Wednesday, May 22, 2013

Thomas Doty- Our Birth Story

By Thomas Doty-

On June 21st, 2012 we headed off for our routine ultrasound. My wife was 21 weeks pregnant with identical twin baby girls. We were extremely excited about our new journey and she had a relatively easy first trimester. That day we were diagnosed with Twin to Twin Transfusion Syndrome. This is where the twins share a placenta and there is an uneven blood flow between them. We went home crushed as we had done some research and the how serious this condition was. With TTTS the mortality rate is 60-100% untreated and it can progress quickly.

On July 2nd we met with Dr. Lynn Simpson at MSCHONY to discuss our options. She was amazing. We left that day with some ease and cancelled our appointment with CHOP. The ease was short lived. Only four days later my wife’s water had broken. She was 23 weeks and 3 days pregnant and the girls were not viable. We rushed to the nearest hospital in fear that we had lost our girls. Her water broke we had to deliver…or so we thought. On ultrasound there were two heart beats and they were strong. So we were transferred to MSCHONY. My wife would be on bed rest, go through heparin shots, steroid injections and courses of antibiotics. The medical staff assured us they would do everything they could. So we wait! The longer they stayed in, the better the outcome. Each day we waited, watching the hours clicked by hoping for another day. The longest of them all was 23 weeks 6 days. Week 24 is the start of viability and the statistics become favorable for survival. This was the D-day (decision day) if they had to be delivered what do we want to do? Do we comfort care or to take all necessary means for survival? The statistics weigh on you. You want to do everything to save your children but what is the right thing to do. We never made a decision we just clock watched and waited for week 24.

Eighteen days after her water broke at 7:30 a.m. The medical team rushed in to let us know it was time. The heart tracing were taking a turn for the worse and it was go time. I got handed the white bunny suit and gave my wife a kiss. I whispered in her ear “It is grandma’s birthday.” May of 2011 my maternal grandmother passed away just before mother’s day. Now on her birthday our new journey would begin. Ava was born first at 1.7 pounds at 8:04 a.m. and a minute later Sophia joined us at 1.3 pounds. I remember Josie asking if the babies were still in but they were long gone to the transitional NICU. They were rushed off to start treatments. This was not the typical delivery where you hear your baby cry and kiss your baby hello.There was no presentation of the girls to us and we didn’t get to hear them cry. This is not what we thought it would be. It was the start of our new normal.

It's amazing at 25 weeks and 6 days, being tiny micropreemies, the girls did not need to be intubated. They were placed on CPAP with minimal extra oxygen support. Things seemed to be going as well as they could. Day of life three Josie was discharged home and we had settled in to take a nap before heading back to the NICU. The phone rang, it was our NICU Fellow, and Ava had free air and needed surgery. We quickly changed and rushed back to the hospital. They decided to place a drain in her abdomen to remove the air and she was intubated. The site of her intubated broke our hearts. We cried. Ava fought on. Sophia gave us the next scare with possible NEC. Once again here is our new normal. My wife stayed by their sides fighting for our children. I would go to work in the morning and then off to the hospital even if for a few minutes. We did not miss a day. The struggles of feeding, breathing, and the dreaded apnea and desat alarms, all became normal to us.

November 7, 2012, a 107 days after our journey began we had graduated the NICU. We have been through hurricanes, minor surgery, multiple blood transfusions, feeding challenges, a lot of doubt and major scares. The journey was not and is not over. We left the NICU with two beautiful girls, friends and a new appreciation of life. The joy of getting 1 ounce of formula or breast milk down became like winning the World Series. It meant our road to home was starting. So on the November day it was our time to take the walk out of the NICU into the snow and finally home. Our girls are here today because of our faith in God, the amazing medical staff at MSCHONY combined with two little beauties that know how to fight to survive. We are blessed to have Sophia and Ava and to be a part of their journey.

Saturday, May 11, 2013

A Papa Says Thanks- A Tribute To An Amazing Wife And Mother

By Joel Brens-
An amazing wife. An even better mother

The moment I stopped looking for love I met my future wife. As cliche as it sounds, that's exactly how things played out for me.  My wife and I hit it off pretty famously from the outset. The first thing I noticed about her was her unwavering friendliness. There was such a genuine warmth about her. We shared so much in common. We are both huge geeks. Her ability to make be belly laugh is something I absolutely cherish. We both came from close knit families, and both wanted to start a family when we were married. Little did we know at the time our son's journey would drastically define and mold who were were as parents and people.

We found out less than two months after we married that we were expecting our first child. We were elated, though my father was losing his battle with cancer. As I talked about in an earlier blog, one door was closing as another was opening. I struggled for a while with my dads passing. The support, compassion, and comfort my wife brought me during those days is just one of a million examples of the wife she was and has been to me.

As we got deeper into our pregnancy, concerns started to arise. Elevated blood pressure, high proteins, and a "old" placenta, as the doctor put it, created a scary scenario that an early baby might be a reality. While we were optimistic and hopeful that things would carry on week by week, I was a nervous wreck on the inside. But there was little I could do to affect the timeframe of when it was time to be parents. My wife, however, like so many other moms, had to keep calm and relaxed during very uncertain times. I know she was worried, but I never really got a sense of how worried because she always acted cool as a cucumber. Even when she was put on bed-rest at 30 weeks.

Once my wife's umbilical cord artery flow became diastolic, meaning it was starting and stopping, the NICU team decided we were days from bringing our son into the world. Much to our surprise, our son decided to come a day earlier than we expected. It was that day I discovered how just much I loved my wife and the mother I knew she would become. She was always at the NICU. She always was upbeat and ready to embrace whatever turns we faced. I'll never forget that.

Through all the ups and downs, through laughter and tears, my wife has been an extraordinary mother. Even when she went back to work full time, she puts enough blood/sweat/tears into parenting it could considered a second full time job. The relationship I have with Jayden is nothing short of wonderful, but there is just something different about the bond he has with his mommy. She has the ability to keep him interested and focused longer when we are playing with toys. He regularly falls asleep while cuddling with her. The level of comfort, love, attention, and laughter Gena brings Jayden is hard to explain. I am constantly amazed at her dedication as a wife and a mother.

Gena this Mothers Day I celebrate the amazing person you have become. The love and dedication you have to Jayden is something to marvel at. I don't ever want you to think I don't appreciate all the hard work you have put into your professional and personal life.

I couldn't be blessed with a better wife and mother to my son. I love you Gena, Happy Mothers Day!!!

Our Happy Family

Where Has The Time Gone? A Preemie Turns Three!!!

By Joel Brens-
Happy Birthday Jayden

Chances are if I was asked the day my son was born what my life would look like in three years, I wouldn't even come close to painting the correct picture. Two new jobs, a stay at home dad gig, a support group, millions of laughs, thousands of tears, countless milestones and I love you's later, I could not feel more blessed about where I am and what lies ahead for me personally, and especially for my family.

One thing I wish I could let every NICU dad know is that the NICU can be unpredictable, and the moment I allowed myself to accept fear, uncertainly, and anger, I was able to let it go. Soon after I found room for hope and since then my perspective has changed how I live my life. Not just as the parent of a preemie, but as a husband, dad, and human being.

Jayden finds a way to amaze us every day. He has come so far from that sweet little 3lbs. 6oz. boy. Some days I wonder if he will ever go to sleep, then in a blink of an eye a month has passed. I am so proud of the little man his is becoming. Are there tough days? Absolutely. But as most kids do, Jayden saves his funniest/cutest moments for when we near our breaking points with him. It's equal parts gift and curse.

Looking back on three amazing years, I'd like to share three lessons I have learned along the way that relate to prematurity:

Year one- no matter the obstacles your child faces, love and attention will help them flourish to the best of their abilities. Be sure to Kangaroo with your children whenever possible. (I passed on the opportunity and it was my biggest regret in the NICU) Play with your child, show them affection, and communicate with them. The response they have is nothing short of amazing.

Year two- Milestones are important, but they are not everything. As the parent of a preemie, holding your breath as you watch your child hit milestone markers is stressful. It consumed me. I lost sleep, perhaps a little patience with life in general too. But then it dawned on me one day as I watched my son do a new small simple task, that our kids are growing and learning every day. Take a moment every day to step back and embrace the moment. Watch your child closely, as they may be doing amazing things you may not have noticed.

Year three- parenting is a labor of love, no matter your circumstances. The last six months have been a blend of exciting progress and hair pulling frustration. Jayden is a wonderful, bright, affectionate, and energetic little dude. He is also going through the "Terrible Twos" stage and to be quite blunt, it's a lot harder than I expected it would be. Coupled with speech and developmental delays, sometimes it's hard to filter between choice and circumstance. Taking Jayden out in public by myself can be an arduous task at times. I remember when i was younger watching parents and thinking "How can they be ignoring their child?" or "I'd never let that fly?". How naive of me...But even on the toughest days there are moments that make my heart smile. You just have to take it one day at a time.

I can't believe we will celebrate three years of an amazing journey today. Happy Birthday Jayden! Daddy loves you so much!

Tuesday, May 7, 2013

Moms Say Thanks- Jessica Brouillard

By Jessica Brouillard-

An eternally grateful mama says thanks... From the depth of her soul...

My whole life I dreamed of marrying my best friend and becoming a Mom….

I met an amazing man - instantly he was my best friend and very quickly we fell in love - we were married, bought a house, both had jobs that we loved, an amazing family around us and the most fantastic friends anyone could ask for - we had it all…. A few years went by filled with friends getting jobs they loved, others getting married to their best friends, and even some were welcoming beautiful babies into this world - it was time, time for us to start the family we had always dreamed of having.

It was February of 2011 and the blood test (you know, the first one of a million) confirmed it - WE WERE HAVING A BABY! In all our lives there had not been a day that we had been happier - we were over the moon! Our pregnancy continued without a single bout with morning sickness, not one single problem - besides a few days where I couldn't keep my eyes open - pregnancy was bliss. We found out we were having a boy, and he looked PERFECT!

On July 5, 2011 our world was thrown for a whirlwind…. I woke up in the morning to a gush - "What is this? Did I just have an accident? What is going on? It can't be my water breaking - I'm only 25 weeks pregnant!" My husband, Keith, was already off to work (an hour away) so I called the doctor and tried to figure out what was happening. They wanted me to come into the hospital to be checked out - so off I went. I sent Keith a quick text letting him know and told him not to worry, I'm sure everything was fine but he could come back down if he wanted to. Premature birth - what was that? I had never known anyone to have a baby early, maybe a few weeks, but 15 weeks early?? That's just not possible - so I must have just had an accident…..

As the doctor started the ultrasound - I trembled, not knowing what he was going to say. They wouldn't go through all of this if it was something simple - so something must be wrong. Just as he uttered the words, so quietly and gently, "There is no water left…." - my husband walked in the door just as my whole world fell apart - I cried harder than I ever knew possible - WHY???? There was no answer…. Sometimes, bad things happen that you're powerless to prevent and this was one of them.

But there was my husband, holding my hand, listening to the Doctor when I couldn't bare to pick my head up, calling our parents for them to meet us at the hospital that we were being transferred to, gathering my things, and calling my boss to let her know what was happening. It was effortless - he kicked into gear and took a world that just fell apart and put all the pieces back together.

Our son didn't come that day, they were able to stop my labor and after a very long day and a half, they put me up into a room where I would stay on bed rest until 34 weeks (if our son would stay put). Well, he didn't wait that long, but it was a VERY long 2 and a half weeks - we lived for each 12 hour mark. Keith was there and his strength never wavered. I had good days and bad days - but he was there, sleeping on a couch day in and day out, making sure our house was still in order and the lawn was being cut and the mail collected, and in between it all working his full time job without skipping a beat. It seemed like every other day we were being shipped down to Labor and Delivery to just be sent back to sit in my bed and wait - wait and hold on for dear life to keep him in my warm, dark, safe belly.

On Wednesday, July 20th, Keith woke up and started getting ready for work - I got up to use the bathroom and felt that same "gush" all over again - did my water just break again? I didn't think much of it - so off to work Keith went and I, as I had for the past two weeks, just sat and waited. They did my morning tracings and saw that I was having some contractions - news to me, cause I couldn't feel anything. Well, I couldn't at that moment....but then they started, it felt like there was a tennis ball inside my belly pushing to try and get out through my belly button. I called my Mother In Law, because now, I was scared and she lived closest to the hospital - and I needed someone, anyone, to come and tell me everything was fine. I text Keith too, but told him to stay at work, I'm sure this was the same thing - send me down to Labor and Delivery and I'd be back before lunch time.

Just over an hour later, as I sat in silence with my Mother In Law - in walked my husband. "I couldn't just stay at work and wait, what's going on?" There he was again - in a moment when truly, all I wanted was him to hold me (but of course, being me, I never really say what I want because I didn't want to bother him) - he was there - and I didn't even have to say it. Down we went, just like we suspected to Labor and Delivery - in went the Magnesium (again - for what felt like the thousandth time) - and we waited. The nurses loved when we came down - it was nice and easy - throw a bunch of Magnesium in me and just sit and wait for everything to stop. My husband sat next to my bed with my Mac and typed a paper for a class I was taking for me as I gave it to him verbatim. He got me water when I felt flushed, rubbed my back when I was uncomfortable, and took away my worries with just one kiss on the forehead. We stayed down there until about 4:30pm - and they said, OK, you're going back to your room. So up we went again, to sit and wait.

Dinner came and I wasn't that hungry so I didn't eat. Then I started feeling contractions again - the nurse told me after my most recent tracing that if they got any worse to call them right away. I think I held my breath a few times to pretend it wasn't happening - again! Keith sat by my side, timing my contractions minute by minute and keeping track so he could tell the nurses whatever they needed to know. In they came, and I had to tell them that they were worse - so down we went again..."This is an extreme precaution, I'm sure you'll be back up here again tonight, just want to make sure everything is OK."

Down we went for the second time that day - but this time was different, this time I felt different. This was really going to happen - we made it two and a half weeks - but this little boy of ours was ready to enter the world. Keith held my hand the whole way - and while we sat there - hoping that my intuition was wrong - my contractions got worse. I told him it was time to make the call - so off he went to call our parents, to wake them out of bed at 3am for them to come to the hospital, but this time it was real.

They gave me my epidural around 5am - we started pushing at 5:31am, and at 5:39am the most beautiful, perfect little boy came into this world. Weighing in at 2lbs 7oz and a mere 14inches long - he kicked his way into the world and our hearts. I sobbed when I heard him cry and just held onto my husband with all that I had. As they wheeled him past us and off to the NICU, they turned his head towards us - and he stared directly into my eyes, directly into my soul - like he was telling me, "Hey, Mom & Dad, I got this!"

My husband, through every up and down - through my laughter and my tears - stood strong and never waivered. Through 56 days in the NICU (I don't know what we did, but our son read the handbook and flew through his time there) - weight gains, weight losses, 1mL feedings, quiet days, feisty days, room changes, cheering for bowel movements, late night and early morning phone calls, my own unpredictable mindset, and some of the hardest days of our lives - my husband was my constant. No matter what I said, how much I cried, how much I laughed - he was right there through it all - showing a strength that I had never seen from him before.

I always knew he was an amazing husband, and I knew he would be a great Dad one day - but I never even imagined how great of a Dad he would be. He puts 150% of everything he has to give into his family, he ALWAYS puts his family first, and even though he works 60-70 hours a week - you would never know it, because he is our sons best friend, and he is my superhero.

Thank you is not even enough for my dear husband, as I don't think I will ever be able to come up with the right words for all that he's done and how much it all means. The funny thing is, he does it all and doesn't even realize he's doing it - it's just him - strong, compassionate, loving, selfless, hardworking, giving, honest, and the rock that holds our family together! Thanks to him - our son is 21 months old and shows no signs of being born 13 weeks early - and I attribute that to the fact that my husband was every bit of involved as possible - and worked with me and our specialists to achieve great things with our baby boy.

Keith, you completed me the day that we were married - and since then, you have made every dream I have ever had for my/our life come true. There is no man in the world that could ever compare to you and all you have done and continue to do and be for our family. From the depths of my heart - I'm thankful for you....In no way, would I ever want to live a life without you by my side. I look forward to new and exciting adventures with our family and to one day, a long time from now, be rocking on the front porch together - still holding hands and laughing. I love you babe - more and more every single day!

Monday, May 6, 2013

I Knew When I Met You An Adventure Was Going To Happen...

By Jonah Rhodes-

What an adventure we have been on with Nash the last 13 months. To say it’s been breathtaking would be the understatement of the decade. I have a few more gray hairs on my head and in my beard because of it as well. But the past 4 months have made up for all of the hard months we experienced by leaps and bounds. Our sweet Nash is progressing faster than the doctors thought possible. His lungs have grown bigger than they thought, and he isn’t fazed by anything.

One thing we have learned with having a preemie is there are a lot of doctor’s visits and appointments. One of the main appointments we have is called Vent Clinic. At VC, Nash is seen by his team who accesses his progress and gives us a plan for weaning his ventilator and the different goals they want to achieve by the next appointment. The last 3 appointments have been wonderful. Nash has amazed his doctors at how well he is doing and handling all of the vent weans and other progressive steps they planned for him. The ultimate goal is to have him off the vent and the trach removed by the end of the summer. This could not come soon enough.

Now that the dreaded RSV season is over, we have been given the 'ok' to start taking Nash out and about with us when we want. This is something most parents take for granted. There are many things that most parents of healthy babies take for granted, but that’s for another time and place. So for a year, Nash has only left the house for doctor’s visits and that’s it. But about a month ago, Nash got to go on his first social visit to our local NICU reunion. I must say he was treated like VIP. Everyone was so amazed at how big he was and how well he was doing. I still get tears every time I see him doing ‘normal’ baby things. Nash has now been out for a total of 3 social visits, and he was a hit at everyone and handled it amazingly. I must admit this was a little scary for me. I don’t handle change well. I like being able to control the environment around Nash. So, Nash being in a public place scares me to death. I like being able to ask everyone coming around Nash if they have been sick or if they washed their hands. This is a new adventure that I am slowly becoming comfortable with.

I’ve learned that this adventure will have many chapters and as one chapter closes another one that's just as exciting starts. I must say I’m glad that the new adventures are exciting in a good way and not it in a ‘your son coded for 9 minutes, and he’s not responding to CPR’ way.

Nash will soon be off the vent and the adventure of him learning to walk and then run will start which will scare his Mom to death and thrill me to death. We will start the adventure of helping him learn to talk and express his feelings. Sometimes we will walk, sometimes we might even crawl, and then there will be times we will end up running on this adventure. But it’s not the speed that we travel this adventure that matters; it’s the fact that no matter how slowly we are making progress towards the goal, progress is being made. So no matter how long the adventures takes, I’m willing to walk, crawl and, yes, willing to run with Nash on this great adventure he will know as the Life of Nash.

Moms Say Thanks- Maria Brislin

By Maria Brislin-

Shortly after our wedding I became a little obsessed with an unusual movie. There was no dialogue and very little plot- just a bunch of Emperor penguins in the middle of Antarctica painstakingly circling through gale force winds, each one slowly starving as it battled to protect one small, fragile egg. I loved every minute of this epic struggle to parenthood and barely noticed at the time that it is the male penguins- the dads- who precariously balance the egg atop their feet, surrounding it with warmth throughout the endless Arctic night, while the moms disappear in search of food. When the moms return, months later, it's the dads who- if fate has been kind- introduce them to their precious chicks.

Five years later, my fertility specialist optimistically said, "Here's a picture of the baby" as he handed me a photo of the one egg I had produced during our IVF cycle. (For the uninitiated, during an IVF cycle you're supposed to make about a dozen- so only making one egg was a complete failure; until that one egg became an actual baby.)

But then 20 weeks into the pregnancy we learned that our unborn baby had a congenital diaphragmatic hernia, or CDH, and with that came a mere 50% survival rate. Somehow we withstood 20 more weeks of pregnancy purgatory. I focused all my time and energy on trying to calmly grow a new human, while enduring endless medical tests and struggling through carb withdrawal (yeah- I got gestational diabetes, too). Meanwhile, everything else was left to my husband. He paid the bills, took care of the dogs, cleaned the house, vetted surgeons, argued with insurance companies, held my hand through the nicu tour, and meticulously painted and decorated a nursery for a baby that might not live.

And finally, as Hurricane Irene headed straight for New York City, he drove us to our Children's Hospital and then slept while I struggled through a long night of labor. The nurses joked about it at the time, saying that I shouldn't let him rest while I suffered- but we had a plan all along- he was my penguin.

Shockingly, when my son was born he was pink and let out a tiny cry. He had apgars of 8 and 9- miraculous for a CDH baby! I had been so certain that he would code at birth that my MFM actually grabbed my hand and put it on my son's head- I was paralyzed with amazement at his life. All the while, there was my husband- cutting the cord, joking with the doctors, and dutifully pressing the button that we all knew had stopped administering pain relief long ago.

As planned, within seconds of delivery, our son was whisked away to the trans-NICU and a few hours later my husband was finally allowed to cross the hall and meet our son.

All alone he walked the path from being a man to being a dad; and without me by his side he looked past the ventilator, the wires, and the tubes and fell in love.

I was stuck on a gurney in labor and delivery. For nine months I had protected our son. But in those first, most critical hours, it is the NICU dad who walks the solitary path into the perilous arctic night, who takes a tiny hand in his own and whispers secret words of love and encouragement that only his baby hears. Alone, he ignores the wail of alarms and takes in what the NICU nurses say, alone he talks to the doctors and specialists. Then he takes a camera in his hand, hoping that he can capture the moment, hoping that a few pictures can contain all the love to bring back to his wife who lies helpless and broken by fear on a gurney.

In retrospect there are a million moments, both big and small, that fill me with gratitude when I think about my husband. From working a full time job and commuting over four hours a day to take me into NYC to see our son, to running interference with everyone from family members to charge nurses, to making sure that there was a clean bottle waiting every single morning after our son came home; my husband relentlessly faced the hardships of each new day, always contemplating how he could balance even more of the load to further lighten my share of the burden.

But out of all these things, the one that I appreciate the most is that when I could not be there, he walked alone into the eye of the storm and surrounded our newborn son with warmth and love.

Hours later when I was finally well enough to be rolled on a stretcher into the trans-NICU, it was my husband that- fearless and full of pure joy- introduced me to our precious son. And for that, I am forever grateful.