Friday, December 21, 2012

It was meant to be

By Joel Brens

Have you ever had that moment where you have to pinch yourself? To remind yourself that this is all real? It happens to me almost every day. As I watch my son run around, play, listen, focus, and most importantly, laugh and love, I try to count my blessings.  Bringing my son comfort when he is upset and hearing his belly laugh when he is happy - there just aren't more gratifying feelings for me as a father.

I didn't ask to be a NICU dad, but I was. What I've learned and how I've grown as a dad, and a husband for that matter, has changed me forever.  The NICU, and the life that follows as you go home can leave you with physical/mental/emotional scars, some noticeable, some harder to see. But when you turn the corner, and stop to appreciate life's little things, it gets so much easier. To think that I likely would not have met such an amazing group of people, in the NICU/preemie community is mind boggling to me. I can't imagine my life without these people now.

All things considered, it was meant to be. I wrote this poem with that thought in mind:

It was meant to be
By Joel Brens

An urgent call chock full of fear
You birth was coming, the time was near
And while I couldn't clearly see
My preemie son was meant to be

I raced to the hospital, face full of tears
An unplanned moment, planned for years
I asked myself how could this be?
But now I know it was meant to be

An empty room, I'm so confused
Looking for answers, and some good news
"Mom and baby are healthy"  the nurse said with a smile
Just wait right here, he'll be out in a little while

So much relief, yet so much fear
All things considered, I'm glad you're here
When I first saw you, I could clearly see
A preemie dad I was meant to be

The days passed by, one by one
Your stay in the NICU, will soon be done
And as I thanked God for everything
I know that this was meant to be

You have grown so much since then
Looking at pictures, remembering when
Your wrist was smaller than my ring
And since that day, you're my everything

So many great people, that I now know
Helping families, they love them so
I know that we can all agree
Making a difference was meant to be

I love you Jayden

Daddy

Friday, December 14, 2012

The only reality I know


I saw a meme on Facebook the other day that really stuck with me:

"Telling me I can't be sad because someone has it worse is like saying I can't be happy because someone has it better."

While the point I'm trying to make isn't specifically related to happiness or sadness, it falls in those lines quite a bit. Every NICU/preemie story is different. There are always stories with a great deal of similarities, but none are the same.

With that in mind, I am so grateful for my fellow contributing dads. To say something along the lines of "I understand" or "I can relate" in regards to the journeys they have been on wouldn't be fair. I truly don't know what it's like. However, speaking with these fellow dads and hearing their stories, as well as others across the social media universe, do help me better comprehend what their journey is like.

When I launched Papas Of Preemies I was worried that a relatively quiet and uneventful 25 day stay in the NICU would prevent me from carrying "weight", for lack of a better term, in the preemie community. But I realized early on that every journey is different, and more importantly everyone processes their journey different. What may seem like a colossal obstacle for one parent to overcome may be considered a blip on the screen for other parents.

There have been moments I have wrestled with voicing my concerns about Jayden's development, as I know that these concerns pale in comparison to what other families are dealing with. But then it struck me: This is the only reality I know.

My concerns, fear, hope, happiness, and joy are all my own to dictate. I cannot begin to understand what the journey is like for the parent of a micro-preemie. I cannot feel guilty for not understanding fully what it's like to have a child born with a serious disease. But what I will ALWAYS do is lend an ear, provide support the very best I can, and try to connect people with other families who have been through similar circumstances.

Your perspective, insights, questions, concerns, and celebrations are always welcome at Papas Of Preemies, no matter how big or small you think they may be.

Friday, December 7, 2012

I just want the best for my son

 
I spent a large chuck of my youth in a special education classroom setting. I was diagnosed with A.D.D. at a very young age. By the time I was in second grade I was placed in a class with other students who had a variety of disabilities, some more serious than others. What I wrestled with more than anything was taking ideas or thoughts and putting them on paper. The room was about eight students and two teachers. I desperately needed the added attention and I thrived because of it. Some of the most influential people I have met were the teachers who helped me believe in myself at a very crucial stage in my life.

All the same, being in a separate class and riding a different bus than the other kids was an isolating feeling. I've heard enough "short bus" jokes to last three lifetimes. To this day the overuse of the R-word bothers me. The part that bugged me more than anything was everyone, including the students with the largest disabilities, knew they were being teased.

Something I have thought about for years leading up to becoming a parent is what my child's life will be like. On that fateful morning in May of 2010, I became a father to the most beautiful little boy. He was so frail and tiny. Despite my anxiety about his well being, he was stable and in the hands of some amazing doctors and nurses. At that time my mindset was to make it through the day. Pray for progress and make it though the day.

Jayden has come so far since those days. But I have and continue to spend a lot of nights contemplating what his future will be like. We were told early on that delays were a possibility. We have had Jayden enrolled in Early Intervention since he turned two. He is making strides, undoubtedly. But it's become evident that when it comes time to enroll Jayden in preschool and beyond, he will likely need a small classroom setting, at least to begin. I know in my heart and mind that such a setting will benefit him immensely, but I hope he won't struggle with the same feelings of isolation as I did.

I just want the best for my son

Friday, November 30, 2012

A poem

By Jeromy Guthrie

My Son's Birth

Late evening, peaceful quiet.
Blood, fear, 911
Calming voice, direction
Flashing red lights, strangers in my house
Christmas star, a familiar face
Drugs not working, prep for surgery
It’s too early.

Post surgery, recovery
Bad news, struggling to breathe
A plan, a chance for survival
Insurance approval, strangers with power
Her first embrace with our son
Let go, he is taken away
It’s too short.

Early morning, fearfully quiet
Hopes, prayers, love
Tough decision, leaving her alone
Cool fresh air, warm sunshine
Another NICU, trust in strangers
Hope in Him, faith, and prayer
He’s too small.

Late afternoon, mysteriously quiet
Ventilators, IV’s, expressions of pain
Tender nurses, praying nurses
Waiting, restless, sleepless
Friends, family, feeling supported,
Others’ outcomes not so hopeful, guilt but …
He’s coming home.

Monday, November 26, 2012

PTSD and nightmares

My beautiful wife and son
I learned early on in our relationship that my wife had a habit of talking in her sleep. At first I didn't know how to react to it, but after the first few times it happened, it became something that we laughed about. In fact I had, on occasion, egged her on a couple of times. Almost all of the conversations we had, regardless of their nature, were mostly lighthearted material.

Then things changed.

When we became parents to a beautiful 3 lb. 6oz. baby, the stress of the circumstances and uncertainty we faced manifested itself it a number of ways, most notably through frequent nightmares my wife would have.

What once was a few laughs over random things like what I did with the pencil shavings, quickly became anything but funny a few nights after my wife came home from the hospital. She shot straight up in bed one night and said "Is Jayden okay?!?" I remember my heart being in my throat as I was just teetering between being awake and sleeping.  I calmly explained to her that he was in the NICU, was doing fine, and that we could call up to the hospital to check in on him. After confirming that Jayden was doing well, she went back to sleep. I decided at that moment that I would never egg her on while she was talking in her sleep. The context and matter of her dreams had suddenly become a lot scarier.

While our son was in the NICU for 25 days, my wife had a handful of nightmares. My hope was once we had our son home, these nightmares would start to fade. Much to my dismay, they only worsened. The first few months were the worst. Around three to four nights a week she would start talking out of the blue, asking about Jayden, if he was okay. She would go on to explain that she was dreaming any number of bad things were happening with our son, most notably:

He's smothered under the sheets and she can't get to him
He's not breathing
He fell out of the crib

In the back of my mind I knew she was dealing with symptoms of PTSD. While she never felt detached from our son, or was wrestling with other common symptoms of a typical PTSD diagnosis, I knew in my heart that she was struggling. I begged my wife to speak with a doctor about it. Pleaded with her. But she insisted that she would be okay. Slowly but surely the frequency of these dreams began to wain. She still has the occasional nightmare, but fortunately as of late they have been few and far between.

It is my hope that no matter how strong or tough you think you are, take the affects of PTSD very seriously. It is a very real issue, for BOTH moms and dads. Being in the NICU and managing your emotions during and after the experience are so very important to your health. Talk to doctor, it may prove to be most beneficial.

Wednesday, November 21, 2012

What I'm Thankful For



November is always a busy time of preparation and excitement for everyone. This time of year, everyone is posting on Facebook all they are thankful for or texting those they love just how much they love them.  So, this is my “What I’m Thankful For". This year, I will be bursting with thanksgiving for the wonderful miracle my wife and I were blessed with in March. The pride and joy our lives made his grand appearance into our lives and started us on a journey that we didn’t think we could endure. 

After many hills and what seemed like endless valleys, we brought our baby home.  Just days shy of his seventh month, we got to bring our boy home. I must admit, there were a few days when I didn’t think that day would ever arrive, but on October 1,  Nash came home to a house full of balloons and all the love he’ll ever need to see him though any struggle he will ever face in this life.  I’m not sure I can even put into words the thankfulness that is in my heart.  Along with being thankful for Nash, I’m thankful for all the nurses who cared for Nash and treated him like he was their own. I'm thankful for all the doctors who spent so many hours trying to figure out the best plan of care for our little boy.  

Thank you for not just treating your job like its just any other job but for treating it like it was your calling, and it showed.  

But I’d be remised if I didn’t thank the Great Physician who guided the nurses and doctors and took over when man said I’m not sure what’s going on This year has taught me ‘In everything give thanks.’  I also must say thank you to everyone who ever said a prayer for us or stood with us in this journey. Please know that our victory is your victory.  Don’t forget this year to give thanks with a grateful heart!

Tuesday, November 20, 2012

"How's Your Preemie Doing?"


“How’s Jack?”
 
It’s a question I got from the moment our son was born so early at just 23-weeks gestation. I got it all throughout his four month NICU stay. People asked after the surgeries and doctors’ visits. I still get it on a regular basis even now that he is three years old.
 
I love it when people ask about Jack, because I like to talk about Jack. He is a miracle, and I’ll share his story with anyone who is willing to listen.
 
Still, it’s not always easy to answer the simple question – “How’s Jack?”
 
I happen to think he’s doing really well. I see his progress in mobility, communication, and eating – all of which have been struggles over the past three years. But if people don’t know much about Jack, other than his rough beginnings, saying that he is doing great is certainly not giving them the full story. Many people mistakenly believe that all a preemie needs is a little extra care and time to “grow out of” prematurity. Sadly, many micro-preemies have long-term health issues that require surgeries, therapies and frequent doctor visits. Some things are life-long. In the eyes of some people who don’t know him well, describing Jack’s hurdles and difficulties may make it seem like he is not doing “great.”
 
I came to realize this when some folks that are acquaintances of mine started to ask follow-up questions about what Jack was up to these days. When I explained he was in a pre-school where he could hopefully improve his communication, mobility and social skills, people were sometimes perplexed.
 
“Is he having some difficulty talking or walking?”
 
This is the awkward moment when I calculate whether I should delve into a medical history that could take hours to explain. Do I explain to them that Jack has cerebral palsy and the ranges of what that term can mean? Should I go into Jack’s g-tube and his difficulty with eating? Does this person even want to know all of this information? Clearly they cared enough to ask, but they probably didn’t realize what doors they have opened. I don’t mind one bit going through those things.
 
My point is this – it’s easy to feel like I am underselling my son by explaining his difficulties and disabilities, rather than focusing on the miracle of his existence and steady progress. If people have followed Jack’s story since the beginning, they are well aware of the highs and lows associated with his medical history. They know he has come a long way and is a happy, growing boy.
 
But for casual acquaintances, new friends and (sometimes) curious strangers, they can hardly begin to understand him and appreciate the miracle he is.
 
All of this is a rambling post that will confuse everyone except the parents of a special needs child that has been through the ringer, but has some miraculous stories to share. On something so simple as “how is your child?,” I find myself wondering exactly how I should respond depending on my audience. People need to understand his struggles in order to appreciate where he is today. But I never want to leave anyone with a negative impression of how I think he doing because I am so proud of him.

Monday, November 19, 2012

A letter to me




He'll Have You At Hello

Dear Joel- I realize at this point you haven't quite had the chance to process this life changing moment. My guess is you'll be relying on  your adrenaline from racing to the hospital to see your wife and brand new baby boy. It's okay to cry. Those tears might have some sadness to them but are full of happiness and relief. Both mom and baby are stable. At the end of the day, that's all you ever really asked for.

This wasn't what you drew up or hoped for as a first time parent. Your early days as a dad will be stark in contrast to dads who experienced a "normal" or full term pregnancy. Please do not let that harbor bitterness within. The moment has arrived, and all you can do is make the best of your circumstances.

Within a few hours reality will slap you square in the face. The constant beeping noises and alarms in the NICU will take some getting used to, but in time you will get adapt to the environment. In some strange ways it will become a comfort. It's okay to feel uncertain, or scared, or even a bit angry. Nobody ever wants to be thrust into the NICU, unfortunately nobody ever has a choice.

This may seem like asking too much, but in order to better prepare yourself for when you take your child home, you have to learn to let go of fear. That's a tall order considering the complete lack of control you feel right now. You'll learn soon that asking questions to the NICU staff, understanding what  plan for continuity of care they are giving, becoming an advocate for your son, and getting involved will tremendously help you get a little of the control back.

These are a few tips and things to consider moving forward:

-Most importantly, you are NOT alone. There are a great deal of other dads out there who are struggling just like you are. Seek these people out in the future as relating to others will prove to be most therapeutic.

-Be kind and gracious to the NICU staff. They work so very hard on helping to get your child healthy enough to come home. I cannot stress enough how much having a good relationship with those responsible for caring for your son  can make.

-With that in mind, you have to learn to trust these people. At some point you have to go home and leave your son in the NICU. It's incredibly difficult to do, but its necessary. You can always call in and check up on your child if you want to.

-Need a break? Take one. Stress is not a good thing to bring into the NICU. Clear your head every now and again.

-When you finally bring your son home, take it one day at a time. I can't, and won't for that matter, tell you to not stress out about development. It's something that most parents, (and every parent of a preemie) worry about. But don't let that cloud the ability to enjoy little things.

-Take a million pictures. On days you are having a tuff go of it, or your patience is waning, take a  look at all of the pictures to remind yourself of how far you've come. Your son is truly a miracle!

You are going to be an amazing father! Keep up your faith, your hope, and take a moment every day to hug your son and let him he's your everything.

Sincerely,
A friend

Tuesday, November 6, 2012

Dear Tristan...


Dear Tristan,
Your mom spent the day at NICU; she’s a preemie hero. This left us with tons of papa/son time. I cherish this time together. I know you adore your mama, and you get to spend way more time with her than you spend with me, but our time together is special. During our boy time, we get to do dude things.

When we watch TV together, you’ll sprawl out next to me and sink into the couch like a dad after work. You’ll snuggle me, but not the way you snuggle mama—you crawl up on me and sit on my chest, but you don’t stay long before wanting to be picked up and thrown around. That’s the kind of things papas do with their little dudes.

We had leftover pizza for lunch. Yours was chicken, bacon, and Romano cheese. Papa ordered it just for you. We ate cold pizza and you growled and threw the crust on the floor. I tried to feed you some yogurt too, but you were over it. Sometimes at dinner you will feed me, and that’s probably the most precious thing ever. I get close to you and tell you how awesome and cute you are, and you take a bit of your food and put it in my mouth. You love to share—you’re a gentleman.

We worked out together today. You’re already looking pretty buff. You hold onto my fingers all by yourself and I pull you up into the air. You hang there with your own strength for as long as you can. When you start to slip, I bring you down and you burst into giggles. As soon as your feet hit the floor, you want to go again, but I give you a few seconds to regain your strength. When it’s papa’s turn to work out, I pick you up over my head and flip you around in the air. You love being upside-down and you love being as high in the air as possible. You like to live on the edge, huh, dude?

There are a ton of papa/son things I can’t wait to do with you. Days like today make me think of them. I can’t wait to grill with you in our own backyard someday. (We’ll have a backyard, I promise.) I can’t wait to take you to the zoo for real—your first trip didn’t count because you had no idea what was going on, even though the marmosets were totally into you. Someday we’ll go to the beach and collect shark teeth, and someday we’ll ride bikes and you’ll skin your knee and think it’s cool (and I’ll secretly be scared, but I know you’re tough), and someday we’ll go camping, just the two of us, and we’ll stay up all night talking about whatever’s on our minds.

You’re my little dude and I love spending every day with you.

Your papa,
Brandon


Friday, October 26, 2012

How to talk to a SN parent


By Marty Barnes
 
I am a mother of an amazing little six year old girl, Casey.  Some may say she is medically fragile, some say she has special needs, some say disabled, and the list goes on and on.  We say she is Casey (or Princess Casey).  We know when we leave our house that we will draw attention.  Casey is a beautiful little girl and some people notice her simply for that reason.  However, she is also very loud.  She has a suction machine that we have to use frequently to help her breath and she also has stridor.  In addition to the noises we bring into a room we usually travel with an entourage of care providers, a wheelchair, and all kind of other things to draw attention our way.

It used to be hard for us to go out.  We were not comfortable with the stares and questions or comments.  However, over the years we have figured it out as best as we can and we can now enjoy going out with Casey.  For the most we have found that when people are staring it is not with malice, but curiosity.  Most of the questions and comments are said with good intentions. There are a few exceptions of course, and those hurt, but most people are very welcoming to all of us and happy to meet Casey and hear her story.  We do find that some people may want to talk to us, but are worried that they may say something to offend us so instead they sit back (and often they end up just staring). 


Most people are aware that the R-word is not acceptable, and some people have heard about and try to follow the People First Language.  These are great tools to know what is going to offend someone for sure, but I hope with this article that I can make it even easier for you.


First thing first, we are parents just like you.  We are proud of children.  We want to protect our children and give them as many wonderful life experiences as possible.  This is true for all parents, regardless of our child’s abilities.  Some of us may need to modify experiences in order for them to be safe or accessible for our children, and some of us may have to miss out on a few, but we want to see our children happy- just like any other parent.  Our kids are just like other kids.  They like cartoons, music, tickles, books, etc.  They would rather talk about ‘My Little Pony’ than politics.  When they are upset they want their parent to comfort them.  I think if you keep this in mind, it will make interacting with families of special needs children a little more natural.
Here are a few more tips and examples:

Don’t assume you know ANYTHING about a child.  Just because my daughter sounds like she is snoring from the stridor does not mean she has a cold or is asleep.  I wish I had a dollar for every time someone looked at her and asked “Does she have a cold?” 

BAD:
·          Does she have a cold?
·          He has Down Syndrome.  My sister’s friend’s cousin… has Down Syndrome too.
·          Oh gosh, he is really throwing a fit, he must have autism, right?
GOOD:
·          How old is she?
·          I have a little boy that like’s trains too (if the child is holding a train or something).
·          That’s such a pretty shirt, is pink your favorite color?

As you can see, the ‘GOOD’ examples are things you would say to ANY OTHER parent.  After you break the ice and talk with a parent of a child with special needs let them decide if they want to share more about their child’s condition.  You may be right in guessing the diagnosis, but the child is so much more than their condition.  Notice the child for being a child. 
NEVER ask what is ‘wrong’ with a child.  Our children are not broken, they are just different.  This does not make them wrong and a healthy child right.  We have had a few people watch us suction Casey then come up and ask what’s wrong with her to require this activity.

BAD:
·          What’s wrong with him/her?
·          Is he/she sick?
·          Should I call someone for you?
·          Do you have to do that here, can’t you step away?  That’s so gross.

GOOD:
·          I have never seen anything like that (referring to equipment- not the child), what is it?
·          It looks like you are pretty good with that thing (again- referring to equipment), I bet it took a while to get used to.

When you see someone using equipment that you have not seen before, chances are they expect the questions.  Unless they are having a really bad day, or are in a rush, they would much rather you ask a question than sit and stare are them.  Just be sure to ask the question in a respectful manner.  If the device is gross (some of them can be) don’t act disgusted.  We know it’s gross, we don’t like doing it any more than you want to see it.  Bottom line is, whatever it is HAS to be done.  The suction tools we use pull out some gross stuff.  We try to keep those out of site, and covered, but there are times when we cannot avoid it.  You being grossed out about it is not going to help anything.  If you are grossed out by something, look away. 

We are NOT heroes.  We think our kids are, but we are parents.  We are doing what anyone else in our shoes would do.  It’s hard to put yourself in our shoes.  We get that, but if you want to praise anyone, we would prefer you praise our kids.

BAD:
·          Wow, how do you do all this?
·          I don’t think I could do this at all.
GOOD:
·          I’m impressed, you really juggle a lot. 
·          Your kid looks so happy; all that you do for him/her is totally paying off.

One last tip- it’s NOT a contest.  Some of us have children with more severe conditions than others, but regardless of the extent we are all going through the same thing.  When our child is diagnosed (or in search of a diagnosis) we end up going through the grief cycle.  The time we spend on each stage or the number of times we cycle through may change depending on our child, but the general feelings are all the same.  I’ve found that I have to explain this a lot to other families of children with special needs.  Early on when I would hear other families devastated by their child walking late, or having a learning disability I would get very angry.  I did not understand how they could act like that was such a huge deal when I would have done anything to have their problem.  I learned over time though, that it’s not about the challenge itself; it’s about the fact that our child has to deal with any challenge.  It’s all very subjective. 

BAD:
·          Oh that’s nothing, so what if your child has ADHD at least they walk.
·          I was having such a bad day, but then I thought to myself at least I’m not you. (Yes, I really have heard this one.)
·          How long will this last?  Or how long does he/she have?
GOOD:
·          It’s got to be hard to deal with anything like that.  There are lots of organizations out there that can help get you in touch with other families that have or are going through the same thing.  (some examples found here)
·          Is there anything I can do?  Don’t ask this unless you intend to follow through.  Things like cooking, cleaning, watching the kids, feeding the dog are all ways that people can help especially while a family may be dealing with a hospital stay, numerous appointments, etc. (page 6 has more suggestions)

Our kids don’t have expiration dates.  Sometimes we are given prognosis on how long our child will be sick and/or live, but these are NEVER things to focus on.  When we are expecting a child to be better in a certain time and they are not this type of question is like a thorn in the parent’s side.  When a child is on borrowed time this type of comment can be a brutal reminder. 

Really truly the best way to reach out to a family of a child with special needs is to treat them the same as you would anyone else.  Recognize the parents are doing the best they can (and that if you had to do the same for your child you would).  See the kids as kids, not as a condition or disease.  Questions are okay.  We know our kids look, sound, act different.  We expect questions and many of us are happy to share our children’s stories.  A respectful question is always better than staring.

Friday, October 19, 2012

Early Intervention- So much accomplished, so far to go

Doing the best I know how
 
Let me preface this blog by saying the team of therapists we work with are nothing short of amazing. Both my wife and I really enjoy working with them. We trust them, and trust their best intentions in regards to development with our son. Our six month assessment is on Monday, and I'm equal parts nervous and eager to hear where they see Jayden's progress.

Has he made strides? Undoubtedly, yes. His ability to comprehend to what we are saying has improved significantly. He focuses and interacts during activities better than he used too. But his ability to communicate through speech is not improving nearly as quickly as we hoped.

The amount of words he can say has improved. He can now say about 15-20 words. But unfortunately most of them he only says when prompted to. He babbles all the time, and based on his body language I have no doubt he knows what HE is saying, but it still doesn't make any sense to us. I look forward to a time when he uses the words he knows in an appropriate fashion.

Comparisons are dangerous, counterproductive, and create unneeded stress, but I would be lying if  I said I don't notice friends and strangers with kids who are clearly a lot father along at the same age, or even younger.  It depresses me. Why hasn't he put it all together yet? How much longer will it take? I knew the road would not be easy, but quite candidly this process is harder than I originally thought. Which brings me to the question the cuts to the core of this post:

Am I doing enough as a parent?

Am I failing my son?

Of course I know that's not the case, but these feelings cross my mind. Probably more often then they should.

I have been a stay at home dad for the better part of two months. Most days are wonderful, but other days are really tough. Sometimes I wonder if removing Jayden from the daily interaction of daycare has stunted his growth. Balancing what's best for Jayden and what's best for the family can be tricky.

We have agreed to double up his therapy sessions moving forward. We are hoping that an increase of sessions coupled with some new exercises will help him make big strides. I understand that six months, a year, five years down the road, we will look back and celebrate how far he's come. I just can't wait to get there.

Wednesday, October 17, 2012

Dear Hazel



By Rob Berry

Dear Hazel,
 
I haven't written to you in a while and for that I apologize. Life has become super busy again and that makes it difficult to find the time and motivation to write. This new level of activity really does signal that life is becoming 'normal' again.

You have grown  up so fast. It is hard for me to believe that you are now almost 14 months adjusted (18 months actual). Just this morning while watching cartoons with you, your mom and I were talking about how you are no longer a baby, rather you are a little girl.
 
How is it possible? It seems like yesterday that we were at your bedside in the NICU, spending countless hours saying our prayers and doing any little thing we could to help you get bigger, stronger, healthier. At that time you did not know what quiet was. There were people constantly in and out of your pod, machines whirring and monitors blaring. Every moment of the day, something was happening.
 
Last July, we were able to bring you home after four months in the hospital. What a glorious and terrifying moment that was. We got used to it pretty quick. Your mom and I worked as a team and attended to your needs as best we could. At that time it felt like you would never come off of your oxygen. It took longer than we thought but as I hold you today you have been off for 7 or 8 months.
 
Fast forward to today. All of those noises, all of those worries are gone. I sit in your bedroom watching you sleep. The house is silent except for the faint sound of your mom preparing dinner downstairs.
This day has been filled with laughter and smiles. You started walking three weeks ago and today you spent the morning walking all over the house, following your mom and dad around like the world's most adorable puppy.
 
You are so inquisitive and so determined. Once you set your mind to something, that's it.  We have no doubt that these traits served you well early on in your life and have helped you to become the little girl you are today. Don't ever lose that fire.
 
I just wanted to let you know that not one day goes by where your mom and dad don't stop and think about how lucky we are. You are our little miracle. Watching you go about your business makes us realize that there is nothing we can't do as a family.
 
One bit of advice before I sign off. Always remember when life gets busy that it is important to stop and smell the roses every once in a while. Be the best person you can be each and every day.
 
If life gets tough, which it surely will, don't forget to feel grateful for all of the good things in life. Surround yourself with friends and family who love and support you and forget everything else. Your mom and dad will be there to offer a kind ear and support you through life's moments. Never forget that you have the strength to conquer anything that stands in your way.


Love,
Dad

Monday, October 8, 2012

Entering Isolation



This is a season of change for most people. Whether it’s the start of school, hunting season, or football games, many of us can stomach the end of summer by appreciating the changes fall brings.
 
One unwelcome change stems from the drop in temperature and more time indoors - sick season. Colds, flu and the dreaded RSV start to rear their ugly heads during this time of year. It's not fun for kids that get sick, it's not fun for parents that have to take care of sick kids, and it's not fun for parents who get sick from their sick kids.
 
For parents of many preemies, this season brings even more dread and fear. Preemies, especially micro-preemies with bad lungs and underdeveloped immune systems, are quite vulnerable during this time. A cold or bout of flu can land a preemie in the hospital. RSV can be a killer.
 
To protect their little ones from these dangers, many parents of preemies take the extraordinary, but wise step of isolating their preemie from large public place, sick adults, and most children (other than siblings). From anywhere starting in October and extending into April or May in the first year or two of a preemie's life, a protective bubble of sorts forms over the home only to be burst when the coast is clear or for doctor visits. This can be especially hard on the parent that is necessarily isolated as they shield their child from the bugs and viruses we can't see, but all know they are there.
 
In our family, my wife, Jessi stayed at home with our 23-weeker son, Jack. He had chronic lung disease from being on the ventilator and required home oxygen for the first six months we had him at home. We didn't want to take any chances, so an invisible wall was built around our home where visitors weren't welcome (with a few exceptions) and the only person going in and out on a daily basis was me for my job outside of the home. We didn't go to church together anymore, we didn't go to the store together or out to eat as a family. We even avoided big holiday gatherings with lots of the people we love. Friends and family can pass on bad germs too.
 
Needless to say, isolation is something that can be very difficult for the parent stuck in an almost prison-like setting. I had personal interaction with people all day at my job - Jessi had her phone and Facebook. I had to travel as a part of work - Jessi's existence was largely relegated to four rooms in our house. She did it for two long winters, and I can't begin to imagine how difficult it must have been.
 
If you have a new preemie, you or your significant other may soon be entering some form of isolation to protect your little one from some nasty illnesses. If it's you within the winter fortress, I can't begin to give advice since I did not go through it. If you are the parent that has to work outside of the home while the other parent takes one for the team, I do have some advice:
 
1. Constant contact - we live in a time where we have email, texting, Facebook, phone calls an more. Use all of them often to reach out to your significant other. Ask how they are doing. Ask them if you need to bring something home after work. Be helpful and thoughtful.
 
2. Kick them out the door- whether they want to or not, volunteer often to watch your child while your significant other goes out with friends & family, sees the outside world, and forgets temporarily about the bubble back home. It will help their sanity immensely.
 
3. Date night – your significant other may not just want time out of the house – they may want time with you. I recognize that this may be altogether impossible for some couples, because it requires you to leave your baby with a friend or family member. You may not have someone to leave your child with. If you do, however, take some time once a month to get out together as a couple.
 
4. Make it to big doctor appointments, meetings – adding to the feeling of loneliness as part of isolation is when the parent at home is also alone during the few times they leave the house for doctor appointments or meetings regarding your child. Once a month, Jack visited the doctor for weight checks, several shots, and general checkups. We were also meeting with therapists to discuss early intervention. I made as many as I could. Trying to make these big meetings or appointments will reinforce that you are not leaving your significant other to do all of the heavy lifting by themselves.
 
There is no way around it – isolation is tough for the parent who stays at home. But you can make it slightly easier on them. For more information about Jessi’s time in isolation and survival tips, visit her blog about Jack at:
 

Thursday, October 4, 2012

Am I a special needs parent?

Jonah (at home) with his son Nash
By Jonah Rhodes

With Nash being in the hospital in Dallas, two and half hours from where we live, I find myself with a lot of time to think while making my weekly commute to spend the weekend with him and Melissa. It was during my drive last week that I  asked myself this question, "Am I a special needs parent?". 

I think for most parents this would be a dreadful question, one they'd never be willing ask and wouldn’t ever want to hear the answer "Yes" to. Well I guess that's where I differ from most. I find it an honor to have been chosen for this task. Yes, I understand Nash doesn't seem like a special needs kid, but that doesn't take away from his need for special care. I don't mean to offend anyone who thinks I’m taking it lightly or would say Nash isn’t a true special needs child. The fact is, he will need lots of extra care for a good bit of time. While the doctors have said he will grow out of most of his current problems, that doesn't take away from the time and attention that goes into his daily care.  The thought of having a baby with a Trach or a baby who will have to be on a ventilator for awhile would have scared me to death six months ago.  Instead, it has become second nature, and I am finding out that the only thing special about a kid with ‘special needs’ is no matter what kind of need the child has, it isn't the need that makes them special it's the joy they bring into your life that makes them special. 

I need Nash far more than he will ever need me in life. He has brought a new purpose and a level of compassion I have never known.  I have been blessed to be chosen to have the honor of helping Nash get over this little hill. In the beginning what seemed like a mountain that couldn't be conquered is, in fact, just a small bump in the road. I'm here to tell you that indeed, all things are possible through Christ. I know there will be some hard days ahead and lots of care for him that will be left up to me and Melissa once he comes home, but the joy that Nash brings me is the strength that fuels my desire to be the very best dad and caretaker I can be for him. Seeing him smile is all the reward I ever need.  So I leave you with this poem that was posted on the Poppa’s for Preemies page. This poem expresses just how I feel about Nash.


I Still Would Have Chosen You
~By Terri Banish
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you... 
If God had told me, "This soul would one day need extra care and needs", I still would have chosen you.
If He had told me, "This soul may make your heart bleed", I still would have chosen you.
If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you.
If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you.
If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you.
If He had told me, "All that you know to be normal would drastically change", I still would have chosen you.
Of course, even though I would have chosen you, I know it was God who chose me for you.

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. ♥


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