Friday, August 31, 2012

Featured Father- Derick Gibson



My wife and I have had a tremendous history starting with two second trimester loses in one year followed by our daughter who was born at 31 weeks (Currently she is four years old). It started out that my wife has an incompetent cervix. When we were pregnant with my daughter, my wife had a surgery done at 10 weeks called tac = trans abdominal cerclage which in lamens terms they put a permanent band on top of the cervix. That held the entire pregnancy however she went into labor at 31 weeks. After the hospital sent my wife home leaving her in labor for over 24 hours our daughter was born. Our daughter was born with Erbs Palsey witch is a biracial plexus injury caused by nerve damage in the upper arm. That was caused by the doctors doing an emergency delivery when our daughter was not in any distress.
Our daughter spent three weeks in the NICU. We were able to hold her when she was five days old. She had some respiratory problems and was on c-pap. After she came home and got older we noticed that she was not progressing with of a lot of the milestones, and after numerous trips to specialists our pediatrician our daughter had been diagnosed with global developmental delay, auditory processing, and is on the low end of the autism spectrum (PDD-NOS = preventalmental developmental disorder not otherwise specified). All in all it has been a very long journey thus far but it doesn't phase us with all the problems with her when we look at her and she is the happiest kid on earth. 

We also have a seven month old little girl now born at 35 weeks. Happy to report that so far she has no problems.

Monday, August 27, 2012

Silver Linings- Daddy Daycare

Just you and me, good buddy

A little over a month ago, we decided that transferring daycare's would be in our best interest for a variety of reasons, most notably we wanted to have our son at a daycare that was willing to provide transportation to preschool. While Jayden is still at least a year away from preschool, we didn't want to scramble last minute to find something. When an opportunity presented itself, we moved swiftly.

Anxious about a new journey for Jayden, we were excited that things seemed to be transitioning smoothly over the course of the first couple of weeks.

Then things slowly starting turning for the worse.

We could tell by the daycare provider she was getting frustrated with his inability to sleep. We could also tell she struggled with the idea that well past two years old, his inability to communicate was making him irritable and she was struggling with it. While we were eager to get him over the hump and into to a new routine, we knew it might take some time. A few Fridays ago she dropped a bomb on us.

Daycare was closing. No definitive date was set but we would need to find other arrangements. The part that stings the most? We have good reason to believe the daycare is not closing, rather she decided that Jayden was too much work. We were hurt, angry, and faced with tough decisions.

Then an idea bloomed.

Why not keep Jayden home? With him home we could make sure he was getting properly cared for, that we could focus on spending time working on his speech, and be able to save a significant amount of money a month. Working in the restaurant business,  I am fortunate to work for people who were more than willing to rearrange my schedule with very short notice.

As of this morning, Daddy Daycare is officially open. Being a Stay At Home Dad and working part time will be an adjustment for both Jayden and I. But I am comforted by knowing he won't go wanting for attention or love.

Sometimes it's through the toughest circumstances we find silver linings.

Friday, August 24, 2012

Juggling Employment and a Preemie


Every family has a different dynamic – in some, both parents work outside of the home. In others, it may just be one of the parents. In my little family, I have the 8-5 job outside of the home while my wife, Jessi, works as Jack’s caretaker. Whatever your particular family situation is, being a parent with a job outside of the home presents some unique challenges.
If you’re not self-employed (i.e. your own boss) or the head cheese, you are accountable to someone higher up the ladder than you. Maybe it’s a supervisor, a manager, or the big dog at the top. You may not have flexibility in your schedule. The work may not be getting done if you’re not there. There is this ever-present pressure looming over you as you deal with a significant family situation.  
You probably first encountered this when you found yourself unexpectedly in the hospital as you were told you were about to become a parent much sooner than you anticipated. Depending on how early your bundle arrived, you were then faced with the prospect of a long NICU stay, perhaps even at a hospital far from your home. The distance alone can make it impossible for you to maintain any normal work schedule and be there for your spouse and newborn.
In our case, my wife, Jessi, was flown to a hospital 120 miles from our home so our 23-weeker preemie son, Jack, could be born in a NICU that could handle such an early arrival. When faced with the prospect of a four to five month hospital stay (if Jack made it) far from our primary residence, I knew I had to modify my work schedule to be there for my family. Luckily, I had a very supportive, concerned employer who gave me a lot of flexibility throughout the NICU stay to perform work out of the office and take large chunks of time off, especially in the beginning.
But for us, the NICU was just the start of a completely altered life centered on our medically-fragile son. After four months in the hospital, we were able to take him to our home 120 miles away. That was the beginning of the doctor’s visits, therapy appointments, and test after test after test. Within the first year, he had two more surgeries requiring hospitalization. To this day, Jack often has appointments with specialists where both Jessi and I want to be present. Usually these required trips at least two hours both ways as we tried to find the best doctors in our rural state.
It’s hard to give specific advice to any parent who works outside of the home because every job is different. Coming from someone who has done everything from fast food to retail to government to non-profit to business, I know that I can’t speak to every situation. You may have a great boss, you may have a jerk for a boss. You may be able to do some of your job duties from anywhere, or you may have to be in a specific location. Having said that, here are a few suggestions to consider as a parent to a new preemie:
1.       Communicate with your employer:  As long as he or she will listen, there is no more important thing you can do for your work situation than to explain your family’s circumstances to your boss. You may need to go into great detail about how serious the medical problems may be. I knew next to nothing about preemies before Jack was born, and it’s safe to assume that most people won’t automatically know everything that you are going through. Throughout Jack’s NICU stay, I included my boss and co-workers on the latest email update so they knew the good, the bad, and the ugly. Bottom line – keep the boss in the loop.
 
2.       Ask for leeway:  Don’t assume your employer will automatically and instinctively think to give you a little flexibility with your schedule or job duties. Ask them to cut you some slack, at least temporarily.
 
3.       Ask about certain work policies:  Depending on the size of your employer’s business or organization, there may be legally mandated policies regarding family medical leave and time off. In addition, there may be internal, corporate or employee handbook policies regarding your situation. As time goes on, and your baby is out of the NICU, you may want or need to take additional time off for medical emergencies or doctor’s visits. Find out what it will take to make that happen. Some employers may let you use your own sick days for such occasions while others may make you go without pay or use your vacation days.  
 
4.       Don’t let your quality go down:  If at all possible, don’t let your work product or service go down the drain. You may be spending more time away from work, but when you are at work, make it count. Your mind is probably elsewhere, but you still have a job to do. That job is probably helping to pay your bills and maybe even paying the health insurance bill that has become increasingly important for your family.

Thursday, August 23, 2012

Milestones


One of the beautiful things about my profession is that it affords me an opportunity to be a stay at home dad for the better part of two months each year.

This summer has been one of tremendous growth for our former 24 weeker, Hazel (now 12 months adjusted). Gone is that tiny, helpless baby, replaced by an active, vibrant toddler that crawls all over the house getting into everything.

Hazel loves to play with her toys and one of her favorite games is to endlessly put her stacking cups together and take them apart. The other toy of choice right now is her ball popper. She recently figured out how to turn it on her own and now plays with it any chance she gets. She is so proud of herself.

Last week, Hazel started using a Fisher Price walker and in no time was zooming all over the house, this week she was even braver and has started walking independently.

Hazel had also recently picked up words. There isn't a sweeter sound in the world than when she says, 'daddy' and I know she is actually saying it to get my attention. She can also say hi, mama, nana (banana) and 'yeah' to indicate yes.

I feel so fortunate to have had this opportunity to witness so many of those cool moments in her life. I often reflect on the last year and am just amazed with how far she's come.  As a preemie parent I think there is a tendency to lose perspective of the bigger picture while you are busy dealing with the ups and downs of every day life. It is important every once in  while to take a step back and look at the big picture.

For so long we were concerned about the medical needs of our daughter that we felt more like medical staff than we did parents. Then as her health improved and she became stronger, we both started to really feel the emotions that were bottled up while Hazel was in the NICU. It has taken time but we are really starting to feel like just regular parents now, oh what a glorious feeling.

Over the last few months I have done a lot of thinking about our daughter's journey. There was a time that I really focused on her scars. There is the clearly apparent scar from her PDA ligation surgery and there are the numerous smaller ones on her hands, feet and legs from blood gases, IV's and PICC lines.

Beyond those apparent physical reminders of her NICU stay, I guess I always wondered if Hazel might have any emotional scars after everything she has been through. True, she was not able to comprehend what was going on while she was in the hospital but I guess I always wondered if her personality may have been in some way influenced or altered.

My wife and I have worked so hard to stop worrying about what the  next problem will be and are now more than ever just living in the moment. We were conditioned to always wonder when the other shoe would drop. For so long I found it truly difficult to feel at ease. Like any parent I guess I just wanted to do anything I could to help our daughter stay healthy and not experience anymore pain.

I am happy to report that we've past many parenting milestones this summer. We have taken our little girl on a variety of trips and adventures and she has had so much fun! She's been on a long road trip to visit her grandpa, went to the beach, ate sand, swam in the water, went to the zoo, received a few loving kisses from the neighbors dog and played lots with her cousins, you know, normal kid stuff. Our guard is slowly but surely coming down.

Last night we took our daughter to an amusement park located in the mall near our place because we were pretty sure she'd enjoy it. She went on her first ever rides, the kiddy train and some small merry-go-round with a variety of little cars and trucks on it.

Hazel was instantly hooked. Her eyes were as big as saucers as the train slowly toured the park. Hazel was waving at people, smiling, jumping up and down and squealing with delight. My wife and I were so happy but what struck us as interesting is that little girl had so many people smiling, waving and laughing all over the park as she went riding by. Hazel was in her element.
There was a powerful ah-ha moment for us  in that little amusement park last night. Hazel is fine. In fact, she's more than fine, she's great. That little girl, in that moment was living her life to the fullest. There was no pain or sadness in her mind or spirit, only love, excitement and happiness.
Looking at the journey our daughter has been on over the last year I know we've been blessed in so many ways. While dealing with very real medical needs, concerns and scars, it is also important to try and find those ah-ha moments with our children.  Whether it's the first time our children hold their heads up, taste food, come off oxygen, roll over or smile, their milestones are just a little sweeter.

Whatever comes next, I know we will be fine. It feels so utterly amazing to say those words, 'she'll be fine'. Hazel has taught us so many things over the last year and the lesson we learned from her last night was an important one. If she can go through so much and still be happy and so full of life, then maybe it's ok for us to be that way too.

Tuesday, August 21, 2012

Slow Down, Good Buddy

Evidence of how far we've come.

This may sound like the ultimate hypocrisy from the parent of a preemie, but sometimes I feel like Jayden is growing up too fast.

Yes, I said too fast.

We have had our fair share of doubts, fear, and uncertainty as parents of a one time 3lb. 6 oz. baby. I spent quite a few dark moments in the NICU questioning whether I had the chops to properly care for a medically frail child.

So many nights I thought:
"I hope he gets stronger soon"
"I hope he starts ______ tomorrow"

It's so easy to get caught up in all things relating to care for your preemie, that you forget to enjoy just being a parent. Every day your child is getting just a bit bigger, just a bit stronger.

Here I stand, staring at a tree, not seeing the forest.

We've taken thousands of pictures of Jayden. I spend time at least once a week going through those pictures, reliving memories and moments. It reminds me of two very important things:

1. I'm reminded of how far we've come

2. More importantly, I'm reminded that those moments are merely snapshots of memories, that those stages of his life are gone.

Of course I enjoy his independence, but I'm not in any hurry for him to grow up.

Slow down, good buddy. Daddy wants to enjoy the moment.

Thursday, August 16, 2012

The Cobra in the Box

By Mark Brislin

After Owen was born and while he was in the NICU, I would wonder what happened to the Cobra. Did he return to his natural habitat, did he disintegrate into the air, or was he waiting in the corner to strike again? Did he go into someone else’s box, or was the cobra actually a manifestation of something bigger? Was he there to protect, or to attack, or to remind us that no matter how happy you got, the cobra was always there?
One night shortly after we learned of the CDH diagnosis, Maria and I were sitting in bed. I was frantically reading medical journals and on CDH support sites searching for information. Why did this happen? What did I do to cause this? Why do 50% of the kids with CDH die? What is the survival rate of a child with a lung to head ratio of 1 at this point in the pregnancy? Did that genetic counselor really tell us it would be best to abort this pregnancy, the one that we have waited 3 years for? And always the question, why?
Maria looked over at me after watching another show on Animal Planet about snakes.  She had her hand on her 20 week pregnant stomach and a look on her face that I can’t really describe. She talked about the CDH diagnosis and how it was like walking around with a cobra in a box.

Think about that for a second. A cobra is one of the deadliest snakes in the world. It inflicts venom and kills thousands of people a year.  But it doesn’t attack unprovoked. And here was my pregnant wife, carrying a child with an unknown life expectancy determining that it was analogous to walking around with a cobra in a box. Well, let’s just say you can’t google that.
Our CDH diagnosis came at week 20, and Owen was born around week 40. Check my math but that’s 20 weeks, or 3360 hours, or 201,600 minutes to think about whether or not your child will be born alive.
As the pregnancy moved forward, we had to think about normal things like- do we have a shower? In our case, we did have a shower, two actually. But when we walked around the baby store clicking items that we never knew if we would use, a day that should have been one of the happiest in our lives was marred with a cloud. Because sitting in our shopping cart, next to the little Red Sox outfit that I had to have was the Cobra in the box.
When we painted the nursery, and filled it with furniture, we looked inside the crib and instead of imagining a child sleeping peacefully, there sat the box.
When I looked into the back yard, instead of dreaming of teaching my son to play baseball, I saw that damn box mocking me and telling me that you cannot be happy, you cannot think of the future.

In retrospect, things worked out for us. Our son is almost 12 months old, and despite some slight internal issues he is thriving. But there are others out there that aren’t so lucky, the snake came out of the box and inflicted its venom and the parents have to live with the pain of that bite for the rest of their lives.
My point here as in all of my posts is to help people understand that the impact of CDH,  or any NICU stay, stretches far beyond the medical impact. The diagnosis is scary; the experience - despite our positive outcome - changed our lives forever.
It changed the way we think, the way we live and the way we deal with other situations.  Just because our child was improving, didn't mean it was over. You're always thankful that your situation turned out well, but the experience haunts you and there are some days when despite our best efforts  we still hear a tiny hiss.

Thursday, August 9, 2012

NICU Staff

By Rob Berry

It is the beginning of August and I am half way through my summer vacation. Time to count my blessings.

So far my family and I have had a very successful road trip to visit Hazel's grandpa, we've successfully finished the landscaping of our back yard, my wife and I have had many opportunities to do 'normal' family things with our ex-24 weeker Hazel and I've had the great pleasure of being a stay at home dad for the last four weeks. Life really couldn't get much better right now.

One of the things I like most about this time of year is that life really slows down. The most consistent event on my calendar this time of year is afternoon nap time with our little girl.

This afternoon I was having difficulty falling asleep and my mind started to wander as it often does. I started to think about how dramatically my life has changed in the last year since we brought Hazel home last July. It has been a really busy year and at times it has been super intense but I wouldn't trade a second of it because being a dad is simply amazing.

My thoughts then shifted to Hazel's time spent in the NICU where she had so many amazing professionals working tirelessly to make sure she got strong. I can't help but feel fortunate for everything these people did for us. They gave us our daughter plain and simple. I don't know of any way we could even begin to appropriately thank these people for what they did.

I will admit, having your little one in a level three nursery for months is not fun. No parent should have to experience fear and uncertainty around their child's birth and yet sadly, so many people do.

One of the many things that got us through our time in the NICU were the relationships formed with so many of the staff members. What amazes me now is how so many of them took the time to talk with my wife and I even when we knew they were super busy.

These conversations were often specific to our daughter and her medical needs, sometimes they were merely conversations to help ease the stress of situations we were facing and other times we would simply talk about everyday things. Whatever the reason, these conversations brought a sense of normalcy to a very abnormal situation.

I have read about many horror stories people have experienced with NICU staff and I can't help but feel grateful for our experience.

One of my biggest tips for parents in the NICU is to remind them that staff is there because they love those little boys and girls in the isolettes. I know it is easy to sometimes lose sight of that when it's your little one that is the patient but I can't help but believe that it's true. I can't imagine anyone lasting in that profession without a true desire to help these little miracles grow.

Another tip for the NICU is to foster and develop relationships with doctors, nurses, rt's and other support staff. My wife and I learned so much about prematurity and how best to help our daughter thrive and be successful by simply talking with staff and by being as friendly as possible. These lessons were invaluable when we finally brought Hazel home. We were prepared as best as we could be and that brought so much comfort.

Were there times we had concerns about our daughter's care? Certainly. Most of the time my level of concern came from not fully understanding the situation at hand. A few good conversations and generally my level of anxiety went way down.

The few times conversations didn't relieve my anxiety and there were some real concerns, staff knew us as calm and rational people and situations were dealt with swiftly and compassionately.

Leaving the NICU last July was one of the happiest days I've ever experienced ranking up there with the day I married my wife and the day she told me we had a little one on the way.

It was also a sad day in some ways as we were leaving some amazing people behind. Funny how an extended stay in the NICU bonds people from all different walks of life. Many of the people on that ward felt like members of our extended family when we left.

My wife and I took Hazel in to visit the NICU staff a few months ago right around the time of her first birthday. It was such a great moment and was so reassuring to us as parents. The Charge Nurse that so carefully watched over Hazel's progress for months was there. She knew our daughter like nobody else and had a real affinity for her. The Charge Nurse was so happy to see our daughter was doing so well. It was amazing that she remembered so much about our daughter after so much time had passed. It was a true testament to her level of professionalism.

The nurse that first had Hazel when she came up from Labor and Delivery then appeared. She recalled so much about her first few hours and days of life It was incredible. It reminded this dad that that little girl really had come such a long way.

One of our favorite nurses then appeared and took Hazel on a trip all around the ward to visit staff members who were working that day. Of course Hazel was in that stranger danger phase and started to scream like a banshee. Everyone took it in stride and marveled at how strong her lungs had really become.

This was a great moment for us as parents but I believe it was equally amazing for the staff. It became clear in an instant that our children have a huge impact on the lives of these amazing people. They are there with us through the good times and the bad and no doubt go through a range of emotions due to the nature of their work. I feel so happy that with our little visit we could somehow give a something back.

I am looking forward to the final few weeks of vacation. As I enjoy these days I will continue to count my blessings and remember these amazing people who gave us our beautiful little girl.

Thank you to all of the professionals who make a living helping our children grow and reach their full potential. I am sure at times your job is thankless but please remember, you really do make a difference in the lives of so many people.

Wednesday, August 8, 2012

Reclaiming Birthdays

(Photo Credit: Lisa Kunkel Photography)

The first birthday of a preemie who has been through the ringer is tough. No doubt, there is more than enough to celebrate due to the fact that your baby made it through the NICU and survived a tumultuous first year.  Still, I know many preemie parents who struggle with that first birthday. Those difficulties can continue into future birthdays. Those feelings can also creep up around the original due date – the day you thought your child would be born.
Our son, Jack, was born four months early. He was supposed to be born in September when he would share his birthday in the same month as mine and my wife’s. Instead, he was born in May.
On Jack’s first birthday, we were trying to be positive. We wanted to celebrate. We understood how far he had come since his one pound beginnings. But on May 15, we mostly struggled with depression – the pain of what was and what could have been was still too raw. All of the memories and wounds were still so fresh in our minds to really allow us to relax and have fun. We bought a celebratory cupcake and isolated our little family from the rest of the world.
Later in the summer, we chose to have a true celebration in between his actual birthday and due dates. I’m not sure why this was significant, but scheduling the party away from either of those two days allowed us to unwind, rejoice for the miracle of Jack’s first year, and be more positive. It helped that we coupled it with Jack’s dedication at our church – a outward sign of our thanks to God for his life and our hope for his future.
With each passing birthday, and as the NICU became a slightly less raw memory, we have shifted our emotions more towards celebration rather than depression. Maybe it’s because the NICU seems more like a dark nightmare rather than a real part of our life. Maybe it’s because we have the benefit of hindsight to know that Jack has overcome so much and lived to continue the fight. Perhaps it’s because we know how happy Jack is rather than having to wonder if he would live a life of pain, frustration and disappointment.
It’s okay to experience a little sadness around those first few birthdays. I imagine it happens to most preemie parents. But know that birthdays can be reclaimed for what they are – a celebration of life. It may not happen right away, but the time will come when you forget the due date and mark their special day with a nice party, friends, and make new memories to remember. Your child has earned it.

Tuesday, August 7, 2012

Fear of the Unknown

By Tom Brinegar

Fear is natural but it's taken to a new level when it is from the unknown. Like when Teagan was born, not knowing where this road may lead but willing to take it for fearing what will happen if you don't. On June 9th 2010 I took a such road when she was born knowing Kelly and I have and will do what ever it will take to show her what it feels like to know love like no other.

When Teagan was in the NICU Kelly didn't see her for the first 24 hours due to the c-section and the medications she was on after it. So I would go to the NICU for awhile and go back to Kelly's room to give a update on how she was doing every hour or two even though I have been up 24 hours because I just got off work at 8am that morning. It was in one of those hourly updates when I was sitting by Teagan's side that one of the nurses ask if I wanted to hold her and I said that her mom is going to be the first one out of the two of us that is going to hold her because as a parent of a child from a previous marriage I got to hold my first child for the first time.

That may sound weird but if Teagan was going to be held by one of us for the first time it was going to be her mother, and when Kelly asked if I have held her yet and I said no, I went on to explain why. It was at that moment that I saw the look in her eyes and knew she got it and I also knew I made the right choice. Kelly and I have been down many roads of unknown filled with fears even leading up to our NICU stay but we have faith and believe 100% that every thing happens for one reason or another. So I leave you with this have faith and enjoy the roads of the unknown even though you may have fear you will never be alone.

Monday, August 6, 2012

Dear Jayden... Part 1: Birth

By Joel Brens
 
Dear Jayden...

It's taken me about a day or two to digest what has just transpired. To fully understand the how beauty and chaos can co-exist, we should start at the beginning. Your mom and I knew we were having you early. For one reason or another, mom's body was having a tough time responding to the pregnancy. Her blood pressure was high enough to raise concerns from doctors. At 30 weeks we were told that we would need to keep a close eye on your progress. A couple of weeks passed with no major changes. But when we got to the third week the high risk doctor saw that your blood flow in your umbilical cord was starting and stopping. That evening, Monday, May 10th we decided a couple of rounds of steroid shots and close monitoring would help set up a Wednesday delivery. While we were scared, we had a plan in place.  Having to work in the morning I went home, slept, and got ready for work the next day. Tuesday morning I remember as I walked into work how anxious I was to get through the day so I could get settled into the hospital.

Then the phone rang...

"Hello?"

"Honey Jayden's heart beat dropped to 60 bpm and they have to take the baby. Please get here as soon as you can. I'm so scared"

"Ok baby I'll get there as soon as I can, I love you so much."

"Ok, I love you too. Please hurry."

I was stuck at work for 45 minutes. It was the longest 45 minutes of my life. The moment I left I texted as many friends and family as I could. I prayed. A lot. I broke the law driving like a maniac to the hospital. I sprinted from the car to the room, tears running down my face. (Daddy isn't exactly in the best shape, but you'd be proud how fast it was.) As I got to the room, I realized it was empty. Disoriented, frightened, and looking for answers I looked for someone to talk to. Luckily a nice nurse walking out of surgery found me and quickly informed me that I had "a happy healthy baby boy" and that mother and child were doing well. I swear the weight of the world was lifted from my shoulders. At 8:11am on Tuesday, May 11th you were born. 3lbs. 6oz. and 17.5 inches, you had some growing to do, but you were in stable condition, and that's all that mattered to me.

When I got the first glimpse of you about 15 minutes later, I cried the most wonderful, bittersweet tears I've ever felt. You were the most beautiful thing I have ever laid eyes on. While i was filled with joy, I was also felt great sadness. You see Jayden, the first person I thought about was my dad, or Pa, as he was affectionately known by his grand-kids. He was such an amazing human being, a genuine person who really made a great impact on so many people, especially me. When we first found out we were expecting, Pa was losing his battle with cancer. He was brought home to heaven a few months before we had you. As one door was closing as another was opening. I wish I could ask him for advice, seek his comfort, and share in the joy that you bring him. But I feel his presence within me and within you. It brings me much comfort. I look forward to the day you'll understand the man he was and how my parenting is a reflection of the love, compassion, and joy he instilled in me.

While I don't know what the next few days/weeks/months/years holds for us, I am thrilled to be your daddy. No matter what happens in life, no matter what path you chose, I just want you to take it on with fire and passion.  I love you so very much.

Daddy