Thursday, May 31, 2012

EI - Developmental Therapy - Building a relationship

Building for a better future
By Joel Brens

Since we have had the chance to speak with our Early Intervention Team about how we move forward, we have been eager to begin the process. Sometimes it can take time to find a therapist that is available and can work around your schedule.

Wednesday we finally got the chance to meet Dorothy who will be doing Jayden's Developmental Therapy sessions. Before we had a chance to see her work with Jayden I was nervous. Would Jayden bond with her? How easy will it be to work with her?

Within the first couple of minutes Dorothy laid to rest any concerns I had. She was warm and friendly with Jayden, and we established good dialogue. Jayden responded well to her. She explained that the first session was a chance to establish a baseline we can work off of moving forward. She explained the importance of building a relationship with Jayden. It's funny because the relationship my wife and I have with the EI therapists is just as important to us.

The biggest priority for Dorothy was establishing eye contact and trying to get Jayden to respond to what she was doing. The two interacted while playing with a variety of toys. Within a few minutes of starting this process Jayden  began to show signs of independence, trying to go about his business the way HE wanted to. But Dorothy did a great job of keeping Jayden on task. Taking "turns" and making "choices" about how to proceed through the process of playing with different toys.

I was happy to hear Dorothy talk about all the good things she saw from Jayden, that he had traits that would likely help make therapy sessions progress steadily. We have a long road ahead of us, but we certainly got off to a great start!

Tuesday, May 29, 2012

Fear

Jon and his son, Jack
By Jon Bennion

The first and foremost reaction when I unexpectedly found myself looking at my 23-week micro-preemie son, Jack, was absolute fear. I had never experienced such a serious medical emergency that had life-and-death consequences to the people closest to me. My wife’s life had been in danger due to preeclampsia and HELLP syndrome, necessitating the early delivery. Following the C-section, and after a few days of recovery, she was thankfully out of the woods.

Jack’s life, however, was still very much in danger, and the statistics were not in his favor. My first glances at Jack’s appearance initially discouraged me from having much faith. This was uncharted territory and it shook me to my very core. A dark and uncertain cloud now hung over the bright and shiny dreams we had for our young budding family. Thoughts of having to plan a funeral for the baby I never really knew haunted my mind in those early days.

Even if Jack miraculously survived the early birth, the range of opinions we got about Jack’s future health were grim. Due to grade four bilateral brain bleeds, we were told he could be deaf, blind, and unable to speak or walk. If things went well, we still could expect multiple surgeries, infections, and a four-month minimum NICU stay.

Fear is unquestionably the dominant negative feeling within the NICU. It is not the single emotion felt by parents who have children within, but I have never met a mother or father who didn’t struggle with the paralyzing fear that comes with having a fragile preemie unexpectedly. There is no easy cure, and unfortunately some of those fears may become realities for some parents.

Perhaps most fearful for me as a new father – there was absolutely nothing I could do about it.

I wasn’t used to being in total lack of control. I was told each preemie was unique, which meant Jack could not really be compared to any other kid in the NICU. I had no way to know if one minute he could appear to be doing well, only to find out he might slip away the next. As an inborn problem solver, it was killing me to know that the best I could do was hope and pray for the best.

In time, I learned to turn this fear over God – surrendering my anxieties and distress to Him. Trusting in Him became a release in some of the darkest times. It wasn’t easy. It didn’t always rid me of fear completely. But it did allow me to have moments where I could shift my feelings to something more positive as I thought up new dreams involving the new son I had that was clearly fighting hard to make it out of the NICU.

Next post about common feelings in the NICU: anger.

Sunday, May 27, 2012

New Years Grief - A Forgettable Way To Ring In The New Year

Sorry, Bud, but pediatrics doesn't have a ball drop
By Joel Brens

Since we have been out of the hospital we have been fortunate that Jayden has maintained relatively good health. He has had the sniffles and a cough probably a half dozen times or so. We were always happy to see him rebound relatively quickly.

This past winter was bizarre on many accounts. I am no fan of frigid cold days, and I lose interest in snow around December 27th. In a lot of ways this winter was ideal for me from a weather standpoint. Unfortunately the mild weather allowed for germs to linger. My wife got the 24 hour bug. I got the 24 hour bug, and a few days later Jayden's sniffles came back. We told ourselves that a humidifier, plenty of liquids and rest should do the trick. After a week of not seeing significant improvement we knew we might be dealing something more serious.

The next day we took Jayden to see the doctor. Much to our dismay, they heard buildup in his lungs. We were asked to go have an X-Ray done to confirm what we were concerned about, pneumonia. We were given a nebulizer and asked to give him treatments 4 times a day.

Over the course of the week of Christmas his condition was STILL not improving. We went in for a third doctors appointment on New Years Eve we discovered his blood oxygen level had dropped to 92%. That was low enough to warrant a trip to the ER. Lovely. We spent approximately 5 hours sitting in a room having my sons blood drawn, taking temp and blood oxygen levels. We were informed he would be held overnight. While we were not surprised, I hadn't considered watching Dick Clark ringing in the New Year from a hospital bed. Turns out our little trooper was dealing with a viral infection, so two weeks of antibiotics really didn't do anything. Grrr!

It had been a long couple of weeks. Sleepless nights being worried sick about about my son. Hoping every morning we would start to see progress only to land back in the hospital for overnight observation. My heart ached for Jayden. Trying to level with an 19 month old is difficult. He didn't understand why we were there. Internally, being back in the hospital drummed up old feelings about the NICU. I had to get that out of my head quickly because I needed to focus on comforting my son as opposed to being distracted by my own concerns. We got to our room and I was unnerved with the site of the "crib". For obvious liability reasons the hospital must ensure safety of a child. Large movable metal bars on either side made it look like a cage. I thought to myself "Chances he'll sleep in the crib tonight-less than 0." The thought was equal parts upsetting and funny, because what could I do? Every two hours someone would be in to check blood pressure, his blood/oxygen, listen to his lungs and administer nebulizer treatments. He was so upset. I wish I could get him to understand that the strange people who are coming in here to see you really want you to feel better. Every time he took the Nebulizer we tried to get him to lay down in the crib. He freaked out each time, tossing his body all around. We gave up on that after the second time. Luckily we were able to get him to sleep on our chests for about three to four hours. Whenever he wanted up there was a playroom not 15 feet from the room we were in. By the time the morning came around we were thrilled to find out his prognosis had improved enough to send him home. Within three days his health was back to normal. But a stay in the hospital, on NYE of all days, is something I won't soon forget.

Saturday, May 26, 2012

A Chance Meeting - Why Support Is So Important

By Joel Brens

About two weeks into our sons stay in the NICU, our hospital offered a "Pizza Huddle" for NICU parents to meet a NICU parent graduate, their child and talk about the experience, as well as learn infant CPR. We signed up and went to it with curiosity and optimism. At that point Jayden was making progress but still had a ways to go. Personally I needed a shot in the arm, and I was feeling sorry for myself.

We got to the meeting and waiting at the table was Aimee (co-founder of Life after NICU) and her son Connor. Within minutes of having dialogue with Aimee I started to feel better about everything. Seeing Connor thriving despite dealing with a plethora of issues during his four month stay in NICU really helped calm my nerves. The journey of a preemie lasts much longer than just a stay in NICU. Aimee said things like "You're going to be fine, your son will be fine" "Sometimes it takes a while, but it DOES get better" Her empathy and comforting words struck a chord with us. I remember speaking with my wife later that evening about how nice it was to meet Aimee and Connor, and how it would be nice to do something like that for other parents when we were out of the NICU.

Four months later, at a NICU reunion party, we ran into Connor, Aimee, and her husband Brian. We hit it off famously with them, exchanged information and became fast friends. We got involved with the NICU Parents Advisory Committee and met and lent support and advice to new NICU parents in a "Pizza Huddle" through our hospital. We are in the process of trying to get a volunteer program started at the hospital. Anything to give back.

After our most recent meeting with hospital staff, I proposed to Aimee starting a page on Facebook called Papas of Preemies to lend a dads voice. Life after NICU is doing amazing things, but the group is almost exclusively moms. Dads need to talk about their experiences too. The moment I suggested the idea she was on board and she has been so essential in helping me network with others.

Sharing my story and talking with others about their stories has been most therapeutic for me. My wish is every NICU parent can find some type of support with others. It's easy to feel alone, but you are not. There are so many great community support groups out there, and they have made such a difference for my wife and I.

Friday, May 25, 2012

What Makes Us Strong

Rob and his daughter, Hazel
By Rob Berry

I once read that a parent with a child in the NICU stands a high chance of suffering Post Traumatic Stress Disorder at a level comparable to a soldier who has served in active combat.

I am not qualified to make that comparison as I've never served my country but I do know that being the father of a micro preemie is likely the most intense experience I will ever endure while I am on this Earth.

Our daughter Hazel came suddenly at 24 weeks gestation. She weighed in at a whopping 1 lb 11 oz and was 12.5 inches long. Her arrival was the most exciting event in my life and yet it was also the most terrifying.

Everything about our pregnancy was perfect up until Hazel's early arrival. I remember naively thinking that once my wife approached the end of the second trimester that we were home free. Looking back now it is quite obvious that I didn't know a thing.

Nothing prepares a person for life as the parent of a micro preemie. One of the most difficult mental hurdles I had to cross was knowing that nothing we did caused our daughter to come early, nothing.

Sepsis, PDA ligation, ROP, multiple severe respiratory episodes, seemingly endless ventilation, fear, uncertainty, and a few close calls all greeted us as first time parents.

What amazes me now is how we managed to work our way through our daughter's NICU stay. We took things day by day, hour by hour and sometimes minute by minute. It is incredible how much a parent can endure with a bit of luck, faith and timely support. Such is life in and after the NICU.

Here are a few people/things that helped me cope with our time in the NICU:
First, my faith in something bigger than ourselves. My wife and I are not overly religious people but we believe God was watching over our little one as she struggled to grow and develop. I have had many conversations with Him over the last year and I definitely have a deeper connection.
Second, the staff at the Royal Alexandra Hospital NICU in Edmonton. Whether it was their exceptional level of expertise, their willingness to teach my wife and I anything and everything we wanted to know about prematurity or their ability to answer the same question from me ten million times, they were world class. These people are angels and we owe our daughter's life to their hard work.
Third, my wife's parents. They are two of the most amazing people you would ever care to meet. They were so strong and so supportive of us during our NICU stay. They remained solid for us while facing their own fears and concerns for their first and only grandchild. Never once did they complain or show fear and anxiety around us. They gave us both so much and asked nothing in return. They are the best grandparents a kid could ever ask for.
Most importantly, there is my wife. Where do I start? Let's just say she is my everything. We have leaned on each other hard during the last year. The two of us have faced many things that most newly wed couples could only imagine and yet here we are, still going strong. Hazel and I are the two luckiest people on the planet because we have her.
Time in the NICU is intense in so many ways. I look forward to diving deeper into my experience as an NICU dad in the weeks to come. I would also love to hear what helped other people survive their time in the NICU.

Thursday, May 24, 2012

A Preemie Turns Two!

Looking good, Buddy!
By Joel Brens

It's hard to fathom that two years ago today I got the call that we were about to be parents. That dreary May morning will forever be etched in my memory. The phone call it was time as I got to work. Waiting for someone to cover my shift. Texting as many people as I could on the way to the hospital “It’s Baby Time”. Praying that Gena and Jayden were going to be okay. Finding out they were doing fine. The entire day is a series of clear cut and blurry moments. I had no idea what the future held. But the only thing that mattered was Jayden was in stable condition, and he was in the hands of great doctors and nurses.

Being the parent of a preemie doesn’t end after you leave the NICU. Every day I prayed that he would grow, gain weight and show signs of progress. However big or small the milestone was, every new discovery was a gift from God. He has been such a trooper throughout his first two years. Jayden’s smile, his laugh, his personality all bring me such joy. Sometimes it’s a surreal feeling watching him play or having him cuddle up with me and think he is mine. With the Grace of God we were able to create something so beautiful.

We've had good days, we’ve had bad days. But being a father brings a level of perspective I had not known before. I don’t get frustrated as much at work. My faith has grown tenfold. But most important of all is the love I have learned. I am a father first, but I am also a cheerleader, buddy, goofball and comforter for my son. Cuddle time is THE best!

I grew up in a basketball family. My dad played, my two older brothers played and by right I played through my Junior year of high school. I decided my Senior year I was going to spend more time focused on music and theater. I was worried how my dad would take it. He was the MOST supportive one. I’ll never forget that. The reason I share that with you is I have no idea what path my son will take. It doesn’t matter to me as long as he is passionate about whatever he does. Moreover, he will never go a day without me letting him know how much I love him. Even on the bad days, especially the bad days,

Parents of preemies deal with so many different circumstances along their journey. Whether your child has no lingering issues, is working through developmental delays or is special needs, your love and encouragement will help them flourish

Happy Birthday Jayden!

Wednesday, May 23, 2012

Why Aren't More Dads Sharing Their Story?

By Jon Bennion

Whether it’s Facebook, blogs, Twitter, or spokespeople for preemies in general, mothers are at the forefront of sharing their stories about premature children and helping families who are going through the preemie experience. While there are some examples of male voices in this arena, they are certainly a miniscule minority (to put it nicely).

So where are all the dads?

To answer this question, let’s rule out some of the obvious myths.
  1. Dads don’t have preemies – clearly not the case;
  2. Dads don’t care about their preemies – not true at all;
  3. Dads don’t have time to tell their stories – implies that women have more time, which is also totally bunk;
  4. Dads don’t know how to share their stories – could be some truth to that, but not THE reason; and
  5. Dads don’t want to hear from other dads – completely bogus. Men want to hear the experiences of other preemie fathers. And guess what? Women want to hear from fathers as well. 
So to answer my own question of why dads aren’t sharing their stories, let me just say it can mostly be summed up in one word: vulnerability.

Much of what can and should be shared about the preemie experience requires a person to express a vulnerability that many men are reluctant to reveal. If someone is honestly voicing their story about a deeply personal, family matter that may be tied to feelings such as disappointment, fear, anger, self-pity, guilt, denial as well as positive feelings, it leaves the writer/speaker very vulnerable. This may be over-generalizing males, but feelings of vulnerability tend to be a place men would rather not go.

The NICU was the most concentrated period of emotion, both good and bad, that I have ever felt in my life. I never expected to spend four months waiting to bring home my son, Jack, who was born at 23-weeks gestation. Those feelings were ones I had felt before, but not in such an intense, whirlwind context that left me emotionally and physically drained. Both moms and dads of preemies feel those same things, but it’s the moms that have truly seized the opportunity to reach out to other parents. They only have a near monopoly because we don’t share more of our stories.

As a new contributor to Papas of Preemies, I plan to use my next few posts to explore some of those feelings that new parents, including new dads, often feel as they find themselves in the foreign world of the Neonatal Intensive Care Unit. I hope more fathers take a moment to share their experiences so that others may benefit from them.

Tuesday, May 22, 2012

Early Intervention Part 2 - A plan emerges

One step at a time, Buddy.  We will get there!
By Joel Brens

Today we had the chance to sit down with the Early Intervention Coordinator, Speech Therapist and Developmental Therapist. We were given a copy of his evaluation and a couple of sheets as a means to discuss talking points for his development plan, most notably the Child Outcomes Summary. We were asked to share how we would rate Jayden’s abilities in three main categories-
  • Positive Social Emotional
  • Acquiring and Using Knowledge and Skills
  • Taking appropriate action to meet needs
The scale goes from Not Yet through a number of ratings to Completely able. We were pleased, and relived for that matter that we were in agreement with the team about his abilities. Truth be told, there are things Jayden does really well. There are also a number of things he needs some serious work with, namely his speech development. It was nice to have our coordinator ask us what WE were looking to work on rather than telling us how it was going to play out. I am well aware that different counties have had different success and failure stories, and I am very pleased with the direction this has gone.

When we started to dive more in to a plan of action we were informed that we would have different therapists then the one’s we had met when his therapy begins. I was bummed to hear that as I really liked both of them and felt comfortable with our dialogue. Alas, they have jobs to do as well. I just hope we can have a good relationship with the people we work with. We also discussed financing. All families are expected to pay a monthly family fee, and insurance, ideally, should cover all the therapy sessions. This was a MAJOR concern to me as Jayden and I are on a individual plan. It’s a PPO but we are set up for a Health Savings Account (HSA) With it you pay 100% of your negotiated rates for doctor’s visits, prescriptions etc. I’m not sure how much it would be but I was really worried. Fortunately, since I have individual insurance and it’s a HSA we qualified for an exemption. Thank you God! I was near tears when she informed us of that. We will be doing weekly sessions with the Speech Therapist. The Developmental Therapist will be over twice a month. All we can do now is embrace the moment and do everything we can to help him along the way.

I will be filming our own therapy sessions from week to week to hopefully show progress. I have no idea if it will be a great tool or a complete flop. I plan on showing as much as I can, good days and rough days. Perhaps it will shed a little light on something I feel is important to talk about.

Monday, May 21, 2012

Dear Complete Stranger- Things To Consider When Lending Advice

By Joel Brens

I think it's fair to assume that every parent has had advice given to them by people they don't know. At least a few times. Everyone seems to have some sound advice to lend, whether it's warranted or not.  As a parent of a preemie, emotions run rampant. It's easy to be consumed by what others think. It creates additional stress, and most people don't take that into consideration when making observations and comments.

To be fair, before I experienced becoming a parent, moreover of a NICU baby, I would look in curiosity at children that looked different. I would think "Wow that baby is tiny" or "I wonder what that machine does".  I was more curios than anything, but it wasn't until our 7 week preemie was born that I started to consider how the parents felt. How whenever they are out in public they are well aware of all the glances people shoot. It's a tough spot to be in.

I remember the first few times my wife and I brought Jayden out in public. On at least a few occasions complete strangers would come by and ask how old our son was. When they were surprised to hear he was pushing three months they said "Wow he's a little guy!". I almost felt like I had to explain myself, as if I was justifying the circumstances that led to our son coming pre-term. It was irritating.

There were other times people would comment on what I was doing. I had someone tell me to stop patting my son's back like that if I wanted him to sleep. What I wanted to say was "I'm sorry we must not have met. You must be my son's full time nanny. Apparently a few sleepless nights using trail and error and finding this routine to calm him is completely useless." Instead I took the high road and explained it seemed to work great for him. Truth be told the only person I will take advice/criticism from, outside of other NICU parents, is my mom. It may be in one ear, out the other but she is partially responsible for my creation. She has earned the right.

Jayden managed to gain weight at a furious pace, so by the time he was six months the questions about his size slowed down. But easily the most frustrating thing I hear from people is "Don't worry, your son will be fine" in response to a couple of things. First one is regarding illness. We were adamant in his first year to steer him clear of germs whenever possible.  If you were sick, even the sniffles, you weren't coming by Jayden. Period. The idea that germs would help my son fight off future infections fell on deaf ears. My father lost his battle due to complications of myeloma stemming from a compromised immune system. Rolling the dice with our son was not an option. Didn't like the feeling of people being upset with us. But I don't regret the decisions we made.

The second, and most frustrating instance when someone tells me to "Not worry, he will be fine" in regards to my son's development. What they cannot comprehend is that my son's development consumes me. I'm sure other preemie parents can relate to the feeling. I worry about it every night. Every. Single. Night. From the time he was born to his first night home to today. Is he breathing? When will he roll over? When will he sit up? When will he start crawling? Pulling himself up? Walking? Talking? Telling me to not worry trivializes the day by day journey you take when having a NICU baby. We discussed a growing concern with Jayden's speech development and got Early Intervention involved. They place him developmentally at a baby nearly a year behind. Thank God we looked into it and didn't wait till he was three, when EI couldn't do anything to help. Now he can get the help he needs and he will be in better shape when he starts schooling.

Being a parent is no easy task. As the parent of a preemie baby, all I ask is that you be aware of the sensitivity involved in the day to day struggles we face. Think about what you are saying beforehand and consider that while your intentions may be good the message may not be perceived that way.

Thank you,
Proud parent of a preemie

Sunday, May 20, 2012

Early Intervention Part 1 - Evaluations

Daddy will help you along the way
By Joel Brens

Comparisons, in a general sense, can be dangerous. As a parent that is very true when speaking about development of your children. Everyone learns at a different pace. As most of you know my son was born seven weeks early. While we watched him get strong during our 25 day stay in the NICU we were told to expect delays in development. We were told that generally you get an idea of where your child is at once they turn the age of two. While I'm sure all parents worry about a child's progress it's a whole new ballgame when it is considered the norm.

While Jayden was a little bit behind with things like crawling, standing up and walking, it wasn't enough to concern me. We had quarterly meetings with a member of the county health department. She always seemed relatively pleased with his progress. That was always good enough for me. But over the past 6 months our daycare provider was staring to vocalize some concerns that he might need to be re-evaluated. She has worked with kids for over two decades and while I was angry at first, in the back of my mind I knew she could be right. Every day we try to teach Jayden new words. His vocabulary hasn't expanded much past "Ma-ma" "Da-da" "Bye-Bye" and "Baby". He has said other things once or twice but hasn't put it together. After trying some simple changes in his daily routine, as suggested by our daycare provider, not much had changed. Despite already knowing the answer to the question, I asked "Think it's time for an eval?" She nodded yes. She said the worst thing that can happen is to wait too long and look back with regret that something hadn't been done earlier. That evening we set up an evaluation with a developmental therapist and speech therapist.

Last Wednesday night I had a horrible time trying to rest. My mind was absolutely racing. Our first meeting was Thursday morning with the DT. When she arrived I was a nervous wreck . How was Jayden going to react? Was he going to surprise us all? We watched as Jayden played with a simple puzzle with ease. But the second she took it away he started throwing a fit. She tried other toys and asked simple questions to see how he'd react. He would respond but usually it took a painful amount of time to happen. The therapist would ask us questions and my wife and I would interrupt one another trying to paint Jayden in a light perhaps he wasn't. As she was writing her observations down my stomach was in knots. About half way through the eval I had to leave for work. I told my wife to text me when they were done. While going about my business at work I heard my phone buzz. It read "He qualifies. She said that he is in line developmentally with a 12-13 month old. She also said that his left foot is a bit pigeon toed so physical therapy may be needed too... :- ("

Our son will be two in less than three weeks. I had a hard time reading that. It took every ounce of me to keep my emotions in check. I was a mess inside. The county evaluator said he was doing great in November. How the hell did she not see this? I expected to hear he was behind, but the idea of it being close to a year was like a punch in the gut. I cried to myself. A couple of times. I have the good fortune of working with some pretty cool people. They said a bunch of nice things to try to cheer me up, but the reality is that none of them had personal experience with EI. Luckily I was able to leave work a little early and get in touch with people who have been there. Hearing "That fact he qualifies is a GOOD thing, now he can get the help he needs" was what I needed to hear, despite not considering that at first.

Just Monday evening the speech therapist was over to evaluate. While I was still nervous and held my breath, I wasn't surprised or devastated to hear she felt the same way about his progress. We have a long road ahead of us. We meet on May 8th to hear the teams plan moving forward. Rather than consider this an obstacle we will take on this opportunity with open arms. I am proud of my son and he will no doubt do amazing things in his life. But like most things in life, you have to take it one step at a time.   

Saturday, May 19, 2012

A father's plight: Helping my wife cope when breastfeeding wasn't working

By Joel Brens

As a father there are things I will never be able to comprehend as far as a bond between my wife and my son. The time a child spends in utero and the connection on a physical and emotional scale is something as a male I am unable to feel. One of the greatest bonds a mother can have with child is breastfeeding, which is what I want to share some insight into from my perspective.

My amazing wife had a difficult pregnancy. She had Pre-eclampsia and high blood pressure issues and had restricted blood flow in her umbilical cord. After a couple of weeks full of NST's and Bio-physicals the doctors noticed the blood flow had started to become diastolic, meaning it was starting and stopping frequently. Not good. Doctors decided that they would proceed with inducing labor or c-section a couple of days later. Much to our dismay the next morning our son's heartbeat dropped to a dangerous 60 BPM. They decided right then to take the baby. At 8:11am on Tuesday May 11th, 2010 Jayden Jack was born at 3 lbs. 6oz. He was the most beautiful thing I've ever seen.

For obvious reasons getting him proper nourishment was a top priority. Gravity Feedings were his source of nutrition the first week or so. In the meantime my wife was attempting to pump as much breast-milk as she could. Unfortunately she wasn't producing as much as she was expecting or hoping to. But I told her to be patient and things would get better. We were fortunate to have some pretty great lactation nurses at our hospital. They not only provided valuable information but were cheerleaders and understanding to us. I wanted so desperately for my wife to pump large amounts of milk. Once the speech therapist gave the green light to start breast-feeding we were hoping that would kick-start her production. In the meantime we were also teaching Jayden to take a bottle. He would jump at the idea of feeding but would lose interest quickly. I suppose the idea of working for your food wasn't as fun as taking a bottle. One of the nurses quipped that he had decided to take the elevator instead of the stairs. So incredibly true. By this point my wife was able to produce enough milk to keep him occupied for a while. But as he got closer to coming home, the reality that she wasn't going to be able to keep up become quite a harsh reality.

Not only is pumping every two to three hours exhausting on moms, but the time necessary to clean parts makes it a daunting task. I did not envy her position. But I did do everything I could to help. As the days wore on and backup supply was beginning to wain, I could feel her heart breaking over facing the choice of when to switch to formula. I remember vividly a day I came home from work and she looked very bummed out. She explained that she had just finished pumping and while trying to put everything away accidentally spilled a 3oz. cup of breast-milk on the counter. To us, that was A LOT of milk. I knew she was upset but didn't realize until she admitted a couple of days later that she broke down when it happened. I felt so bad for her. I was always willing to help support her (emotionally and physically) but at times I didn't know what to say or how to say it. I just let her know I loved her no matter what.

When we made the choice to switch to formula we were blessed that it was a relatively smooth transition. I am most grateful of that. I also leaned a lot about my role as a father regarding how to be there for my wife.

Here are some bits of advice I'd give to dad's with new babies:
  • Don't let anyone tell you how or when you should stop breast-feeding, and more importantly don't let it bother you. I can't believe how many "experts" are out there. Do what's best for your family.
  • Every case is different. I have an old friend who had almost the opposite issue where she couldn't stop producing it seemed. Comparisons are dangerous and can only lead to extra stress.
  • Help as much as you can. For starters lend help cleaning parts. But also BE THERE for your wife/significant other, on all levels.
  • Be open an honest about your feelings. Make decisions as a team.
  • Seek knowledge from lactation nurses. They can be most helpful.
  • Most importantly, let you wife/significant other know you love them. No matter what.

At the end of the day you have to figure out what works for you. And every story is different...

Friday, May 18, 2012

Tough Choices: Another child after a NICU Stay?

By Joel Brens

The greatest thing that ever happened to me was becoming a parent. No question. Jayden will be two come this May and is doing remarkably well for himself. I often pinch myself thinking about how profound the creation of life is. I also think about how complex and perfect everything needs to be for life to function correctly. Millions of things need to go right in order for life to flourish. It's mind boggling. I am the youngest of three boys and my mother lost two babies before I was conceived. They considered just having two children but as fate would have it I was meant to be. Wow... that's certainly a heavy feeling.

Jayden's stay in the NICU was only 3.5 weeks, which pales in comparison to a lot of stories I've heard. That doesn't change the reality it was a very trying and touchy time. Since he has been out, (and flourishing as a toddler) the subject of growing the family has come up numerous times. Whether it's from family, friends or strangers who I've met I hear this question a million times: "(When) are you planning on having other kids?" My response "I'm not sure" gets a wide variety of reactions from people.

The idea of a trip BACK to the NICU makes me uneasy. We were fortunate to have an awesome team of doctors and nurses and a resilient boy the first time around. But what if that wasn't the case?  What if he would have had multiple issues? What if he was way behind on his development? When I explain to people that the idea of dealing with another child in NICU freaks me out they usually say "I understand". Do you? Do you know what it's like to feel completely helpless for over three weeks in a hospital? Do you understand what it feels like when you desperately need a break from it all and you STILL feel like your abandoning your child? Its not fun.

Another issue that weighs on me is my wife's health. She dealt with pre-eclampsia that gave her high blood pressure issues and she will also be turning 35 this fall. NICU baby or not those are concerns that would naturally come up under any circumstance. The older the mom is the higher risk you run for serious issues. Please understand that regardless of disability, health or developmental issues I would love my child unconditionally. That's not to say that it wouldn't be in the back of my mind. The choice keeps me from sleeping sometimes.

My brothers mean the world to me. They have seen me at my very bet and very worst and have always supported me. I never forget that. I would love for Jayden to have a brother or sister, but I wrestle with the pros and cons daily. Depending on when we feel the time is right we haven't ruled out looking into adoption as well. But that's a whole different can of worms for another time. Right now we are truly blessed and happy with our little treasure Jayden. Only time will tell...

Thursday, May 17, 2012

Preconceived notions from a NICU dad

By Joel Brens

Typically when you ask people about fathers and what words or phrases come to mind you hear things along the lines of: Provider, disciplinarian, tough love, rock of the family, etc...

While these can all be very true I think society has somewhat trivialized what is expected from a father. It's as if we are an afterthought in the family picture. We are always the last to be asked how we are doing. Always with "How's the baby?" and "How's the mama?" In case you were wondering I'm doing wonderful. Thanks for squeezing me into 15 seconds of conversation... Am I a very active and involved father? Yes. I do know that's not the case for every father but I sure do know quite a few dedicated fathers. We'd like some recognition too. (For the record my wife is always appreciative of my active involvement in the family.)

When my wife and I had our son seven weeks early, I struggled greatly with my emotions. I wanted to be comforting and strong for her. Truth be told I was a white hot mess. Terrified. Is he going to be okay? How long will it take to know he's progressing? How long will he be hospitalized? Some nurses were saying three to four weeks some were saying closer to two months. Within hours of his birth he was placed on CPAP. What a wonderful and horrifying instrument. First he was at 32% oxygen. Then they lowered it to 25%, only to bump it back up to 32 again. It was a punch in the gut. The feeling of helplessness had set it. Only time and good care would fix it.

I will say that after we got through the first few days it started to get easier. There were bumps in the road, (apnea, Brady's episodes, minute brain hemorrhaging.) but after 25 days we found out we were going to take him home. I remember so vividly the night before he was to be released. I was working a closing shift and got up to the hospital around midnight. He had a couple of criteria to meet those last couple of days, most notably weight gain. Ugh. Weight gain. Every day with the weight gain. Thinking about it stresses me out now! Anyway, I walked over to the area they had my son. The nurse looked up and said "Looks like your son is going home tomorrow" I was so happy I cried. And I cried some more. And I held my little treasure in my arms and spoke softly of great adventures we'd go on. I was finally going to be a full time dad. I share this story with you in hopes it may reach some other dad out there and perhaps strike a cord. It's okay to be afraid. It's okay to be scared. Every families story is different, but you are not alone.