condition and future goals.  It was so encouraging to sit with the neonatologist, nurse practitioner, charge nurse, social worker, and discharge nurse, all telling us how well Ethan is doing and what a sweet baby we have.  

But it was also incredibly overwhelming.  We started at his head and talked all the way down to his tip-toes.  I got to the eyes and got a lump in my throat.  Around the chin, I shifted in my chair a few hundred times.  By the time we'd reached his lungs I was fully engulfed in tears.  

When you have a baby in the NICU, it feels like you've been transported to another planet.  Unfortunately we haven't been working with NASA for years and were not prepared for this trip.  And when we arrived on this planet, we found out we had to learn a new language and way of life in about 30 seconds.  

We've learned all about bilirubin counts, nasal cannulas, gavage feedings, Kangaroo care, bradycardia, CPAP, and preterm risks.  I hold my baby in my arms and as wonderful as that moment of bonding is, I also continually watch the monitor to make sure that he continues to breathe and his oxygen levels don't drop.  

Oxygen saturation…purple number…85, 93, 95, 87, 88, 94…..good boy.

Heart rate…green number…..151, 152, 149, 149, 155….keep it up, Ethan.

I kept thinking to myself in that conference room today, "I didn't want to know this.  This is the kind of stuff you see on commercials with some weepy Sarah McLachlan song in the background.  This isn't supposed to be a conversation with Landon and Jenny Diveley!"

When they told us how full-term babies receive their immunities, proteins, and iron in the last six weeks before birth, it broke my heart to know that Ethan now has to receive those from an outside source.  When they shared the risks of RSV to a preterm baby after they go home, it made me want to put a bubble around our house.  When they shared how safe the blood is that they use for transfusions (if Ethan would need one which is not likely at this point), I wondered if this experience will prompt us to help others in the future by donating blood, time, and money to those organizations who need these so bad.

It was in that conference room that I wanted to stamp my foot and say, "Why?  Why do we have to hear this?  Why do we have to face some of these issues?!?!"  I just wanted to have a full-blown pity party.

Then we returned to Ethan's room and I watched as Landon was able to hold our baby for the first time.  His massive but gentle hands cradling Ethan so carefully as not to break him, but so strong to let him know he'll protect him.   

All was well with the world again.  Peace was restored.  Our own heart rates calmed.  The pity party was over.  And Ethan is worth every fear, every tear, every moment of heartache, because we know that there is a promise at the end of the rainbow.  One day, very soon, we'll bring that promise home.

Ethan's first days video

Kangaroo Mama

My visit to the NICU to see Ethan yesterday was a first for us.  Ethan and I got to share some time bonding all by ourselves.  Most moms have alone time almost immediately, whether it be feeding time, when the hubby runs some errands, or maybe even just a little time in the hospital right after delivery.  But those babies who are whisked away to the NICU are under constant surveillance and watch by a wonderful team of doctors and nurses, so the baby bonding time is minimal at first.

So yesterday when I arrived, I was so pleased to hear the nurse offer to start kangaroo care, where they lay the baby on the mother's bare chest and wrap them both in a warm blanket.  We waited until mid-afternoon between his every-three-hour assessments and I was left alone in the quiet darkness of Ethan's room with his tiny little body pressed against mine.  The goal of kangaroo care is not only bonding, but also to help the baby maintain their own body temperature by using the mothers temperature.  

What an amazing experience it was to know that the blood running through my veins and the heat my body was providing was once again helping to keep my baby healthy.  Among the many emotions that run through my body at any given time, is the fact that I'm missing out on part of a pregnancy that I was really enjoying.  As a mother, it makes you feel like a failure to know that your body wouldn't support the baby as long as it needed to.  So sharing that warmth, feeling his heart beat against mine, once again feeling his feet kick against my stomach…it gave me a sense of being able to provide for my baby once again as I had for the previous 28 weeks.  

I can't wait to return many times before Ethan leaves the NICU to settle into the recliner, wrap that warm blanket around myself, and snuggle into a calming pattern with Ethan.  Because even though we understand the benefits of kangaroo care for baby Ethan, it's amazing at how it warms my heart too.

Anti-social with a purpose

The NICU at Stormont is something like a fortress, which is a good thing.  It is so safe and secure that I don't worry one second about Ethan's well-being in that facility.  

But the first thing they do to every visitor to the NICU is take their temperature.  Anybody with a temperature of 99.5 or over is not only kept out, but you have to be fever free for 24 hours before you can enter.  

So you can bet that the Diveley house has become super aware of germs and illness.  We are all stocking up on vitamins, washing our hands constantly, and keeping our distance from groups of people.  Landon and Trent will face a challenge as school starts next week, but we're making a concerted effort to keep things healthy.  It would be absolutely devastating to be unable to see our little Ethan, however we also don't want to cause him any harm by bringing in illness from the outside.

The reason I want to share this information with our friends and family is because you know that we are normally social butterflies.  We enjoy our time at church, inviting friends to our home, going out to eat, etc…  But until Ethan returns home, you may not see as much of us.  It's not because we don't want to see friends and family, but it's simply because we know that so many people care for us and will offer hugs and different forms of support that we're just trying to steer clear of right now.  

So be patient with us as some of our old ways may not be the same right now.  As I've mentioned before, we're planning a heck of a party when Ethan comes home.  We'll return to our normal social ives and this time we'll add the fourth player to our team.  

Ready for some tummy time

We knew this week would be tough as we had to put several days between our time in Topeka in order for me to heal from the c-section.  Most of the time we do fine, but every once in a while the urge to drive north is almost physically overwhelming!  Thank goodness for the 24 hour phone access to his nurse and doctors, as we call and get updates several times a day.  

Ethan has been able to have some "tummy time" which we haven't been able to see, but we can't wait to see his tiny diapered bottom sticking up in the air!  He's getting closer to kicking the jaundice, which will be great to see him without that light and mask on his face.  He does fine breathing room air, but sometimes he simply forgets to breathe!  With a little more time, he'll be able to conquer that as well.  And we're hoping our genetics will kick in and he'll start packing on the weight.  

The feeling of being torn between the loves of your life is indescribable.  We want to be in Topeka 24 hours a day, but at the same time our presence there doesn't accomplish much right now.  As he grows and needs more maternal stimulation, we'll be there more, but for now little Trent needs us as he prepares for a big milestone in his own life….the first day of kindergarten.  

This weekend we'll begin the trips back and forth to Topeka about every 2-3 days.  We're hoping the hectic schedules and travel will make the time pass quickly and soon enough, we'll bring our baby Ethan home to complete our little family.  

Holding a Miracle

As Ethan's nurse practitioner at the NICU was going over his status this morning, our minds were swimming with the deluge of information we have taken in.  There is so much to learn and absorb, but at the moments our minds are still somewhat numb with everything going on.  When she finished going over his tests and such he would do today, she asked if we had any other questions.  We'd been under the impression that he would have to come off the CPAP machine before we could hold him, so I just repeated that to her and asked if that was for sure the case.  She looked at me and said, "No, you can hold him today!  Do you want to?"  

I was so shocked and filled with emotion, I couldn't even answer except to nod through my sobs.  They called in another nurse to help move him, sat me in a chair, and placed our little Ethan in my arms.  

Holding your baby for the first time is an incredible experience for anyone, but after only touching him through the sterile walls of an incubator, I can't begin to describe what his little body against my chest felt like.  He was crying as they handed him to me because he really doesn't like to be disturbed too much, but there was no doubt that as he felt my warmth against his, he stopped crying and reached his little arm out of the blanket towards me.

Landon recorded the whole event and we'll be sure to share it with you.  He can only stay out for about 15 minutes in order to keep his body temperature, but it was a stunning 15 minutes…the kind of minutes that you wish you could repeat over and over again.  

Today he was able to have his belly button IV's removed, he began his feedings through the feeding tube (only 1 cc of formula per six hours), and had an ultrasound of his head that returned with a completely normal result.  Those are little milestones, set in the right direction.  We have a lot of little milestones to go before he'll be able to come home, but hearing all of those good things today and holding that tiny, sweet bundle in my arms made our departure from the hospital even easier.  

Yes, it was unbelievably difficult to leave Ethan at a big hospital in Topeka while we returned to Independence.  We cried uncontrollably before we left, then laid our hands on him and prayed a prayer that parents don't want to have to speak from their lips.  Then a peace that only God can give came over us and we knew that we are doing the right things, Ethan is right where he needs to be, and God is in control.  

When we returned to Independence, I got to hold another miracle in my arms as Trent rushed in the door and ran right into my embrace.  These little boys have filled my heart and I know that it will grow each and every day.  It'll only be a matter of time before I get to sit in my own living room and hold these two miracles at the very same time.  

FAQ's

We've had so many people asking a lot of the same pertinent questions.  We thought we'd do a little FAQ on our blog so that you know what's going on!  We may update these as time goes on and the answers could change.

Love, Landon & Jenny

What happened?

Jenny had what is called Preterm Premature Rupture of Membranes (PPROM).  It is simply when the membrane around the baby ruptures early (the water breaks) and labor usually follows soon after.  We knew that there excess fluid around the baby though nobody knows what causes this for sure.  Jenny's water broke at 27 weeks.

What caused it and could it have been prevented?

We have no idea what caused it and no, it couldn't have been prevented.  There are certain risk factors that come along with PPROM, but Jenny did not show any of these.  We could beat ourselves up wondering if there is anything we could have done, but the doctors have assured us that this is spontaneous and can happen to anyone at any time.

Why did you deliver when you did?

When Jenny arrived in Topeka on the night of Aug. 11, the doctors were sure that we would deliver soon.  We defied the odds and made it longer than expected.  On Aug. 20, the baby was showing signs of tiring on the monitor, mainly through lack of movement.  After seeing the lack of movement and running a blood test, it was clear that keeping the baby in much longer would result in distress or infection.  The OB doctor and maternal fetal doctor decided together to go ahead and deliver by c-section.  Ethan Marx Diveley was born on Friday, Aug. 20 at 4:59 p.m., weighing 2 pounds, 6 ounces, and was 15 inches long.

Ethan has so many tubes and wires around him.  What do they do?

The wires, tubes, and machines are intimidating at first, but once you understand their purpose it is not so scary.  He has a pic line running from one hand that goes through his arm and directly into a major artery.  This is his lifeline for the doctors and nurses.  He'll only have this inserted one time.  He's currently on a CPAP machine that helps encourage the alveoli to open and forces air through his nose.  He has some jaundice right now which is treated with photo therapy, thus he has a mask that covers his eyes.  He also has a feeding tube that goes through his mouth and into his stomach.  As we progress, there may be more added or taken away, but they are simply there to help him.  Aside from these aides, he is simply a miniature version of a full-term baby.  He just needs help getting to that point of being "full term."

Right now we are able to touch him, help change his diaper, take his temperature, and even pick him up within the incubator.  Hopefully in a week or so we'll be able to hold him.  We'll also begin kangaroo care at some point soon (Google it for an explanation).  

Are you going to drive from Independence to Topeka every day?

Right now we simply don't know what the plan is for us in the next weeks and months ahead.  Landon and Trent will begin school on Sept. 1 and obviously we have regular things in life that will need to be continued.  Jenny will probably spend much of her time between the two towns, maybe 2-3 days in one place, then 2-3 days in the other.  These first two weeks may be a little different than any routine we fall into later, simply because school hasn't started.  We will utilize the Ronald McDonald House, hotels, family hospitality, and maybe have a couple other options to explore.  

When will Ethan come home?

Ethan will probably remain here at Stormont-Vail until a date approximate to his original due date, Nov. 11.  However, that can vary by weeks, depending on how he progresses.  There is no weight requirement or date requirement, but he has to meet certain criteria, such as maintaining normal body temperature on his own, completing feedings, and sleeping in a crib, that will take long enough to meet any weight or date requirement that would have needed to be met.  It is normal for preemie babies to make good progress and then have little setbacks.  

What can friends and family do?

Our friends and family have already done so much by offering prayers, thoughts, and words of encouragement through these first days.  Continuing those simple gifts is more than we can ask for.  

We do not need food.  Landon is as efficient in the kitchen as Jenny, so he is fine making his own meals when she is gone.  Plus, with our crazy schedules coming up, it is hard to know when we will even be home to eat a meal.

Everything we do right now will cost money.  Of course we have insurance that will take care of the bulk of our medical expenses.  But the travel, lodging, meals, etc…., will begin to stack up.  We aren't sure what to do with that information, but there you have it.

Many of you have offered your time and help with Trent.  It is very possible that we'll be utilizing you over the next weeks ahead.  Once Jenny is recovered and we begin to develop a schedule, you'll surely hear from us!

Do you want visitors to see Ethan?

Of course we love to have visitors.  We just ask that you plan ahead with us so that the time is spread out and we're for sure in Topeka.  There are only four other people that can visit Ethan without one of Landon or Jenny present.  Trent is able to visit Ethan with us, though no other children under the age of 16 can go into the NICU.  If you do visit the NICU with us, you will be required to register at the front desk and your temperature will be taken.  Anybody with a fever over 99.5 will not be allowed in the NICU.  We can decorate the door to his room (he has his own room) and several places in his room, so you're welcome to send hard or paper items.  Anything that isn't safe to place in his room will be taken home for his arrival there.

Won't it be hard to leave your baby there?

Of course.  We'll probably both float out of here on our own tears.  However, we have complete peace with the hospital staff and facility, which makes our time away much easier.  God is guiding the hands and minds of those people who will care for Ethan and that gives us ultimate peace.  We also know that Ethan won't remember any of this.  We'll share all sorts of stories with him as he grows up, but he won't remember the tough stuff.  
And we have our special little Trent at home, who is 5 years old, and who will remember all of this.  He needs us right now….we need him too.  So yes, we'll be torn at various times as where is best to spend our time, but our hearts and minds are at peace with Ethan's future and his current care.

What a difference a day makes

Last entry I shared what a difference one week makes.  Today you'll see how a day changes everything.

After going to my maternal fetal doc on Thursday, we were told there was no more amniotic fluid remaining.  It was expected though still tough to hear and difficult to watch on that fuzzy screen.  We toured the NICU which was informative and comforting, but it was also an emotional roller coaster for us.  The machines, tubes, staff, computers, and everything else that goes along with a NICU baby are overwhelming.

As we went to bed on Thursday night, I settled in, feeling Ethan kick and squirm with his regular routine.  But at 4 o'clock on Friday morning, I woke up and knew something felt different.  I hadn't felt Ethan move since going to sleep.  

The nurse came in mid-morning and hooked me up to the fetal monitor, which I'm usually on for 1 hour.  At the 1 hour mark she returned and I could see that alarming look of concern.  

We laid here for hours more, watching the monitor, checking for signs of activity.  He just seemed tired, like the "hide in Mommy's tummy" game was over and he was waving the white flag.  The doctor did several more checks before finally returning at 4 p.m. to say it was time to deliver our little Ethan.  

Things started moving pretty fast at that point, preparing me for c-section surgery, prayers with my parents, and of course, updating Facebook!  A few pokes, flips, stretches, and tears later, and we heard the sweetest sound in the entire world….the cries of Ethan Marx Diveley.

We cried, laughed, and listened for every voice in the room to give us an inkling of how he was doing.  The NICU team took him to the NICU, where he is now, doing a tremendous job at just being Ethan.  He has no alarming problems right now, though we know that over the next weeks we'll see the roller coaster effect of his health.  But at the moment he is just simply a miniature version of a full-term baby.  He cries, sucks on a pacifier, breathes on his own, kicks his legs out of the little pillow surrounding him, and grasps our finger when we put it in his little house.

The plan is that I'll be discharged on Monday, will return home to Independence to regroup, heal a little bit more, and attempt to make our short term and long term plans.  We will do a lot of traveling back and forth, probably a few days home, a few days here.  We're exploring our different boarding options right now.

I knew we would love our baby, but I just didn't know how I could love another child like I love my first.  Then I heard those quick little cries in the delivery room and knew my heart was forever changed….forever joyful, forever fearful, forever full.  When we reach inside his little plastic house and put our hands close to him, he instinctively grabs our fingers.  He quiets and calms at the sound of our voices.  It absolutely brings to a tangible focus, the incredible power of God.

One irony that just occurred to me….  I picked Ethan's baby bedding several weeks ago.  We discussed the different themes, colors, choices, etc…., until I couldn't stand to look at nursery bedding anymore.  Ultimately we chose a bedding set that has little vintage airplanes on it.  It wasn't one that I would have originally chosen as airplanes don't have too much significance to us, but the colors were cute and it was something different.  It just seems odd to pick a theme "out of the air" like that and yet Ethan's life was pretty much ushered in with an unexpected plane ride.  And I have a feeling Ethan is going to fight to be in the pilot seat for the rest of his life!

One Week - Happy Week 28!

One second can change your life.  It was one week ago at these very moments that those life-changing seconds were ticking off the clock.

Just as we were getting ready to settle down for some dinner, I stood up from my rocking chair only to realize immediately that my water broke at only 27 weeks into my pregnancy.  Even as I dialed the hospital to relay the symptoms to the nurse, I knew that something was drastically wrong.  As soon as she heard what I had to say, she told us to come immediately.

We scooped up our belongings, got in the van and took Trent to his Uncle Andy and Aunt Amy's house.  The ride to their house and then to the hospital was a blur, but I can remember holding Landon's hand so hard that it seemed I was willing the world to stop so I could get a handle of what was happening.  But as I took that first step out of the van at the hospital, I knew with each squishy step of my shoes that those steps would change our reality.

It was one week ago right now that my own doctor arrived in my room and looked at me with fear and concern on her face that you never want to see.  It was one week ago that my parents were eating dinner and got a call from me, telling them what had happened, and they dropped everything at the table to rush to my bedside.  It was one week ago that we sent texts and made phone calls to family and friends, asking for prayer, and we felt it physically overcome us as word was spread across the miles.

One simple week...seven days.

One week ago the decision was made to send us to a larger hospital in Topeka, via airplane.  And it was one week ago that I took my first ambulance ride, got in my first Cessna airplane, and had an Army refueling plane in a holding pattern just so we could land at Forbes Airforce Base in Topeka.  All this time, one week ago, Landon was packing bags and driving like crazy to be by my side.

One week ago my sister-in-law Paula met me at the hospital and helped me through those first few hours I spent in triage.  And it was one week ago that my husband walked in the door and I felt as though the world would tip back on it's axis once again with him there.

But it was also in those early morning hours, one week ago, that the prayers were being answered.  The water slowed, the blood pressure dropped, and the sure signs of early delivery faded away.  The doctors decided it was best to let nature take it's course and see what happened.

But you know....that was a week ago.  Baby Ethan is still in his God-given incubator, his heartbeat is strong, his mama is healthy, and he made it in there one more week.

So yes, one week ago it felt like our world came crashing down.  The events were surreal, the clock moved in a horizontal motion, and life seemed to stop.  But we're celebrating tonight because that was a week ago.  God is protecting our little baby boy.  We don't know how long He plans to keep Ethan in my tummy, but we know His timing is perfect.

And though a week ago seems like so much happened, we're looking forward to next week when we get to celebrate another milestone before Ethan's arrival.  Our weeks are filled with laughter, tears, joy, and pain right now, but we're going to have the biggest party ever when we're all home safe and sound.  And it just may last and entire week.


Stay with us as our story comes to life!  I'll post here and put the links on Facebook.  Thanks for your continued prayers and support!  Love, Landon & Jenny