Wednesday, June 25, 2014

Preemie Dad Updates

Just wanted to give you all some updates on a few of the dads who have been contributors to the group...

Joe Mata

Going on 2...WOW! 

On the 29th of this month, our little warrior will be celebrating his 2nd birthday.  I can't help, and it happens quite often, but think about the battles he has fought at such an early age.  I find comfort in the thought that our son will never remember the pain of IV after IV, all the needle sticks, the time alone in his islet, and on and on. But I also sit and think about how far he has come. From a 26 wk old micro preemie weighing 1 lb 14 ounces, with grades 3 and 4 brain damage, to now a 35 pound active bundle of a boy. He has been receiving physical and occupational therapy since he was 6 months old. He had speech therapy for a few months but quickly 
graduated.  

The therapy continues and he is progressing week after week, but every day is a blessing and we find something new to be thankful for.  He is not walking yet, but that does not stop him from going everywhere and getting into everything.  Isai is becoming very vocal and is quick to show his disapproval when he does not get his way.  He still has a long road ahead of him. As much as he is progressing, there are things he still struggles with.  He still has difficulty using his right hand and arm.  Things like reaching and grasping still present a challenge but he is determined to overcome. 

Though the road ahead is still long, I know that with God, nothing is impossible.  I know in my heart that our son will grow to be perfect, the way he was meant to be.  To the regular person, Isai is a normal, happy go lucky little guy.  To me, he is my hero.  



Rob Berry

Our daughter Hazel recently turned three. She is a former 24 weeker and has come so far. Hazel loves to read books, play outside on the trampoline and enjoys making all sorts of Playdoh creations. She knows the alphabet like nobodies business and can spell and read 10-15 words.

Hazel is heading to preschool in September where she will receive speech-language assistance. She is a happy, healthy, 'normal' three year old. The NICU was such a scary time in our lives but seeing our little girl thrive makes it all worth while.

Jordan Stowe

Adeline Marie Stowe was born at 3lbs 12oz, and is now a very healthy 19lb thirteen month toddler.  She is getting on track with her milestones.  It has been a very challenging year for us, and since the NICU.  She is definately finding new lessons to teach us each day.  Her pediatrician remains happy with her progress, as well.  

Addie is just full of life and loves to laugh at everything.  We have spent a small fortune on elaborate toys and stuffed animals, but her favorite toys remain my car keys and our smartphones.  This fathers day I'm looking forward to spending it with my wife and daughter, Shanna and Adeline.  

Last fathers day, Addie had just come home from the NICU and it was very interesting to say the least.  But, I was with my new formed family, and now, that's all that matters in this world. 

Joel Brens

It's so strange how your life changes as your child grows out of the "preemie" stage, with milestones and obstacles steadily changing. We have come a long way since Jayden was born seven weeks early. It's fair to say we all have learned and grown as a family; Gena and I as parents and Jayden as a growing toddler. 

I am so tickled by Jayden's progress, especially over the last six months. To think about where we are in regards to Jayden's speech as to where we are when we started Early Intervention services when he was two is mind-boggling. While he still has a way to go, it doesn't put the weight of the world in stress on it like it used to.

Jayden is making new friends at his preschool extended school year program, and he will be back with his same teachers when the regular school year comes around in August. We certainly feel blessed to work with amazing staff.

Thursday, May 22, 2014

The Elephant In The Room: The Reality Of Dads Guilt

Recently I shared a wonderful blog written by Tatum of Ain't No Roller Coaster about the reality of Mom Guilt. It's something a lot of moms can relate to. Guilt is an understandable feeling that moms feel about their preemie children. Could I have done something differently? In so many ways, though, it also forced me to look into the mirror and accept a reality that a lot of dads need to accept and work through as well: Dad guilt is a very real, very raw, and very concerning issue most dads wouldn't dare speak of. It's too taboo to talk about it. Well I hope to end that misguided mindset.

My name is Joel Brens, the father of a happy, healthy, active, and growing  4 year old, and I struggle with dad guilt on a daily basis.

I spent a majority of Jayden's 25 day stay in the NICU as a glass-half-full positive thinker. While I was scared, I was thrilled about being a dad. The fact that Jayden didn't have any major obstacles or setbacks made it a lot more manageable than I had prepared for.

My guilt stems from the journey beyond the NICU. Becoming the dad I had hoped to be when we first found out we were expecting has proven to be much more difficult than I first thought. Perhaps an explanation is warranted.

A perfect example would be the choice to be a stay at home dad instead of keeping Jayden in a daycare over the last couple of years. After two failed attempts at daycare providers, we decided to keep Jayden home with me during the days to ensure he was being watched after properly. There are some benefits of having him stay at home, but I often wonder if he had had spent more time with his peers before starting preschool if he would be farther along with his progress in relation to his speech and communication development. Where do we draw the line between what's best for us as a family and what's best for Jayden? I feel guilty that we robbed him of crucial peer interaction at a valuable time in his life. Perhaps it wouldn't make much difference, but I am left to constantly question whether we made the right choice.

Guilt manifests itself in other ways as well. Jayden is making noticeable progress in his development, but he still has a ways to go. Most days when I look in the mirror the thought crosses my mind, "Am I doing enough?"  I know that Jayden is not wanting in regards to affection, he knows his daddy loves him to the moon and back, but I constantly wonder if I am doing enough. Am I doing enough exercises with him to practice his reading and communicating skills? Every day we work to get closer, to make progress, and the progress is tangible. But the guilt I feel about the dad I am and the dad I want to be is real. People say "Oh you are doing a great job with Jayden" Am I? Sometimes my patience is paper thin, sometimes I don't have the energy to give him the attention he deserves. But we keep forging ahead. Surviving day by day.

It's difficult to explain to others that I'm carrying dads guilt around with me every day Jayden is working to catch up to his peers. I know that his progress stems from my efforts as much as his team at preschool. But I still struggle with guilt because I so desperately want Jayden to get over this hurdle, as it will benefit all of us.

Fellow dads- dad guilt is real, don't be to proud to acknowledge it. Perhaps understanding what you are dealing with will help you manage the journey of parenthood better.   

Tuesday, May 6, 2014

The Importance Of Hands On Parenting In The NICU

By Joel Brens-

(Editor's Note- This was originally submitted as a research paper for a course I am taking)

The moment I held my son in my arms for the first time, it was one of the most wonderful feelings I had ever experienced. In so many ways, however, it was also the scariest. My son Jayden, like one in nine babies in the United States, according to March of Dimes, was born prematurely (Prematurity Campaign). My wife started having complications as we forged into the second half of her pregnancy, including elevated blood pressure issues and restricted blood flow through my son’s umbilical cord. After a couple of weeks of close monitoring, doctors had discovered my son’s blood flow in his umbilical cord artery had become diastolic, meaning it was starting and stopping. Doctor’s were forced to operate the day after she was admitted to the hospital because of an extremely low heart rate for my son. Much to everyone’s relief, Jayden was born in stable condition. Born at 32 weeks and 6 days, Jayden was a mere 3 lbs. 6 oz. and was 17.5 inches long. He was tiny, fragile, and absolutely beautiful. The love I felt for him the moment I laid eyes on him is hard to explain. Just as real as the love and joy that came with being a first time parent, a gripping fear took ahold of me shortly after I walked into the Neonatal Intensive Care Unit, also know more commonly as the NICU. This area of the hospital is specially catered to infants who were born prematurely, before 36 weeks gestation, and also babies that were born with other complications. Rooms full of machines, tubes, wires, and alarms going off on a regular basis, the NICU is equal parts intimidating and heartbreaking. It was such an adjustment acclimating to the NICU, where we spent 25 days as Jayden learned to breath room air, to bottle feed, and to maintain his body temp. There were ups and downs, progress and setbacks, but at the end of the day, it was learning to let go of my fears that was the first crucial step in making the experience manageable. While it took a little while for me to realize, once I understood that being knowledgeable and involved in my sons care was critical, the impact it had on both Jayden and I was significant. My story is not an anomaly, significant amounts of research has been done to support the critical nature of parents involvement in their babies nurturing. Parents in the NICU need to understand, and more importantly embrace, the choice to be “hands on” in the NICU.
Being hands on in the NICU can look like a bunch of things. Not only can physical contact make a positive impact, but talking with your child, gaining knowledge, and understanding your child’s continuity of care are essential to your experience and can help on so many levels for your child’s development. As I mentioned before, the experience of being a parent in the NICU can be extremely difficult. While our son’s 25 day stay in the NICU was relatively uneventful, I know all to well the trials and tribulations some parents have to manage. A perfect example would be a fellow preemie parent by the name of Jon Bennion, someone who I connected with through preemie support groups. His son, Jack, was a micro-preemie, born at 23 weeks 1 day and weighed just over a pound. According to Children’s Hospitals and Clinics of Minnesota, a micro-preemie is an infant born between 22 and 29 weeks gestation or weighing under 1500 grams (Micro Preemies).  While we both share experience of life in the NICU, our stories are stark in contrast. A lot of NICU parents inability to dive into the parenting role is an overwhelming fear of losing their child, or in the case of Jon, their son was simply too sick to risk holding. I asked Jon in an interview about his early on experiences with his son in the NICU, and what he said was quite telling. He said of the experience of their circumstances “The initial shock took weeks to wear off. I had never experienced denial in the magnitude I dealt with while in the NICU. It took several days for me to figure out what was expected of me as a parent” (Bennion). Therein lies the heart of the issue for the immediate barriers most NICU parents feel. An abrupt, unexpected birth, followed by a completely unfamiliar setting, and usually dozens of questions unanswered. On a couple of occasions, I have spoken at conferences about the experience of becoming a NICU parent to that of standing over a trap door. All of your expectations, hopes, and dreams are suddenly pulled out from underneath you, and you are left to pick up all the pieces. We had a couple of weeks to digest the likelihood of a preemie, and even a day when it became imminent. Most NICU parents don’t have even that luxury. So when the shock wears off, whats the first thing we can do to get involved in our child’s care?
As I mentioned earlier, sometimes something as simple as talking to your child can have a positive impact on him/her. According to Andrew Seaman, who writes about healthcare for Rueters, studies have shown that “an increased amount of adult talk in the NICU was tied to higher language and thinking skills” based on their tests of seven and eighteen month old babies (Seaman). Sometimes in the very early stages of NICU parenting, softly taking to your child is the only form of contact available, and it’s critical one at that. Giving your child the opportunity to familiarize themselves with their parents voices will help with the bonding process. I made a point to gently talk to my son through the incubator when I could. While it was tough, within a few days he would turn his head in my direction when he heard my voice. He was recognizing my voice, and it meant so very much to me. 
Something that gave me a great deal of confidence while we were in the NICU was learning as much as possible about my sons continuity of care. From the machines, tubes, and wires, to the countless amounts of acronyms and medical jargon, to the ways my wife and I could directly impact the progress of my sons NICU stay, we dove in head first. Of course the first few days I didn’t have the slightest clue how to feel or what to ask. It was like I was holding my breath. While I was cautiously optimistic, I was also somewhat waiting for the the other shoe to drop. I felt like I had absolutely zero control over the circumstances, and it ate away at me within the first day or two. According to Elizabeth Sprouse, a healthcare system communications manager, “Having a voice is empowering [and] that holds true for the NICU. In fact, when parents are able to voice their concerns and thoughts, it helps them process the situation. After all, you share the same goal as your NICU care team -- helping your baby. Therefore, a collaborative relationship can be a powerful tool. Express your interest in being a part of your child's care” (Sprouse). As I started asking more questions, learning the terminology, and accepting that some things were completely out of my control, the NICU quickly became much more manageable.  In so many ways, however, this mindset isn't something that is necessarily easy to embrace. As I have mentioned before, the NICU is such a foreign and scary place for parents to be. I have had the pleasure of getting to know Dr. Sue Hall over the course of the last few years. Dr. Hall, a neonatologist who works with these critically ill babies, is the author of For The Love Of Babies, a book written about 16 babies and their journeys through the NICU, including their families' experiences as well. She is also a champion for NICU parents and helping bridge the gap between healthcare professionals and NICU families. She understands that sometimes the dynamics of the NICU can put extra stress on families, and it is up to the parents to understand that the NICU staff is working in your child’s best interest. As Dr. Hall says “Sometimes parents need to get over the fact that NICU nurses know more about their babies then they do; this leaves them feeling left out. They need to form an alliance with the babies nurse to feel more involved. They need to reclaim their role as a parent” (Hall). I could not agree more with this sentiment. While holding my son in the NICU one afternoon, I inadvertently cut off his airway and sent him into a bradycardia episode setting off alarms and forcing the nurses to intervene. Cheryl Bird, an R.N., explains a bradycardia is defined as a significant drop in blood oxygen level, a byproduct of a babies inability to breathe (Bird). I was completely distraught about the situation, and a very kind nurse told me “Don’t beat yourself up about this, it could’ve happened to anyone. You are going to be a great father.” That compassion and understanding are a byproduct of the relationship we forged with the NICU staff.  
At the absolute heart of “hands on” NICU parenting is Kangaroo Care, or skin to skin contact with the infant. The benefits on a sociological, emotional, and mental level are eye opening. Dr. Yamile Jackson, Founder of Nurtured By Design, and a fellow preemie parent, has not only become a huge champion for kangaroo care, but has also developed products for NICU families to make a positive impact on babies throughout the early stages of infancy.  Dr. Jackson has quite a fascinating story. Three weeks after her son Zackary was born, Tropical Storm Allison flooded Huston and shut down power at the hospital the were at, including the equipment that was helping Zackary sustain life. Dr. Jackson kangarooed her son Zackary while her husband and nurses took turns “bagging”, or helping breathe with a bag and mask, for over 9 hours (Jackson).  After 155 days in the NICU, Dr. Jackson committed to finding effective ways to positively impact her son from a neurological, psychological, and physical standpoint. She kangarooed more than 6 hours a day. Not only did she commit herself to her own hands on parenting, but she also developed products that are used throughout NICU’s across the U.S. The Zacky, named after her son, is designed to mimic a human hand and forearm that can be placed into an incubator that can carry the feel and scent of a parents touch. Placed on the chest or around the infants neck, this product has proven to significantly improve outcomes for these babies. According to studies she has compiled, benefits for the babies from kangaroo care include less incidence and severity of infection, improvement on cognitive development, restful sleep, earlier hospital discharge, reduced physiological and behavioral pain responses, and many, many others (Jackson).  Moreover the practice of Kangaroo Care can significantly improve the experience for parents as well. In a article written for livescience.com, staff writer Bahar Gholipour writes on the impact of kangarooing “mothers who performed the kangaroo care reported having a deeper and more caring relationship with their children than mothers who did not“ (Gholipour). Other benefits include resilience and feeling of confidence, competence and satisfaction regarding baby care, and increased volumes of breast milk for the mothers (Jackson).  I can not stress enough how incredibly important the bond you have with your child is and the ability to create positive outcomes. While I jumped at the opportunity to hold my son when it was appropriate, I never kangarooed with him. Feeling a bit clumsy, and a bit hairy chested, I was embarrassed about doing it. While I don’t have regrets from the NICU, in hindsight I really wish I would have approached the opportunity differently. 
As I mentioned earlier, the NICU journey we went through was trying, but by no means was is anything quite like the experiences parents with micro-preemies endure. We never faced life and death choices. We weren’t dreading the phone ringing anticipating bad news. While Jayden had a few setbacks during his stay in the NICU, they were really small blips on the radar. Even in the thick of it, we understood the relative “uneventfulness” of it all. Some parents don’t have that convenience. Some parents spend months in the NICU, and are faced with life altering obstacles post-NICU. Some parents, sadly, never get the opportunity to bring their baby home. Perhaps it’s fair to acknowledge that diving into “hands on” NICU parenting is easier said than done? The reality is the trauma affects parents just as much as it can the babies. In a piece written for New York Times Health, Laurie Tarkan discusses how Post-Traumatic Stress Disorder, or PTSD, can effect parents in the NICU. Sharing the experiences of a mom in the middle of a very long and difficult NICU journey, she writes “During the six-month ordeal, Ms. Roscoe had constant nightmares. She slept with her shoes on, expecting a call from the hospital at any moment. She became angry at the world, and so jumpy she thought a supermarket scanner was one of Jaxon’s monitors going off” (Tarkan). The nightmares are very real, as my wife had them frequently for the first six months to a year of my sons life. Fellow preemie parents have shared with me the experience of being withdrawn or unable to find happiness in the wake of the experience post-NICU. Moreover, its not just the moms that suffer these obstacles. Research has suggested that PTSD symptoms may also be found in fathers months after the NICU. Again referencing Tarkan’s article, “although none of the fathers experienced acute stress symptoms while their child was in the NICU, they actually had higher rates of post-traumatic stress than the mothers when they were followed up later” (Tarkan). Most of my experiences in the NICU were positive, as I made a conscious choice to be supportive of my son and my wife. But in the months following our NICU stay, I had trouble letting go of anxiety about my sons development. I spent countless nights awake in bed wondering if tomorrow would be the day we would see Jayden roll over, sit up, stand, walk, etc. It was exhausting, and some days my temper was short. Gradually, it became easier, though we are still working through speech and communication delays with Jayden. Faced with the trauma of the NICU, and the sobering reality that things don’t magically go back to normal once your child comes home, it’s understandable that some parents struggle to embrace their parenting roles in the NICU.  

In a perfect world, every baby would be born under healthy and happy circumstances. Unfortunately, even through modern medicine and studies, we are still far away from accomplishing that goal. We have to not only accept what has unfolded before us, but we must embrace the choice to be “hands on”. As Dr. Hall says “If parents don’t get involved with their babies, they may never bond well. This could lead to problems with the infant’s self-regulation skills [and could lead to delayed development] since parents are guiding the their infant’s brain development through interaction with them” (Hall). Through knowledge, kangarooing with your child, and even something as simple as letting your child hear your voice, you can make a positive impact for your child’s development. It’s not a simple task to do, whether your journey in the NICU lasts weeks or months. In the end, we make the conscious choice to be active in our babies lives, even when faced with seemingly insurmountable circumstances. As Jon Bennion so eloquently puts it “While no parent wants or expects to be in the NICU, the challenges of parenting demand that a parent be ready for all sorts of problems, catastrophes, and hardships. You won’t regret taking an active role in your child’s life right from the start” (Bennion). No matter how overwhelming your circumstances are, no matter how many obstacles you are forced to overcome, making the choice to be “hands on” will benefit both you and your child.