Life Should be a Marathon, Not a Sprint

Gracie,

I have just experienced my second father’s day and would like to take a minute to reflect on the previous year.

Currently I am excellent at being your heating pad, comforter, mattress, trampoline, sleeping buddy, wing man, teddy bear when you are sick, body guard, reader, feeder, horse, Ipad technician, carrier, friend, tea partner, chaperon and your human powertrain for your cozy coupe. Things which I never thought would go on my resume.

At this current moment you hate baths and water with a passion.

It is not a pretty sight when you get angry or frustrated and I usually give in to what you want.

I am mystified at how much energy you have crawling and running around the entire house all fueled by your curiosity.

Your (10 piranha teeth)  smile electrifies a room and people would die for your attention.

Your sense of humor is based upon pranking and you have a great ignore function.

We still sign with you because you are delayed in your speech. Some communication is better than none since it dissolves some of the frustration from the lack of verbal acknowledgement.

You hate healthy things, but love Oreos, Goldfish, Lucky Charms, saltines, grilled cheese, and toast.

You are fashion forward because your sense of style is tuned with your swagger.

Waking up next to you is like a MMA fight in the morning. Your patience is thin and you are ready to go once you are awake. Your legs and arms kick and tap me until I am sharing your excitement for the day. I wish I had your joy of starting the day.

It is a full time job protecting you from life threatening dangers.

The five seconds it takes for you to greet me with a pitter patter of small footsteps followed by a shriek and glance when I come home from work sums up good parenting.

Now on life. What I can tell you is that I hate aging, but aging also means that I get to watch you grow. As each day passes your physical features become more pronounced. You are exuding beauty and your smile is contagious. People always comment on how you look more like your mother daily.

The older I get the more I realize that I am one step farther away from watching you becoming a great mother and wife one day. I wish I could be there when you become a grandparent, but I doubt that it will ever happen. One day you will realize that time will be your greatest asset while concurrently sneaking up on you as your greatest nemesis. When that happens you will realize that you can never have enough time with your family because they are a reflection of you and your faults.  Keep them close because at the end of the day they know you the best.

About life, people are funny creatures. There are two types of people out there. People who lack self identity and those who have it who continue to explore the path of self improvement. Those without identity will always make the same mistakes over and over again because that is all they know. My only wish for you is to make mistakes, but to never make the same mistakes twice. Those without self identity will continue to make the same mistakes because they always revert back to what they know when they are pushed or stretched due to adverse conditions. Whenever people revert to what they know, it usually leads to failure because they make the same mistakes, only to justify their actions as a different occurrence. I do not want you to ever revert to just what you know when you face adversity. Take what you know and expand on it so you never make the same mistakes again.  My job as a parent in addition to the ones listed above will be to teach you as much as I can, so you can face adversity with different viewpoints  to only make the best decisions. Right now you run to me when you make a mistake, but I will not always be there to fix them.  

The key to making great friendships is to suggest, reflect, act and to never judge people because they don’t live up to your expectations.  Never lose your faith in humanity, but do let people make their own mistakes and accept their faults while learning the act of humility. You will never go wrong if you genuinely love and care about others.

On age, a while back  I made a decision to take proactive decisions about my lifestyle to stay around for you as long as I could. I exercise, abstain from smoking/drinking, and began to accept the fact that I am getting older and grayer. As I watch the seasons pass me I see that the winters and summers take a toll on me while they give you endless hours of joy and laughs. My memory will age and just like a hard drive it’ll record a little slower after time. I don’t ever look forward to the miracle drug which promises me a shortened recovery time after workouts, increases my memory, strength, or even reduce my fears because it would take away the precious relationship between age and time. Legacies are defined between the markers of time and age.  Allow yourself to be educated as much as you can because education should be an asset and not a commodity.

I hope that if you ever find yourself in a position of solitude where you need my advice and I am not there that these letters, notes, and pictures will offer you some comfort and insight.

I am here whenever you need me or when you just need a laugh. hug or kiss.

Devotedly waiting for our next adventure,

Dad

Gracie’s First Year

Gracie’s First Year 

http://www.marchforbabies.org/personal_page.asp?pp=4403662&ct=4&w=5598951&u=teaki2000

Please donate/share. Thanks….

A Worthy Cause

“Love comes when manipulation stops; when you think more about the other person than about his or her reactions to you. When you dare to reveal yourself fully. When you dare to be vulnerable.”

Dr. Joyce Brothers

Stereo Hearts- Gym Class Heroes

A friend recently asked me  after leaving a March of Dimes fundraising event how the March of Dimes helped the battle against prematurity. Prior to Gracie’s birth I shared my friend’s curiosity. After attending a couple of MOD fundraising events I feel that I can now provide a fair response. The March of Dimes raises funds for the research, awareness and support to fight prematurity through special events.  Yes, the tickets to these events may be pricey, but the atmosphere of these events provide a source of elegance behind the dismantling effects of having a premature infant. We were fortunate enough to provide a success story because so many of the outcomes are less fortunate than ours. According to the World Health Organization, the US infant mortality rate ranks 34th out of 197 countries . The US is sandwiched between Cuba and Malta and well behind our industrialized and superpower neighbors. I fear of where we would rank in the world if it wasn’t for the March of Dimes and its ability to advocate the importance of eliminating premature birth through maternal education, research and partnerships by offering an outlet for the voices of those closest to premature infants or angels.  As a bonus, it allows parents to understand and share enriching and vulnerable experiences with one another.   That alone was enough for me to continue to commit our resources towards  giving babies a fair chance at life.  We were  invited to share Gracie’s story at a recent MOD charity event, below were my remarks.

Good evening, I would like to thank Nikki and her volunteers for the humbling opportunity to share Gracie’s story. Tonight wouldn’t have been possible without the close support from friends, family and the March of Dimes.

To me, life is a lot like a using a calculator. Throughout life we are taught how to use the basic functions to get by with our simple daily calculations. Then, parenthood strikes and we realize that we have to start relying on the memory and formula functions on our calculator because there are not enough hours in a day to work, sleep, clean, play, chase and act like a repetitive fool in one night with a child.

Gracie, like most babies, was born on the promise of her parents’ ability to love. She was the last and largest piece of our puzzle. Like most young professional couples, we bought a house, upgraded to family friendly vehicles and after much persuasion; I was inclined to fill the house with laughter from a child. We received a positive result after many negative pregnancy tests. As soon as the news settled in, it seemed as if there wasn’t enough time to prepare for what was to come.

Ashleigh’s pregnancy had its own fair share of hiccups with false screenings and routine tests, but when I learned that we were having a girl, I began to panic after imagining the inflation adjusted costs of Gracie’s prom and wedding. We shared our news at five months with friends and family and at 6 months Gracie arrived. Immediately she owned the statistic that 1 out of 8 babies born into this world are premature. I met Gracie when she was still a masterpiece in the making.

Premature birth is the number one killer of all babies and for Gracie her life began at 24 weeks, weighing 23 ounces, and presented to me in a clear box with a 50 percent chance of survival. This was coupled with the fact that, if she survived, there was a good chance she would have severe developmental delays.

All parents are essentially artists, but the inspiration to create comes from God. We wanted to love on her and the only way we could was by letting her wrap her entire hand around our pinkies or use our hands as her personal blanket. It wasn’t until months later that she was able to lie on our bare chests in the NICU. We realized from that moment on that this was the real deal.

Ashleigh visited and read to Gracie every day for the next hundred and ten days through surgeries, developmental fears and diagnoses to help mold and shape Gracie into the young lady she is today.

Today, Gracie is an active infant who just recently celebrated her first birthday. Her favorite things are neighborhood strolls, story time, and bath time; she is not fond of avocadoes or diaper changes.
So, tonight please bid generously while remembering that 75 cents of every dollar goes directly towards the cause of the March of Dimes, unless of course you are bidding against my wife. Thank you, good luck and good night.

First Birthday from Alpha to Omega

Adele- To Make You Feel My Love

Before you were conceived I wanted you
Before you were born I loved you
Before you were here an hour I would die for you
This is the miracle of love.
Maureen Hawkins

Dear Gracie,
It has been a year since you were born and what a year it has been. I kind of have been dreading this day, because we have become so busy with you that I have been severely slacking on the blogging of your journey. I have plenty of posts, but not enough time to paint your greatest milestones.  The life I used to live is one I was familiar with. With you, my life seems to have a greater and happier purpose, and I wouldn’t ever consider going back to that previous life. The intent of this blog was to capture your day-to-day struggles of growing.  So many people want to know how you are doing and everyone who meets you wants you to be a part of their lives.  Your cuteness still shocks and awes most people. I wish I could take some of the credit, but you have done this all by yourself.
    Twelve months ago I was staring at you through some glass hoping that  I may have the opportunity to at least bond if the worst was to happen to you.   I would have exchanged my life for yours, if I could. It wasn’t fair that your life was so difficult to start out,  but it has made you stronger.
    You may have some delays compared to your peers, but we will try to teach you everything you need to know.  So many babies who share similar circumstances of your prematurity don’t or won’t survive. We chose to never let you go and you reciprocated despite the pain and sacrifices; it would have been so easy for you to just let go.  The decision you made affirmed my belief that you chose us to be your parents.  You will never remember the pain we saw in your eyes or your silent cries filled with tears running down your cheeks when you were in the NICU. I can’t count the number of times my hands were pressed up against the glass wanting to hold you in my arms.
    A birth parent’s ability to comfort their child is something magical. At that moment, I just wanted selfishly for you to live no matter how much pain you had to endure. The decision of letting people inflict pain on you hurt me more than you will ever know and probably explains why I still can’t be the disciplinarian I should be today. You will be a parent one day and understand where I am coming from.  Compared to your peers, you still have a whisper cry, but we have become attuned to your frequency.
    Your life is a testament of what science can achieve, but imagination assists faith by unlocking the mysteries behind science. We all have the potential to generate life, but the final product is out of our hands. That decision is left up to God. 
    Upon reflection, in the beginning I wanted a boy, because I felt that a boy would be easier to raise.  Your grandmother kept a baby book for your mother and in it was a card given to her by a friend apologizing to her for her first not being a boy. I understand now why you were a girl.
    When I was told that you were a girl, it was a difficult realization to swallow because I knew that it would be harder for me to raise a girl than a boy. On this day, I was  given a source of  beauty which I could never imagine.  Your name was also the easiest one to come up with after finding out your mother was pregnant and the name fits you perfectly because you are graceful and embody that sense to others when they hold you. I wish that you could see the warmth you bring into people’s hearts when they hold you and how you make them earn a smile from you.  Your teethy smile accessorized with drool alone puts other people’s’ worries on hiatus.
     Today, you possess more drool than any other baby I know. You have six teeth, no severe complications and although you are small, you are still growing at your own pace.  You are a little over 14 lbs and packed with determination. This can be proven with your constant crawling, curiosity, cries and squirming ability.
     You are no longer on a long list of drugs; you are completely free of wires and machines. Today, you are able to crawl while successfully pulling yourself up to stand. You haven’t mastered the elegant fall yet, but that may be developmental or because your mother has never been graceful at falling. In the past two weeks, you no longer scare yourself when you  face plant.  These days you look around and get right back up to what you are doing.
     You still require that I put you  to sleep on my chest every night and from that point on I move you to the swing and then our bed, but I dread the day that I will have to move you away from our bed. Words can not express the experience of having you wake me up in the morning especially on  weekends with your kitten cries and the constant crawling on top of me. When I do manage to wake up, I see your beautiful brown eyes smiling at me with your six teeth grin while drooling on me. Meanwhile your hands and fingers are constantly in my mouth,  nose, or pulling my hair and eyelashes. These are the experiences in which I will cherish as your father. You will experience this one day as a parent.
    Currently, we have been working on your speech and language progression with flash cards, activity centers and daily interactions. We have been exposing you to sign language along with Mandarin, Spanish, and English , and I can tell that you think we are crazy to attempt this with you, but studies have shown that exposing you multiple languages allows the brain to rewire itself if it is underdeveloped in some areas, which comes with your prematurity.
   I have turned the library into my best friend as I frequently visit it and read you a book from its collection when I get home. Usually, you squirm and want to play instead.  I reposition you until we are finished with the book and then we play. We go on daily walks around the subdivision and talk about our days. I look crazy for doing it but it has a calming effect on you while you try to absorb every detail about our neighborhood. No two walks are ever the same, but you do love them and every walk seems to be a new adventure for you. Some days I walk with you sitting on my shoulders and others I  carry you with one arm. Either way, you are heavy.
    At this age, your peers are asleep by eight and probably sleep for eight hours. You, on the other hand, fall asleep between nine and ten and that is if I force you to sleep by placing your head on my chest while patting your back and your diapered butt. It usually works, even with you struggling to fight against me.
   We have made it one year without an ear infection or a serious cold/ flu. This is an accomplishment which we are proud of because it could  have severely set your development back. However, this was not a task that was easily accomplished alone. All of your friends and family members share the same philosophy that the first year of a baby’s life is determined by cleanliness, environmental awareness and self-awareness. You have not stepped into a Wal-Mart even to this day. However, you have come across the stomach bug which I had the honor of receiving your projectile vomit while  sleeping on a bed of  towels.  
    You have lost a family member, Aunt Shirley’s son.  I have no doubt in my mind that they are both smiling and laughing with you. With that being said, I want you to know that I will always be your father, but I am not immortal nor perfect as I may seem to be in your eyes.  If something was to ever happen to me, support your mother when she finds another life partner to marry because I have good faith that he too will be just as good of a father.  I know he won’t share our connection, but your mother will make sure that he will love you as much as I do. Give him a chance. Your mother loves you more than anything in this world, but don’t force her into being alone. That is the one thing she can’t handle well. Remember  that your family will always remain yours forever, no matter what happens.
    Right now, you have started to consume 1st step baby organic veggie and fruit baby food, water, baby puffs, pork rinds, mealy french fries, along with your formula. At this point you seem to not like juice, but you love mangoes and mango sorbet. We are all looking forward to Thanksgiving, so you may consume your first bird and finally gain some real mass. This family is all about food and you are about to scratch the surface with Thanksgiving.
    In one year you have grown from 23 ounces to fifteen lbs. Which is an astonishing 1400 percent increase in mass and it has been a struggle for us to make you as plump as you are now especially in the thigh area.  The doctors are more worried about you not gaining enough weight rather than gaining too much weight.  You are still off of the growth chart, as to be expected by a micropreemie.
    In two weeks, I will be sharing your story with a local chapter of the March of Dimes in a two-minute speech and am currently just starting to craft your tale. It starts with ” life is a lot like a calculator…”

Thank you for letting us be your parents and especially allowing me to experience fatherhood …

Grade Two

To do anything in this world worth doing, we must not stand back shivering and thinking of the cold and danger, but jump in, and scramble through as well as we can.
Sydney Smith

A Long Way to Get- Bob Schneider
There is usually a parenting newspaper which is distributed weekly near the entrance intake desk at the children’s hospital. I usually pick it up and do the crossword and utilize the reading material on a slow visit. That day, I picked one up and read to Gracie an interesting article on chipmunks in an Alvin and the Chipmunks voice. Obviously, it was embarrassing, but I figured it could be justified in the name of stimulation.  This was followed by an important piece on creating a 529 savings account for your children.  I have no idea how Gracie will ever grow into a college student or a high school graduate, but we do know that one day we will eventually get there.  At that moment, I will probably repeat the same cliché as millions of other parents do on graduation day along the lines of  “kids grow too fast.” One interesting fact I learned from the article was that it costs around 220,000 dollars to raise a child for seventeen years not including the cost of college; this equates to about 13,000 dollars a year. The ironic thing is that before Gracie leaves the NICU, the seventeen year figure amount will already be surpassed in medical bills. As most people already know, the NICU isn’t an Econo Lodge.  thankfully, we have been blessed with great health insurance and TENNCARE. Being an indirect recipient of this experience has made me ask the difficult question of how disjointed and out of touch we are as a civilization when we decide to take away safety nets at the expense of political propaganda.

Luckily, Gracie has a father who is an extreme coupon clipper and has been saving up for Gracie’s first year while researching and utilizing every coupon database, email marketing list and online resource to minimize costs. While her mother was looking at colors, decorations, furniture, clothes and toys, daddy was calculating and controlling weekly costs to feed and diaper his child as those were going to be the constants.  New parents should also know that children actually cost less in their first years than their following years. This is because as they grow older their desires and needs become more expensive. It is never too early to stock up on essentials and network with other new parents to share clothes, resources, information and time.  A little preparation goes a long way when it comes to maximizing dollar yield for your child.

I start on my crossword puzzle and I read aloud the clues and asked Gracie what her opinion is on my answers. She usually responds with some kind of body gesture. Halfway through the crossword puzzle I realize today wasn’t going to be a slow day because the chief NICU doctor was making his rounds and the initial impression is he looks like a typical college professor, which he is because this facility is home to a medical school.  He prefers to wear white New Balances, jeans and an untucked button up casual shirt. As he made his way to Gracie, he pointed out to us something we were completely unaware of and that was Gracie has suffered from some grade two hemorrhaging. He felt that the bleed was well monitored and that most of the bleed had been reabsorbed. Bleeds usually lead to developmental delays and we have emotionally prepared ourselves for a daughter with special needs. However, he did issue us good news that her retinopathy seemed to be healing on its own which was extremely encouraging considering the circumstances. He recommended that Gracie receive an MRI before she is discharged to evaluate the bleeding. He also seemed gravely concerned that Gracie wasn’t able to master the art of breathing and eating without aspirations or complete  exhaustion at this stage in her development. The daily question on how much longer this path of recovery will take continues to elude us.  What shape will she be in when she departs from the NICU?
As we approach closer to discharge, a grave reality sets in that Gracie will be handed over to us with aspirations, bad reflux and potentially horrifying O2 drops during feedings. How would we react when the painful refluxes begin to battle against her hunger and lack of oxygen at home without the digital equipment and sensors? What do we do when she is at home without nurse supervision? Will instinct naturally take over? Our confidence is beginning to crumble as we near discharge.

Gracie has achieved small gains in growth,  but the landscape of parenthood remains a blur.  The concepts of parenthood are easy to read and understand, but completely impossible to imbibe.

A Shining Average *

I am not more gifted than the average human being. If you know anything about history, you would know that is so–what hard times I had in studying and the fact that I do not have a memory like some other people do… I am just more curious than the average person and I will not give up on a problem until I have found the proper solution. This is one of my greatest satisfactions in life–solving problems–and the harder they are, the more satisfaction do I get out of them. Maybe you could consider me a bit more patient in continuing with my problem than is the average human being. Now, if you understand what I have just told you, you see that it is not a matter of being more gifted but a matter of being more curious and maybe more patient until you solve a problem.

~ Albert Einstein

Shine- John Legend

According to Dictionary.com the word average is defined as a quantity, rating, or the like that represents or approximates an arithmetic mean.

To us, the definition means that preemies become the outliers in birth statistics because someone has to anchor the bottom. The interesting thing about statistics is that you can always manipulate them to support your argument. Gracie is now classified as average within her group.  We can now officially begin the road to recovery towards becoming a “normal” baby. An asterisk will now be with Gracie’s name in our eyes. As hard as we attempt to ignore the asterisk, it will be impossible to not address it developmentally.

Today, we were given the news that Gracie was now average in her group by the speech therapist. The greatest challenge of a preemie’s life is the ability to get to the state of being average.  I prepared myself to not reach this level until the age of two as this is when babies truly start to separate from each other developmentally.  However, with every good news comes a hint of bad news. Gracie still is having issues feeding, which could cause complications later on resulting in her failing to thrive. Although we have tried different bottles, one of the biggest remaining fears is her having formula entering her lungs during feeding which would build up and eventually lead to pneumonia; this coupled with her chronic lung disease could lead to hospitalization and possibly a g-tube insertion.   The speech therapist is not a negative individual, but it seems that she is the greatest illustrator of what can go horribly wrong when an infant  “fails to thrive.”

To this day, I have never regarded feeding as such a rewarding and bonding experience for both parent and child. To watch Gracie satisfied after a full meal is one for the books, because it seems that all babies get into a food induced coma where the eyelids become heavy and a slight and subtle smirk appears out of nowhere. This is followed by  snoring and occasional drooling. It is too early to tell if Gracie dreams now, if so I can only imagine what she dreams about as she continues to have phantom movements during her deep somber.

Other parents, such as tiger moms and dads, may look down on the classification of “average” and see that as being sub par for their child.  It just means that we are on our way to overcome some of the obstacles which have been presented to us. Watching our daughter growing and developing in an incubator is about as unfair as watching a pet grow in a cage for the rest of its life. Gracie should be enjoyed by her parents, family and friends because so many people are waiting to be a part of her life as she will be in theirs.

Prior to this experience, Ashleigh and I heard from multiple parents who would continuously share with us that their children were born prematurely. It seemed as if parents were using it as an explanation as to why their kids weren’t performing like their peers even at a young adult level. Gracie’s development will be addressed and carefully crafted by research, resources and patience that were never afforded to me as a child. Life is too short to settle for mediocrity. The grand question is how do I let Gracie shine while making sure she never loses her luster in life? This is the one time in which I hope that she completely embodies her mother’s persistence towards problem solving and her father’s curiosity.

We couldn’t completely understand why parents would bring up their children’s birth status until we had one of our own. Now we understand that being average is not an easy task when you are born this premature. Being average is not something we pride ourselves in, but I just have this feeling that Gracie will live an extraordinary life with what we will teach her as a family. We will mutually benefit from one another as parent to child as we continue to teach Gracie, while learning about ourselves after each lesson.  As a parent, I will probably struggle with the contingencies of her birth, but I can not let her accept it as a crutch.  How do we prioritize gross motor skills development, emotional bonding, communication, and learning with her in a day? Will we ever be capable as individuals or as a couple of rising up to this monumental task?  I have always felt that the strongest of all relationships and families resemble balanced equations, but will ours be balanced enough for Gracie? Duets and great parenting share the exact same blueprint for success. They both have to be executed perfectly and the partners have to be in complete unison with one another.

Being human entitles us to make mistakes and although she will make multiple mistakes on her own,  I wonder if I would ever attribute these mistakes to her prematurity.  We will be faced with the difficult task of juggling the confluence between teaching and executing sound judgement during “teachable moments” to an individual who will see the world differently than her peers.  Then again, the greatest satisfaction comes from solving life’s most difficult challenges.

Aerosol

Cigarettes are killers that travel in packs.  ~Author Unknown

Otis Redding- Respect

For the past month the thermometer has been flirting with the freezing mark. As if the numbing coldness wasn’t enough, it invited a flurry of wet precipitation with it.

A long time ago, Ashleigh decided to never miss a daily visit with Gracie because she felt like it was a sacrifice that parents must endure for their children.  As we got out of the car and walked towards the children’s hospital, we couldn’t help but notice that we were trailing  in a path of cigarette smoke. It is a toxic smell and the scent lingers like icicles in cold air. It was in the elevator, and as we approached the NICU it grew more formidable and stagnant. The owners of the scent were standing right outside of the NICU.  Ashleigh and I stood about 100 feet back from the entrance and still couldn’t escape the smell.

Ashleigh recognized these individuals as the parents of the insane colic meth baby. Not only did they inhale, ingest and linger in it, but they were about to bring all of the toxic fumes inside the NICU. This infuriated me, because as underdeveloped lungs were working hard in the NICU, these parents of all people felt that there weren’t enough challenges already.  

As they were buzzed in, we decided to wait until the pungent cigarette smell dissipated. Five minutes later, we picked up the receiver and identified ourselves and we were buzzed in. The scent of stale cigarettes lingered in the air as the meth infant was on Gracie’s side. We approached Gracie and saw that the nurses were shorthanded and in the weeds. We greeted the nurse and we proceeded with our routine.  Gracie had a diaper which needed to be changed and we did so promptly.  As usual, there was a nice monstrous surprise and just as I was about to wipe, I discovered aerosol poop. Did you know that poop can come in warm aerosol form? Because this was all over my palm and back of the isolette as I approached Gracie’s bottom with a wipe.

Everyone broke out in laughter as I screamed “holy crap.” Meanwhile a family across from us didn’t understand that only two visitors were allowed per infant and they brought in five at a time which caused a little bit of a ruckus.  

Since there was so much stimulation that night, Gracie was gavaged because she couldn’t focus intently on taking a bottle. There are times where she just suddenly forgets how to drink from a bottle and it stumps her initially which later compounds into frustration. It is funny how you realize that you have come so far sometimes and yet there is so much more ground to cover.

In the background, an accusatory family on the other side of the room blamed the nurses for creating a sicker baby. The mother believed that her baby was able to breathe on its own prior to their admission into the NICU and this brief interlude of vocal interchanges were causing a scene in the NICU.  As she was telling her story to a nurse, she had an instance of foot in mouth syndrome and mentioned that she was taking some sort of drug during her pregnancy. At that exact moment, we could sense that all the nurses shot her an evil glance over their shoulders in unison. It is amazing how protective some of these nurses are over these babies.

We began our nightly reading to Gracie when the visitors and parents dissipated. As usual, the nurses dimmed the lights in our area. When I was finished Ashleigh prayed over Gracie’s isolette and we left as quietly and simply as entered.  The hospital greeted us with warmth while mother nature reminded us again of winter’s cruel elements.

Bearing a Walk of Sacrifice

Below are the remarks which would have been given by me at 10 AM today at the Highlands March of Dimes Walk. However due to the recent catastrophe this event has been cancelled. Nonetheless I felt that first-timers, parents, friends and families of the cause needed to know what they were donating money towards on this and future March of Dimes Walks. Please feel free to share and comment. Enjoy…

No Woman No Cry- Bob Marley

Good morning, I would like to thank the corporate sponsors, chair members and especially Nikki Hicks for organizing a heart mellowing experience and allowing me the opportunity to speak to you all today. Many thanks to them and friends who made this event a success.

They say that behind every great man there will always be greater women behind him. Two of the women are at home due to doctor’s orders. Nikki, another great woman first approached me four months ago asking if we were willing to be the ambassador family. This was a huge honor, but my answer would become dependent upon the progress made with Gracie in the NICU. Gracie at the time was still dealing with a rollercoaster of health issues and I feared that the weight of having to tell an unfinished story would be too much for me to bear.

Today I can turn the page on one of the scariest chapters of my life because of the March of Dimes. Due to their research and resources, we and Gracie’s specialists have access to information and resources when she is faced with adverse health conditions. We can safely say that Gracie is getting closer to normal. She is almost 9 lbs and a heartbreaker. She is the first thing I see when I come home, because she sleeps on my chest she is the first and last thing I see when I open and close my eyes, and the last thought I have when I drop her off before work in the morning. I can not put a price tag on those experiences, but what I can say is that the March of Dimes painted the painful portrait that everything that lives has to die, but not everyone gets a chance to live a life.

To begin this story, Gracie wasn’t an easy pregnancy. Early on, we had to go through quad testing due to the presence of life threatening genetic markers. After the genetic consultation test, we found ourselves in the ultrasound room. The tech and doctor examined and took measurements and gave us the reassured 99.7 percent confirmation that the quad test was a false positive. This was also when we later on found out the gender. It was a baby female. For those who know me I immediately fast forwarded to prom and the fact that I will have to pay for a pointless wedding because no man in the world would be good enough for my daughter. This was accompanied by me hearing my subconscious making “cha-chinging” sounds with all the costs associated with raising a daughter. We went home and began making preparations for Gracie’s arrival into this world.

In the early morning hours of October 18th Ashleigh was experiencing what she though was a urinary tract infection. We went to the emergency room and that was when we found out Gracie was in the breach position at Bristol Regional everyone kept apologizing to us with the sentence, “I am so sorry!” Everyone kept reassuring Ashleigh that she was going to be ok. No one dared to mention anything about the baby. Til’ this day, the word “sorry” chills my soul.  Due to the nature of extreme prematurity, Gracie couldn’t be born at Bristol; we had to be moved to Johnson City. We called my mother in law and told her to meet us at Johnson City Medical. We were transported with a doctor and nurse from Bristol to Johnson City, while I sat in the front of the ambulance. We arrived to a prepped hospital room.  Doctors, nurses and staff members began asking us the same questions while they poked, prodded and inspected a tearful new-to-be mother. A wave of panic came when the OR surgeon checked Ashleigh and said that the baby was coming. The longest second came when she asked us if we wanted them to do everything they could do for this baby. I looked to Ashleigh and she said yes. The new to be mother was rolled into surgery as my mother-in- law and I stood outside the OR room in the women’s center. Everyone was running into that room, and you could hear nurses say that they were still waiting for the neonatologist. 35 minutes later, nurses came out and told us the surgery went well and that the baby was breathing. Later Gracie was rolled out to me and my mother in law in a clear box flanked by nurses and specialists. She was on oxygen support and had breathing support from a bag.   

She was born on October 18^th weighing 23 ozs and was less than 12 inches long. I immediately asked if she was okay, and they said she was fine and that we would be able to see God in a few hours in the NICU. We were asked to wait in the hospital room for the surgeons, neonatologist and new mother.

The OR surgeon was a woman of Eurasian descent. She came in and told us that the surgery was perfect and explained how she had to do a classical c-section by filleting the uterus. Ashleigh could not attempt future pregnancies for at least 18 months and all pregnancies would have to be delivered at 36 weeks translating into potential future NICU experiences. She explained that the baby was extremely premature and that she couldn’t comment on something outside of the realm of her expertise.

The attending physician came in and spoke about the surgery and said that they don’t usually attempt to deliver prior to 24 weeks and that there would be some serious long term health complications. Later on, a neonatalogist came in and gave Gracie a 50/50 shot to live past the first 48 hours. This man later became Ashleigh’s male confidant in the NICU and probably Gracie’s best advocate and fan. He warned us that the first 24 hours were critical and for the time being Gracie was on full life support. He told us to visit in a few hours. He asked us to be positive and left us with a side note depicting research articles stating that 20 percent of the 24 weekers overcome and live healthy normal lives. His departure left me in a state of confusion.

I looked out from the room window and saw the sunrise, while I ate a banana.  I couldn’t remember the last time I watched a beautiful sunrise.  Deep down a flood of emotions brewed. When I was about 7, my sister was born premature as a twin. My brother was a still birth. I remembered sitting through the funeral arrangements and the funeral as my mother wept. I now understood what she was feeling. I heard a voice in my soul telling me to “man up.” I asked my mother in law if we needed to make secret arrangements for the baby. She suggested that we wait.  

When they wheeled Ashleigh back in, she immediately asked about Gracie. I looked in her eyes and gave her a vague response of she’s going to be ok. She looked at her mom for specifics who gave her a touch and go answer. No one was going to give her numbers. A few hours after Ashleigh was stable, I walked searching for Gracie. A nurse saw my lost soul and she walked me up to the NICU and walked in with me. Walking into the NICU for the first time was emotional. A tear comes to your eye for all that starts there and a tear comes to your eye when you leave there. The battle of life and death is measured in millimeters, centimeters, milliliters and grams rather than inches, ounces and pounds. I met Gracie in a corner attached to machines, billi lights while receiving the first of many pints of blood. A nurse greeted me and told me she would be back.

The neonatologist came and spoke to me and told me that Gracie was improving, but time would be either our enemy or our friend.  When the nurse came back she told me that I was lucky that it was a girl because women are stubborn from the start.

She then expressed the life saving potential behind breast milk and asked me to sign Gracie’s life away to the NICU via paperwork. This paperwork ensured that Gracie has only one biological mother and father, but what seemed like a million midwives, surrogates, teachers and support staff who transformed God into Gracie.

For the next 115 days, we painstakingly watched our daughter’s dips, rises, turns and pitfalls.  We watched our daughter grow inside a plastic box while others around us were being discharged or had passed away. We were sandwiched between those who were extremely blessed and those who felt like they were cursed.  

Gracie endured endless surgeries, sicknesses and procedures all resulting from her prematurity.  We desperately attempted to figure out how to delicately bond with her. It took us multiple weeks to develop the courage to bond with her through touch and sound. We read to her everyday hoping that it would give her a reason to fight for her life. The majority of people interpret this experience as a curse. I interpreted it as a teachable moment in life. It is where we learned how to do kangaroo care, where we learned how to do physical therapy with her, feed her, and show her we were worth her sticking around, while sharing her with the world. Both of our families and friends wanted us to have children, but we never felt completely ready until now.

The NICU is the proving ground of whether parents are strong enough to raise a preemie. It teaches you how to function with minimal sleep and multiple distractions, become an emotional weathered rock, fight your fears as a parent and individual, patience, and last but not least offer your hand to those in appreciation to those when so many others turned theirs away due to personal judgment or selfishness.  

On countless occasions, when Ashleigh stepped out of the room I would open up Gracie’s incubator and whisper to her that I needed her typical female stubbornness to come through because her pedigree has zero quitters. She needed to let me earn the role of fatherhood and her friend. I promised to give her a better life than I received while providing endless amounts of fatherly love filled with tender hugs and smiles while remaining fair.

Six days ago, I came across a story which captured my heart. It was the story of Avery Grace, daughter of Becky and Eric Coley of Marion,Virginia. Avery was admitted the day Gracie was discharged.

Three days after she was admitted she passed from genetic complications resulting from a fatal form of dwarfism. Her parents gave her back to God as they ended her suffering. This is such a difficult and selfless act of faith. I have been a witness to that experience with one of Gracie’s NICU mates.

I watched as a mother of triplets collapsed three feet from her daughter’s incubator and released a blood gurgling cry. The father did his best to comfort her. This was followed by nurses and multiple privacy screen dividers covering this intimate moment. We promptly left to give the mother her space and when we returned the preemies stat monitor simply stated the word “discharged.” The defeated nurses were all staring at the ground or outside.  In between the dividers, I caught a glimpse of the parents holding their daughter. I gave Ashleigh a look which said “that easily could have been us.” The NICU experience brought us closer to the Coley through blogging.

As Avery’s courageous mother Becky Coley blogs about her pain, suffering bleeds through her writing. Each time she blogs, it seems as if she is healing. As I stand here today, I can tell her that I can feel the pain she feels daily because I still relive it every time Gracie does something spectacular like pass gas while smiling. After reading her blog, Ashleigh and I both see Avery Grace in Gracie when she sleeps. It is my wish that the Coles find peace within themselves like I did.  

The one question I saw on her blog and never had a chance to address on mine was “Why me? Why us? Why Grace? These are the hardest questions to answer for anyone who has experienced complete loss.  

On my desk is a frame which Ashleigh gave me. It is not a picture of my family or a beautiful portrait. In it lies a scripture which I govern by.  It is Romans 12, also known as “The Living Sacrifice.”

I hope that everyone can take a small nugget from my response below because there is common ground amongst the family and friends of preemie parents and those who were affected by the storm.

God is a lot like love, we spend our lives chasing it and hoping that we can catch it. But what we fail to notice usually is that He has always been staring or sitting in front of us waiting for us to offer Him an example of a living sacrifice. In my opinion, religion was designed to interpret God’s will and science is man’s attempt at figuring out His intelligent design.  Both have a delinquent flaw and that is man. True faith doesn’t require us to have all the answers because faith isn’t about being omniscient or even being clandestine.  Faith is something which can’t be empirically proven or disproven. A person who is true in faith must acknowledge that there is no empirical proof  that there is a God.  Each of us were designed as part of His image. If we all were replicated in equal shapes and talents then none of us would be impressive and in turn be boring. If you’re only seeking His face through the promise of heaven or the threat of hell then you are incorrectly motivated. He asks that you transform yourself by sacrificing a piece of yourself to Him. As we each have experienced a degree of loss within our lives, I encourage you to extend your commitment to service outside of this cause. It can be as simple as something like a donation of monetary value, time, skill, hot meal, prayer, or even a pint of blood. These are all living sacrifices.

As I was putting the finishing touches on this speech, I received an email from Gracie’s sitter aka “Mammie” that her grandchildren attended a MOD walk last year and collected dimes, nickels and quarters.  There was a  total of five dollars which is a significant amount for children and they wanted to give it towards Gracie’s cause. The March of Dimes not only taught these kids a valuable lesson about giving, but  the importance of offering babies a healthy chance at life. These kids could have easily spent this money on candy or toys, but decided on a greater cause due to great parenting.  They share the same amount of generosity as my alma mater and frat brothers have in the recent days and this my dear friends has brought joy, pride and tears to my heart. The March of Dimes ensures that children can be some of our greatest teachers.

Thank you and God bless you all…

The Story of Avery Grace www.averyshealinggrace.blogspot.com

The Aptitude of Parents

“It is not the strength of the man’s muscles that beats the other man; it is the strength of the man’s mind that over-came him” – Anonymous

Ain’t No Mountain High Enough- Marvin Gaye & Tammi Terrell

Today, Ashleigh met with the physical/speech therapist who told us that because of Gracie’s prematurity and level two brain hemorrhaging that more than likely Gracie will need orthopedic inserts for walking, walking assistance or wheelchair because of the effect of the bleeding on the part of the brain which assists in the processes of gross motor skills. We were told that excessive bleeding in the brain could force us to have a delay in gross motor skills development similar to that of a down syndrome infant. Gross motor skills are responsible for large muscle group coordination which work together for tasks such as walking, sitting, kicking and throwing a ball.  In a normal infant, the muscle groups usually develop from top to bottom meaning that a baby can control their head first to track objects and as they progress the motor skills below their head develop.  How quickly Gracie’s gross motor skills develop will result from her gains in muscle tone and strength.  Gross motor skills are the underlying foundation for fine  motor skills such as writing, sitting in an erect position and participating in a classroom setting. All which could  hinder Gracie’s classroom performance.

 As of right now, Gracie is still in an incubator, but in due time she will be on an activity mat, wrestling, singing, building, crawling  or playing tug of war with me. We have two years to come from behind and not one day will be wasted. Her life will become my version of Cinderella because everyone likes to watch a come from behind victory.

Personally, I am getting tired of these worst case scenarios everyone presents to us, because it is always so negative. Most of these specialists make judgements based upon statistics and research, but it amazes me how  they never use outliers. I refuse to believe that they haven’t come across some amazing recoveries.  As Ashleigh delivers this bit of heart wrenching news, I recall the only piece of  evidence of overcoming adverse odds. It came from Ashleigh’s favorite neonatologist after Gracie had her PDA surgery. He mentioned to me that out of 100 babies of Gracie’s gestational age, he has only see five as energetic or active as Gracie under full sedation. This makes me wonder exactly what Gracie has in store for me in the near future.

The physical therapist, however, did mention that things were promising because Gracie was so active with her wailing arms and legs kicking out of the swaddle. She wanted us to swaddle while making sure her legs were up to her chest but to also lift Gracie’s back while changing her diaper to develop back muscles and strengthen her trunk. It’s like us strengthening our core, but in preemie form.  Pushing her legs up to her chest strengthens her leg muscles which I couldn’t understand, because from day one she was kicking everything and everyone away from her legs. It takes us twenty minutes to swaddle her tightly and 5 minutes for her to punch and kick out of the swaddle. Which is followed by her yawning and stretching as a sign of complete satisfaction. I warned her that when she comes home there is something called a swaddler which she shouldn’t be able to kick out of. I am determined to have the last laugh.

 The kicking and flailing reminds Ashleigh of what it felt like when she was pregnant. Gracie hates things which cover her legs up. She also has some of the strongest calf muscles on an infant I have ever seen in my life. They are toned and deserve to be in one of those Skechers tone ups commercials.

All we can do now is infant massage in which we rub her muscles down with baby lotion to make Gracie aware that they are there and to stimulate them. Muscles are a lot like God-given talents, they can easily be forgotten and wasted when not utilized to their full potential during our short lifetimes.

Sanguine

” Confidence comes not from always being right, but from not fearing to be wrong.” – Peter T. Mcintyre


Five for Fighting- The Riddle

Today, they announced that they were going to take steps in weaning her off from the liquid caffeine used to jump-start her central nervous system. This order was passed down from the same neonatologist who was adamant about pulling Gracie off the ventilator. You have to admire this doctor’s aggressiveness in order to trust him.  He wasn’t wrong about the ventilator and we have no reason to not trust him this go around. After all, he is a pro at what he does and I have watched him work on a weekend with a stained waffle knit shirt and some jeans  in a room full of critical care preemies with billilights and staff members tripping and falling over each other trying to deliver test results to him.  He is a doctor who realized and knew his potential and purpose in this world.

During this time, he not once became stressed or flustered due to his calm and cool demeanor. He always wore a smile and listened to the people around him and is open for discussion and suggestions, when a better alternative is presented to him he tells them to go for it. Being able to have that much faith in your team when it comes to dealing with delicate lives is his progressive approach. The approach is fueled by confidence in his experience along with his staff’s. Although initially I had more confidence in Gracie than anyone when she was first-born, he has always said that Gracie was the star of the NICU because she was the smallest.

This neonatologist has become a man whom Ashleigh admires when it comes to the health of Gracie and  in my opinion between him and Ashleigh’s favorite doctor, they are the one- two punch of the NICU when it comes to saving and preserving  preemie lives. There are certainly not enough thank you’s in the world we could ever give these two men. 

Caffeine is used in the NICU as a stimulant; it is also a diuretic. The coffee I drink every morning is rich in antioxidants, but in this case it is Gracie’s lifeline for breathing. Taking away her caffeine can carry serious repercussions such as her forgetting to breathe on her own. I have never witnessed this in real life, but I know that I do not want it to be showcased to me by Gracie. Unfortunately, Ashleigh witnessed this several times while Gracie was being weaned from the ventilator. In this case, the theory is once they pull her off the caffeine, her body’s programming will kick in and get her lungs to work on their own. Now, we only have to have a little faith in Gracie’s fragile body. During these times you can only wonder the power of the human spirit.

The fear is that she may forget because the programming isn’t there. If that happens, then she will be more than likely re-intubated. Intubation for a baby is not only traumatic, but the word painful doesn’t cover it. You wonder as a parent if she will have enough strength to recover and keep fighting or will she just quit. intubation also creates long-term damage in the larynx or the human voice box along with asymmetrical palates. Mentally and emotionally it would also mean that we were backpedaling on progress.  I hope that in Gracie’s interest we will never have to revisit intubation ever again.

It has become harder and harder for us to see who she has become and instead always see her as the small fragile being she once was. From day one, they always tell you that she will always be behind in size and development until the age of two. From that point on, it will be up to us for her to catch up with the rest of her peers. I welcome the challenge because raising a normal  baby right now would be so much less of a challenge.

I now understand why “preemie mother syndrome” is such a hard habit to kick. It is just like that Subaru commercial where the father sees his little daughter in the driver’s seat as she prepares to drive off.  You can never escape the initial impression a child leaves on you no matter how hard you try to wipe it off.