Monday, April 29, 2013

I Choose Hope- Kim Johnson

By: Kim Johnson

After this past year, there’ve been many times that hope was all that got us through the most incredible & difficult journey we’d ever been on . I’d like to share just a little bit of our story.

When we’d been married for about 18 months, I started feeling…different. I just dismissed it as any number of possible explanations. But, in the back of my mind, I’d started wondering if I was pregnant. One day, my husband jokingly suggested that I take a home pregnancy test. I got a test and went to prove him wrong. Three minutes later, I was in the bathroom shrieking that the test was wrong. Yeah, that wasn’t my proudest moment; but I truly was baffled because it was POSITIVE!

7 weeks in to my pregnancy, I started having lots of complications. At one point, I ended up in the ER. The doctor was convinced I was miscarrying and apologetically sent us home. Despite everything, I chose to be hope everything would be ok.

The next morning, another ultrasound was done. There was a heartbeat! This little one was still alive and seemed to be fine! I chose to hope the pregnancy would continue to be successful and healthy.

I was put on bed-rest. That was a hard time for me. But eventually I was allowed to return to work and resume some sort of a normal life, even though I needed to be very careful. Things seemed to be going very well. At 20 weeks, we found out baby was a BOY! The pregnancy was progressing pretty uneventfully by this point and we were starting to relax a little bit.

At 25 weeks, I suddenly went into labor. I was TERRIFIED! We went straight to L&D. They thought I was dehydrated and sent me home with orders to stay off my feet, drink lots of water, and see my doctor on Monday. Ok, this was only for the weekend. I made myself comfortable on the couch and just relaxed. For several hours, everything was fine.

Six hours later, labor started up again. But this time, the contractions were much stronger. I called my doctor’s office, got the on-call doctor and explained what was happening. I KNEW something was very wrong and eventually convinced her to meet us at L&D. So back to the hospital we went. We still had no idea what lay ahead of us.

By the time we reached the hospital, the contractions were only 3 minutes apart. The triage nurse checked me, lost all the color in her face and called the charge nurse. She came right in and told us our son was coming right then and there was nothing they could do to stop it. 25 weeks was WAY too early for a baby to arrive. What would happen? Would he be ok? We didn’t have time to think. Everyone flew into action. All I remember was them telling me to not have the baby for 12 minutes because Life-Flight was on the way. It turned out they didn’t have a NICU at this hospital. We didn’t think we’d need a one, so we’d never thought to find out if they had a NICU.

A few minutes later, a crew who’d been specially dispatched from the closest NICU arrived. These flight nurses worked with very early, sick babies regularly. If anyone could help him, it was them. Very quickly, our son arrived weighing a tiny 1 pound, 12 ounces and measuring 13.5 inches. We named him Xander.

He was rushed out of the room, never once making a sound. We waited to see him for what seemed like years. In the meantime, no one wanted to answer our questions about how he was. A worked desperately to (as we later found out) resuscitate Xander. In addition to prematurity, he was septic and in shock.

Two hours later, we finally got to see him. He was SO tiny! He was also critically ill and they weren’t sure he’d survive a 12 minute flight, let alone longer.

The next day, the Neonatologist called: Xander’d made it through the night, but he was still critical. His delivery and the flight to the NICU had been hard on his tiny body. The doctor asked how quickly we could get there. I was still a patient in the hospital myself. My doctor realized that Xander needed us more than I needed to be in the there, so I was discharged a mere 12 hours after giving birth. We chose to hope that both Xander and I would be ok.

The sights and sounds that met us were surreal. There’s no way to prepare for what the NICU’s like. Walking into his room started us on a 93 day roller-coaster ride. For a long time, Xander was too immature, fragile and sick to be held. I chose to hope that we’d be able to get him well enough to hold him, and offer him some comfort.

One day, his nurse asked me if I wanted to hold Xander. YES!! So, at 22 days old, I FINALLY held my baby for the first time! Unfortunately, holding him was still very hard on him. After about 30 minutes he was too cold, stressed and had to be put back in his isolette. I chose to hope that he’d get to snuggle with his Daddy before too long!

One week later, Xander got to snuggle with his Daddy for the first time.

We chose to hope that Xander would continue improving. Slowly, he came off the vent, got to wear clothes, had his first bath, moved to a crib and learned how to eat. Then suddenly….no more tubes or oxygen! And one day, we got to go home! I kept checking the carseat to make sure Xander was really in it and that no one had changed their minds!

This is Xander now. I still choose to hope that despite everything, he’ll be just fine.

Our NICU journey taught me a lot, but mostly it taught me to choose hope because that’s carried us through the challenges. I still choose hope every day.

Monday, April 22, 2013

Why I write

By Mark Brislin-

Going into Owen's 18 month CDH check up I used advice that our nurses gave us when we were still in the NICU.

"Focus on the baby, not the monitors", they would say when they would see my heart stop and face drop every time one of the alarms went off.

So here we were on the eve of his appointment, trying to stay optimistic but also understanding that over the past few years, most of the conversations with doctors started positive and ended with a "But..."

"Focus on the baby..." -I watched my son as he played in our living room. I was trying to evaluate him. If my eyes were only X-ray capable I'd know exactly what was going on in his little body. He was breathing effortlessly- always a good sign for a CDH kid. Under his shirt I could see the first signs of a belly. No longer did he look like one of those poor kids from the feed the children commercials. He picked up his new basketball walked over to his new two foot rim, (sorry, he's not old enough to understand how to dribble), he placed the ball over his head, and gently placed the ball through the hoop. He turned around, looked at his Mom and I and said, "two points." Not bad for a little guy who was on life support 18 months ago, I thought to myself. As you can imagine I was pretty optimistic. He could walk, talk, hold a ball up, and have the presence of mind to put it through a hoop and the verbal skills to say, "two points." The baby was telling me that for once we could put our concerns aside and be optimistic about the results.
The next morning I was still in a pretty good mood. Going into Manhattan is always a little stressful, since you can never anticipate how the traffic will be. Some days the 15 minute ride could take two hours, other days you can just sail right in. On this day, luck was on our side. The ride in was uneventful.
So let me jump ahead for a minute. The day continued to be one we would never forget. Owen's doctors told us all good news. They were happy with his progress, and told us to, "treat him like a normal kid." We couldn't have been any happier and for the first time in Owen's short life, the doctor said see you in 6 months. For a NICU family to not have a doctor's appointment scheduled for 6 months is like hitting the lottery.
But the story of this day, doesn't end here. What's missing is the reason why I began blogging for Papas of Preemies. It's the reason why I am so obsessed with giving back to other Dad's that will or have walked in my shoes.
When you come out of the elevator on the second floor of the Morgan Stanley Children's Hospital you face a pretty industrial looking gray wall. Just around the bend is the doctor's office and the general waiting room where the other CDH kids wait to be seen. It's not uncommon to see another CDH family that we've connected with on Facebook, people that we barely know much about other than their journeys though CDH at MSCHONY. So I didn't really anticipate what I saw when I arrived at the waiting area. There was a ilittle boy in a stroller, with his Mom and Dad at his side. This wasn't just any little boy, but Owen's pod mate on the night he was born.

I still remember coming into the NICU for the first time on that night, standing at Owen's bedside and seeing this burly guy covered in tattoos across the pod. I was so scared and so tired that I couldn't even lift my head up or move my cheeks to smile at him. A few minutes had gone by, the nurses had just come and briefed us on Owen's condition, he was doing well, "but." Then I felt a tap on my shoulder. The guy across the pod was now standing next to me. He told me his son's name, he explained their story, CDH, just like Owen. He said to me that they would be there for a long time as well, and that somehow, we would all get through this together. He took a little toy from his son's pod and placed it on Owen's and said that it was their good luck charm throughout the rough times, and that he hoped it brought us just as much luck as it had brought them. I had never met this person. From what I could tell we were from different worlds. When you live in this area, your accents can be traced back to you by the borough, county or neighborhood you grew up in. I had guessed from his accent that he was from either the Bronx or Brooklyn.

I was blown away by what he did for me that night and during our reunion I made it clear to him that I would never forget it. We took pictures of the two boys together, and reminisced about where we were. We renewed our promise to meet in Central Park some day soon to teach our boys how to play baseball together. It was an amazing day all around, and one that I will never forget.

We are all busy in our day to day lives, taking care of our kids, and trying to stay employed in this crazy world we live in. I try to find time at night to write as many blogs as I can, tweet as many times as I can to try to reach as many dads as I can. Because you just don't know the impact words on a page, or a tap on the back can have on someone who is going through the toughest time in their life. It's the reason why I write, and the reason I will never stop.

Wednesday, April 17, 2013

Our Bittersweet Goodbye

Dr. Conor with Dr. Schuschke at his last neonatal appointment!
By Jacob Hedgespeth

On March 26th 2013 we had Neonatal Follow Up appointment at Kosair Children’s for Conor. I don’t really know where to start writing this one. Our emotions flying everywhere as we travel the pedways and hallways that we had so many times before and the smell of that hospital, man that smell alone can take me back to every fear, every out reach of support, and every prayer we had sent for us. Some of the most memorable times, besides my son being born, were eating in Norton Hospital cafeteria with my dad the nights Taryn was still in the hospital. Just to be able to talk with him about normal things, and his reassurance of how this will all be fine will forever be in my mind. You see, my dad and I have a best friend style relationship and Dad has been a lot of things to me. He has been my hero, my caregiver, my superman, and most of all he has been my dad. I pray daily that I can amount to half the father he has been for me.

And we haven’t even got to the doctor’s office yet! The team of neonatologists that cared for my son while in the NICU runs this follow up program, so it is always great to see reactions from them on his appearance and size. Dr. Schuschke has seen Conor the last two times we have been in the office, and I remember talking to her late one night while on a milk run to the NICU and she was checking in on our little guy. Today she was just seeing how Conor was moving along developmentally and she was more than pleased with Conor’s motor skills and his muscle development. She showed us what Conor looked like on the percentile charts and his weight was 28%. ON THE NORMAL SCALE! I thought I would jump up and down! At his 3 month appointment he was barely on the scales at all!

Then she played around with Conor just to see what else our little man could do and Conor tried his best to crawl for her but he just can’t quite get it yet but he sure is trying! Then our bittersweet news came. Dr. Schuschke told us that she was very pleased with Conor’s progress and that she feels very comfortable in releasing him from the program. At that moment you feel joy, but then you realize that you won’t be seeing these awesome people anymore. Dr. Schuschke stayed in the room with us a little while longer, talked with us and took a few pictures with Conor and said “He is the reason we do what we do.” And that brought tears to my eyes, knowing that this woman really loved my son while in her care, and they all did.

Though Conor is still small for his age he has a huge story to tell one day. And he will be able to tell that story thanks to Neonatal Doctors like Dr. Schuschke and the whole Kosair NICU team. I will forever be in debt to these great people. So if you are currently in the NICU take the time to thank your nurses and doctors because they care so much about your little one.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28

Thursday, April 11, 2013

Dear Jayden... Part 2: What Dreams May Come

By Joel Brens

A year ago today we launched this page, Jayden. In a lot of ways it was a homage to you, to the inspiration you have been for me. This day reminds me a lot of the day you were born. Gloomy, wet, melancholy. That was all BEFORE I got the call you were coming. The juxtaposition of my emotions was overwhelming. While I was terrified, I was also so very excited, perhaps naively, that I was about to be a dad. What a journey it has been since that fateful morning.

You have taught me so much, about love and hope, about myself, about being a husband and father. While I never wanted to be a preemie parent, I cannot imagine any other life. The things you do, how you have grown, how you manage to make me laugh and lose my hair on a daily basis is mind-boggling. The love I posses for you cannot be quantified, for it is infinite.

We have watched you progress from a fragile beginning to the amazing little boy you are now. Mommy and I have seen you at your very best, and at your very worst. Much the same could probably be said of the two of us as well. Sometimes we wrestle with the day to day battle of getting you to listen, respond, and interact properly, which at your age is a struggle in itself. Coupled with speech delays, we have had our fair share of meltdowns. The most important thing to know is that we love you so much and we are so very proud of you.

What does the future hold for you? To be honest, I'm not sure. While I have a vision and hopes of where life will lead you when you are old enough to make independent decisions, by no means will I ever let that interfere with your own path. I want you to have dreams, to have goals, and to aspire to do good things. Would I love it if you wanted to play sports? Of course! Would I love it if you excelled in the classroom? Undoubtedly. At the end of the day, all I'll ever ask of you is wherever you path leads you, be passionate about it. Love and support are two things you will ALWAYS have. Whether you want to run a Fortune 500 company or work in a warehouse. Whether you want to be a pro athlete or a starving artist, love what you do.

Daddy had a learning disability when he was younger. You see, I struggled with taking ideas and putting them to paper. Writing is one of my biggest passions now. Let me assure you can overcome any obstacle, don't let naysayers or expectations dictate your path. Anything you put your mind to us possible, and I am so very excited for what the future has in store for you.

I love you so much,
My hopes and dreams for you? They're SOOO BIG!

Thursday, April 4, 2013

I Choose Hope- Mark Brislin

By Mark Brislin

There is a point in my afternoon commute where New York City is no longer visible. I put my cell phone down and turn the music up. On some days a sad song brings me back to a time when driving away and leaving our son in the Morgan Stanley Children's Hospital in New York was so painful. However, most of the time now I focus on the future. I turn right off of the highway and into my little lake community. At the bottom of the hill I pass the baseball fields - on some days they are filled with mini soccer players and on others the weekend warriors are trying to relive their youth.

A few years ago the future did not look so bright. Back then driving past these fields and seeing kids play left me wondering if Owen would ever get to stand on that pitcher's mound, or even live to see the neighborhood that we had hand-picked for him.

There were many days when I would have to pull over, overcome with the unknown and angry that we had to wait until he was born to know if he would survive. In those days, the idea of him playing sports was an after-thought. Instead, my greatest hopes for him shifted to wondering if he would walk, talk, eat, or even take a single breath without a ventilator.

As I think back, there is not one specific moment that caused me to be more hopeful then others. Owen's battle with congenital diaphragmatic hernia started so early- he was diagnosed at 20 weeks gestation and as we went along it seemed that every weekly ultrasound brought a new problem to overcome.

I guess I was always hopeful that everything would work out and I couldn't even fathom the alternative. But through all the ups and downs, I held onto something that one of the residents said to us at the very beginning of our NICU stay. At the time we had been living in Owen's NICU pod around the clock. We slept on fold-out chairs as a hurricane hit New York and watched as every building except for the Children's Hospital was plunged into darkness. When it was all over, our son was still on life-support and fighting an infection that would further delay his lifesaving CDH repair surgery. We were terrified to leave his side for even a moment. After days without a real meal or adequate sleep, our resident reassured us that it was okay to step outside for a bit. She said, "If there comes a time when we need to have 'the talk,' I'll be the first to let you know." Well, for us that talk never came, so my hope never faded.

I'm not going to tell you it was easy, or that I didn't have my doubts. But I used to dwell on the past, allowing the nightmares and sounds of the NICU to consume me. Much of that has changed. There are still moments or days that set my healing back - a runny nose, a fever, or a flu epidemic create an involuntary protective responses.

Amazingly, most of the concerns are behind us now. Our son's third surgery has come and gone. A month ago he stood up and walked down our hallway, then turned left and walked across our living room without holding on.

So as I drive past the baseball fields now, I can finally dream again.

Now, I turn the car onto my street, and focus on the picture window in our living room where I see the first glimpse of my little boy. He's standing on our chaise, his mom bracing him so his excitement doesn't send him tumbling to the floor. As I walk up my front stairs, he comes into full view, his little blond curls bouncing up and down. His smile makes me pause for a moment, but it's his words that bring me the most joy. I can't hear him yet, but I can see him calling me, "Dada, Dada!" When I open the door, my wife places him on the floor and he quickly walks to me. He grabs my leg and climbs up. I hold him in my arms and he excitedly points to whatever happens to be important to him that day. I get to enjoy the emotions of this moment every day. Yet I never take if for granted because I know there are other NICU dads who would love to be in my position.

As I look back out our picture window, the sun is setting and so too are the nightmares of CDH.

I always knew that I wanted to give back in life, even more so after we found out our son's condition was improving. But I always thought that only millionaires could really make a difference. After hearing from other families about how sharing our story inspired them, I realize that my thought process was so wrong.

It's easy to say I was hopeful now that things turned out well. If you're currently in that dark place in the NICU my words may not resonate with you. But know that there are others that have been there, and you do not have to face this nightmare alone. I choose hope because I knew that this was my one and only chance at being a Dad, and I was going to cherish it whether it lasted for a minute, an hour, or a million years.