Friday, December 6, 2013

The Little Reminders

By Jacob Hedgespeth-

Last Sunday before I left for yet another week at the police academy Conor started a fever and continued to feel worse. Istarted to feel the NICU parent creeping up on me every time I checked his temperature. We ended up taking him to Urgent care, since it was a Sunday, and got him some medicine and other things to help knock the little man’s troubles. As we got home his temp continued to rise, as did the NICU parent in me. I went into full worry mode like I did over a year and a half ago. 

I turned to my uncle again who gave me so much great advice and insight during our NICU stay. I knew I would get a no nonsense answer, and that’s what I needed. He told me how to alternate Advil and Tylenol to get his fever down, and not to take him to the Hospital (what the NICU parent in me wanted to do) because this is what they would do for his as well. Long story short Conor made a recovery by Wednesday, and is back to normal. 

But it’s funny as a NICU parent your outlook on a fever is warped compared to the average parent. All I kept seeing was this tiny child in an isolette, and I had to help him in any waypossible, and my safe place with his is a hospital. All this also reminded me that RSV season is among us people, if you have a preemie now at risk fight as hard as you can for a Synagis injection, if you need help in the fight email us. I became way too familiar with insurance companies last year you just have to know how to fight the way they do. Also I know firsthand how hard it is but you have to go on lockdown, don’t go anywhere. 

Keep your miracle in your house as much as possible, you might have to miss Thanksgiving dinners, and possibly Christmas but it’s not worth a trip back to the Hospital. Good Luck this season and keep your children safe.

Wednesday, December 4, 2013

But it's my first time

By Jordan Stowe-

As a stay at home dad, I have had many “firsts”.  Like, I might be the first father to call his wife at work to change my first poopie diaper.  I figured it was either she clean up the poopie diaper or my throw up from trying.  So I made the call.  Her first bath was an adventure too.  She peed on me while her mom and I were still in the NICU.  Her nurse Maria said she was marking her territory so to speak.  Her first desat, her first brady, her first meal without a feeding tube, not all of these firsts were good.  But let’s revisit the ones that were…

It was a Monday, we had been in the NICU for three and a half weeks when we got the news.  The news Adeline would be going home.  This would start a barrage of firsts.  Questions just raced through my head.  Did I put the car seat in right? Will she like her parents outside of the NICU life?  I’m not one to drive slow.  I’m actually quite guilty of a lead foot on the gas pedal.  But, driving home a barely four pound three and a half week old baby, I was driving “grandma style”.  My hands were at 10&2, and I assure you I was no where close to the speed limit.  Hazard blinkers were on all the way home.  As we crawled into out driveway, another first happened.  We introduced her to her new home.  We brought her in, set her in the middle of the floor, and said “Okay, now what do we do?” Thankfully my wife was able to be out of work twelve weeks with Addie before having to return.  This provided me with some time to ease into the many firsts I encountered. 

For those that don’t know me, I’m an avid fan of all things sports.  I also write a blog on Minor League Baseball here in Greensboro, NC.  I generally hold media credentials to most major events here.  This was another first for me, as a father.  For the last two seasons, I was a season ticket holder for the local minor league baseball team.  I attended 140 games in two seasons.  Seventy games each season.  This season when my little girl was born, I attended two all season.  Not because my wife wouldn’t let me or because of any other reason than my daughter needed me.  That was a first for me.  I learned that some things in your life, are just that, things.  I no longer enjoy some of the same things as I did before, because I’m not the same man I used to be.  I really think, as dads, we can’t go through something as traumatic as the NICU and not come out unscathed.

As a stay at home dad, I’m generally the first thing she sees when she wakes, and the last she sees when she sleeps.  I am absolutely in love with this girl.  She’s my first daughter, with my first dirty diaper, and my first time being called daddy.  And of all the firsts I get to experience everyday, her words that will one day turn into “I LOVE YOU, DADDY”, will be my favorite I think.  But until then, I’ll bask in the giggles, smiles, and the cuddle time.  Because you’ll be big soon enough, and until then, know this… Daddy loved you FIRST.     

Thursday, October 10, 2013

That's Preemie Power!!!

By Jordan Stowe-

Life for me as a stay at home dad of a preemie is awesome! Because let me tell you, my wife and I had some severe infertility issues to begin with. I was, as a man, worried that I wouldn’t bond with her. That I wouldn’t feel like her father. That I would feel insignificant in the whole thing. Boy, was I wrong. I think God gave us a preemie, so that I would feel that strong connection with my daughter. Because, now I’m the first one she sees when she wakes in the morning, typically the last at night. I love taking care of her. I never knew I could be attached to someone so much. As a father of a preemie, the NICU journey was very tough emotionally. I took a big toll on me as a man. 

I spent a lot of time crying, praying, and just staring into this isolet feeling so helpless. My wife was upstairs in the ICU for the first three days of my daughters life. It was so hard on me sharing my time between the two. I had to be there for my newborn 3lb daughter and I had to be there for my wife who just had emergency surgery to deliver the baby. It was a very hard and trying time for me. I’ve always been soft hearted, but to see the NICU for the first time, and knowing that right out the gate, my daughter was a patient among them just ripped my heart out. You know, as a man and father, you want what’s best for your children. You never want to see them cry or hurt. 

After those weeks in the NICU and the week stay before Addie was born, my emotion tank was on empty. And in so many ways, still is. I’m a stay at home dad by choice. I can’t wait for play dates, birthday parties, and just all the crazy children stuff. Because for so many of those nights, I didn’t know if she would even leave the hospital. With us, anyway. It has been and continues to be an awesome, incredible, sad, and emotion filled experience. If one thing my daughter has taught me, it’s compassion. She took this heart that was becoming so cold and hard, and melted it with a single smile. They say, us fathers, are supposed to be the strong ones in the family. Well I can attest, my preemie is definitely the strongest in ours. 

 At only 3lbs she fought for her life, and WON! That’s Preemie Power.

Thursday, October 3, 2013

The Importance Of Community

By Joel Brens-

As we congregate in Nashville for our 2013 Preemie Parent Alliance summit, I can't help but reflect on what I have learned from last years summit and what I hope to gain from this years. During last years summit we received gift bags full of items from all the different organizations attending. Included in the package was a small wooden box with a tree on it. Inside were stones with words that we can relate to what we do in the NICU support community, as well as it relates to our own NICU experiences. A couple months ago I opened the box back up and thought at length about what exactly it represents.

First and foremost, PASSION to make a positive difference is what drives me as well as the other members of PPA to do what we do. I feel like we are making strides with fathers voices in and after the NICU, but we still have a long way to go.

TRUST is another thing that plays a key role in community support. Sometimes we face decisions or experience things that may not seem normal, and through trusting our support groups, we often realize we are not alone with our worries, when we can say "Yes! I do understand how you feel!"

We are constantly trying to CREATE new ways to provide support, resources, and advice, on a individual basis, and collectively as a larger organization. I am committed to offering as many services through Papas as possible, even if it means referencing you to one of many other amazing organizations.

We EMBRACE diversity, because the reality is everyone manages their NICU experience differently. Much the same, multiple members of PPA have resources addressing specific needs (micro-preemie, bereavement, multiples, special needs). Whether you spent three days in the NICU while your child was treated for jaundice, or you spent six months, (and countless nights) wondering if your child would make it, your insights and feelings are always welcome and important to us. Diversity is what makes us great.

Finally, HARMONY, which brings me back to why I feel the Preemie Parent Alliance is capable of doing amazing things. The work the leadership team is doing to provide us with opportunities to speak to medical and health care professionals is fantastic! Parents are starting to feel more empowered, hospitals are embracing the importance of parents care while child is in NICU. All these things are possible because of a changing tide, and the Preemie Parent Alliance is playing a large role in making it happen.

To learn more about what we are doing as an organization, be sure to check out the Preemie Parent Alliance's homepage.

Tuesday, October 1, 2013

A Father's Story

By Jordan Stowe-

It was a Wednesday. My wife’s platelet count had been steadily decreasing as well as her blood pressure rising. She had been in the hospital for almost a week. She and the baby were hooked up to all sorts of monitors and had tests ran around the clock, to ensure mother and baby health and safety.

As a father, I will never forget Dr Adkins walking in the room and telling my wife to get prepped for surgery. I remember being so terrified. First for myself, then for my wife, then for my little girl that was about to be introduced into this world. I looked at Shanna, my wife, and she was smiling as she said, “We are about to be parents!” I remember my mom just happened to have dropped in to see us, and I’m so glad she was there when she was. I was a nervous wreck. I had this abundance of thoughts, feelings, and emotions flowing. I was scared for my wife who was about to go into surgery. What if something happened to her during surgery? What if something happened to my little girl while we were in there? Did I remember my camera? Man, I’m hungry… Just a rush of ideas and questions now enter my mind.

I sat in the OR waiting for the anesthesiologist to do his job, and for the nurses and doctors to put up screens so I couldn’t see anything. I’m petrified of blood. But, as I sat there waiting for them to come get me all I could think about was Adeline, my sweet innocent little girl about to be born. I had no idea the events that would soon unfold.

After what seemed liked hours, they finally came and got me and led me to the OR room. My wife was laying on a table with a screen hiding her from the neck down. There were two doctors behind her monitoring her blood pressure and three doctors beside her assisting the surgeons. I could hear every incision, every drop of blood as it hit the pan, and every spoken word in the room. The one thing I didn’t hear, was Adeline cry when she was born. It was the most terrifying moment I’ve ever experienced. She would be started immediately on a C-PAP to help her start breathing on her own. Dr Adkins had announced her birth and the Neonatologist that night brought Adeline to her mother and I for a brief second before being whisked upstairs to the NICU. That two seconds would be the only time my wife saw her daughter for another 24 hours.

As I walked into the NICU for the first time, it was very dark and almost morbid. I saw a father holding his little girl in one hand, cupped to his chest. I’ve seen Barbies that were bigger. It was then that it hit me, that our little 3lb baby was going to be on a journey. Little did I know, that place that was dark and dreary would soon become a beacon of hope for my family. In a room full of chest tubes, IV’s, and feeding tubes there my little Adeline laid sleeping in her isolet. All I could do was look at her through the glass. I felt so helpless. I wanted to pick her up and tell her about her mommy, daddy, her dog and cat. I wanted to pick her up and know everything was going to be okay.

That first night she had a desat and a brady episode during the night. I remember starting the day at the NICU and finishing the day at the NICU. I didn’t want my daughter to fight alone. Since she’s been home, I still make a bed in her nursery, the nights my wife works, so I can be close to her. I will always be grateful to the NICU nurses and doctors who gave her the best fighting chance at this world.
I have accomplished great things in my life. But none greater the feeling, than to hold my daughter every night now, and know that smile on her face… I put it there.

Monday, September 30, 2013

You don't have to be perfect

By Joel Brens-

Dear Jayden- A lot has changed since the day you made your abrupt entrance into the world. You have overcome so much already. I see progress in your development every day. It gives me the greatest sense of pride. Your ability to communicate is making parenting more manageable on a daily basis.

I wish I could explain to full term parents what it's like to always be holding your breath. It's exhausting, because the stress I feel is a direct result of the love I have for you, and that I want nothing but the very best for you. Of course our worries these days pale in comparison to what we felt during your first few weeks, when we could only hope and dream you would be as far along as you are now.

So much is changing in society and culture as we turn into parents and begin raising kids of our own. Do I know what the future holds for you? No clue. But there will come a time in your life where you may feel that being perfect, or the best at what you do, is the most important thing. I certainly want you to strive for success, but I will allow you to make mistakes, sometimes more than once. I certainly have.

If you are struggling with school, with friends, or having trouble finding your path, never be afraid to talk to me about it. It's nothing to be ashamed of. Someday you will understand that life is complicated, that humans are capable of things that don't make sense, but also that people are capable of amazing things, you included.

What I hope for your future and the path you choose to take might be very different, and that's ok. Just make a choice to do your very best everyday and great things will come your way. I love you beyond comprehension.


Thursday, September 26, 2013

On the day you were born- Joshua King

By Joshua King

June 22, 2009


This is easily one of the best days of my life! It is as well one of the most uncertain.  My boys made their grand entrance and that’s all I remember.  Now my awesome NICU graduates are 4 and thriving, which gives me the opportunity to look back over that day.  What was happening outside of that hospital hallway? Who was affected by the events of the day?  As I was thanking God for my children being born and praying for strength, was anyone else doing the same?

First of all, Aaden and Noah share a birthday with musicians Francesco ManfrediniÉtienne Méhuland Hermeto Pascoal, as well as Czech conductor Libor Pešek. Yes, we are a music nerd family, so any collation excites me!

In a less positive light, Washington D.C. was in turmoil from a horrific event.  This was the date of Washington Metro train collision.   A moving train collided with a train stopped ahead of it; the train operator and eight passengers were killed, making it the deadliest crash in the history of the Washington Metro. Several survivors were trapped for hours, and approximately 80 were injured. A preliminary investigation found that after the June 17 replacement of a track circuit component at what became the site of the June 22 collision, signals had not been reliably reporting when that stretch of track was occupied by a train.

After stumbling across this in my research, I literally felt my heart stop.  As my boys were coming into this world, others had departed earlier that day.  They were someone’s child, brother, sister, mother, father, friend, love.  This reminded me to never take any moment for granted.  My family is the most important thing to me in the entire world and every night when I tell my boys good night I make sure I tell them that I love them.

Every moment my family spent in the NICU was one of anxious uncertainty.  If anything this topic made me greatly appreciate my family’s hospital tenure, for without those doctors and nurses, I would not have boys to tell that I love them.


Wednesday, September 25, 2013

Beyond Prematurity

By Jon Bennion-

I never expected to be the father of a micro-preemie. My son, Jack, certainly didn’t plan to be four months premature. It’s just how things happened.

When you are stuck in the NICU and navigating through those first tumultuous months and, perhaps, years, it’s hard to think beyond prematurity. Much of what seems to define our little ones stems from their early arrival. The prognoses we hear and the predictions of the good and the bad seem all-consuming at times.

As the years pass, some of those early forecasts are either confirmed or debunked.

While this is all progressing, something big happens - your preemie grows up. Your preemie grows so much that you realize calling them a preemie really doesn’t define much of who they are anymore. That doesn’t mean that they have “grown out of” prematurity as many folks believe is the case. In fact, many difficulties they face and will not “grow out of” are a direct result of their extreme prematurity. However, at some point, you realize that you have a toddler or child on your hands that is defined more by their like and dislikes, their perseverance in the face of challenges, and the unique connections they are able to make with friends, family and strangers.

Even though Jack is nearly 4 ½ years old, we still get questions from distant folks about “Baby Jack.” Many still think of him in small terms. When you start out at just over a pound, it’s hard to imagine anything that small growing to where he’s at today. It was hard for me some days, even though I was watching him grow before my very eyes.

And then one day the shift from preemie to child hit me hard. I realized my thoughts, hopes and prayers for Jack were no longer NICU-focused, tumultuous-centered fears of the future. We were already into future.  We have recognized the specific challenges Jack faces (CP, speech delays, feeding difficulties), and we are facing them head-on. We are living the dream we felt was almost taken from us in the NICU without the paralyzing worry and uncertainty.

All of this to make a simple point - if you are in the depths of the NICU abyss and facing uncertainty, prematurity is not a permanent way of life. And even if elements of prematurity linger beyond those early years, it can never totally define who your child truly is as a person.

Tuesday, September 24, 2013

I don't know how you do it

By Tom Doty-

I have heard this comment many times over the last year.  Sometimes referring to taking care of twin, often referring to how I was able to handle the roller coaster of being in the NICU.  The easy response I give is "I had no choice."

This is a cop out on my part.  Me protecting my inner feelings.  This weekend past weekend we held our girls 1st birthday.  What a great day we had family, friends and even some of our NICU nurses.  It was a about 3 weeks after their birthday but we needed time to plan.  On the Monday after their party, August 19th was another anniversary for my family.  A bitter sweet weekend. As it was one year ago my cousin passed suddenly at the age of 41.  

My Uncle has 3 children; two beautiful daughters and his son Scott.  Scott left us too soon 1 year ago.  I have watched the hurt and the strength of my Uncle and other cousins.  The fact is once a child has touched your heart you are never the same.  Whether you spend 107 days in the NICU or 41 years together they are forever embedded in you.  

It is time to stop copping out.  How did I do it...How did I make that trip everyday to see my girls in the NICU...I needed to. I needed to see them.  They comforted me and let me know life was good.  They showed me to how to never give up.  And at only 1 month old after I returned from my cousin's funeral I made the trip to the NICU.  Our nurse unaware of where I was that day asked if I wanted to hold one of my baby girls.  And this micro preemie attached to monitors provided a miracle.  She eased my suffering.  She comforted me.  I needed her that day more then she needed me.  And she was there for me.  

I write in Honor of my cousin Scott.  He lived by the motto "Actions Speak Louder than Words!"  At the age of 40 he started dirt track racing.  On this day I raise up the number 4 (the number of his car) in Honor of him.  4ever in my heart Scott.  Thank you to my little girls for their support.

Wednesday, September 4, 2013

Making Progress

“I am a slow walker, but I never walk back.” 
Abraham Lincoln

We live in a day and age where if something isn't completed at the speed of light, we think something is wrong.  To some degree, I had this mentality with the progress Nash was making. His progress has been steady; we have been very blessed that he has always progressed and never gone backward. This is not luck, it has taken work. 

Sometimes as parents, we compare our children to the “norm.” I have found myself doing that with Nash.  I would see other one year olds and see all that they could do and would, at times, struggle with the "Why can’t Nash do that?" question in my mind.  I would catch myself and then remind myself that while Nash may have been one at the time, he was adjusted to an eight and a half or nine month old child's abilities.  Progress can be slow at first, but as we are seeing, when the wheels of progress get rolling, they can move very quickly. In the last few months, we have seen a lot of progress in Nash’s life.

Nash was born with many problems. I won’t go into ALL of that.  But one was his clubbed foot. We have always known that at some point, we would have to address this with a specialist and get it corrected.  So a little over three months ago, we met with the wonderful Dr. Herring from Scottish Rite Hospital in Dallas, Texas.  I can't say enough good about this man. Such a gentle and kind man, he treated Nash with the Ponseti Method, which is the most common method. We were told that after a period of casting, he would be fitted with braces that had a bar for his feet and would be required to wear them for 23 hours a day for the first three months, then less and less over a period of a year or more. Two weeks  ago, we went to Scottish Rite to be fitted for the braces, but much to our surprise and relief,  Dr. Herring informed us he would only need a simple splint to be worn with a normal shoe. They fitted Nash for his splint and told us to go buy him some shoes. So, Nash is now the proud owner of a very stylish splint and a rockin' pair of Nikes.  

The biggest progress Nash has made has been with is lung development and the weaning time off the ventilator. When he came home nearly a year ago, he was not only on a ventilator full time, but he was also on oxygen full time, as well. In November of 2012,  he was weaned off oxygen and hasn't needed it again. Since then, he has gone to Vent Clinic monthly to get check-ups; each month there where little signs of progress, sometimes not truly measurable progress, but progress nonetheless. A couple months ago at his check up, the doctor told us Nash only needed the ventilator night while sleeping. We were overjoyed with this news! Now we would be able to take Nash out more! Those who have dealt with a child on a vent know it’s not the easiest task in the world to take their child anywhere outside of the home. This last week Nash had another check-up with his doctor. He was super pleased with Nash's progress and said it was time for a sleep study. Nash will go for a sleep study September 3rd,  and if the doctor likes what he sees, Nash will be taken off the vent for good. This day has seemed like it would never come. Sometimes Progress Road can be hard and long, but the end result will be worth it. 
For those who are just starting the journey or might be years into the journey, I encourage you to keep going. At times it will seem like you are spinning your wheels, but I assure you, as long as you're moving forward, it doesn't matter how quickly you finish the race, the prize of success will still be just as sweet as if you had run at lighting speed or crawled all the way. In the end,  you can still say, "We did it!" 

Tuesday, August 27, 2013

I Choose Hope- Joanna Moloney

By Joanna Moloney-

Choosing hope.  It’s a big task.  A brave task.  But without hope, what exactly do you have?
When my kids were born 15 weeks early.  When they weighed under two pounds.  When they couldn’t breathe on their own. When I couldn’t even hold them to comfort them.  Hope was all I had.  
One minute I was pregnant and glowing.  The hope that filled my consciousness then was that of a young wife, excitedly waiting for her family to double.  Hoping for two healthy babies. Hoping for an easy delivery.  Hoping that we would be able to handle twin infants.

The next minute I was ordered to stay in bed for fear of delivering A&R much too soon.  And then I was admitted to the hospital.  My hope quickly turned into something much less optimistic.  I hoped that they would stay inside long enough to survive and thrive.  Long enough to avoid the complications that often come with prematurity.    

A week later it happened.  I delivered my boys even though they weren’t ready yet.  My hope quickly turned into fear.  The fear of losing my boys, who were once so safe inside me.  Soon after the reality set in that they would need a lot of intervention to survive.  Now I simply hoped for one more day.  Days turned into weeks, and after months of oxygen and feeding tubes, brain scans and surgeries, hope was still the only thing I could cling to.  I witnessed way too much sadness in the NICU to ever to feel safe.  

And even when we finally did bring our babies home, that hope lingered.  Like a shadow that didn’t disappear when the sun went down.  “I hope they will walk.  I hope they will talk.  I hope they will learn.”  Hope is what kept me sane.  

And here we are.  Almost two years later.  A family of four.  We no longer view hope as the only thing that helps us move forward.  We just do what is necessary to give our boys the same chance that others get.  We are strong for them and we love them.  

We didn’t lose hope, no.  That hope that so diligently brought us herehas simply turned into life.  
No one asks for a preemie.  No one asks for a special needs child.  But if given the choice now, I wouldn’t ask God for anything else.  And yes, I am filled with hope.  Hope for my children’s future.  Because they did survive.  And they are thriving.  

Thursday, August 22, 2013

They Make Formula That Expensive?

By Jacob Hedgespeth-

When Conor was born my wife had made the decision to nurse Conor, which I backed 100%. So we started pumpingsoon after birth, Guys I say we because it is a team effort. If your wife is going to be successful at nursing in the NICU you have to be a helper. Anything from cleaning pump parts to making milk runs to your little blessing. I was on milk runs every three hours while Taryn was admitted in Norton Hospital for 9 days. Sleep? Are you kidding me, that’s a thing of the past while you as a new father and husband are trying to keep your family afloat in a NICU! 

The hardest thing I can remember were the 3AM trips from our room in Norton Hospital across the street to Kosair NICU. Just because by that time you had made several already, and the lack of sleep really catches up about that time. But I always think of the footprints in the sand poem. There were many nights I know God was carrying me from hospital to hospital, hallway to hallway, and from my wife to my son. This isn’t easy, but it can be done fellas! I say all that to get back to my big point here. If your wife is on the fence about breastfeeding or has made her mind up to nurse, just do one thing HELP HER! 

You have no idea the amount of impact your words and actions have on a woman whom has had this important decision thrown her way most of the time unexpectedly. We nursed as long as we could, HELLP syndrome did a number on my wife’s body, I felt we were lucky to have been able to nurse as long as we did. We came home and a month after that we made the choice to put Conor on Similac Neosure which as most of you will know is a high calorie formula and is very expensive. We just got the news at Conor’s one year checkup that he can be taken off Neosure and placed on whole milk. Believe me, my wallet enjoys it but there is a big part of me that hurts to lose that little baby that I held for so long during those late nights at the NICU. 

But seeing him hit the 50th percentile in weight for his age was amazing. Here comes the full circle of this post and I credit his awesome milestones, his gains, and all that has been in his story on the great start that me and my wife gave him by nursing. Remember fellas, always be helpful, if your wife thinks she is not making enough milk, research milk enhancers, and call the lactation nurses in to help. Be more than a husband and father in the NICU. Be a hero.

Wednesday, August 7, 2013

In Hindsight: The NICU has molded, not defined, the dad I am today

By Joel Brens-

To whom it may concern:

I am the proud father of a child born prematurely. My wife was forced to deliver at 32 Weeks and 6 days after the artery blood flow in the umbilical cord became diastolic, meaning the flow was starting and stopping. On top of the direness of the situation, I was stuck at work for almost an hour until I could leave for the hospital. I arrived just minutes after my son was born.  It was the scariest day of my life. But what might surprise you is that it was also the most wonderful day of my life. I remember the moment I saw him being wheeled out of surgery in an incubator. Tiny and fragile, he was the most beautiful thing I have ever seen. I wept tears of joy. Even full of anxiety and uncertainty, becoming a father has been the single greatest moment of my life.

It's been a little over three years since that fateful day. How I have grown as a dad, as a husband, and as a person is flabbergasting. But not in the way you might think. You see, the experiences I have had in and after the NICU have molded me, but in no way do they define me. Believe it or not there is a distinct difference between to two. First of all, my son, my wife and I are not victims. We do not seek pity from others, nor do most NICU parents. The NICU is not a reason to set the bar incredibly low. While speech and developmental delays are a very tangible obstacle we are dealing with, we meet it head on every day. When people ask how my son is doing, I beam with pride, and why shouldn't I? He has already overcome so much!  

When my son is old enough to truly understand the gravity of his early birth, it will not be used as an excuse for shortcomings. His grasp of his story can and will be used as a tool to remind him he can overcome any adversity he stumbles upon. Moreover, every day he will know he has the ability to make conscious decisions on attitude, drive, and accountability. He will understand the importance of hope, gratitude, and most importantly, love. Because we as his parents make a choice every day to mold him that way.

Being the parent of a preemie hasn't defined the person you see today. But I am blessed to know it has molded the father/husband/man I am and strive to be in the future.

Monday, August 5, 2013

Godspeed Little Man

By Jacob Hedgespeth- 

I wish one year ago someone could have shown me a picture; just a glimpse of what Conor is today. A year ago I was facing the most difficult time in my entire life, and how was I to know the savior of this story was going to be weighing in at 3 pounds 11 ounces. The night before Conor was born I was in essence losing my wife. HELLP syndrome was shutting her body down and doing everything it could to rid its self of the pregnancy. Then BAM! Here comes this little superman to save the day. He stole my heart that afternoon, and I plan to let him keep it. 

In this year I have got to watch this little guy hit so many milestones, from the many NICU milestones like coming off oxygen to passing his car seat test. I have went on to fear RSV and fighting the stupid hard fight to get my son an injection to help prevent it. I have listened to his first words uttered “da-da” which melted my heart. I have let go of his little hands and watched him stumble off with his first steps at 10 months old. I will watch on July 28th as my son gets a handful of cake and gets in in every place imaginable, and Daddy will gladly clean it up! I will continue to watch all these things as he grows up but I will never forget where we came from, what community we belong to. 

As we are part of the elite, we are part of a community that few would wear as a badge of honor. We are a NICU family, and I am a NICU dad! As always I hope this reaches someone that needs to read it, they need these words right now in their journey through or leaving the NICU.

Thursday, August 1, 2013

Moms Say Thanks- Meghan Langan

By Meghan Langan-

The theme for my youngest son’s conception, pregnancy, birth, and early infancy was, “It could have been worse”. After struggling to get pregnant, my husband and I suffered a miscarriage. My husband, an officer in the Air Force, was scheduled to deploy and we decided we had no time to lose and sought out professional help. My son’s conception was expensive and painful at times, but after only two rounds of the least invasive procedures I ended up pregnant again. We were so thankful and realized that it could have been worse.

My husband left for his deployment shortly after my first trimester which was filled with bleeding and worry. We didn’t plan on his return until a month after my due date.  My older son and I stayed put at our current assignment until we got the bad news at 21 weeks. I had placenta previa which would most likely mean an early delivery by c-section with possible bed rest. And so, alone, I made preparations for the worst. Our families helped my oldest son and I move back home into my parent’s spare bedrooms in Illinois. I was a stay at home mom in a financially stable position with a family that lovingly took us in. It could have been worse!

At 31 weeks I had my first episode of bleeding from the placentapreviaIt was a minor bleed and I was put on “princess bed rest” at home. My mother found an amazing daycare for my son and her front door was a revolving door of family helping take care of my son and me. It could have been worse!

My husband’s commanders understood the delicate nature of our situation and arranged for him to come home early. A week after I went on bed rest my husband came home. I could not relocate back to our station with him and after two short weeks he had to leave us with my parents and go back to our home in Alabama. His plane touched down 12 hours before I hemorrhaged. At 34 weeks I delivered our youngest son, Nathaniel, via emergency c-section. My husband’s plane back to Illinois landed one hour after his delivery. We were overjoyed that I had made it to 34 weeks and my husband was home much earlier than we had ever anticipated when this journey started. It could have been worse!

Our son’s NICU stay was 17 days long. He had some breathing troubles and needed to learn to eat. 

My mom’s house, were we were still residing, was 45 minutes away and I could not drive. My husband’s unit arranged for him to be on sick leave, allowing us to be at our son’s bedside every day, all day, and by my breast pump all night. My son experienced only a few minor setbacks and was released from the hospital with a great prognosis. It brings tears to my eyes whenever I think about how fortunate we were because it could have been so much worse.

The man I picked to be my partner and father to my children could not have been better. Every time I fell apart, he reminded me why we had to be strong. Every time I thought we should quit, he pressed on for me. From across the globe he still managed to be the glue our family needed. I hope to never repeat our experience with Nathaniel’s early story, but if I do, he’s the only man I want by my side. After all, he is the one who taught me that it could have been worse.

Monday, July 29, 2013

In Hindsight: Looking Back

By Rob Berry-

It is hard to believe that July 21st will mark the two year anniversary of our daughters' release from the NICU. She came into this world on April 9th that year at a whopping 1 pound 11 ounces and changed our lives forever.

I was reading through some old notes/letters that I wrote during our daughter's (Hazel's) 107 day stay in the NICU and stumbled across one that I think captures my growth as a NICU dad.

July 2, 2011

Today marks day 84 in the NICU and although we have a ways to go yet, there is starting to be some early talks about what we can expect when we get to take you home.

Yesterday was Canada Day (July 1st) and mom and I were just blown away that the time has flown by so quickly. Don't get me wrong, it has been in many ways the longest three months of our lives BUT, they have been totally worth it.

This last week has been amazing for you. You got off your CPAP machine for good. You got out of your isolette and were put in a basinet and you were transferred from level three to level two. Level three is for the sickest of the sick babies, level two is a place for babies to grow bigger and stronger.

You are learning to feed on your own and you have made us proud. Apparently, preemies quite often have difficulties with feeding because they have had tubes and other things in their mouths for so long. You have been a rockstar, by your third try you have figured it out. Last night you took 23 mls of milk on your own, that is like half of a feed! Big girl? Yup!

I am sure that if you are reading this as an adult you are rolling your eyes or thinking, 'Dad, why did you think I would want to know all of this?' My answer to that? Too bad! I am doing the typing, I get to set the topic. Actually, I just wanted you to know how far you have come in so short a time.

One month ago you were on a ventilator and today you are at 40cc's of lowflow air breathing on your own. (That is like 27% oxygen). Almost there! Keep fighting!

Love always,

I look back at that piece of writing and it shows an amazing amount of growth as a parent. I read the words ventilator, three month hospital stay, you drank 23mL of milk, almost off your oxygen and think, wow. How would I have responded if someone had told me this would be what the first three months of parenthood would be like. To be honest I think I would have puked out of fear.

It amazes me what people can do when they are really up against it. I believe there are two choices in such situations, sit back and be passive and let the chips fall as they may, or learn, fight, grow and hang on with all your might. Those doe-eyed parents who walked into the NICU hours after their daughter was born were quickly replaced by people who asked plenty of questions and learned everything they could about extreme prematurity.

We became hardened. Like many level three parents, we witnessed things that our child and others sadly should never have to go through. Some of these experiences left deep scars on our hearts and minds. Prior to our trip to the NICU I had no clue such places exist.

Through the ups and downs we learned so much about life and the power of love and prayer. Hazel's NICU journey changed us forever.

When you are in the thick of it you sometimes think it will never end and you will be on that ward for EVER. The walls, they close in. Then talk of home filters into morning rounds and you get excited yet scared. Excited because you know that you will soon leave the intensity that is the NICU. Scared because you know, this is it, it will all be up to you. Factor in home oxygen or other treatments for you child and wow.

Our daughter is now 2 and has grown so much. She was sick with Roseola this week and when her fever was still really high on day three we took her to the paediatrician to make sure she wasn't suffering from an ear infection or something like that. It was more a precautionary trip than anything. The paediatrician is an amazing man and he has walked us through life after the NICU. He was proud we waited three days and was impressed with how we had really thought things through trying to pinpoint the source of Hazel's illness prior to coming in.

After the visit and diagnosis of Roseola, we loaded Hazel in the car and prepared to take her home for a nap. My wife made a statement at this point that sums everything up. She said to me, 'so that's what a normal trip to the paediatrician is like'.  Normal. It is such a loaded word but a word that at times neither of us felt we'd ever hear. It sounded so sweet.

Being the parent of a micro-preemie has shown me that nothing is impossible. At times it has pushed my wife and I to our physical and emotional limit. We will always be grateful for the gift that is our daughter. We both remain forever grateful to the NICU and what it has provided for our family. I think it's important now to live our lives and look forward. The NICU, as important as it was in our lives is now clearly in the rear view mirror.

Monday, July 22, 2013

Joshua King- My Birth Story: Mono/Mono a Mano

Joshua and his twin sons Aaden and Noah
By Joshua King-

Let me start by introducing myself! My name is Josh King. My wife, Michelle, and I reside in East Texas and am a preemie dad of twin boys, Aaden and Noah.  Our family’s story is unique in that we knew from the time of the first ultrasound that our boys would be born prematurely. 

Aaden and Noah are Mono/Mono twins.  This is a rare case in which both twins live in the same amniotic sac.  This causes the umbilical cords to become twisted and tied in what can only resemble a lethal ball of yarn. 1 out of every 10,000 twin births is a mono/mono.  1 out of every 50,000 twin births is a set of mono/mono boys.

At the time we were living in Texarkana and were referred to a twin specialist in Shreveport by the name of Dr. Jones.  Upon our first visit we had an ultrasound and then sat down to discuss our options.  I really wouldn’t call them options, at least they weren’t for us.  Before he could finish his thought about terminating the pregnancy, both my wife Michelle and I knew that was not an option.  We were told that mono/mono twins do not last in the womb longer than 32 weeks and would have to be delivered early.  In addition to that grim news, Michelle would have to be put on home bed rest at 20 weeks and be admitted to the hospital at 24 weeks to be actively monitored to make sure that both twins had good strong heart beats. 
The pregnancy was quite uneventful and went normally, with our whole focus being on that magic ’32 week’ delivery date.  On a positive note, we could fill up numerous scrapbooks with all the ultrasound pictures we amassed from our trips to Shreveport.   Michelle went on home rest and other than ‘cabin fever’ everything went according to plan.

At last the dreaded admittance into the hospital. Dr. Jones told use before we checked Michelle in that we should go have a ‘last meal’.  As clever as I am sure that sounded to him, we were not amused.  Michelle was admitted and we moved into our home for the next, what we thought would be two months. 
I drove the hour-and-a-half trip so much it began to feel like ten minutes.  It was at the 28-week mark.  We were halfway to the ‘magic’ date.  The evening the boys were born, I had originally decided not to go to the hospital, however ended up going anyway after Michelle asked me to.   That evening as we were preparing to get some semblance of rest Michelle’s monitor began to go off indicating that Twin A’s heart rate had dropped.  Within minutes Michelle was prepped and rolling off to deliver our boys.

I remember waiting in the hallway staring at the doors to the delivery room praying that everything would be ok.  The nurse on duty did her best to distract me with idle conversation, but I’m sure I was about as interesting as a pet rock.  In less than fifteen minutes my two boys came zipping past me in incubators being kept alive by breathing bags.  The NICU nurses smiled and congratulated me as they wheeled my newborn children off to save their lives. 

I remember the first time we entered the room.  I have never been more scared and grateful in my life.  I had no idea what to expect and felt very much like a lost soul.  They escorted us to their bed sides and we were allowed to touch them.  It was the most amazing experience!  The small, fine hairs on their back, their warm bodies from the lights, the noises of the breathing machines and heart monitors, how small they were, I remember everything.  Aaden was 2’11’’ and Noah was 3’7’’.  They told us that they were stable and were doing great and that our lives would be a roller coaster, and to be prepared.

I could never be prepared for what was to come.  The Sunday after they were born Michelle and I were coming home from an evening visit when we got a call from the NICU.  They left a message saying to turn around immediately and that Aaden was in critical condition.  I mean how could that have happened? He was fine not even an hour ago! We cried, prayed, and drove at a rate that could only be considered the speed of light. We parked and ran to the NICU and announced to the world we were there.  They opened the door and we burst through and were met one of the Neonatologists.  Quickly she said that they had saved him and he was stable.  I remember my body going limp and crying uncontrollably in this small woman’s arms.  This saint, this genius, this bringer of great news!  I remember Aaden looking up at us, sedated, and us just being so thankful he was alive.

Our boys spent three months in the NICU and arrived home shortly before their actual due date.  We made some great friends in Shreveport; the doctors, nurses, preemie parents, and the small ones fighting to survive all inspired us and helped us cope with one of the greatest uncertainties we have ever faced.  I thank God every day for those who gave us strength and for our two mono/mono miracles!

Tuesday, June 18, 2013

Speech Delays, Social Settings, and Anxiety

By Joel Brens

My little man is a social butterfly. He loves attention and being around others. Almost to a fault. On more than a handful of occasions, Jayden has walked up to complete strangers, said "Hi" and tried to grab their hands as if to say c'mon lets go play. Is it cute and funny? To some extent yes. By all accounts he is taking after daddy, who befriended a bum in Boston at the ripe old age of three. Apparently I was friendly to just about everybody. All the same, I do get nervous when we are in unfamiliar social settings.

One of the biggest setbacks of having daddy daycare is Jayden doesn't always get interaction with other children. Certainly not as much as he would if we had him in a structured daycare setting. That's something that bothers me a lot. We do go out and play with others, especially with his best bud C-man, but because of his speech delays, it's always a bit anxious for me when we are around new people.

At the forefront of the concern is Jayden's excitability. When he sees kids his age he gets amped up, like I just told him the most exciting news ever. While I know dozens of kids his age who are just as rambunctious as he is, I tend to find that other kids are much more docile. It makes me nervous. It makes me nervous for Jayden. It makes me nervous for the kids. It especially makes me nervous for the other parents. Jayden has an aggressive, but not confrontational personality. He will willingly take a toy right out of the hands of another child, but rarely have I even entertained the idea he would hit or push another child.

Unfortunately, that's just the tip of the iceberg. Once I know the setting is safe and stable, idle small talk begins and that's when sometimes I feel a great deal of angst. Because of Jayden's size, I haven't met a single person since he was six months old who thought he'd ever been a preemie.

Conversations typically go like this:

Me: Can you say hi, Jayden?

Jayden: Hi

Stranger: Hi! You having fun at the park?

Jayden: inaudible toddler speak

Stranger: How old is he?

Me: He recently turned three...


This is where anxiety hits me square in the face. How will they react? Why do I feel the sudden urge to explain our story? Will they play it off like its no biggie or will their be an awkward pause? Why do I feel like I need to be protective of my son? I'm not ashamed or embarrassed about his progress. As a matter of fact, I am incredibly proud of what he's been able to accomplish. However, it's something that pokes at me every time we are out and about.

I wrote a blog a while back about understanding your own reality. We never thought Jayden's life hung in the balance while in the NICU. Jayden wasn't diagnosed with CP. He didn't have to go home on oxygen. He has hit most of his milestones at a relatively normal pace. But we still face daily obstacles. Some days are a breeze, other days I am starting the countdown to bedtime around 3pm.

I've probably said this three dozen times, but I will gladly look back at Jayden's speech delays as a blip on the radar when the time comes. He is making progress every single day, and I am so proud of him. I look forward to a day I can just be carefree about a social setting and just enjoy watching him be the sweet, fun, and energetic boy I've fallen so desperately in love with.

Saturday, June 15, 2013

What Being A NICU Dad Means To Me- Joel Brens

By Joel Brens-

Being a NICU dad means so many things to me...

It means an unexpected arrival...

 Love at first sight...

It means letting go of fear and holding on to hope...

It means learning to take a hands on approach to parenting...

It's celebrating a homecoming...

Allowing yourself to have big dreams for your child...

And as the days pass and the seasons change...

Your once tiny child is growing before your eyes...

No matter where life leads, I will always be by your side...

Through laughter...

And Tears...

I will always be a proud preemie papa, and you will always be my precious preemie...

To all the dads out there, especially those still on the NICU, Happy Fathers Day!