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!

Thursday, June 13, 2013

What Being A NICU Dad Means To Me- Mark Brislin

"And once the storm is over..."

It was Sunday night, three days after my son was born. Just a few feet away, he lay in his isolette, connected. The monitors were silent, the NICU was hushed. I could hear his breathing, labored but consistent. The sound of the suction tubes hissed. Next to me, my wife slept on a chair. The pain of delivery and the emotional situation was painted on her face. I could never understand what her dreams were like, but I knew the real nightmare was playing out outside of our dreams.
I sat by the window and stared into the Manhattan darkness. Below, Hurricane Irene was driving up Broadway. A usually bustling community was silent, nestled into their homes waiting for the storm to pass.
I could feel Irene's energy against the window. At one point I looked into the flash of the lightning hoping to see God. I spoke to him, and told him that once this storm is over, I understand what I needed to do.

"You won't remember how you got through...."

Almost two years have gone by. My son is 21 months old. I love him. I love being his father, and all that comes with it. There are many good days. Sitting him on my lap while I read him a book, or the nights he says, "good night dada" are memories I cherish.
But I also remember the tough times, the surgeries, the constant vomiting, the unknown, leaving him in the NICU and going home, going back to work.
It's all part of being a NICU Dad, and I've accepted both parts of the responsibility. I remember sitting in that window, but I still don't know how we managed to get through...

"...But one thing is certain, when you come out of the storm, you won't be the same person who walked in. That's what the storm is all about." - Haruki Murakami

It's easy to find inspiration in a story with a happy ending, or simply go back to being the person you were before. But for me, ending the story eliminates the message that I asked God for on that night in the window. So being a NICU Dad means being responsible for the next Dad who has to walk in my shoes. It means continuing to share our story to provide hope, support and comfort.
I'll never again be that person who walked into the storm. I've come out of it, much stronger, much more determined to accept my role and to lead a path for my family and those other Dads who will walk into the storms to come.
(Dedicated to those Dads spending their special day in the NICU.)

Below is an image from their NICU pod just before the storm hit.

Tuesday, June 11, 2013

What Being A NICU Dad Means To Me- Thomas Doty

By Thomas Doty-

I am a strong believer that playing sports teaches you a lot about life. Many great qualities are learned; team work, faith in others, dedication, discipline and humility. I also believe being a NICU Dad is like running a team.

The coach has to assemble his players, coaches and advisers. They need to pull in a common direction to have ultimate success. There are financial, emotional and personal concerns to balance. Sometimes hard decisions are made that may not be popular with people but they are what is right for the greater good of the team. You have to discipline your players when they are wrong and encourage them when they are done. All the while you are being analyzed and judged by those who are not in your shoes. They will determine your success by wins and losses. A winning record is deemed successful and this is often an unfair measurement of success.

Being a NICU dad is the same to me. You are assembling the best team of doctors you can. You have faith in other to perform actions you cannot do yourself and hope for successful outcomes. You balance the stresses of work, financial responsibilities, and emotional concerns of the family. You present a strong front to the outside world even when you are hurting deep inside. You are judged by others and your kids are looked at differently because they may be behind in their milestones. You know you love your children and understand sometimes you will have to discipline no matter how hard a road they had. That is being dad, it’s your duty. Their success is based on reaching milestones. This is an unfair measurement to me. If my child is delayed that does not make them unsuccessful. If they reach their fullest potential whatever it may be then they will be successful. They already are because they are alive. Being a NICU Dad is being part of a group of people you hoped for but would never trade it in the world. I believe we each look at our little ones with a clearer understanding of what is success and what is important in life.

Sports are filled with statistics and so is the NICU. Statistics are numbers that can be manipulated to strengthen ones argument. However, the best team on paper does not always win the game. That is why we play the game. Our children are the underdogs and you never bet against the underdog. They will amaze you.

Monday, June 10, 2013

What Being A NICU Dad Means To Me- Rob Berry

By Rob Berry-

I love being a dad. Let's just get that out of the way. Nothing beats coming home after a long day at work and seeing your wife and child smile as you walk through the door. Nothing.

I always knew I wanted to be a dad. I'm not sure all guys grew up thinking that way, but I did. My mom and dad separated when I was very young and that had a profound affect on my life.

My parents did the best they could while my siblings and I were growing up and I love them both dearly. My mom was my rock growing up, the one person I really truly felt understood me. I saw my dad every other weekend and for extended periods over the summer and I love him dearly, it was just different.

I suppose those early experiences in life really set the tone for what I wanted my children to remember me for. I was going to be the dad that was always there, always involved and engaged in my kids lives.

Imagine as I might, I could never have anticipated the intensity level which surrounded having a child at 24 weeks. Looking back at it now, it seems like some sort of distant memory, a really bad dream. My wife and I had often talked about what it would be like when we became parents. Our reality was nothing like what we thought, we were staring face to face with the reality of having a micro preemie.

Watching your child fight for their life on a daily basis is a difficult thing to explain to someone unless they've been through it. Feeling guilt because our child survived while others didn't, is an emotion I did not expect to experience in my lifetime. Raw, numb, pain mixed with the sheer and utter joy of becoming a dad for the first time, wow.

My wife and I went through a lot during our daughter's 4 month stay in hospital and in the year after she came home. We both dealt with PTSD as a result of everything and at times have felt completely and utterly exhausted. My wife carried the load of being home with our daughter during RSV season that first year and did such an amazing job. I will always be grateful for what she did and for the amazing job she's done raising our daughter.

Being the parent of a preemie brings perspective. I have had the opportunity to meet some amazing people through this experience. They have given my wife and I strength and the courage to keep going.

We have also been contacted by a few people since our daughter's birth who were facing friends and family members who had delivered preterm. These scary moments have allowed my wife and I to pay forward so much of the help we received and in that way what we went through as a family is completely worth it. We are less vocal than many families who have had a preemie but are always willing to support people going through such a crazy experience.

I look at each day with my young family as a gift. Seeing our daughter's toothy grin as she rips around our backyard trying to pop bubbles makes it all worth while.

There is an old saying which states, 'Nothing good in life comes easy'. Being the parent of a preemie is hard work, especially if they come home still facing medical issues. It pushes people and families to the limit. My family was lucky enough to hear the words from our paediatrician a while back that our daughter has come so far and is now just a healthy kid. Two years of blood, sweat and tears mixed in with the grace of God got us to this point.

When all is said and done, being the parent of a preemie has taught me that I am tougher than I could have ever imagined. When it comes to my wife and daughter there is nothing I wouldn't do for them. It has also taught me to count my blessings everyday and to appreciate the little things in life. Being an NICU dad has given my wife and I our amazing little girl. She is the best gift either one of us could have ever asked for.