CONFESSIONS OF A PREEMIE MOM: Support Systems Matter

Every family that experiences a change of some sort knows or learns quickly the value of support structures.  When you bring a baby home or add another to the mix, the need for those structures increases exponentially.

Waiting in a waiting room... don't they look super duper excited?

When I brought, N home I learned first hand the value and need for these checks, balances and opportunities for growth, breathing space, sounding boards, prayer warriors and strong shoulders. You get to learn what your strengths are and how to support those areas that need reinforcement.   

This post is to share some of my favorites resources for building my own support system, give you a space to share your own and provide some tips on how to strengthen your structure. 

A favorite found at Journey into the Spectrum

1) Family:

This is a huge one for me. They are our biggest supporters, and the ones that can bring me to almost every heightened emotion known to man.  Since I am the eldest of a close-knit 5, I have been able to benefit greatly from this resource.  They've picked up the slack, reminded me of my strength and covered us in love, prayer, conversation and lots of really good food.  

The card we made for our mother this Mother's Day.  

2) Friends:

If you are anything like me, when life gets complicated, you find yourself retreating into your clam shell a bit more than you usually might have.  It's a protective instinct, and that's fine and well... but it doesn't serve anyone, least of all you. Stay in touch with the people that love you.  Rely on those that have been with you through "heaven, hell and high water".  Don't hide and bear life's adventures alone.  That's where that saying comes from -- "Life is a banquet." (that is better off shared.) 

To my lovelies that share my life... thank you bunches!!!  

What makes a great friend from Wak4Mg

3) Faith:

The life of a preemie mom is a complicated road to say the least, but the journey lived in brighter color when you have utilized the tools in your spiritual toolbox.  Tap into your spiritual center -- pray and Find your prayer warriors, your women's leaders, your elders, your shamans and your light-bringers and stay connected. Surround yourself with some positive and encouraging folks. There are quite a few people that have trouble seeing the good in a complicated circumstance.  Let those people that can only see the problems, the dark and the negative have a time out.  It uses up valuable energy.  Time and energy are precious, and yours are even more valuable...fuel up with the good and let the rest be.

Credit: SimpleDisneyThings

4) Community Support:

Find your tribe.  Our social worker at the hospital and his NICU team informed us of great programs that have made our journey stronger, better and provide even more layers to our support structure.  These for us include the Dallas ECI team with fantastic Vision, Feeding and Speech therapists.  Remember to ask questions, don't get washed away in all the technical jargon that you do not understand the whys and hows of their programs.  (Been there) Ask and if possible, look into whole family approaches.  (works for us)

Credit: The Ladies Roundtable Dallas 

What are your favorite resources for building your support structure?  Share below.

Happily,

Teia 

CONFESSIONS OF A PREEMIE MOM: What I'd Tell You on A Bumpy Road and Lessons In Empathy.

It's been a while since I wrote a "Confessions" post.  I debated writing this post, but it stuck with me and so I will.

N and Me 

It's been busy.  We've hit three months and over five pounds.  Whoop whoop. :)

Spring has set in, well at least, here in Texas, she is trying to.

I get all walled up in my pattern, get into a groove and make the best of a situation where so many of the pieces are beyond my ability to effect change.  It's the season of feeding and growing. We learn the fine nuances of CPaps, spotty leads, FiO2 levels, nasal canula and count flow levels like I am waiting for the lotto and discuss nippling, all while life goes on, time moves forward and the seasons struggle to change.

The road has been bumpy.  

You take a few steps forward, take a couple back and rest in a holding pattern for while.  Then you leap forward and practice thanking God for the process, for time and for healing.

I gain some perspective and learn what empathy looks and feels like as I see and listen to other families pain and thank God that it is not my house and that we've been spared their pain. Oh the cry that must erupted in Egypt in that dark Passover night. 

But I digress, it was early on Wednesday morning two weeks ago.  Had I not been so excited to see my Mr. N, I might would've noticed the subdued nature of the nurses that I passed in the hall.  But like so many times that I've walked into the NICU, you get into a routine.  

N waving at 3 months. 

Grab a sip of water.

Wonder how his day has gone. 

Wash up. 

Pat dry. 

Foam sanitize and push open the door. 

Quietly greet passing nurse. 

Grin happily at baby through the glass. 

I walked directly to his bed, set his milk on the shelf and only then did it register that the dark green screens were out.  

Hot tears well up and that frog lodges right in the middle of my throat as I try not to cry.

The dark green screens pulled close together always mean the same thing.  Someone's baby didn't make it and had passed on to Heaven.  

The monitor was still on and the nurses were subdued, efficient and graceful as they prepared the space and worked to soothe a hurting family.  Time seemed to drag on and I held my hand on Noah's back as I watched the ending of a too short chapter unfold. 

Relief floods my system.  Thanksgiving whispers in my soul.  Followed by guilt for that relief and grief at her mother's pain.

And I am reminded at the gift we have been given of time, of healing and the honor chance to be parents.

I am reminded that this is a blessed road we are on.  And if you are walking down the same road, and I know your story maybe different, but similar enough that you get it.  You understand where I am coming from, I would tell you... miracles happen -- quite frankly, the fact that we are right here, right now, means just that.  A generation or two ago what we are walking through right now and treatments available wouldn't even be possible, much less available.

"Grace has covered you.  Cling to the good.  Look for it -- see it -- acknowledge it and celebrate it. You are stronger than you know.  Life keeps moving forward and people aren't going to get it.  And that's ok.  Honestly, you might not want them to.  Experience is a hard teacher and not everyone is cut out to be walking in the shoes that you are in. Wear them proud.  Do what you can and sleep is important.  Be here in the now.  And keep going.  Keep going."

Then I'd probably give you hug.

Until next time,

Teia  

CONFESSIONS of A PREEMIE MOM: Hope is an Action Word.

Credit: philosophy

Hope. 

It's an action word.  

I tend to get contemplative when I am pumping milk.  Why?  Not real sure, but last night I was stuck on hope, deep thoughts triggered by a jar of moisturizer.

It was rather late, Sherlock was over, I was putting labels on bottles of just pumped milk and looking at the stack of mail that was sitting on my desk.  The flyer for Ulta twinkled at me.  Not even two months ago, the arrival of that little flyer would've sent a little flutter into my heart, and I would've skimmed through the pages of sparkling polish and other beauty accoutrements, mentally listing the items that would go onto my wish list and those that would fill a basket of delights on some afternoon that I stole a little time to myself.  It is a regular ritual that brings me pleasure.

As I type that memory into print, part of my mind says, wow, that's amazingly shallow, but another part of my mind says, that's one of the pleasures of being a woman -- enjoy it.  Like most things, I bet that the truth is somewhere in between.  I decided on a couple of new colors from the latest OPI line, to sample a new moisturizer and to see if they have the new Stella balm glosses in a bright berry.

Vanity satisfied, my mind ran back to hope.  

We use it so often.

"I hope the weather makes up its mind."

"I hope you have a good day."

"Hope things get better."

"Hope we get all this covered."

"I hope this line gets moving before I turn 80."

"Hope they have coconut cake in the cafeteria tonight."

And more often than not, it's used in vain, in passing, with varying degrees of value and levels of wonder, as space fillers, rhetorical questions and silence breakers.  

Credit: Oprah.com

But in reality, it's an action word.  

It's the place where desire meets expectancy -- the point where faith is nurtured and believe is seeded.  

Sometimes confused with want or need, hope is different.  It holds life-affirming, dream-inducing promise, an almost innocence --- if not purity of thought -- when we really mean it.  It inspires you to take steps in one direction or another, to lift up your voice and pray, hug a passing stranger, to smile as the morning sun starts a new day or to kneel and cry those silent tears that speak all the words your lips cannot form.

It's a promise to believe. 

Actively. 

A promise to keep going as if what I've hoped for has already happened... and try to keep dancing along until it does. 

Maybe that's not hope at all, but faith instead.

As for me, I think I'll rest in hope and faith a bit more and in the other states a bit less.  

What do you hope for?  Please share your thoughts below.

Confessions of a Preemie Mom: Normal Is Over-rated and Probably Doesn't Exist

CONFESSION:  Don't expect "NORMAL".  It might not exist.

Yesterday was my youngest's one month birthday and in the last two months all of my children have had birthdays; while fairly "normal" occurrence in the scheme of the world is pretty awesome and a milestone marker in my current world.

Normal is a term that lacks value and relevance in my daily life these days... in fact, it's a rapid road directly hurt feelings and unnecessarily frustrating experiences.  

Happy One Month Birthday N! (Credit: Teia Collier)

As I listened to and simultaneously tried to ignore the annoyingly distracting, almost musical beeping of the monitor above his incubator, taking mental snapshots while trying not be entirely nosy as other parents spent precious time with their little ones, a sparkling thought dawned on me -- my normal every-day is not the same as someone else's and though we have and are having common experiences -- mine is unique.

Most likely, the term "normal" is a misnomer.  Instead of focusing on what normal progression should be, focus on being in and living in today.

Credit: Tamar Hela

It helps me to count my blessings.

It lets me be aware of yesterday, engaged in today and excited about tomorrow.

It allows me to reach out to other parents and let other people (and their experiences) in

And it persuades me to take my pleasure in this day.

Z and S in the Dallas Snowmaggedon (credit:Teia Collier)

The striking of normal might be the tool that helps to eliminate those comparisons between experiences, those twinges of jealousy when see another mom holding her newborn baby or annoyance that creeps in when you get an email from Baby Center that congratulates you on entering your 28th week of pregnancy and you delivered weeks ago.  But it also helps me to celebrate the milestones and appreciate the rock star moments of the day like one month birthdays, realizing that "stable" is a positive term, that goodness abounds and the awesomeness of parking spaces that are not cross country from the door.

I am also starting to see that the "normal" world does not revolve around the NICU, nor in real life terms does mine, though it sure feels like it does sometimes.  The roles that I had prior to this stint of NICU stay still exist, this is just one element of my life that has altered and impacted the others.

Life continues to move forward, the world continues to spin, we still dream, we still need, want and desire things, experiences and time, but most of all, there are still adventures to be had.  There is still time to ask what do we choose to do with today?

The view of Dallas from the car asking what will I do with today. (credit: Teia Collier)

For me, that is reassuring, a little daunting and exciting.


How does the elimination of normal strike you?  Does it make sense or are you comfortable with normal?