http://youtu.be/AMDSI6vJxGA

Time.  It comes and it goes but why does it go so slowly in the NICU?  Each second feels like minutes.  Each minute feels like hours.  Each hour feels like days and sometimes weeks.  Albert Einstein said, “The only reason for time is so that everything doesn’t happen at once.”  Can you imagine if everything in the NICU happened at one time?  You’d collapse from the anxiety.  The doctors and nurses would fall over from the pressure and the entire operation might implode!

Thankfully time is doled out to us a bit at a time.  One way to manage time during your NICU stay (or even once you’re home) is to stay present.  Be in this moment right now.  This is no time for scheduling unnecessary appointments that you may not be able to keep or scheduling social appointments that will only be a distraction.

A piece of advice I give in Preemie Parents, 26 Ways to Grow with Your Premature Baby is to “lose your calendar”.  Life in the NICU is completely unpredictable and there’s little you can do to control it.  Scheduling anything more than a few days in advance is going to cause stress – exactly what you don’t need more of!

So put your calendar away.  Put your smart phone on vibrate.  Release all future commitments and focus on this moment , right now.  It’s where all of your power is.

This video is a great reminder of how much stronger our babies are than we are!

Video:  http://youtu.be/io5Uu5z7HBU

There are many ways you can give.  Adopt a “preemie parent” and give them strength, guidance and support on their journey – especially if you’ve been through your own NICU experience.   Give clothes, supplies and anything else that parents may need to thrive during their NICU journey.  Medical bills grow quickly.  At times, jobs are lost due to time spent at the hospital.  In this economy, a premature baby could be financially crippling to many families.

Finally, give financially.  Whether it’s a few dollars or a few hundred dollars, organizations that support premature babies (like the March of Dimes) and the parents of premature babies (like the Preemie Parents Foundation) always need financial resources.  While the March of Dimes has tremendous resources to conduct research in support of medical advances that help premature babies, there are no organizations that support the parents of premature babies specifically.  Please consider giving whatever you can to the Preemie Parents Foundation – www.preemieparentsfoundation.org.   The Preemie Parents Foundation makes grants to parents/caregivers to help them grow through their experience of prematurity.   They give financial grants for nursing care, psychotherapy (that is not covered by insurance) and even family trips to bring families back together after their NICU experience may have ripped them apart.

Happy Holidays and thank you in advance for giving of yourself this holiday season!

1. Meditate. Pray or meditate each day to gain spiritual or emotional strength for the challenge. Feel your physical strength building each day.

2. Be honest. Be open and honest with yourself and others about the fears you have. Talk through them and then make the decision not to live your life around the “What if’s.”

3. Find & Celebrate Joys. Find something to celebrate each day, even if it’s something small, so you remember to be joyful.

4. Help others. By reaching out to others, you’re putting your own challenges into perspective. It also temporarily takes your mind off your own challenges, which can be healing relief in itself.

Accepting the challenge of prematurity and learning a more positive way to look at it can make it much easier to handle – both mentally and physically. Remember that most obstacles provide opportunities to grow as a person throughout the challenge.

Tami believes that our will is a renewable resource and it is by sheer will that she was able to thrive during the five months of her life that she found herself: Unexpectedly pregnant with twins; Suddenly single after nearly 12 years of marriage because of the decision to keep them; Confined to a hospital bed for 5 weeks in an effort to maintain the pregnancy; And then an experienced mother in a new reality, fluctuating between prayer and advocacy for the health of the twins, born at only 25 weeks, weighing just over a pound and a half each. Her daughter spent nearly 4 months in the intensive care unit before coming home. Her son spent 15 months in the intensive care unit and 3 months in a rehabilitation facility before finally coming home in late August 2007, technology-dependent yet self-reliant. The twins join their older sister and brother, 10 and 7 years, respectively, in a home that had to be spiritually gutted and rebuilt to allow space for forgiveness of and gratitude to my former husband for leaving so that we could live from a place of faith and self-love.

Tami has used the lessons of her personal and professional journeys to restore her power and gain wholeness again. Developing an intimate connection with the Universe and then giving that connection a voice through the way she lives is her true devotion. She has expressed her truth in the way she gives context to experiences, takes action, makes decisions, in the people she chooses to surround herself with and the energy that she gives out and lets in. Her legacy will be one that empowers people to live their greatest lives, despite any challenge facing them.

At the encouragement of parents, doctors and hospital administrators, Tami has written Preemie Parents, 26 Little Ways to Grow With Your Premature Baby, to help other parents cope as she has — with heart wide open to learning life’s lessons. Both practical and inspirational, Tami has revolutionized the way people experience prematurity, divorce and other unexpected crises. Tami returns power to those who feel powerless as they go through their challenges by reminding them that “the context that we give our experiences is ultimately our defining story.”

“We never know how much power we have within us until we’ve gone through something, that before, we could never conceive of getting through.” — Tami Gaines

Article Source:  “Preemie Twins”

She is not preachy and neither comes off as judgmental and by sharing the vulnerabilities, self-blame and the low points that she endured with her audience, she becomes relatable to her readers who may have or may be currently suffering through similar turmoil. Gaines also infuses  in the book strategies for assembling allies and partners in the NICU from nurses and hospital staff.  For example, she shared in one of several “Tami Time” sidebars that she always requests that a nurse be with her during any conversation she’d have with the neonatologist. The purpose was to use the nurses as an interpreter, and have an emotional supporter there as well.  Seems methodical, but it isn’t. You can tell that her training in business and spirituality are the sources for these strategies. They  probably came as instinctual to her and what is natural to her can be resourceful and helpful to others.  Preemie Parents is instructional and very conversational.  The illustrations by Roni Orlina in the book match very well with each sentiment expressed within the book and the simplistic stick figures mixed with whimsical color create a sense of calm that a preemie parent may need at that time having to deal with layers and layers of other “stuff.”  Not all people may be able to relate to each of the 26 steps but just by reading them, they are provided perspective.  Sometimes, perspective is all you need.
Overall, Preemie Parents is a quick read and is a must-have gift for any parent of premature baby or babies.  I highly recommend it! Available for $15.95 (retail).*
*A review copy was sent complimentary to Bellyitch.

Written by JJ at Bellitch

One last thanks to Kim for her wisdom in introducing me to Laura Kennedy .  Laura has been a great fan of Preemie Parents, a wealth of knowledge about the sheer possibility of the virtual world and I place great value on her friendship.   Laura then connected me to Deesha Philyaw of Co-Parenting 101.  Deesha and I had a great connection on our initial call and she gave me invaluable advice on co-parenting, raising kids – we covered a lot of ground in that call!  Deesha had me on her show this past week and I’ll be forever grateful for the opportunity to share my story with her audience.  Be sure to visit Co-Parenting 101 and follow Deesha on Twitter!  She has her own amazing story and is an inspiration on many fronts.  By the way, the replay of my appearance can be heard here.

As if Deesha wasn’t enough, Laura then introduced me to Dabney Porte.  Where do I even begin to describe this dynamo?  She swept into my life full of ideas and giving of herself endlessly.   We quickly decided we were soon-to-be BFFs and she shared her own story of loss with me.  I encouraged her to write her story as part of the healing process and she did.  She wrote a beautifully moving narrative, which I’ve reprinted below in our “Preemie Parent Power” blog.  She certainly has power and continues to build herself daily.

It is with much gratitude that I acknowledge each of you!  I can’t wait to see what earth angel appears next on this exciting ride!

Some of you may know that I am the mother of two children. My daughter, the “Little Diva” is twelve and my son, “The Teen” is sixteen. What many of you do not know, is that I am also the mother of a “Little Angel” who left this world before she ever lived. Her name was Emma Turner Porte and on April thirteenth, I will celebrate her fourteenth birthday.

I recall with sadness, the day fourteen years when I noticed something was just not right. I was in my twenty-fifth week of pregnancy and had been feeling simply fabulous and excited about welcoming my second child. On this day however, I noticed that the blissful movement and stir of life within me had stopped. No kicking, no squirming from my baby. Just silence. I intuitively knew before I was told that something was very, very wrong.

Testing was ordered and I was sent to the hospital, as I was reassured that all was probably well. I recall my intuition telling me that was not so, yet hoping and praying it was. During the sonogram, the monitor was turned away from me and as the probe was rolled over my baby within, the technician’s face confirmed by biggest fear. Then doctor spoke the words that I thought I would never hear. “Dabney, I am so sorry. Your baby has died.”

I was not prepared. My body shook and trembled and I cried from the depth of my soul. I had never experienced such emotional and physical pain. It was as if the sounds of my sobs were coming from someone else. I clung to my swollen belly and cried for hours. In that moment, I learned what true loss felt like.

As I exhausted myself from crying, I looked within my soul for energy to go on. I knew I needed to take this journey of grief in a manner that would allow me to experience the pain fully so that I would find success in letting go and moving on. Even fourteen years ago, I knew I did not want to be a victim of adversity.

I delivered my sweet Emma two days later. We held her lifeless body in heated towels as I sang to her, kissed her and told her how sorry I was that she would not be joining us here. I still recall how beautiful she was. She was physically perfect and looked much like my twelve year old daughter looked on the day of her birth. When they took her from my arms, a piece of my soul went with her and I physically felt pain in my heart. The word Heartache now truly had meaning to me.

My journey beyond that day was more difficult than any journey I have taken since. There was the funeral, the maternity leave without a baby, the empty nursery, the wave of pain and the challenge of moving ahead looming in front of me.

Each spring, as the tulips and daffodils start to bloom and signs of new life surround us, I am carried back to memories of Emma. I think of how old she would be, what her passions would have been and what her laugh would have sounded like. I can clearly picture her when I close my eyes as I connect with her spirit that has quietly and privately surrounded me each day over the years.

For years, I have celebrated Emma’s unlived life privately, as many do not understand what if is like experience a death of a child in the manner in which I did. It is as though because her life was not lived outside of my womb, it was not lived at all.

Today I am choosing to celebrate out loud the gift that was given to me for those brief twenty five weeks. For you see, it is today that I realize that the pain of my past has lead me to exactly the place I belong. As my first experience facing true adversity, I challenged myself to walk through it and in doing so; I was led to this present moment.

During the funeral, words were spoken to offer peace. Many told me there was a reason for my loss, that God had his purpose. I was told in the end, we would all see the lesson Emma taught us. The words whispered to me on the day I lay my daughter to rest with my Grandmother, are the ones I recall most.

Only a daughter of yours would be sweet enough to never live, so that she could teach lessons to us all

Today, I now know the lessons I learned are ones I share through my work today. Adversity can in fact define us. It is up to us to choose how. In revisiting this lost chapter of my life that I seldom turn to, I smile. It is with a mother’s love that I realize it is my own child Emma, who taught me how to be a Diva. Through losing her, I realized the importance of getting better and not bitter when faced with a life changing moment of adversity, loss and pain. In the end, I became stronger and embraced my power. Fourteen years ago I started to walk in my magnificence.

I celebrate Emma for her gifts and thank her for teaching me a lesson long ago. It is my daughter who taught me the many lessons I would need to be prepared for future adversity. I believe it is Emma that sprinkles Diva Dust on me when I need it, giving me my sparkle. Today, I celebrate my most precious angel for giving me my Diva Wings and helping me soar.

xoxo Happy Birthday my Sweet Emma xoxo

• Smoking
• Drinking too much
• Overeating or undereating
• Zoning out for hours in front of the TV or computer
• Withdrawing from friends, family, and activities

• Using pills or drugs to relax
• Sleeping too much
• Procrastinating
• Filling up every minute of the day to avoid facing problems
• Taking out your stress on others (lashing out, angry outbursts, physical violence)

And then they offer us some very specific ways to deal with stress. There are several steps to dealing with stress in their formula:

Identify the sources of stress in your life

Stress management starts with identifying the sources of stress in your life. This isn’t as easy as it sounds. Your true sources of stress aren’t always obvious, and it’s all too easy to overlook your own stress-inducing thoughts, feelings, and behaviors. Sure, you may know that you’re constantly worried about work deadlines. But maybe it’s your procrastination, rather than the actual job demands, that leads to deadline stress.

To identify your true sources of stress, look closely at your habits, attitude, and excuses:

• Do you explain away stress as temporary (“I just have a million things going on right now”) even though you can’t remember the last time you took a breather?
• Do you define stress as an integral part of your work or home life (“Things are always crazy around here”) or as a part of your personality (“I have a lot of nervous energy, that’s all”).
• Do you blame your stress on other people or outside events, or view it as entirely normal and unexceptional?

Until you accept responsibility for the role you play in creating or maintaining it, your stress level will remain outside your control.

Start a stress journal

A stress journal can help you identify the regular stressors in your life and the way you deal with them. Each time you feel stressed, keep track of it in your journal. As you keep a daily log, you will begin to see patterns and common themes. Write down:

• What caused your stress (make a guess if you’re unsure).
• How you felt, both physically and emotionally.
• How you acted in response.
• What you did to make yourself feel better.

Look at how you currently cope with stress

Think about the ways you currently manage and cope with stress in your life. Your stress journal can help you identify them. Are your coping strategies healthy or unhealthy, helpful or unproductive? Unfortunately, many people cope with stress in ways that compound the problem.

Learning healthier ways to manage stress

If your methods of coping with stress aren’t contributing to your greater emotional and physical health, it’s time to find healthier ones. There are many healthy ways to manage and cope with stress, but they all require change. You can either change the situation or change your reaction. When deciding which option to choose, it’s helpful to think of the four As: avoid, alter, adapt, or accept.

Since everyone has a unique response to stress, there is no “one size fits all” solution to managing it. No single method works for everyone or in every situation, so experiment with different techniques and strategies. Focus on what makes you feel calm and in control.

There will be more to follow in future blogs!