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!"