Thursday, August 20, 2015

You've Come A Long Way, Little Man

By Joel Brens

There are moments in life that will stick with you through it all. Memories that are a great reminder of all the work you have put in, all the blood, sweat, tears, and most importantly, joy, that comes with being a parent. These moments also lend hope to all that is possible for the future, and as a parent of a preemie that is something I think we all can relate to. It hasn't always been easy. Sometimes we've feel like we have more questions than answers. I have felt more joy and sadness over the last five years of my life than I had in all my days leading up to being a parent. There's nothing quite like it. Looking back on all that has transpired over Jayden's first 5+ years I often have to pinch myself at how far he has come.

Today we put Jayden on a bus to go to a full day of kindergarten. Wow. It's a far cry from the isolette and CPAP machine he used in his early days in the NICU.

I'd like to share five thoughts with you about what our journey has been like to reach this moment...

1. I still have absolutely no idea what I am doing, and that's ok. You can read all the books you want, take in all the advice, whether it's warranted or not, try all the latest parenting strategies, etc. The reality of it is there is no blueprint to parenting, especially for those of us who have had children in the NICU. What might work for 90% of parents may not work for you. Perhaps your parenting style is a bit unorthodox, but find something that works for both you and your kids. Moreover, there are times when something that has worked out great that suddenly doesn't work as well. Best advice? Change your dance step. It'll work out.

2. Be a voice for your child. I think it's fair to say that the doctors and nurses care for your child with best intentions in mind. That being said, there are times when parents and professionals may not see eye to eye on things, and they key to finding resolution is to have open, respectful communication. This especially rings true once your child has come home from the NICU. Doctors and nurses at family practices, among others, only get a small snapshot of your child. The best way to address things is to try and have honest dialogue about what your are seeing. Personally, we would rather go the extra mile and leave no stone unturned until we feel like we are headed in the right direction. Be a champion for your child.

3. Things don't magically go back to normal once you bring your child home from the NICU. That may be hard to read, but it's the truth. The reality is we all have different levels of obstacles and challenges we face as our former NICU kiddos grow up. Sometimes it's really hard to put things in perspective. While Jayden has come incredibly far from where he was three years ago with Early Intervention, we still have a ways to go. Over five years of "holding my breath" as we move to bigger and better milestones. It has been exhausting. But it has also been oh so rewarding. There have been times where I have felt overwhelmed with any given set of obstacles, only to come out the other side beaming with pride and relief. When your in the trenches, it's sometimes hard to see the progress that's being made. But when people who see your child less frequently are gushing about the progress being made, eventually you need to believe them. I challenge you to spend 10-15 minutes a day just observing your child. You will find new things they are picking up on every day.

4. Being the parent of a preemie has been such an unexpected blessing. I'd be lying if I said I haven't thought on a handful of occasions how different life would be had we had a typical pregnancy. But it wasn't meant to be for us. The best part about it? How I have grown as a person and who I have gotten to know along the way. Having a NICU baby lends perspective to things. While I have always been a bit of a worrier, I have been able to sift out a lot of the unnecessary baggage that used to weigh me down. Do I still have the occasional rough day? Of course I do. But being a parent gives you a sense of responsibility that can put such a positive impact on your life. I am ten times more patient than I used to be. I have leaned to adjust when life has throw a curveball or two-hundred. More importantly, I have been incredibly fortunate to meet and work with a community of people who I otherwise would not likely know. There are dozens of people who I know and care about on so much deeper of a level than just "Preemie Parents". What a blessing. I'd encourage you to connect with others as well. It's been life changing for me.

5. Success is a team effort. I cannot imagine what this journey would be like without the colossal efforts my wife has put into parenting our son. Giving your child the best chance for success means you and your wife, husband, partner, or significant other need to work hand in hand. For my fellow dads- that part of the journey begins as soon as your child is in the NICU. Ask questions, be as hands on as possible, kangaroo with your child, change diapers, clean pumping parts. Anything you can do to be there will make a difference. For all the mamas- be patient with your partner, and understand this is a journey from the get go for them too.

I hope that my perspective has helped you in some way or another. It's not always easy, it's not always fair, but if you leave enough room in your heart for hope and love, great things will happen!

Sunday, January 18, 2015

Shoes: A look at Special Needs Parenting

By Joel Brens

Have you heard the phrase "You don't know a man's journey till you walk a mile in his shoes?" It's a tired, somewhat overused way of expressing that we really don't understand the struggle of others. That being said, in so many cases, it rings so very true. I spent the better part of two years blogging about the ups and downs of parenting a preemie baby in and after the NICU. As much of our journey in the NICU has changed me, our journey beyond it has also been a vast growing and learning experience.

While a majority of us share similar circumstances, specifically a stint in the NICU, the dynamics and circumstances can be vast in comparison. My son's life never hung in the balance, he wasn't diagnosed with ROP or CP, or a great deal of other conditions that can provide steep challenges and adversity for parents. That being said, my son is a special needs child, and the day to day struggle is real.

There are days when I don't give our obstacles a second thought, be it a byproduct of routine or the dozens of daily activities we cycle through without conscious. Then there are days like today where we run evaluations in hopes to find clarity on what we are dealing with. Without choice, it puts are concerns to the forefront of our minds.

I have cried a lot over the first four years of Jayden's life. Sometimes because I am overwhelmed, others because I am overjoyed. Sometimes both.

I am constantly juggling a crisis of conscious regarding my parenting styles. Trying to find a balance between the old school parenting train of thought (discipline, tough love, consistency, enabling, and the like) and understanding that what we are dealing with in regards to sensory issues and behaviors, simply, is not that simple. Without knowing what exactly we are dealing with and more importantly, how to address it, it's like trying to juggle with your eyes closed.

This is not a plea for sympathy, but a testimony to what Gena and I, as well as many other special needs parents are facing day to day.

My shoes may not be polished or perfect, but they fit me just right.

Wednesday, June 25, 2014

Preemie Dad Updates

Just wanted to give you all some updates on a few of the dads who have been contributors to the group...

Joe Mata

Going on 2...WOW! 

On the 29th of this month, our little warrior will be celebrating his 2nd birthday.  I can't help, and it happens quite often, but think about the battles he has fought at such an early age.  I find comfort in the thought that our son will never remember the pain of IV after IV, all the needle sticks, the time alone in his islet, and on and on. But I also sit and think about how far he has come. From a 26 wk old micro preemie weighing 1 lb 14 ounces, with grades 3 and 4 brain damage, to now a 35 pound active bundle of a boy. He has been receiving physical and occupational therapy since he was 6 months old. He had speech therapy for a few months but quickly 

The therapy continues and he is progressing week after week, but every day is a blessing and we find something new to be thankful for.  He is not walking yet, but that does not stop him from going everywhere and getting into everything.  Isai is becoming very vocal and is quick to show his disapproval when he does not get his way.  He still has a long road ahead of him. As much as he is progressing, there are things he still struggles with.  He still has difficulty using his right hand and arm.  Things like reaching and grasping still present a challenge but he is determined to overcome. 

Though the road ahead is still long, I know that with God, nothing is impossible.  I know in my heart that our son will grow to be perfect, the way he was meant to be.  To the regular person, Isai is a normal, happy go lucky little guy.  To me, he is my hero.  

Rob Berry

Our daughter Hazel recently turned three. She is a former 24 weeker and has come so far. Hazel loves to read books, play outside on the trampoline and enjoys making all sorts of Playdoh creations. She knows the alphabet like nobodies business and can spell and read 10-15 words.

Hazel is heading to preschool in September where she will receive speech-language assistance. She is a happy, healthy, 'normal' three year old. The NICU was such a scary time in our lives but seeing our little girl thrive makes it all worth while.

Jordan Stowe

Adeline Marie Stowe was born at 3lbs 12oz, and is now a very healthy 19lb thirteen month toddler.  She is getting on track with her milestones.  It has been a very challenging year for us, and since the NICU.  She is definately finding new lessons to teach us each day.  Her pediatrician remains happy with her progress, as well.  

Addie is just full of life and loves to laugh at everything.  We have spent a small fortune on elaborate toys and stuffed animals, but her favorite toys remain my car keys and our smartphones.  This fathers day I'm looking forward to spending it with my wife and daughter, Shanna and Adeline.  

Last fathers day, Addie had just come home from the NICU and it was very interesting to say the least.  But, I was with my new formed family, and now, that's all that matters in this world. 

Joel Brens

It's so strange how your life changes as your child grows out of the "preemie" stage, with milestones and obstacles steadily changing. We have come a long way since Jayden was born seven weeks early. It's fair to say we all have learned and grown as a family; Gena and I as parents and Jayden as a growing toddler. 

I am so tickled by Jayden's progress, especially over the last six months. To think about where we are in regards to Jayden's speech as to where we are when we started Early Intervention services when he was two is mind-boggling. While he still has a way to go, it doesn't put the weight of the world in stress on it like it used to.

Jayden is making new friends at his preschool extended school year program, and he will be back with his same teachers when the regular school year comes around in August. We certainly feel blessed to work with amazing staff.