Friday, September 28, 2012

Joe Mata- My birth story

Joe and his son Isai
Our son, Isai, was born at 25 wks through emergency cesarean and weighed 1 lb 14.6 ounces. The doctors gave us very little hope as to his chances of survival. The 75 days were, as the nurses kept telling us, a roller coaster ride. By the grace of God, he came home with only an apnea machine and a few meds and weighing 6lbs 7 oz.'s. He has a grade 3 brain bleed on one side and a 4 on the other which has caused damage but we do not know what, if any, kind of delays he might have. 

Of all the things I learned in the NBICU, the one thing I learned the most was patience, patience, patience. There was nothing I could do to help him get better but sit, wait, and pray. Every day was an accomplishment. Every day I found something new to be grateful for. I reached out to our friends and family for support and prayer. One quick story, my favorite I might add, is the morning he was born, only a few hours old and after I knew mom had been settled in her room, I went to the hospital to see him. Let me back track a bit...he was born at one hospital, then transferred to another because where he was born, the hospital did not have an NBICU. So, mom was at one place and baby at another. As I was walking down the bay to his bed, I noticed the other babies crying and moving around and when I got to him, he was lying still. The nurse immediately told me that he had been sedated to which I asked "so he won't be moving for a while then?" and the nurse replied "No". At that moment, as if on que, he raised his right arm up into the air with a clenched fist and held it there for a bit. In my heart, he was telling me "here I am dad, and I'm here to fight!" with that, with tears in my eyes and a smile on my face, I walked away knowing that God was working his magic and that my baby boy was going to be just fine. Our little warrior came home on September 11th, 2012. Even though he came home with a few medicines and an apnea monitor,he has defied the odds and truly is a "miracle baby". The road has only just begun. We still have a few battles ahead of us but with our faith, nothing is impossible!

Thursday, September 20, 2012

The best therapy on earth

As I look back on the journey we've been on with Jayden, I can't help but be thankful for every gift bestowed me. My wife's pregnancy was far from perfect, but through adversity I have grown so much as a husband, father, and person.

Writing and reading, as well as sharing stories from other dads, has been the most therapeutic form of release and comfort for me. It's funny how while I was processing the journey of the NICU while Jayden got strong enough to come home, I probably cried two or three times. Since launching POP and rehashing those feelings and emotions, as well as reading about other people's journey, I cry a lot.

Laugh too.

The best part about it? It feels great to laugh and cry it out. And it's free!!

I came to grips early on in the support group journey that circumstances do not dictate validity to how hard or easy having a child in the NICU can be. Whether its 5 days or 205, helplessness, uncertainty, and guilt all can play their part in making getting through the darkest moments trying. But hope, joy, and small milestones are also right there for the taking, but you have to choose to be positive.

As I get the opportunity to meet with amazing people, notably my friends at the Preemie Parent Alliance over the course of the next couple of days, I can't help but be grateful for all that has played out over the past couple of months.

Thank you to Aimee Sprik, who has done countless things to help me along the way, more than I could possibly acknowledge, while setting the bar high with the amazing success of Life After NICU (Support Group).

Thank you to Erika Goyer, of Hand to Hold, who has given me sound advice and helped me become a part of the wonderful team of bloggers at Preemie Babies 101.

Thank you to Keira Sorrells, of The Zoe Rose Memorial Foundation, for always being a shot in the arm, a huge cheerleader for me, and brining me on board with the PPA.

Most of all, I want to thank all of the community members for helping me get to this point, especially my contributing group (Jon, Rob, Mark, Jonah, Tom & Brian) who validated why I do this.

Support and community have given me a sense of purpose in my life. That's easily the best therapy on earth.

Wednesday, September 19, 2012

Featured Father- Nick Hall, Graham's Foundation

By Nick Hall

In 2006, my twins, Reece and Graham, were born over three months early. Extreme prematurity is incredibly dangerous – survival rates for babies born at 25 weeks are approximately 55-70%. Reece lived, but we lost Graham after 45 days. Losing him made it abundantly clear that we were facing an uncertain future for Reece. There was a time when we didn't know if we would bring her home, much less what her quality of life would be like if we did.

An experience like mine changes your outlook on fatherhood. As a dad, you usually have expectations. Maybe you're great at sports or math, and in your vision of your kid's future, they're hitting home runs or proving the Goldbach Conjecture. Even when your son or daughter is a baby, you look through the lens of what you're good at and where your parents and grandparents excelled. But for me, there were no expectations. Reece's future was trumped by her present. All I had was commitment – first to her survival, then her health, and as she grew, to her happiness and helping her thrive.

When children don't meet the expectations we invent as dads, because they can't or because they have their own abilities and interests, we are often disappointed. I wouldn't call my children's prematurity a blessing, but it did give me the wisdom to circumvent the expectations that go hand in hand with fatherhood. I literally have no idea how Reece's early birth will impact her abilities, talents, and passions. For me, there are no expectations, just excitement to see what the future holds for Reece.

Only a small percentage of dads will share my experiences with prematurity, but every dad can benefit from the lessons it taught me. Let go of expectations – they limit what's possible for our kids – and replace expectations with commitment. It's a subtle difference. You can still nurture hopes and worry and wonder about the future. Replacing expectations with commitment just means that when they inevitably turn into their own people, you can appreciate who they've become instead of who you wish they could have been.

About Nick Hall:

A nearly-fatal heart condition in his youth and the extremely premature births of his twins have helped Nick Hall appreciate what really matters. Nick's unique perspective has enabled him to see his son and daughter’s prematurity as an opportunity to share what he learned to make a difference for other families. He founded Graham's Foundation in 2009 to provide support for the parents of premature babies.  In only two years Nick forged a partnership with Pampers, and together, they have shipped nearly 30,000 care packages to parents of preemies all over the world.

Thursday, September 13, 2012

View From A NICU Nurse- Written By A NICU Mom

By April RN

Someone recently asked me, “If you had your dream job what would it be.”  My response was, “I already do.” Being a NICU nurse is my passion.  Behind our doors lies a sacred place where miracles happen and dreams are shattered.  There are babies here so tiny they can rest in the palm of our hand, babies here so sick that their bedside is a mass of equipment keeping them alive.  They are covered in wires and tubes, they are resilient and they don’t have the option to give up.   They have the hardest job in the world, they are fighting to stay alive-some win this battle while others peacefully slip away. 

Our nurses belong to an elite club.  We have an expert skill that few even know exists.  We can place an IV in a vein as thin as a piece of hair, we can read ventilator settings like a recipe, we can save a life that is just beginning.  We run to codes, we run to the bathroom we skip lunch.  We weigh our patients in grams not pounds and our calculator is our best friend.  We are perfectionists and our bedsides are immaculate.  We protect our babies from anyone who isn’t skilled enough to touch them, we refer to them as “ours” and we can tell if something just isn’t right.  We call the unit when our babies are sick, we come in on our days off when they are dying.  We place them in your arms when they are slipping away.  We are the first and last set of hands to touch a life.  We sit with you, we are silent with you we rejoice with you and we cry with you.

I am by no coincidence a NICU nurse.  In 2001 I stepped into the sacred world of the NICU for the first time.  This is where I witnessed my first miracle.  She was a tiny baby girl born at just 26 weeks weighing only 1 pound and 12 ounces.  She was born so early, and so fragile but yet so perfect in every way.  From the moment of her first fighting breath she wasn’t giving in without a fight.  Her new life entailed ett tubes, ventilators, suctioning, chest tubes, IV sticks, heal sticks, bright lights and constant manipulation.  The new hum she heard was no longer the beating of her Mommy’s heart but the hum of the oscillator that was breathing for her.  This is what it meant to be alive.

Her strength and resilience was inspirational to anyone that knew her, especially her parents.  I am the Mom of this tiny baby; she is our miracle, Isabella.  Isabella walked in the shadow of death for so long and she taught me that I took life for granted before she was born.  Something I would never be so selfish to do again.  She also taught me that I had a greater purpose in life.  I went back to school when my children were little to receive my nursing degree.  I studied in the wee hours of the morning, during naps, and when everyone was tucked into bed at night.  It was one of my greatest accomplishments the night I received my nursing degree.

I can personally relate to our families whether their story is miraculous or heartbreaking, I have experienced both.  I have experienced the triumph of bringing a once sick baby home and I recently suffered the ultimate loss of our fourth baby, our daughter. Last year I ruptured early again and we lost our daughter Lily.  Our world fell apart around us the day that she was born.  We faced our darkest days after we lost her.  Everything was so wrong.  This past year has been the most difficult and challenging year of my life.  Somehow I found the courage to walk back through the doors of the hospital where we lost Lily and go back to work in the NICU.  Surprisingly, I am at ease here; it’s where I am meant to be.  I have so much to offer our families.  I am more than a bereaved Mommy-I am a NICU Mom and a NICU nurse.  This is what now defines me as a woman and it helps me to face each new day.  My journey has shown me that I have always belonged here.  Walking through the doors of the NICU is humbling for me but I couldn’t imagine doing anything different.  It’s an honor to be a NICU nurse. ♥


Thursday, September 6, 2012

Off the Charts: A window into the world of the NICU from a nurse’s perspective

By Jodi RN

A musical rhythm of monitors and machines fills the air. The dim and dark corners where incubators are lined in a perfect pattern all adorned with name tags in an attempt to bring some normalcy and personality to the stark hospital world. The hustle and bustle of nurses, therapists, and doctors moving almost rhythmically bed-to-bed. Tiny babies with shiny translucent skin lay dependent on a wired world. This is the NICU. Where we celebrate new life and grasp for it all at the same time. It is a mostly happy place, mostly positive, and very inspiring but sometimes it can be intensely devastating as well.  There is immense responsibility that lies behind the doors of this world. If you don’t live it, you just won’t get it. It isn’t a job for anyone, for any nurse.

It is a special unit where we dedicate not only our time but our heart and our soul into a place that never closes, where fragile babies and their parents depend on us for comfort, for care, for prayer, for answers, and for miracles.

Nurses are not only the face but also the hands and heart of the NICU and the voice of so many vulnerable tiny patients.  

Even though it is a place nobody wants or expects to end up- it really is an amazing place. As a nurse, it stamps our heart and feeds our soul. It is a reminder that there is magic even in the small moments and that the little things we do all add up to some pretty profound and life changing events.

These babies are pint-sized heroes. Tiny, fragile, yet courageous and brave- and one of the most amazing stories anyone can be part of. As a NICU nurse I am in awe of their resilience and their strength. I smile in admiration of their determination. I applaud and rejoice in their parents, whom despite self-doubt an immense fear perform the first diaper change even through all the tangled wires and cords. I smile at the way they stand up and stand proud even through times of sorrow and heartache. I stand speechless in the amount of patience and love their parent’s give wanting nothing more than love and an ounce of hope in return. I too hope on behalf of the fight. I too join in on the fight because no baby and no parent should have to face this fight alone.

Fighting this battle can be trying, tiring, and frustrating along the way, but more importantly very rewarding too. Saving the life of one of these babies, seeing them thrive and survive and being there supporting parents every step of the way is the greatest gift and privilege I could possibly ask for. I am, and forever will be grateful for the opportunities I have been given working in such an amazing place…and there really is no place I’d rather be.

“The only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle. As with all matters of the heart, you’ll know when you find it” ~S. Jobs

I have been a Registered Nurse for 16 years and currently work full time in a single room family centered care level 3 NICU.I am a member of NANN; National Association of Neonatal Nurses, A Developmental Care Specialist, BLS and NRP certified as well as S.T.A.B.L.E. trained. I am the creator and owner of and as well as the Peek-a-Boo ICU Facebook page and Twitter feed. was created to provide information to parents that have or have had a premature baby or a baby in the NICU and seek support from those who have been in a similar situation- as well as empowering parents with the knowledge necessary to make it through the tough times that come along with having a child in the NICU. All too often the information given in the NICU is full of medical terms that are so hard to understand. Through the website, I hope to make it easier for parents and families to understand some of what they may be experiencing and empower them with knowledge. The Facebook page was created to have a place where parents can go to find support and understanding from others who may have, or are going through some of the same things on the Preemie journey, from its start in the NICU through the childhood years.

- Jodi RN

~Empowering the Preemie Parent~

Wednesday, September 5, 2012

A Tribute To My Wife

When I watched Maria hand Owen to the babysitter (Miss Janet we'll call her) this morning I couldn't help but smile and reflect on how far we've come. Just a year ago, we were still sitting in the NICU with Owen as he battled the complications from Congenital Diaphragmatic Hernia (CDH) surgery.  
Today we were dropping off a pretty healthy baby boy, and my wife was going back to her job as a high school teacher.  
I would never discredit those that have been through this and lost their battle with CDH and say today was hard. It wasn't, it was a miracle and a blessing to be able to have this day. But  today the true blessing in my life is my wife. So Maria, the only way I can Thank You, is by telling the world how I feel.
Thank you for the countless hours you sat in the NICU with Owen. For all of the daily rounds you sat in on while I was at work. For holding his hand during the daily procedures, the moving of the PICC lines, the upper GI, the ECO's.
Thank you for holding us together during the infection and reherniation scares.
Thank you for giving up your job, for changing your life and nurturing our son back to health.
Thank you for the numerous times a day you had to change Owen's and your own outfit while we battled through feeding issues.
Thank you for delivering him, and the 25 hours of labor you endured knowing that it was in his best interest to come naturally. For sleeping in his POD putting your own health aside after delivery to be with him.  

Thank you for the days you spent teaching him to say, "Dada" so he would say it to me on Father's Day. Thank you for holding me together when we came home without Owen to a flooded basement after Hurricane Irene.  
Thank you for the research you do, to make sure he has the best toys that will help him catch up and for sitting with the PT every week.  
So today, as we celebrate the opportunity to move on, I wanted to let the world know how special it is to be a CDH Mom, and to Thank You for all that you have done, and all that you continue to do for our family and other CDH families.  

- Love, Mark