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.

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,