Friday, July 27, 2012

Dealing with emotions and uncertainty as a NICU dad and beyond


Making a connection
By Joel Brens

Let me start by putting this out there: Dads do not get a fair shake in the family picture. Period. When it comes to family, dads are a distant third behind mom's and children in regards to emotion and mental stability. While the bond mothers have with their children is something I can't understand, I felt a connection with my child immediately. I was hooked! And terrified. And uncertain. Most importantly, I refused to be ashamed of those feelings. It took me all of three days to notice the surprise in people's face at how passionate, active, and involved I was. Why is this a "big deal"?

Oh that's right, we are constantly reminded via radio and television we, as men, need to be tough and manly and grow beards and be handy with a set of tools. That's cool. In some ways that's fairly accurate depiction of men. More so, I am all about sports, beers with my boys, and watching action movies. I also had a rough go of being a NICU dad. Being thrust into life as a parent sooner than you scheduled cuts right to the core of your being. You find out awfully quick how you respond to adversity you have little control over. My first response was to be stable for my wife Gena. I knew she was dealing with a lot of anxiety and guilt with how things played out, but it wasn't her fault.

For me? I was struggling. I am the type who can handle success and failure when it's a direct result of things under my control. But in the NICU? I felt like a lemming the first couple of days. Wash your hands here, sit down here,  and stare at a monitor for a few hours. I felt like a victim. I was numb for a while. We were so blessed to have a wonderful team of doctors who were willing to answer every question we had, and when we got the green light to be more involved I started feeling like an actual parent. The NICU nurses were great too. One in particular had the uncanny ability to be funny when we needed a laugh, be honest when we needed advice, and be supportive when we felt uncertain. I remember holding my breath as we saw steady progress from Jayden and got closer to bringing him home. Then, 25 days after our little miracle was born, we got the chance to be full time parents.

Since we have had Jayden home, I have grown so much as a person. I am more in tune with my mental health. It's important to know that just because we were home with our son, life didn't change back to normal like flipping a light switch. Winter and germs? Terrified. Gaining weight and getting stronger? At least early on, it consumed me. But my biggest fear and uncertainty? Development. No question about it. We were told that as parents of a preemie we wouldn't be able to fully assess his progress until he was two years old. You're telling me it's a waiting game for 23 months until we REALLY have an idea where he is at? I don't think a night has past since we were told to be patient I haven't though about it. At 26 months old, we have had Jayden working with speech and developmental therapists to help him with his speech delays. He's such a happy baby, and great with others his age. I am forever grateful for that. He and I have a special bond, one I had hoped we could forge that means so much to me. I constantly shower Jayden with love and attention, and I wholeheartedly believe his personality is a reflection of the time Gena and I put into being parents.

So how did we get here? To a point were we can overcome adversity and uncertainty? For me, my faith has helped a lot. That may not be the case for everyone, but it certainly got me through my darkest hours and days. Finding support through others has been huge, too. When I struggled recently with Jayden's speech and development assessments and his looming EEG, support through close friends and community groups were so important. I have felt a lot of things as a dad. A loving, joyful, uncertain, scared, proud, and faithful dad.  That's something no dad should ever feel ashamed of.






Wednesday, July 25, 2012

Upcoming Event

For those of you who are from the greater Chicagoland area, Papas Of Preemies, with the help of Eli's Hope will be hosting a community cookout on August 18th. Please refer to flyer posted below. If you are interested in joining us you can email me at papasofpreemies@gmail.com or by confirming via our event page on Facebook.

Tuesday, July 24, 2012

Dear Nash


Dear Nash,
Wow this is some journey you are on. I am so proud of you, your strength and will to live is greater then anything I've ever seen in my 31 years of living.  You are truly living up to your name. You see, we named you Nash after your great grandfather. He was Colonel in the Army, and he didn’t take any slack from anyone, much like you. He was hard headed, and things had to be done his way and when he wanted them done. We named you after him because we wanted you to be a strong ,Godly man. I never knew how fast you would live up to that name. You are the strongest person I know. You amaze me daily with all you have to put up with. Someone is always poking or messing with you and you just lay there with such a calm look on your face.  But sometimes the hard headed nature of your great grandfather comes out in you and you bite the RT’s finger and wont let go. I must say this was a very proud moment for me.  You have shown me that anything can be done with enough fight and faith, mountains can be moved no matter how big.  I can't wait to play catch with you and teach you all the things I know. We will play in the creeks and build forts and get really dirty like boys should. And we will do things that make your mom give me 'the look'. Trust me, you will find out about that look soon enough.  I can't ever express how much joy you have brought into my life. I will never  understand why things happen the way they do, but I will never complain. Because you were born 3 and half months early, I look at it as a blessing I have been given extra time with you to love and hold you. The future is so bright for you. I know you will change the world in your own little way. God has a mighty big plan for your life and I’m glad He chose me to help you fulfill it. So you take this time and rest, my little buddy. We have a lifetime of adventures awaiting us.

With All My Love,
Your Dad

Monday, July 23, 2012

Happiness


Over the past few weeks, I’ve explored some of the darkest, deepest feelings new moms and dads experience when their medically fragile preemie is doing time in a NICU. Most of these feelings (fear, anger, guilt, etc…) are hard to characterize as anything warm or fuzzy. There is so much about the NICU that I’d rather just forget - I can think of no other gloomiest time in my life.
Something happens when your life takes a giganitic turn for the worse in such a short time. Your expectations get lowered. The bar is set much lower. Your glass, even if you’re an optimist, is often half empty.
When our son, Jack, was born at 23-weeks, we were correctly told the statistics were not in his favor. When he suffered bilaterial grade 4 brain bleeds two days later, we felt some pressure to let him go. His “quality of life” would not be good, we were told. With each passing week, there was a new surgery or prospect of surgery. I knew he was in pain and there was nothing I could do about it. I was devastated.
But something also happens that you never expect when you’re in your darkest depths – you experience joy and happiness like never before.  
The day his fused eyes opened up was a thrill. When he moved off the ventilator to CPAP, we were ecstatic. The first time we heard his little squawks that were no longer silenced by the ventilator, we were jubilant. As he was taken out of his isolette and put into a crib with his own miniature clothes, we were on cloud nine. And after four long months of a NICU stay 120 miles from our home, I don’t think any parents with a typical baby experience could have been more elated and proud to be taking home their child than we were.
Now three years later, the joy continues to this day for the smallest of victories Jack has. On the day when he was able to sit up on his own, we were delighted. As he learned to pull himself up to a standing position, we celebrated. When he took his first steps, we knew we were witnessing a miracle. All of those experiences are fun and special for any parent, but not every parent feels like they are blessed by those tiny milestones like the parents of children who struggle so hard just to accomplish the simple things we all take for granted.
Jack has and will continue to struggle with some of life’s most basic skills and challenges. What he has shown us, however, is that he is not content with defeat. We will cheer him on and celebrate ever victory, no matter how small. He makes us feel like the happiest parents on the planet.

Friday, July 20, 2012

A Year To Remember


Summer is off to a great start. The temperatures have been above average, there has been lots of sun and I've had a chance to catch up on some much needed rest. Life could not be any better.

It is hard to believe that on July 21, it will be one year since we brought Hazel (our little 24 weeker ) home from the NICU.  In some ways it feels like years have past and in others it feels just like yesterday.

How has life changed in that year? I think the better question is how hasn't it changed. Becoming a parent is the most amazing experience that there is.

Recently my wife and I have watched our daughter's personality grow in leaps and bounds. Hazel is her own little person and certainly knows what she likes.

I find it so interesting that Hazel carries so many of our personality traits with her at such a young age. She has her mom's strength, drive and determination and we have no doubt that is what helped Hazel do so well. What we are still trying to figure out is, where did that curl in her hair come from?

As I look back on our year it has been one of many highs, mixed in with some tremendous lows. Being the parent of a micro preemie is hard work.

We are still so grateful to the doctors, nurses and RTs who taught us to care for our special little girl. Bringing Hazel home on oxygen was scary, she definitely needed it and we worried it would slip out at night while she slept. Her face suffered many heavy tape jobs so we could feel comfortable her cannula would stay in place while we slept.

The hospital staff taught us all sorts of tricks and tips which we were able to rely upon. They must have taught us well because the few times we had minor issues at home, my wife and I quickly did what was needed and it felt so natural.

Then there was our home RT, Cheryl. I don't even know how to begin thanking her. She was highly recommended to us by the hospital and after our first home visit we knew why.

The best way I can describe this amazing person is that she was a gift from God. It was clear from the get go she loves her work. She was so good with Hazel and she always remembered her little nuances.

Cheryl was a wealth of knowledge and walked us through RSV season at home. She also took the time to talk with and counsel my wife and I. She recognized all the trauma we'd been through and was a great sounding board.

At the same time, she wouldn't allow us to wallow in our feelings of fear, guilt and anguish and encouraged us to live our lives to the fullest and remember to enjoy our daughter.

It took a while but we got there. The first week of summer vacation has been amazing. No longer are we locked in the house, staring at the walls. We are out and about on a daily basis and are soon departing on a road trip/ beach vacation at Grandpa's house. A year ago, that sort of stuff was the furthest thing from our minds.

To parents of past NICU preemies who are older now, I hope this season brings you a set of great new memories full of love, laughter and family.

To parents of preemies in the NICU now or who have recently brought their little angels home. I hope that you find comfort in family and friends during this time in your life.

I know that it is easier said than done, but I always tried to find one thing I was grateful each day.
 
Some days were easy like when we brought Hazel home, watched her eat solids for the first time and when she finally left the oxygen behind her in February.

Others days were tricky with setbacks, being shut in the house and feeling like nobody else understood what we were going through.

On days like that it felt like there was nothing to be thankful for. Once I settled down, I knew enough to thank God for giving us our little girl and I reaffirmed my promise to myself to be the best husband and father I could be at all times, no questions asked.

Sometimes as a guy that is all you can do. I have certainly made more than my share of mistakes along the way but nothing is more important than being there for the people you care most about.

As the summer continues I look forward to creating more memories with my little family. I have no clue where life will take us and I am ok with it. Life is a journey, not a destination. I can't wait to see where we go from here.

Thursday, July 19, 2012

Early Intervention- Monkeys, Snakes, and Cows...Oh My!

By Joel Brens
 
I knew going into speech and developmental therapy that it wouldn't be an overnight process. Like most therapy processes, it takes patience, hard work, diligence and time.  It was tough going into a new venture with little knowledge of what to expect. When we were recently informed that it was unlikely that Jayden's speech delays were a result of seizure like activity, we were most relived. It has been almost two months since we began Early Intervention, and we are starting to see the fruits of the labor, however big or small.

The first noticeable change was his ability to focus and interact with the speech and developmental therapist. The first few times he would lose interest with activities quickly. But as time has passed his ability to stay on task has improved drastically. He still has occasional meltdowns, and on those days he typically only wants to interact with toys he is interested in. We've found if we leave Jayden alone with the therapist his focus is much better

I would have to say my favorite recent development is his ability to imitate noises, specifically animals, and object recognition. Within the last couple of couple of weeks, Jayden has learned how to imitate the sounds of Monkeys, Bees, Snakes, and Cows. I wish I could put into words how much it makes my heart beam. He can also imitate noises like the sound of a train. In addition to his new found ability to imitate sounds, his ability to point out objects from a first word book on command is very encouraging.

Finally, he has started to say words like "Baby, Nigh Nigh, Hi, and All Done". Every morning we are hopeful that he will say a new sound or word. Slowly but steadily he is showing the signs of improvement, and I couldn't be happier about it.

Wednesday, July 11, 2012

Guilt

Families and friends of preemie parents may never suspect the new mom and dad of a fragile baby may be experiencing an odd feeling as a result of the early delivery. It’s a feeling that usually comes as a result of having committed a wrong – a mistake. I’m talking about feelings of guilt.

In the swirl of emotion that caused unspeakable physical and mental anguish during our 119 days in the NICU, guilt was a regular feeling I experienced as I looked for answers. When my son, Jack, was unexpectedly delivered at 23-weeks gestation, it happened in an avalanche of bad circumstances that flipped my little family’s existence in just a 24-hour period. Once we had gotten past the treacherous first trimester that can often lead to miscarriages, my feelings had shifted away from any trace of anxiousness to pure anticipation. But as I stood within the walls of the NICU staring at the tiny one pound frame of my micro-preemie son, I was left wondering, “What did I do so wrong?” and “I’m sorry I failed you son.”
This may be hard for an outsider to understand. I knew I really hadn’t done anything wrong, and neither had my wife. To be sure, most premature births aren’t the result of negligence on the part of the parents. We saw a few babies in the NICU that appeared to be there as a result of drug/alcohol abuse. Like most parents, however, we were absolutely thrilled to take the progeny plunge and were diligent in our pre-parenting.
As we all know, however, feelings don’t always stem from rationality. Why should someone feel guilt for a circumstance totally out of their control? I don’t know. I can’t explain it. I just know I felt it. I felt sorry for the pain my son was experiencing. I felt sorry every time they had to prick his miniature foot for blood. I felt sorry every time they explained his likely diminished “quality of life.”
Naturally, a primary sense programmed into our DNA as new parents is to protect our children. Fathers especially have an ingrained predisposition to provide, defend, and shelter. As a new father, I felt like I had failed at those things. We know that dads are already slightly reluctant to open up about their NICU experience. It exposes elements of us that society may view as weakness, or outside the mainstream view of males as emotionless brutes. I have a hunch, though, that if more dads fully opened up about their struggles in the NICU with a fragile, new baby, many would say that feelings of guilt would sometimes crop up. I suspect several moms have gone through this as well. Although irrational, it is likely typical.
Like all of the negative emotions that come from the NICU experience (already talked about fear and anger), there is no quick and painless way of casting guilt aside. Honestly, I can still look at Jack, think about all of the pain and struggles he has seen outside the “normal” childhood experience and wish I could have done something to spare him from those things. But I also have the benefit of hindsight – of perspective. Now three years old, Jack is such a happy boy with an unmistakable love for life. Those inexplicable feelings of guilt are overwhelmed by a sense of thankfulness, hope for the future, and probably a deeper love for him than I ever could have had under normal circumstances. I can look through less cloudy lenses and have more peace that not only is there no reason to have guilt, but it can keep me from doing what I want to do for my son – be the best dad for him every day so I never have to say, “I wish I would have done more.”  

Tuesday, July 10, 2012

Moving Forward


"You have to move on, your little girl is big now and is strong and healthy, You can't baby her."

These are words that all preemie parents have heard from well meaning individuals in some way, shape or form. They used to frustrate even infuriate me, how could someone be so insensitive? Slowly, my thoughts have changed.

It is true, as I look at my daughter laying asleep in my arms, I can't help but think of how beautiful and simply perfect she is. As I sit here and reflect on her NICU journey, I am blown away by the difference a year makes.

To look at Hazel mere weeks before her turning twelve months adjusted, most people would have no clue she was a preemie let alone a 24 weeker.
 
She has chubby cheeks, a big tummy and a seemingly endless supply of energy. She flies around the house, screams and yells with the best of them and is in to absolutely everything!

It wasn't always this way. Born weighing 1 lb 11 ounces she has certainly had her share of ups and downs.

The joy of seeing her thrive today is still sometimes tempered by the conditioning this daddy developed in the NICU. There, I found myself always waiting for the other shoe to drop.

It seemed like for every step forward there were often two huge steps back. Is it any wonder that the first sign of trouble brings those raw emotions back with a vengeance?

Yet, I have zero desire to live my life in fear of what ifs. To do so would be a detriment to my family and would discredit all of Hazel's amazing achievements.

The question is how do you bridge the gap between the feelings of watching your child fight so hard for their life on a daily basis and the new reality of a healthy, happy baby?

The deepest scars appear to be in the hearts and minds of the parents of preemies, not the kids  themselves. The kids are the real heroes.

My wife and I are trying to find new and exciting things to do with Hazel every day. She bore the brunt of having to isolate Hazel at home during RSV season. She is an amazing mommy and I can't even begin to tell you how  lucky I am that she is my wife. All I can say is I thank God for her each and every day.

Now that it's summer we are trying to do 'normal' family things. The park, heading over to her cousins house to play and taking long walks in the awesome weather are just a few things that are bringing back our ability to breathe. This summer we will be attempting our first  'family' road trip, wish us luck!

My wife still has a few weeks of her maternity leave remaining and I am now on an extended vacation. I can't wait to do whatever comes naturally.

Am I still concerned about what could be? I'd be lying if I said absolutely not, but at the same time I know it's going to be ok. Our life as a family is now. When I look back on everything we have been through and survived I know we will be ok.

The smile on the faces of my two special girls makes everything we went through worth it. I honestly can say I wouldn't  have the same appreciation for our daughter that I do now had we not been through so much early on. I would still love her and be proud to be her daddy but I know I would take so much for granted.

Will there be ups and downs still? Absolutely. The key, is to take it day by day, count your blessings and try to deal with things strictly as they come.

It is completely ok to feel sad, angry, cheated and totally worn out but it is important to try and remain positive.  I know, easier said than done but with time and patience I believe it can be done.

A few months ago there was this article flying around the Internet titled, 'Don't Carpe Diem'. To paraphrase a lot, it spoke of how it is unnatural to enjoy every moment of parenthood. Easy to say unless your child has faced serious illness or in our case extreme prematurity.

All I could think of after reading it was how I actually do try to find that silver lining in pretty much everything with, Hazel.
 
Meltdown in the lineup at the store? No problem. Freak out while attempting to place Hazel in her car seat, I can handle it. Why is this so? I'll give two reasons.

First, our daughter survived and by the grace of God is doing well. It sort of puts the rest of life's ups and downs into perspective. After so much uncertainty around her arrival the mere fact we have to deal with such 'normal' things is incredible.

Second, when our little girl smiles, it lights up our world. She can fuss, cry and holler all she wants but when we get that little toothy smile, that's all that matters. It's funny how the things that really matter change once you have a little one at home.

My hope for all reading this is that you are able to slowly but surely move forward from the intensity surrounding your little ones birth. It is a slow but important process.

Some days will be better than others but try to keep in mind how amazing your little miracle really is. Being the parent of a preemie is hard, often thankless work, but our little ones are worth every bit of time and effort.