After My Bath

A moment with mommy. 7/22/12

My first tub bath!

This video was shot a week or so ago.  Oliver received his very first tub bath.  He didn't seem to enjoy it as much as we thought, but it is, of course, a necessary evil.  The video is somewhat long, but the end is worth watching.  Oliver looks so cozy cuddled up in a warm towel.  Don't be mad at me for the naked online video son.  We love you.

Again...

I must have spoken too soon... Oliver is NPO once again (the doctors have held his feedings).  He is back on IV's and had his blood drawn for cultures because of a belly that was and continues to be quite discolored and large.  It feels like an overplayed re-enactment of some horrible scene I wish to never see again.  We hope this is just another minor setback on a staircase that continues to climb upward, but either way, it goes down in the books as a really tough night.  Whenever I see him stuck with a needle, whimpering and in pain, I bring up this picture on my computer...my son at peace.

32 Weeks

Oliver is 32 weeks gestation now (45 days old).  He weighs 1500 grams, which is equivalent to about 3 pounds 6 ounces.  Just another half pound and he will have doubled his birth weight.  Several developments have occurred over the last week that have led us to believe that Oliver is progress is steady and positive.

First of all, the oxygen expectations of young Oliver have changed.  While it was acceptable for his saturation levels to be as low as 85% just yesterday, the nurses now attempt to keep his levels above 90%.  Even with this quite drastic change in demand, Oliver has managed to make the move to the lowest possible CPAP level (level 3).  We are proud of his hard work.

Secondly, he has adjusted quite nicely to his new schedule of feedings every three hours.  What this inherently means is that he gets larger amounts of food at one feeding, which forces him to be able to hold more in his tummy.  With this change of a greater interval of time between feedings, he is also allotted extra time for digestion.  He appreciates this and most often digests all that he is given.

Finally, with his newly found maturity, Oliver's tolerance of human touch has heightened.  Mom and Dad are now allowed to massage his arms and legs for 15-30 minutes once each day.  During this activity, he usually falls into a deep and pleasurable sleep.

Oliver is growing each day in both body and spirit.  He is showing us his personality through little actions each day.  This child is a lover of calm, and a seeker of peace, just as his name implies.  Oliver, derived from the olive branch, serving as a symbol of peace in many cultures.  We love you son.

40 days worth of Progress

While we know that the roller coaster might eventually reach it's summit and plunge downward once again, Oliver is currently proceeding with current life on a steady incline.  Some might even call it progress.  A few days ago, he moved from level 3 (the most severe cases in the NICU) to level 2 (a step down from there).  This included leaving the small corner of the world where Oliver spent his first month of life.  For Mom and Dad, it was a blessed and humbling move.  We know that his situation has improved, and for this we are thankful.  On the other hand, he now lives in a room with babies that are not necessarily older, but most definitely larger than he.  The whirring and beeping sounds of machines have given way to more humanistic sounds and sights.  Screaming and crying are normal, and moms around us are breastfeeding and picking their children up at will.  Oliver is the only child in this room still on CPAP, but we are hoping he eventually might assimilate to this new style of life.

Even though he remains in the 10th percentile in size for babies of his gestation, Oliver has managed to find a way to gain some weight.  Last night, for the very first time, the young man broke the 3 pound mark.  This most likely shows that less of his energy is being spent on reflux and breathing, and he is channeling more of those valuable calories into fattening up and building a bit of muscle.

Another wonderful and recent accomplishment is Oliver's new love for a pacifier.  His mother usually lets him practice for the real thing in conjunction with his oral cares.  Occasionally he forgets to breathe while he is busy suckling the milk covered plastic, but for the most part, he enjoys the experience.  It is quite clear that his mother does as well.

Hiccups

Listen close...  even little preemies get the hiccups.

Our Present Life

The instant buzz and traffic of the nurses in the NICU indicates another visitor will soon be arriving through the nearby doors of the operating room.  Oliver is small and fragile, but he senses it just as quickly as we do.  Yellow smocks and white masks are in place, a bed is prepped for the temporary guest, and within minutes, the room becomes silent, as a child begins his first breaths of life just a few feet from where we sit.  Occasionally the newborn lets out a cry, and more often than not, Oliver responds with one of his own, somehow recognizing the urgency in the air.

The approaching minutes are met with a murmur of voices at bedside in conjunction with a scurry of bodies around, which usually only last a short while, until the young child becomes stable.  A brief amount of time passes before Dad makes his appearance in the NICU, sometimes alone or in most cases with grandparents.  They are all smiles, overjoyed at the sight of new life, and thrilled with the knowledge that all is well with their child.  The cameras come out, flashes go off, and excited voices penetrate the once silent space we call home.  This ceremonious routine comes to a close as quickly as it started, and once again the room is hushed, void of its transient disturbances.

Within the next hour the passing guest departs, and the three of us rest alone once again.  We remain relaxed and undisturbed in our customary stillness; all the while knowing it will be broken again at some unknown but imminent time.  This is a scene we have witnessed on over a dozen occasions in the last 48 hours.  Each occurrence sends me into a spiral of emotion and thought.  I perceive before my eyes a notion of normality; something that right now, I have trouble accepting exists. 

These moments serve as blunt reminders of a world that exists, and will continue to exist, outside the NICU.  This knowledge surrounds me and within minutes, I feel trapped.  Without care or concern, life zealously infiltrates my seemingly protected bubble, and then without haste, it disappears back to the hole it crawled out of.

What If

I can’t stop from asking myself the ever-present question, not really pertinent to here and now, but nevertheless always looming over me like a heavy raincloud…  “What if ?”  I toil with this mentally straining question each and every day I am here. 

Even though I am constantly working on “being present”, as my wife so perfectly puts it, with so much time spent at his bedside just sitting and watching Oliver sleep, it is difficult for me not to allow my thoughts to wander.  As I stare through the clear plastic sides of his protective isolet, this unfounded meandering of the mind often takes me to dark and indistinct places.  I shake myself out of a hostile trance, only to drift slowly in that direction again.  The mind, in all its faculty and brilliance, is a challenging mechanism to defeat.

Another Week Ahead

I finally have internet access again in the NICU.  It appears that I am the only one using WiFi in thia whole hospital since my complaint this morning was the first they had heard of the problem and the server has been down for at least 5 days.  Maybe my constant rambling will seem a bit more coherent to those that don't keep such sleepless hours since these writings won't be composed at the wee hours of the morning, especially after long exhausting days.

A quick update:  It has been determined that Oliver was suffering from anemia in a big way.  The blood he received did wonders for both his activity level and for his skin color.  Lethargic and pale are never good signs in the NICU.  Since the transfusion two days ago, he is off the IV fluid and is eating again.  He is almost back to ingesting the full volume of breast milk he was taking prior to his episode two days ago.  The only difference in the application is that instead of receiving his feedings via the trans-pyloric tube (into the intestines and continuously), he is now eating with the tube directly into his stomach.  This forces him to work harder to digest the food, so the milk is given to him in increments rather than continually.  This change should also help with the problem of reflux that has plagued him for several weeks.  His oxygen needs are roughly the same as they were a few days ago, and overall he is looking good.

At the conclusion of a long three days, I am giving myself permission to take a sigh of relief.  Contrary to my initial gut feeling a few days ago, we have not stepped back near as far as I first suspected.  Oliver is a tough little guy.  He is bound to teach Mom and Dad  a few more lessons yet.

The Stockdale Paradox

Today when my wife and I entered the NICU, our son appeared lethargic and pale.  Throughout the night the young child experienced a series of apnea spells and in addition, instant drops in heart rate.  Although he was still breathing in between these episodes, it was quite obvious that the last few hours had really taken their toll on him.  Three nurses and two doctors were at his bedside discussing the options and looking quite concerned.  The events that took place thereafter were more than any parent should ever endure, a stark reminder of the seriousness of the situation our family is currently in. 

After several hours of blood tests, x-rays, and more turmoil than he has experienced in quite a while, he was wrapped back up and his isolet was closed.  Oliver's feedings have since ceased.  His trans-pyloric tube was removed from his digestive tract and replaced with a much larger tube to remove the air from his stomach.  One IV line was placed in each of his little arms.  In his right he was given a blood transfusion and in his left, IV fluid.  During the entire series of procedures, he squirmed and cried out.  His heart rate skyrocketed and his body showed obvious signs of stress.  His mother remained calm, whispered to him, and held his hand the entire time.  I was in hell.

Several hours later and still in shock from the morning trauma, I finally stepped outside to get a breath of fresh air.  As I looked to the sky, I tried to recall a story a great leader once told me.  General James Stockdale, a famous Navy POW, was somehow able to survive 8 long years in a Vietnamese prison.  He was tortured over 20 times and spent quite a bit of those years in solitary confinement.  Later, when he was finally released, he was asked who the men were that didn't make it out of the prison camp alive.  His reply was simple.  "Easy, it was the optimists."  They believed they would be out by Christmas, then Easter, then Thanksgiving.  But each of these holidays came and went, and eventually, these once optimistic soldiers, died of a broken heart.

He then went on to speak these wise words, that for some reason, were able to give me piece of mind during the aftermath of one of the most terrible days of my life.

"You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be."

Tomorrow is another day.  Mom and Dad are with you son.

A Reminder

I met a friend today at a local watering hole for happy hour.  He was only in town a few days, and I hadn't seen him in quite some time.  We spent an hour and a half catching up on things, while we enjoyed a couple of drinks and a small bite to eat.  As we talked, I couldn't help but notice a young mother walk onto the patio with her newborn child in some sort of plastic baby carrier.  I could see the little girl was wide awake in her basket as the woman walked past me and proceeded to sit down at a table that was within my view.  During her meal, her interaction with her baby was minimal.  The child was awake, but mom was more focused on conversation and refreshments than being with her daughter.

I was immediately struck by a painful realization.  Here sat before me a woman, who was most likely a wonderful person as well as a committed and loving parent, but failed to comprehend the opportunity that lay in a rocker near her side.  She did not touch the child, hold the child, talk to the child, and for that matter, even look at the child.  I don't judge her.  I understand completely.  She was probably too engrossed in her activities to worry about her seemingly content baby for that hour or two.  There will be plenty of time for that later.

At least for her...

My life is different though.  All I get to do is sit and watch while he grows, yet my part in it is so very little.  This doesn't feel like what parenting should be about.  I reach out to touch his skin, but the fear of overstimulating him forces me to stop.  I want so much for him to know that it is me that is near him, that I am by his side, and that everything will be okay, yet I know that even talking to him isn't what's best for my son.  I wish so much to rip all the wires from his skin and tubes from his head and press him close to me, holding his body against my chest so he knows I am his father.  And I dream of the day when I get to see his beautiful face whenever I choose, not on some hourly schedule.  I am caught, trapped somewhere between logic and love.

What I saw today hurt deeply, a stark reminder that I don't have the freedom to be the father I wish to be.

Oliver's Book: Ch 5

I thought I would send out a fore-week report letting everyone know how things are going inside my little bunker.  That’s right, I have been holed up in this place for almost one month now, so I am not exactly green.  It is kind of rough, because I wood rather be outside enjoying the sounds of the little birdies.  That being said, I think things here in the NICU are about par for the course.  My three main activities are sleeping, eating, and breathing, but only one of these remains a real hazard.

I spend a solid amount of time wedged between blankets in the isolet, but from time to time I have been known to slice my way out and flop onto momma’s chest for a few hours.  She let’s me lay-up there for a while, but doesn’t pin me there for more than a couple hours at a time.  I am gaining weight, which is good; because that drives the amount of food the doctors are giving me.  They address my nutritional needs by fortifying momma’s milk with all kinds of good stuff.  The other day they added iron.  Breathing is my one true obstacle.  I am not sure why, but it could be my approach.  I can’t seem to Master the art of taking constant breaths, so the doctor’s keep swinging my CPAP back and forth between levels.  I started on level 6, made some progress to level 5, but just the other day, I had a backspin to level 6 again.  One of these days I will follow through.  

Although I still have quite a journey ahead of me, I feel as if I am a fairway through my stay here at the NICU.  I am going to keep aiming high and taking strokes in the right direction.  Maybe after a few more months, if I keep up the pace, I’ll be able to make the cut.  Thanks for sticking it out with me through all eighteen.  See you in the clubhouse.

Oral Care

Every four hours, little Oliver gets to taste his mother's milk.  The milk coats his lips, mouth, tongue and esophagus, providing important antibodies and basic nutritional value to the parts of his system that do not receive milk through the tube feedings.  We give him .2-.4 ml during each of these sessions.  When he is behaving, and not struggling so hard to breathe, he gets to have his oral care without his hat on.  This is one of his favorite times, as well as one of ours.  It is amazing to see his little face and mouth in action.

Diapers

Well Oliver son, I'm sure getting my fill of diapers.  It seems like every time I turn around, I am changing one of your diapers, wiping down your backside, or putting cream on your little bottom to help soothe your diaper rash.  Adding to the misery is the realization that your mother has conveniently figured out how to arrange her pumping schedule to coincide with your diaper changes.  Imagine that.  It was only a few months ago that your dad would have never dreamed he would be changing diapers.  Now, I'm completely covered in them...literally.  The other day, because we didn't want to move you during Kangaroo Time and you were squirming around indicating a change was needed, the nurse decided to really raise the stakes.  Yeah buddy, you guessed it.  She changed your diaper right there on my chest.  I have a funny feeling it is all downhill from here.

Oxygen: The Biggest Challenge

All things considered, Oliver is doing well.  Since coming off the NIPPV, he has made it his goal to show Mom and Dad just why the NICU nurses refer to this journey as the roller coaster of a lifetime.  One minute, his oxygen needs are basically the same as what is offered by room air and his breathing is strong and steady.  The next minute though, he is forgetting to breathe, his heart rate plummets, and his blood becomes desaturated of oxygen as quick as the wink of an eye.  It takes him a while to recover from these spells, and it is quite painful to for us to watch.

Last night for a few minutes, his skin was completely grey, void of any real color.  He looked inhuman and lifeless as he lie there in his mother's arms.  My heart ached.  He gets this way sometimes when he has a severe desaturation spell, but I had never seen one so serious as this.  I struggle with the lack of control I have over these mini-episodes that Oliver must overcome.  I want so much to be able to do something to stop them, or even better, avoid even starting them at all.  I am forced to stand there and watch him suffer, a helpless child working so hard to stay alive.  I hurt for him.  This journey seems so difficult, and so very long.

When the roller coaster is at it's peak, we still find time to enjoy his silly moments too.  He loves to work with his little hands, always grabbing at everything he can.  The other day, he pulled his feeding tube out of his stomach.  He managed to get it out so far that the nurse had to put in a brand new one.  He also likes to help out with the oxygen mask we use when changing out his CPAP headgear.  Little Mister Oliver is all about giving a helping hand.  Thanks buddy!

Oliver's Book: Ch 4

Yesterday was a really big day for me.  I woke up in the morning and the nurses were taking away one of my machines.  Over the last few days, I have started to breathe a little better, and because of this, I no longer am hooked up to the NIPPV.  This ventilator was primarily used to give me a steady number of breaths per minute, but also added some positive pressure, forcing my lungs to fully expand on my inhale.  Now I breathe with the aid of only a CPAP, which requires me to initiate all of my own breaths.  It isn't always easy for me, but hopefully my lungs will continue to grow stronger.

With the exception of my twice a day "Kangaroo Time", my most favorite part of the day is when Mom and Dad give me what they call "oral care."  Oral care is the application of Momma's breast milk to my lips, gums, and mouth using a standard but sterile q-tip.  This is a really important part of my day, because with the feeding tube going directly to my intestines, I don't get milk into my upper digestive system by any other means.  The milk coats my mouth and esophagus with essential antibodies, and stimulates these important parts of my body so they will be ready for future use.  During my "oral care", I suck on the q-tip, stretch out my arms in contentment, and sometimes cry for more milk.  My mom and dad really love this part of the day.

Precious Fingers

They say a picture is worth 1000 words.

The Race

Coming out of the gate with an initial onslaught of adrenaline was the easy part.  All the hype and buildup at the starting line makes it so anyone with a pulse could have started this race strong.  Now though, I feel as if I have been running for many miles, and despite my lack of preparation, I have just found my stride.  I have settled into a steady pace that forces me to believe that no matter how long I run, I will not tire out.  I am a runner who just found rhythm, but has failed to see that he is at the base of a long uphill climb.  Up ahead the road begins to rise, and my body twinges at the feeling it knows lie ahead.  What was once flat ground gradually gives way to incline.  I try not to notice it at first, but my gait is forced to change with the increase in elevation.  My pace slows, the aching begins, and I press on.  For a minute I come to the grim realization that this race is far from over, and I force myself to remember that reaching the finish line is the only option.  I will continue to ascend even if it means constant pain, knowing that if I stop for just one minute, I will collapse, no longer being able to continue.

Happy Holidays

It isn't too surprising to hear that there were no fireworks in the NICU today, but all things considered, we are feeling like that is a pretty good thing.  Oliver did want to celebrate the holidays with a little red, white, and blue, so of course, mom and dad had to join in the fun as well.



The little guy is swimming in the smallest possible socks that can be purchased at the store.  Needless to say though, it wasn't very difficult to put them on.  Thanks to our many friends who always help us to remember to have a little fun, even when life isn't so easy.  Our best wishes go out to everyone.  We hope you enjoy the holiday, and cherish your freedom!  Happy Fourth of July.

Soothing

Even on a slow day, Oliver never forgets to show his Momma that he is always learning something new.  Yesterday, while he was cuddling with her in kangaroo-like fashion, he placed his tiny little thumb inside his mouth and started sucking on it.  This self-soothing act lasted for quite some time, and gave Mom and Dad one more precious memory to store away inside their minds, maybe for one of those difficult days when Oliver is big, strong, and it is hard to remember how small he once was.

Windows to the Soul

Today, for the first time, around 4:30 pm, baby Oliver opened his eyes and looked at us.  I am not talking about a fleeting blink or a quick glance, like he has been doing quite frequently during the last few days.  This was something entirely different.  The boy simply opened his eyes, turned his head as best he could towards his mother and I... and stared.  I was awestruck, momentarily frozen like a rabbit in the headlights of a passing car.  Not a word crossed my lips.  What really was there to say?  Only one thought could describe what I saw deep within his gaze... life.  At that moment, something changed inside me.  I saw him, my only son, as a real human being for the very first time.  It is not that I didn't realize him to be a real person before, but something about his look made me feel different inside, like Oliver knew who I was and that I right there beside him.  I could feel his tiny stare travel through my body, and through those eyes, I could see into his soul.  

He left them open for quite some time too, enough for me to shake myself out of my temporary trance and grab the camera.  Our little man gave us yet another gift today.  We are truly blessed.

Oliver's Book: Ch 3

It has been 20 days since I unexpectedly leaped into this world, and to be honest, I am finally beginning to adjust to my place in it.  The NICU was a bit stressful for me at first, and I took a while to adapt to all of the things that were happening to my body on a daily basis.  Now though, I am learning my schedule and beginning to take it all in stride.

I decided that this week I would surprise everyone and take a couple more baby steps in the right direction.  The first thing I did was tell those nurses to get rid of that uncomfortable central line...no more IV's for me!!  In addition, I have been eating more and more everyday!  I am up to 5.5 ml per hour and hope to be at full feedings (6 ml/hr) by the end of the week.  Now if I can just start gaining weight (still hovering just over 2 pounds), I will make everyone happy.  The nurses aren't too concerned yet, but they do want me to make this happen in the near future.

My Short Term Goal:  Gain weight

I am really taking a liking to "kangaroo time."  I usually spend 4 hours a day laying with my momma and another 4 with my dad.  I try not to fuss around to much, but this whole idea of breathing is still giving me trouble.  Even though I am getting better at keeping the oxygen saturation of my blood high, it is still necessary for me to stay on the NIPPV so that my lungs don't have to work so hard to keep pressure in them.  I don't know quite yet if it is a long term or short term goal, but it definitely is something I have been and will continue to be working towards.

My Long Term Goal:  Lose the NIPPV

My mom and dad are very proud of my progress right now, but at the same time, don't want to get too ahead of themselves.  They have seen a few things here in the NICU during the last few days that have shown them that the road is still quite long, and that every journey has a happy ending.  They are doing their best to be present and enjoy every moment with me, while still being logical and remembering to keep everything in perspective.

Parenting and Perspective

Parenting, a concept that many believe we have all figured out, even though we haven’t yet been awarded life’s blessing of children.  We develop our philosophy on the subject of parenting from years and years of life experience, only to find out one day, when we are instantaneously placed into the role of a mother or father, even though it seemed so clear before, we had all long been missing one crucial ingredient.

I used to think I was quite the expert on the subject of parenting.  After all, I do have a set of exemplary role models who make it seem easy, and even though they have their idiosyncrasies, I felt like I would able to identify theses nuances and modify them for my own purposes if ever given the opportunity to do so.  Furthermore, aside from my own parental figures, I, like many of us, have been awarded the chance to watch the plethora of child-rearing strategies at play each day.  These opportunities take place constantly, everywhere we go.  Amongst the many incidences to witness parenting are family gatherings, trips to the supermarket, and interactions at the school where I am employed. 

I can’t imagine I am alone in the knowledge that throughout my life, I have watched many parent-child exchanges, only to walk away thinking to myself, “When I am a parent, I will never…”   Or the equally as embarrassing times when I have spoken the words to another, “I can’t believe that parent is letting their child…”   Throughout these experiences, I was able to develop an idea and plan for the type of parent I would become.  I thought I had it all figured out, and it seemed so straightforward. 

What I have come to find out, during these last few weeks of reflection, is that these momentary thoughts and incidences where I have passed judgment on another human being, don’t speak very highly of me, nor of my ability to see much from the perspective of another.  I’m not saying my thoughts were ever malicious or cruel, just that I was unjust and blind to the reality of the situation.  While I attempted to place myself in the shoes of another, it was impossible.  I didn’t have the whole picture.  Their situation was not for me to critique.

I feel that even though my journey has just begun, I am beginning to become more aware now, that parenting isn’t as direct and up-front as I once thought.  I used to scoff at parents, even my own, about how constantly they worried about their children.  I didn’t understand the need for parents to always have to be around their kids... the time.  But those notions came from the viewpoint of a child, not of a parent.  I think I am a bit closer to realizing it now.

Now, worry consumes me every moment of every day.  I can’t be away from this hospital for even a moment before I want to go back.  All of those feelings I never really acknowledged or valued before have rooted within me stronger than I ever would have imagined possible.  I would like to say that my days of judgment are through, but we all know that people don’t change that drastically overnight.  What I can do now though, is appreciate what I do have, as well treasure my new found perspective.

I'm a big kid now!

Ok.... so I'm not as big of a kid as you might think.  In fact, I'm still the smallest little dude in the NICU.  But... I'm just a bit bigger than I was yesterday (still hovering around 2 pounds).

Most importantly though, I have graduated out of the smallest sized diapers that they have in the NICU.  I used to wear the diaper on the right, but for a couple of days now, I have been wearing the one on the left!!  The nurses told my parents that there is no turning back now.  I will never again be wearing the mini-diapers!