Thursday, January 31, 2013

I Choose Hope- Keira Sorrells

By Keira Sorrells

Many people can pinpoint a specific moment in time when they decided to choose hope during a life challenge they were experiencing.  They can remember the details surrounding the situation when they were able to say: “I’m moving forward.  I will not let the ‘what ifs’ keep me from experiencing and enjoying life.”  For others, choosing hope is not a singular moment; it is a choice we have to make over and over again. 

As a result of giving birth to my triplets at 25 weeks 5 days gestation and the untimely death of one of my daughters, I’ve battled grief, depression, and Post Traumatic Stress Disorder for the last six years.  Neither PTSD, grief, or depression follow a linear path from which you emerge unscathed after you’ve felt all five stages of grief or followed some other method for processing these emotions.  It is a bumpy ride with many twists and turns. 

Over time I have begun to emerge a more centered, compassionate, hopeful person.  But I have had to learn to live with and accept the continual state of not knowing what may be around the corner.  Hope seemed so elusive for so long that it is difficult to pinpoint a singular moment when hope became my choice.  Choosing hope has come to mean many things to me – it means embracing the life I have at the moment I am living it.  It means setting my work aside and focusing on my girls.  It means resting in my faith that God has an ultimate plan and one day I will see my darling baby again.  It means choosing to be a loving, intuitive wife for my husband and partnering with him along this parenting journey.  I can remember a handful of defining moments where I chose hope and these have become the moments I reflect on when hope tries to slip away.

My first memory was when I sat at Zoe’s bedside in the NICU; it was week five of what would ultimately be a 40+ week stay.  My mother urged me to send birth announcements to celebrate the fact that my triplet girls had arrived.  I adamantly refused because I wasn't sure if I was to announce the birth of two and the death of one.  I needed to be sure.  On this particular day Zoe’s doctor came by for rounds and flatly told me there had been no change in her condition or oscillator settings from the day she was born.  This was not good at all.  I looked at him straight in the eyes and asked, “Do I need to be planning a funeral?”  He didn’t say “No”, instead he replied with: “Don’t lose hope.  Never lose hope.” 

So I took those words and delved into their care in any possible way.  I decided that Avery & Lily would come home and so would Zoe; although we had no idea when that might be.  I decided to take each day one at a time and not worry about how many weeks or months we had to stay in the NICU.  Nine months later, Zoe joined her sisters at home.  At the time we had no idea her time with us would be short-lived. 

Zoe died just four months later and I was sent into a tailspin of depression.  The effects of which had a way of pulling me down, a way of taking me to places of grief and despair I hadn’t known before.  And so there I sat in November of 2008, 9 months after Zoe died, with Jeanine, a former NICU nurse who had become a Christian grief counselor.

I saw Jeanine weekly for counseling sessions, most of which involved me sobbing on her couch.  I suppose I wasn’t making much progress and on this particular day, she decided I was ready to be challenged.  She began by saying: “You have to stop digging in your heels and resisting the natural grief process.”  She paused, and continued.  “I'm going to tell you something else that's even harder to hear; Zoe doesn't need you anymore.” 

With that I had a complete breakdown, an outpouring of sorrow.  The hole in my heart seemed to grow larger as my stomach sank to my feet and my shoulders slumped in surrender.  When I could finally speak, I looked up at Jeanine and said "But I still need her."

She went on: "Keira, you have to stop living in death. You have to live in the reality that is the life you have now. You have to live in this life for you, for your husband who needs a wife, and for Avery and Lily who need their mom.”  And so, I made that choice of hope again, only to find myself six months later with my ten-year long marriage on the brink of collapse.

I had been going about my business being depressed and feeling very self-righteous about it.  I was the mom and I was allowed to grieve however I wanted for as long as I wanted with little thought to others around me. This left my devoted and loving husband to come behind me and fill in all the holes that I left open in the care of our house and our girls.  There were a couple of days when he seemed off; we barely spoke to each other and he often fell asleep on the sofa.  This behavior was very unlike him, since he wouldn’t speak to me I sent him a message.  I expressed how concerned I was for him and thought for sure this was his collapse into grief and depression.

His reply caught me off guard and made me see just how much damage had been done to our relationship.  He simply wrote: “The way I've been acting these last two days has been the way you’ve been acting towards me for the last two years.  I don’t know how much more I can take.”  His words frightened me.  He had been by my side for 14 years, but I had been so caught up in my own grief that I failed to see that Richard was hurting too.  The only other person in the world, whose hurt was as deep as mine, was his, and he needed his wife back.  We needed to grieve and heal together.  It was a turning point in my grief process and in our relationship.

So I made the choice again, as I do each day, to not give up, to keep moving forward and not let the NICU or Zoe’s death crush our family.  Our love for each other and our love for all our children can sustain our family as long as our constant companion is hope.



Keira Sorrells
Executive Director, Zoe Rose Memorial Foundation
Director of Operations, Preemie ParentAlliance
Part-time blogger Tripled Pink

Tuesday, January 29, 2013

I Choose Hope- Jonah Rhodes



But I will hope continually, and will yet praise thee more and more.
Ps 71:14

The week of January 20 will go down as the start of the hardest year of my life so far. It was this week that my wife and I wife started our journey though one of the longest valleys we had ever walked through together. I knew it was going to take all the faith and hope we had.

The week of Jan 20, 2012 started a whirlwind of events that would result in the premature birth of our son, Nash, some 3 months later. During the middle of the night on January 20, Melissa woke me, unable to speak, but letting me know she was in excruciating pain. Her entire body was covered in sweat, and soon after, she passed out. After several days in the hospital, and very little diagnosis, she was sent home. Thankfully, we were told that Nash was fine. Though this situation was never diagnosed nor connected to her pregnancy, we have no doubt that it directly impacted it. Fast forward a few weeks, and I find myself making the decision to again take my wife and unborn son to the ER. Once again, she woke in the middle of the night realizing something was wrong. This time we wouldn’t go home. That night Melissa’s water broke, and it was the first time we really chose Hope over what the doctors said.

The doctor said your son will most likely be born tonight and at 24 weeks; there is not much we can do. Hope said your son will be fine; don’t fear. In that moment we could have given up all hope believing the horrible things we were hearing, maybe this just wasn’t meant to be. We could have mourned the loss of our son and given up. Instead we did what we had been taught to do in those times of helplessness. We called out to the One who we have put our faith and hope in our whole lives. The One who created Nash. We called the family and we prayed. A peace came in the room. We knew it would be a long journey, but we had no doubt that we would prevail.

Just 2 weeks later, Nash was born. We chose hope again; when things looked dim we continued to hold onto Hope. I’ve learned though all of this you can tie a knot in the rope and hang on, or you can give up and not know what could have been. I know the doctors must have thought Melissa and I were just some young, dumb couple who didn’t grasp the severity of the situation. That was okay with us. We did grasp it very well, but our Hope wasn’t in man, but in our faith.

At 11:35pm the night Nash was born, the NICU doctor burst in our room saying that he had to insert a tube into Nash's chest, and if it didn’t work, it was very likely that he wouldn't live through the night. He left, and again we prayed and chose Hope. We laid back down to rest. After close to an hour and a half later, the doctor came back with good news and a sigh of relief in his voice.

Normally, we are somewhat private people, but we chose to share this journey, the most meaningful, intimate story of our lives with friends and strangers, because we hope to show the goodness of our God. We hope to allow people to look at our lives, the lives of regular people, and watch a miracle take place. Whether you are just starting this journey with your family or you have been on the journey a while, Hope is your best friend. Never give up Hope!

Nash never gave up fighting, so how could I give up hope in him? I chose Hope over doubt, fear and negativity, and it has helped me walk the longest valley of my life. As the journey though this long valley comes to an end, I now choose Hope again to help climb the mountain with Nash to his future and to whatever he wants to be in life. I will always teach him to choose Hope first, and he will be able to do anything.

God Bless

Monday, January 28, 2013

Your Story Matters

Hang in there, buddy. You're going to do great things.

To all family and friends of Papas Of Preemies- I wanted to take a moment to reflect on the impact this community has made on me on a personal and professional level.

I have spoken about it a number of times, but when I launched Papas as a page on Facebook, I was uneasy and unsure of what response it would have. Would dads take notice? Would my relatively tame 25 day NICU stay carry weight in the NICU community? Much to my delight, three nights in a dad (contributor Rob) wrote a beautiful post on our timeline. I knew that moment we had something special, that there were dads out there who needed support and community as I did.

Soon after the creation of the page we began the process of reaching out to dads to share their stories about being parents of preemie babies. It wasn't until I received an email from contributor Mark inquiring if he could share his story about his son Owen that we addressed the reality not all NICU stories are direct result of prematurity.

Everyone who has contributed to this community has a different journey, and every single story matters. Whether your child is a micro-preemie, or you spent three days in the NICU, whether your story is a direct result of prematurity or not, it matters here.

We love to share stories, because while no two are the same, we can certainly find solace with others  in similar circumstances. The love, the fear, the joy, the darkness, the hope. It's all relevant regardless of your journey, Papas is a safe place to talk about your time in and after the NICU.

Thank you for joining us and being part of a special community.

Thursday, January 24, 2013

I Choose Hope- Joe Mata


My girlfriend and I entered the emergency room at approximately 9:08 pm on June 28th, 2012.  She had been experiencing strong and regular contractions and was only at 25 weeks gestation.  As soon as she was taken to triage by the nurses, I began a group text message to keep our parents and family up to date on her progress.    

After what felt like an eternity of waiting, I was escorted to her room by security.  It was then that nurse Christy began to update me on what was happening and informed us of all the risk factors involved with a delivery at this stage of the pregnancy.  We were in fact in labor, and they were going to make every attempt to stop the contractions.  An ultrasound was performed to check the baby's development and steroids were given intravenously to speed up the baby's lung production.  After several hours, the contractions had not stopped and regardless of their efforts, our son was determined to make his entrance into the world.  

As we sat there in the room, and as my girlfriend struggled to cope with the pain, and as I struggled to comfort and reassure her, I was overcome with emotions of fear, panic, worry, and yet excitement at the thought of meeting our son.  Finally, the decision was made to proceed with the delivery.  On June 29th, 2012 at 12:59am, I sent the following message...

Doctor is here. We are going to have a c-section. The nurses are prepping her right now. I will txt asap. Time to really pray for her and baby. God be with all of us!

It was then that I chose hope

At 1:26 am, our son was born weighing 1 lb 14oz.

Six months have passed.  Our son spent 75 roller coaster days in NICU,  and now weighs 13 lbs.  To this day, I still have all the messages saved on my phone that I sent out to our family which now serve to me as a reminder of the night that our lives were forever changed and as I sit here and read over all the messages, my eyes are filled with tears at the thought of what could have happened, and at the same time, at the blessing we received.

Wednesday, January 23, 2013

CDH Update



As many of you are aware, I am the only contributor to Papas of Preemies whose child was not a preemie. I’m not sure how I came across Joel’s blog but am so glad I did and that he allowed me to share our story. Not only do I have a supportive group of guys who have been in the NICU environment, but I’ve also made a great friend in Joel and look forward to continuing this long distance friendship for years to come.
    
Just recently some groundbreaking information came out about research for Congenital Diaphragmatic Hernia or better known as CDH to those who have faced this diagnosis. I thought it would be great to share this information and also some background on CDH. All of this information was gathered on the website from the DHREAMS Study which my wife, son and I are a part of.
     
If you are interested, I have attached the links to the study and the most recent information. It’s an honor to be part of Papas of Preemies, and my hope is that we reach as many struggling Dad’s as possible no matter what diagnosis landed their child in the NICU.
     
Fathers aren’t the best at showing emotion or admitting that they need help so we may never understand our true reach in this initiative. I recently saw an example of this when a Dad who I work with, reached out to me to talk about his situation. He explained to me that he saw my blog shared through LinkedIn and just wanted me to know that he had a similar experience with a different diagnosis and he understood what I was going through.
     
So I appreciate all those who have liked, shared or re-tweeted my blogs and hope that you will do the same with this information, so others can understand the letters CDH. It’s a devastating diagnosis, and if you face it, it may be the toughest thing your family will ever face, but know that there is support out there through formal charities or just a simple contact to another Mom or Dad who’s been through it.


Mark Brislin 
Papas of Preemies Contributor

Tuesday, January 22, 2013

I Choose Hope- Jacob Hedgespeth

By Jacob Hedgespeth


The day Conor was born changed my life forever. I had many moments in the days leading up to his birth where I would need to choose hope. I thought that might end after he was born. Man, was I ever wrong. On July 28th 2012 at 4:55 P.M. the smallest life I had ever seen came into this world. I watched him take his first breath and heard his faint little cry. After the NICU team got him breathing fine I was able to go over and see him. I walked over only a few feet but seemed like a mile, I reached my finger out and he grabbed it. I whispered to my son fighting tears “It’s okay buddy, Daddy’s here.” At that moment he opened his little eyes and stopped crying as if to tell me “I know that voice! That’s my Dad!” That was the moment I knew I had to choose hope. 

I had to press on; Conor was so I had to. After that my wife was barely able to kiss him and he was taken away to the Level IV NICU at Kosair Children’s Hospital. I chose Hope. This was the start of many more moments I would be faced with that same choice. 

I was told by one of my uncles who is an APRN that has stuck in my head throughout this whole experience. He told me “Unlike adults, Babies are fighters Jake. They fight with all they have.”  Conor was a fighter and that proved to be true very early. Conor was on a bubble CPAP machine for the first several days of his life along with many other treatments. When I made my way to the NICU to see him it was devastating to see such a little body with all those tubes, I chose Hope. 

My wife after surgery hadn’t eaten in about 30 hours so she was very weak. After recovery they moved us to what was our home for the next 9 days, while nurses talked to her she just fell asleep, mid-sentence. I had to make the choice again; I had to be a rock for my family. I had to make sure that everyone was okay. It was my responsibility as a husband and as a father to make this situation better. 

It was over 24 hours before the Doctor cleared my wife to make the wheelchair trip to see our little miracle. Taryn broke out in tears when she saw him, as she felt responsible for what happened. I chose Hope. My wife’s body was shutting down the night we went to the ER, she had developed HELLP syndrome, about 4% of women will suffer from this.  Nightly I was on milk runs from our hospital room to the NICU; it was two to three times a night. The hardest was always about 3am. I chose Hope. All in all I want to let all NICU/Preemie dads know to always choose hope. Your little miracle that calls you Daddy will never not chose hope; they are fighters. Don’t give up on them, as they will never give up on hope.

Friday, January 18, 2013

Moms Say Thanks- Jessie Smith

By Jessie Smith

Our story began on a beautiful day in October. The moments I had dreamed about my entire life - the baby shower, preparing for the final stage in pregnancy and delivery, and enjoying the last moments of a beautiful next chapter in our lives together - were quickly taken away when I found out after arriving to the doctor's office that day that I would need to be admitted to the hospital immediately.  As usual, my husband dropped everything to be by my side within a moment's notice.  He held my hand and comforted my tears when we found out at 28 weeks and 3 days that I would be hospitalized until the birth of my son due to sudden onset Severe Pre-Eclampsia.  

The next few days were a blur of confusion for me, trying to figure out if I would in fact be in the hospital for the next two months, if we were delivering early, and the poking and prodding of the nurses and doctors giving me sleepless nights.  My husband, continuing to be by my side, often brought me small but heartfelt surprises to try and lift my spirits.  

On the morning of October 9th, the doctor entered the room and sat on my bed around 6am.  It was decided:  at an early 29 weeks, after steroid injections to help build his lungs quickly, after a continuous insulin drip and after my blood pressure reached stroke levels, our little boy would be born via C-Section.  I don't believe in that moment I had fully accepted the things to come, as I was rather okay with everything, maybe even excited.  Looking back on everything I was in a state of complete and utter denial.  Besides, how could this situation possibly be okay with this little innocent person being born at 29 weeks, cut out in the most unnatural of ways?  Nonetheless, I called my husband at our home and without question he was in my room within an hour.

While on the operating table, my husband sat by my side.  My chest began to hurt profoundly while the doctors were cutting me open to take out my son.  Because my blood pressure was so high and the doctor had already confirmed it was “stroke level”, I prepared myself to die fearing I was having a heart attack.  Despite the drugs I was given to calm me, I went through my entire family (my parents, my brother, my husband and my son) reassuring myself that they would in fact be fine without me alive.  I quietly prepared myself to die, hand in hand with my husband.  I remember hearing him telling me that I was doing a good job and that he loved me. With eyes closed, I concentrated on every word he said, thinking of all the beautiful memories we had created together over the past five years of marriage: "I love you too, I love you too, so much". 

After our son was born, I was jolted back to realty in a state of confusion, not sure if I was alive. The questions I had were answered after hearing my husband exclaiming through tears that “He’s a boy!” and “That’s my son! He’s here!”  Within a few short hours, after I was stapled back together and taken to the recovery room, we found out that our son had emergent medical issues that would cause him to be taken to a neighboring hospital’s NICU.  He would die without intubation, he would die without the first surgery, and he would die without a G Tube allowing him to eat.  Nothing was certain.  I was frightened – frightened for our little boy, frightened for myself, frightened about the future and the “what if’s” that come with uncertainty.  My husband stayed by my side without request, to comfort me.  It wasn’t until he found that he could see our son after surgery that he left to go be with him.

From that moment on, until we were ultimately discharged, we had endured the rollercoaster of the Neonatal Intensive Care Unit – some moments being those that would have been sure to defeat the strongest of marriages.  I was not given the opportunity to think about what my husband was going through during many of those moments, as I was consumed with fear and sadness for my son and for myself.  It was until after it was all said and done that I was given this chance. 

Fathers in the NICU environment rarely receive any praise for the role they play in the life of the mother and child.  Like my husband was for me, these men are often times the only person who breaks the vicious cycle of isolation that can arise for mothers, providing them a sense of feeling that there is in fact one person in the world who gets everything she is going through.  My husband was that person.  Through the entire crazy ride, he was my rock, my comfort, my best friend.  Words will never be able to express the amount of gratitude and respect I feel for him.  He has incredible strength – he has hidden his fears, held back tears, and remained strong for his family despite the worries he had in his own mind.  I’ve never had to ask him to be a support to me, yet he is and continues to be.

My darling husband: Thank You.

Thursday, January 17, 2013

Early Intervention- Every little step you take

My how you have grown
By Joel Brens

It's been a while since I've blogged about Jayden's speech progress and overall development. We decided back in November to bump up his therapy sessions, (two speech therapy sessions and one developmental and occupational therapy session a week) in hopes to kick start his speech development as in some ways we felt it was stalling.  As part of the new schedule he goes to a class once a week at a building full of inflatables that covers ST and OT. The first time was a complete disaster, as the noise really got to him. I wasn't sure that it would work out. But he has since adapted to the environment and his instructors have seen significant improvement.

Until recently it has been slow, but steady progress for our little guy. His cognitive skills have always been strong, responding to instruction and engaging in activities. But as of the last few weeks we are starting to see signs that he is really turning the corner. Some are obvious, like the frequency he is stringing two words together, (hi mama, hi papa, bye bye mama, bye bye dada, more please, all done) and some may not be as blatant, but are signs he's putting it together. (Most notably direct eye contact when speaking, asking for help, new sounds, and taking initiative by showing me what he is talking about)

Every child will learn and develop differently, and it's so difficult to not go crazy as you wait for visible progress to happen. But I can't tell you how many times people who aren't around for the daily routine will take a second to say how pleasantly surprised they are with Jayden's improving speech and interaction.

It's so easy to miss that as a parent who is at home with his child on a daily basis. I know he is improving, but sometimes it's that outside perspective that really strikes a chord with me. Yes, he IS improving! Yes, it IS only a matter of time before the floodgates open. Yes, I am one excited papa.

Every little step you take, daddy will be there, good buddy. I am so very proud of you!

Wednesday, January 16, 2013

I Choose Hope- Jeromy Guthrie


When did I choose hope?

My son unintentionally chose to come into this world 10 weeks early. Needless to say shock, fear, confusion flooded my mind and soul. It was too early, my wife was struggling, in pain, and bleeding. Ambulances filled our driveway. Lots of questions, doctors, nurses, medicine, etc…..It was fast, chaotic, fearful, tense, and much more.

For the first 48 plus hours so much happened, so much that could have gone wrong didn’t. But looking back I don’t think that it hit me that it was too soon, too early until I saw him the first time, in the NICU struggling to breathe. We were at a birthing center that had only a Level II NICU and I remember the nurse practitioner and Social Worker telling me all his issues, and their inability to have the sufficient level of care that he needed. They needed to transfer him.

That’s when it hit me for the first time; it’s possible that he might not live.

That’s when I chose to have HOPE. Hope that God would hear my prayers, save my son, give me courage and strength. Hope that my wife and I could get through this. Hope that my son would keep fighting. Hope that all my hopes about having a son wouldn’t end here. That it wouldn’t end now, not like this? I don’t know what I chose before that. I am a person that when adversity strikes, I find a way to get through it. Here I was in a place I had no control. There was absolutely nothing I could have done. But I could and I did have hope.

I choose Hope, because when I look back, that is all I had. That’s the only thing I had any say in, whether or not I chose Hope. Hope is an amazing, mysterious thing and for whatever reason, my son made it. He is seven now. I still Hope, for different things for him now, but I still Hope. I know that for so many parents, they don’t get to know what it’s like to have their child graduate from the NICU. I would like to think that if that was me, somehow, someway I would still choose HOPE.

Tuesday, January 15, 2013

Moms Say Thanks- Nicole Penwarden

By Nicole Penwarden

The words thank you do not seem to cut it when I want to say thank you to my husband.

My family has been down the NICU road twice and during both of those times he helped me keep it together on all fronts.

Back in August of 2011, I was 34 weeks pregnant with our first child and things were going great except for my inability to a sip or two of my favorite drink, coffee. On August 27th we were both going to try and lay
down for a nap. Being 34 weeks pregnant, I couldn’t get comfortable and decided to go surf the net for a while. My husband was able to fall asleep and take that much needed nap.

In the middle of his nap I felt a gush of water and hollered at him to get my phone. While I was panicked as to whether my water broke and trying to get my OB to listen to me that no this really wasn’t my bladder, this was huge gushes of water, he kept calm and pretty much said let’s just go to the hospital.

I was indeed in labor and I was scared. We had a flood of doctors and NICU staff come in and talk to us about what would happen after our son was born. My mind was racing while dealing with contractions, he kept me calm and listened to the NICU staff. When I said I can’t do this anymore he helped me get focused again and continue with pushing and helped me with my breathing.

After our son was born, my husband followed him down to the NICU and stayed with him until I was able to go down there. I was an exhausted emotional mess yet he kept his cool and was calm about it all. He stayed focused on Sebastian and myself.

Being this was our first child and we still thought we had six weeks left to get the nursery ready, we had nothing ready when Sebastian arrived. So while I was recovering from birth, he swung into action and got
everything ready. He redid our computer room that became the nursery. He built the crib and got things ready for that eventually day when Sebastian would be discharged from the NICU.

When I would cry looking at the empty crib he would hold me and remind me that our child was where he needed to be to get healthy. He reminded me that the nurses were helping us learn how to be parents to this little guy. He helped focus my mind.

Being I had a uncomplicated delivery, I was only granted 6 weeks of maternity leave. Sebastian came home after 3 weeks so we only had three weeks to bond as a family. He helped make the most of it. Then I had to return to work.

My husband stayed home and cared for our son along keeping the house together. He knew I wanted to be home with them so he would send me texts with pictures of them together. He would call and give me updates on their days.

I don’t think Thank You says enough for what he did.

Flash forward to February of 2012…

We found out we were pregnant again. We wanted two and wanted them close but this was not quite as close as we expected considering it took us 4 years to have Sebastian. Things started out well and being we had one premature baby, precautions were put in place to try and help avoid it again. While I was going to weekly P17 shots and ultrasound appointments, he stayed home with Sebastian and again kept the household going.

When I was 21 weeks along I went in for a routine ultrasound. I was promptly told I need to get to the hospital as I could possibly be losing the baby. I was a complete and utter mess, crying and blubbering into the phone at my husband. He was able to get a friend to watch our son and rush me down the hospital in no time flat.

He remained the strong one and kept me calm while doctor’s were trying to decide if a cerclage was the best course of action and we had to have talks about what if…

After my cerclage was put in I was placed on bed rest. He did not even blink at the daunting task of running the house and taking care of our son and me for 19 or so weeks.

At 26 weeks complications starting to occurring with the pregnancy. Again he remained calm, kept me calm, cared for our son and helped me through some of the scariest times namely the day the doctors said to us, “You are having a baby tonight”. That baby was coming 14 weeks to soon…

As like with my previous delivery, he walked me through the breathing and kept me calm. He made sure our little 2 pound 12 ounce little man was doing well after the delivery. He made sure our son at home was being cared for. He stayed by my side all day and most of the night that day. Our 2nd son, Sammy spent 97 days in the NICU.

When we ran into issues with the staff and I was in tears, he was on the phone talking to the nurse manager. He was arranging meetings with the nurse manager. He pushed from them to keep us in the loop of our son’s care when my attempts fell on deaf ears. During those long 97 days which I had to return to work 7 weeks into that, he kept the house going again, he cared for our son, he kept me smiling on those dark days where I found it hard to get up and go on with life.

Now that our son is home and has been for a little over 2 months now, he cares for both of them and the house. I feel like he gets short changed in respect for what he does and thanking him is not enough for me. I wish there was more I could say to let him know how much I love and appreciate all that he does for our family and did during both NICU stays.

At night when I was dead tired from work and having time with our older son, he gets things for the overnight feedings ready, he gets our son Sammy’s meds ready for the overnight, he puts Sebastian to bed if I fall
asleep.

He really deserves so much for everything he does and I just want to say thank you so much sweetie for being the best husband and father. Thank you for being my rock during all those dark times and even now after the NICU when things have been stressful for me with work and all of Sammy’s
doctor appointments, etc.

Thank you, thank you, thank you for the bottom of my heart.

Monday, January 14, 2013

I Choose Hope- Rob Berry

By Rob Berry

On April 9th, 2011 my wife gave birth to our daughter at 24 weeks gestation changing our lives forever. I had no idea that a baby could be born that little let alone someday be an active, strong and healthy toddler.

The medical staff presented all of the facts about prematurity and held nothing back when sharing many of the grim realities of what our little girl would have to battle through in the coming weeks, months and possibly years, if she even survived at all. Looking back at that time in our lives, it seems like a bad dream.

I clearly remember the moment that I chose hope over fear. Our daughter Hazel had been taken to a side room to be stabilized after birth and after about half an hour I was finally allowed to go in and see her.

There this tiny person was, wrapped up in blankets totally helpless. She looked nothing like any baby I'd ever seen before but that was alright. She was ours and she was perfect. I remember placing the tip of my index finger into the palm of her hand and marveling that when she grasped my finger tip, her hand didn't cover it all. In that moment I hoped for strength and guidance from God to help my wife and I be there for our daughter.

Talking to any parent that's done significant time in the NICU, one of the most difficult feelings to deal with is having little to no control over the situation. From a young age many of us are told, if we work hard, if we set goals we can control our destiny. Sadly that's not always the case. Sometimes there is nothing you can do but pray.

The NICU dumps you on your backside, quick. What I noticed very early on was the one and only thing my wife and I had control over at that moment in our lives was how we responded to our situation. We had the ability to get back up each time our world was rocked. Sometimes it was easy to hop up and keep moving forward. Others, it was all we could do to struggle back to our feet again and keep going. The choice was ours.

It would have been so easy to just shut down and passively accept whatever came my way. Nobody would have questioned it. There were two things that stopped me from doing that. My wife and our little girl. They mean more to me than anything in this world. I was going to be there for them no matter what.

Hope gives you the strength to watch your child struggle for life. It helps you to keep your stamina up. Hope helps you to reach out and console others who are going through rough times with their little ones while you yourself are struggling to deal with the magnitude of raising a micro preemie.  It gives you the strength to get up out of bed when all you want to do is lay there and imagine it isn't your child in the hospital. Hope gives you an ability to ask others for help because you know in order to take care of your loved ones, sometimes you must first make sure to take care of yourself.

After 107 days in the NICU our little miracle came home. Others we met weren't so lucky. To this day I've never been able to understand why. I've just vowed to make each day with our daughter count.

After 5 months on low flow oxygen at home, our daughter began to breath the way nature intended. It took many months of hard work, a little bit of luck and the support of some amazing people but she did it.

Now almost a year later, I watch our daughter run around the house with a huge smile on her face and I marvel at how far she has come. She is 17 months adjusted and loves to play with her toys, the dog, read books, 'dance' to music, give kisses laugh and rough house with her parents. From the moment she wakes up until the moment her head hits the pillow it's go, go, go.

Hope remains very much a part of our lives today although the focus has just changed a bit. I hope that our little girl grows up and is able to pursue her dreams to the fullest. I hope I am able to do my part in helping her learn about the importance of trying to make a difference in the world. I hope I have enough energy to keep up with that little girl I see before me.

Life is funny, because it is so unpredictable. It's cliche but you really never know what's just around the corner.

I offer a bit of advice to anyone who reads this post. You have the strength and the ability to make it through anything life throws your way. Take a moment each day to stop and think about one thing that is going well in your life. Some days this task is easier than others but no matter how desperate things feel there is always something to be grateful for, something to believe in and something to work towards. I try to live my life this way each day and it helps me to keep an even keel. Very little phases me.

Being the parent of a micro preemie is not always easy but it can be extremely rewarding. Early on, it certainly was different than what I expected parenthood to be. Different doesn't have to be bad, it's just different. It has pushed me to my limit as a man and as a result, I truly believe I have grown wise beyond my years.

My wife and I have been given a blessing. That little girl that gave us such a scare, has now become the light of both our lives. She was worth everything that we went through and more. We will continue to choose hope in our lives because really, there is no other choice.

Thursday, January 10, 2013

Moms Say Thanks: A NICU DAD

Holding Daddy's Hand
I was too caught up in my own pain and anxiety at the time of our son's premature birth at just over 30 weeks to truly appreciate what the experience must have been like for my husband. I know precisely how I felt feeling my water break and directing him to grab a few things while I waited lying on my left side for the doctor's office to call me back. While I was numb with fright when they couldn't keep his heart rate on the monitor, or I was told that they were going to have to move us to a hospital with a Level III NICU as our neighborhood hospital couldn't support a 30 week old baby. How would I have felt if I had to follow an ambulance carrying my wife and unborn son to a hospital in another state? He seemed so steady and calm to me at the time.

He missed out on things, too. His biggest excitement during my pregnancy was about cutting the cord especially when he found out that he was going to have a son. They generally don't let fathers cut the cord during an emergency c-section with a baby in respiratory distress. It wasn't until two months after we brought Drake home from the NICU that I found out the moment they called him over in the OR wasn't to take a look at his new baby boy, but to get him to talk to Drake to help him breathe and stabilize while they got ready to intubate.

I missed the first glimpses of our son in my exhaustion and nausea and fear. My husband captured those first moments of our 2lb, 14oz baby in the “ziploc bag”, fighting the tube down his throat, and surrounded by NICU staff. I remember wanting him to go with Drake, but I'm not sure if I passed out or told him to. I just know he went.

I can't imagine what it was like to take care of me, take care of our home, go to work, and come to the hospital to learn how to parent a baby we were often told not to touch every day. Through it all, he was able to maintain a much firmer belief that our new family was right where we needed to be. He had the faith that our son's early arrival and how well he fared saved us all from a much scarier possible outcome than if I had managed to carry him closer to term. Even though there were times when I wished he would “lose it” a bit with me, I'm so glad that my partner was there for me and helped me weather the storm.

Tuesday, January 8, 2013

Who's molding who?

 
The upbringing of our own children is something many of us contemplate years before we actually have children at all. There is something about taking a little human being, a blank slate of sorts, and molding them in a particular image of your choosing. Some parents aspire to create a “mini-me,” (See Austin Powers) or in other cases, a version of what they wish they were (See Toddlers and Tiaras). Others simply hope to raise successful, happy kids who can prosper as adults later on in life.
 
As a student of political theory in college, I will forever remember the story of British philosopher John Stuart Mill. He was the son of a philosopher, historian and economist - James Mill. John was given a tremendously demanding upbringing, and was purposely isolated from association with other kids. His father’s goal was to create a genius intellect, and in many cases he succeeded in this grand experiment.
 
At the age of three he was taught Greek. At the age of eight he began studying Latin, algebra, and was appointed schoolmaster to the younger children of the family. He composed poetry and enjoyed reading about natural sciences and popular novels. About the age of twelve, Mill studied scholastic logic, at the same time reading Aristotle's writings. He went on later in life to become a member of British parliament, and has been dubbed the the most influential English-speaking philosopher of the nineteenth century. Not bad – in fact, that’s a record that would make any parent proud.
 
I knew this was such an extreme example, but it gave me a slight impression that I have a lot of control in shaping my future child. But with three and a half years under my belt as an actual parent, I know how wrong that impression is, especially when you are dealing with a micro-preemie.
 
When our son, Jack, was born four months early, I wasn’t concerned if he could learn a second language by age three. I just wanted him to live. I’m not worried about him reading advanced novels by the age of eight. I just hope he can read one day. Now, as he approaches age four in May, I don’t care if he will ever recite poetry – I just want him to communicate with me. We can do many things to help him make improvements in mobility, eating and speaking, but we are not in control. Jack is not a mound of clay waiting for the hands of a skilled potter.
 
In some ways, our sanity as parents of a preemie has more to do with our own ability to be shaped by the twists and turns our preemies provide. They may not sit up at the same time other kids do. They may take a bit longer to walk across a room. Some may not string words together into sentences when you want them too. Many may never do any of these things. Others may have no difficulties at all. As parents, we just have to give them as much love, support and patience they need to be as happy as possible.
 
When it comes down to it, we learn that our children end up molding us just as much as (or more than) we mold them. This approach, I think, leads to happier parents and happier preemies.

Monday, January 7, 2013

The Challenges of Being a NICU Dad



Being a NICU Dad is no easy thing, and in some ways it may be even more challenging than it is to be a NICU Mom.

If you are like most dads, having your baby in the NICU will immediately lead you to feel that things are out of control.  Suddenly, you have multiple roles thrust upon you, some of which may be new.  Not only are you a dad, but you are also overseer and protector of the entire family.  With that comes concern first for your partner’s health and well-being, and then concern about the new baby and other children who might already be in the family.  How will you keep it all together, go to work, get enough updates on your baby’s condition from the healthcare team, and share information with your extended family members and friends without becoming completely stressed out?

You may also feel like your baby’s care is out of your control.  Some dads choose to see this as a positive, in that they “don’t have to worry” because the doctors and nurses know what they are doing and will take care of things. But other dads may feel the opposite, worrying even more about their baby, particularly if they feel they don’t have access to enough information about their baby.

Dads differ, too, in how much information they want.  You may desire a full report of all the numbers and stats as soon as you arrive in the NICU each day, or you may prefer to just hear an overview so as to not become more overwhelmed than you may already be.  Either way is fine.  Feel free to ask for reading material or directions to websites which explain the challenges your baby is facing, and to let the medical team know how much information is enough.

Dads are in the often unique position of being the first one to see their baby in the NICU; mom may be too sick to come into the NICU and may even be in another hospital for several days.  It therefore becomes your job to talk with the healthcare team and relay news to your partner, and support her emotionally until she finally gets to see the baby.  As baby’s NICU stay becomes longer, you may come to feel like you are supporting your partner, but no one is supporting you.  You may adhere to that time-honored tradition of “staying strong” for your wife, but in reality you still have to process the same kinds of feelings your wife does.  Research has shown that dads tend to have more delayed reactions to the stress of their baby’s NICU course than moms do.  Dr. Richard Shaw’s studies showed that by four months after baby’s birth, mother’s symptoms of trauma related to their baby’s NICU stay had lessened, but fathers’ symptoms had increased and even surpassed moms’ symptoms.  Be on the lookout for symptoms of post-traumatic stress disorder after your baby comes home (feeling irritable, panicky, disconnected, or having nightmares); be honest with yourself and seek help if you need it.

Probably the best way to deal with stressful feelings during your baby’s NICU stay is to schedule time to talk with your baby’s doctor.  Getting concrete information will enable you to feel like you can do more effective planning for your family.  However, be prepared for that inevitable sense of frustration if and when your baby’s doctor doesn’t have answers to all of your questions.  There can be a lot of uncertainty concerning babies’ futures, and unfortunately doctors do not have crystal balls.  You may have to learn to “go with the flow” a bit, like it or not.

Many dads feel that their best way to cope is to continue to go to work to provide for their family.  This is perfectly acceptable; you won’t be judged if you spend your time at work instead of in the NICU.  For some fathers, though, work presents a stress, because they feel the tug of wanting to be with their baby, especially if he is critically ill.  Also, spending more time at work may limit your access to your baby’s doctor.  If you do return to work full-time before your baby is discharged, a good suggestion would be for you and your partner to schedule regular conferences with the baby’s healthcare team.  This may require you to leave work early one day every several weeks, but it should be worth it in terms of the peace of mind you gain. 
Another critically important NICU experience is holding your baby—and even kangarooing!—to help you bond.  It’s natural to feel afraid to handle a small, fragile, perhaps sick baby, but your baby needs this physical and emotional time together and you do, too.  This will help you establish a personal relationship with your baby and get you started on your new life together.  The NICU staff will be right at your side to ensure your success with holding your little one. 

Other ways to cope with your stress are to take time to leave the NICU, to get some exercise, to be involved in activities with any religious community you may be a part of; and don’t forget “date night” once in a while with your wife.  Being a NICU Dad is every bit as important as being a NICU Mom.  Together, you can get through your baby’s NICU stay and work as a team to support your baby’s homecoming.

By Sue Hall, M.D.
Author, For the Love of Babies
On facebook at For the Love of Babies