NICU “Survival” Kits

One of things that I received from the Common Bonds Parent Support Group was a NICU “Survival” Kit. I appreciated it very much. It was a bag full of little treats with cute little sayings. I loved the poem with the baby washcloth. Receiving the bag was a little ray of sunshine through the NICU Fog.

I just wanted to share in case anyone happen across my blog looking for ideas to brighten the day of another NICU family. These items are placed in cellophane treat bags. We don’t always have all the items in the bags, but if nothing else this should get some creative ideas going! If anyone else has any cute ideas that you would add to the bag, I would love to hear about them! Please leave a comment if you do.

Hershey Kiss Give yourself a kiss now and then
Almond Joys Find “joy” in the little things
Tootsie Rolls Try to roll with the ups and downs of the nicu
Nuts Try not to go “nuts” while in the NICU
Skittles RX – Take two every 4 hours as needed to relax (Skittles in small RX bottle)
Life Savers Time away from the NICU can be a lifesaver
Extra gum Take EXTRA time for yourself
Fast Break  bars Take a break from the stress of the NICU…It will do wonders for you
Baby Washcloth Poem “A Hanky to Hold Tight”
Twix Bar Twix you and me, your baby is Adorable!
Take 5 Bar TAKE 5 minutes each day to glory in the beauty of your tiny baby
A can of soda You “can” do hard things

Living in the Shaky Place

As a Parent Support Volunteer, one of the things that I try very hard to do is let other NICU families know about PTSD. While in the NICU, we are all waiting very impatiently for the day we can take our babies home, but unfortunately, that doesn’t mean our journey is over. After all the business of the NICU is over and you are finally at home with your baby… and there are no more current huge medical crisis going on… you come to a place where you start to process the whole traumatic birth experience and the traumatic NICU stay. This is one of the best articles I have come across spreaking of PTSD and the NICU. It is worth taking the time to read.

Living in the Shaky Place

http://www.theatlantic.com/health/archive/2012/02/living-in-the-shaky-place/252630/

FEB 6 2012, 12:09 PM ET  

In this essay, which first appeared on Jessica Valenti’s personal blog, the editor and writer discusses the post-traumatic response she had to her daughter’s premature birth last year.

Valenti-Post.jpg

“Compassionate action starts with seeing yourself when you start to make yourself right and when you start to make yourself wrong. At that point you could just contemplate the fact that there is a larger alternative to either of those, a more tender, shaky kind of place where you could live. This place, if you can touch it, will help you train yourself throughout your life to open further to whatever you feel, to open further rather than shut down more.” —Pema Chödrön

It started several weeks after my daughter’s birth with an itch on my c-section scar. It was an entirely normal twinge, something that happens when nerve endings are healing. But instead of noticing the itch, maybe scratching it and moving on, my knees gave out and I hit the ground.

Suddenly I was on the operating table again — multiple sets of hands in me, shifting and tugging at unknown organs. I’m not sure how long I stayed on my living room floor, but when I became aware that I wasn’t in the hospital, my hands were shaking and I was covered in sweat.

It was the first of many flashbacks I would have over the next year or so — a post-traumatic response to my daughter’s premature birth, NICU stay, and the illness I developed during pregnancy that I thought would kill me. (It’s common for parents of babies in the NICU to develop PTSD, as it is for women who have traumatic birth experiences.)

The more amorphous the symptom, the more frightening I found it. The worst, though, was the detachment I felt toward the people closest to me.

The funny thing about PTSD is that it’s sneaky. The eight weeks that Layla was in the hospital — while the emergency was still in full force — I was fine. Productive, even. I wrote articles, maintained a blog for family and friends about Layla’s progress, and went to the NICU every day to be with her. Sure, I had daily crying spells and suffered from an understandable amount of sadness and fear that comes with having a child in the hospital — but I was functioning. It was only after the crisis was over and Layla was home that everything changed. Just when I thought the nightmare of the hospital was over, a new one took residence in my home and in my head.

What happened most often was that out of nowhere I’d think that my daughter was dead. I’d be out on a walk or in another room while Layla was sleeping and I would just know that she was gone. Or that someone had killed my family while I was out. Not a fleeting “oh my God, what if” feeling; I believed these things with absolute certainty. You could not have ever convinced me that anything else was true. It was only once I saw Layla and my family that I understood they were all right.

I stopped sleeping. Sometimes thanks to nightmares, sometimes just because the rotation of horrible thoughts made it impossible to shut my eyes for more than a few minutes at a time. When most people have a bad thought they can push it out of their mind; when you have PTSD, you can lose that ability. Imagine the worst, most violent thoughts you’ve ever had about life, your family, yourself — the ones that are so awful that they pass through your mind for less than a second before you hurriedly force them out. Now imagine these thoughts are absolutely immovable; you literally cannot stop thinking them.

 

I started having small blackouts. The first one happened while driving home from a lunch meeting. I suddenly found myself miles past my house, an hour later, still driving. Socializing was impossible. I was afraid to do anything, terrified of having a panic attack or flashback while I was out. I used to be quite the social butterfly (OK, party girl), but now people made me anxious. I felt as if I was faking it with everyone I interacted with. It’s easy to make small talk when things are generally OK — even if you’re having a bad day you can mostly smile through it. But when you’re not sure if your sense of reality is going to change at any moment, it’s hard to pretend.

The smaller things — like memory lapses and getting easily confused — were worse than the obvious post-traumatic symptoms. I forgot conversations that I had minutes earlier, or would ask the same question several times in a short period. These minor mental shifts were more difficult because they weren’t easily attributable to trauma: I knew logically that the flashbacks would stop, but I was afraid the confusion never would.

The more amorphous the symptom, the more frightening I found it. The worst, though, was the detachment I felt toward the people closest to me. When I wasn’t having a symptom of some sort, I felt numb — it wasn’t just that I had a hard time feeling love and happiness, I also couldn’t feel anger or sadness. I was just there.

I found myself wishing that I were still covered in bruises the way I was when I first left the hospital (from the multiple injections, IVs, etc. that had to be put in pretty roughly because of my edema). When I looked hurt, at least, it was obvious that I was hurt. But without physical signs of a trauma I just looked like me, even though I felt more damaged than ever.

There’s no real cure for PTSD, though there are various kinds of treatment. The only one that worked for me was time.

It’s been about a year and a half since Layla’s birth; my PTSD, while still there, has gotten manageable. I have nightmares and don’t sleep through the night very often, but the flashbacks and panic attacks have mostly stopped. I also get the occasional intrusive awful thought, but unlike before when I fully believed the horror was real, now I have a parallel line of thinking that reminds me of the truth.

My relationships remain strained — I’ve neglected friendships, those close to me have struggled with how best to help, and some simply can’t understand why I can’t get over it already. But I’ve also met people with similar problems, people who understand and have made the numbing solitude of not trusting your own mind a little less lonely. I’m grateful for that.

I know now that the core of my trauma was the realization that life is out of my control. Life is unpredictable, scary, and sometimes tragic. Believing anything else is a false comfort. But I actually find solace in letting go. It lets me see the world more clearly, value my relationships more deeply and love the people around me more fully. In a way, experiencing my mind responding to trauma — though scary and core shaking — was freeing.

When I was a kid, maybe nine or 10 years old, my father pulled me aside during a family vacation to talk about swimming safety before I got in the ocean. He told me not to ever fight a strong current. You get too tired swimming against it and that’s how people drown — better to swim with the current toward shore, he said, no matter how far down the beach you end up from where you started.

I’m still swimming — but I’m not drowning. And though I know once I hit shore I’ll be pretty far away from where I’m started, I feel OK  about that. I’m not the same person I was before and I don’t think, if given a choice, I would want to be.

A Preemie Irish Poem

A Preemie Irish Poem – reposted from Irish Premature Babies

It’s the little things that make life worth living,
It’s the little things that help us make it through.
I never knew how true those words were,
Until I first set my eyes on you.

… I feared because it was too early;
I cried because it was too soon.
Yet I underestimated
The strength in one as small as you.

You were born a fighter, a warrior;
You would not quit nor move on.
You strove, you fought, you tried,
Until your battle was won.

When hope might have faded,
When the trial seemed too great,
A tiny child, despite the odds,
Fought what was thought fate.

And a little baby triumphed,
A baby thought too small to live,
A baby knew that life
Is the most precious thing to give

Fight for Preemies

Why we fight

-We choose to fight because they fight every day and don’t have that choice.
-We fight because every baby deserves at least 39 weeks.
-We fight because all babies are entitled to a healthy start.
-We fight because no one should have to start parenthood drenched in fear, wonder, and terror.
-We fight because no parent should have to question or make the decision on whether support should be held or stopped.
-We fight because premature babies face life threatening conditions that NO baby should have to face. They fight every day…just to breathe.
-We fight because we believe in miracles, and the power of coming together to spread awareness and raise money to fund research and vital programs that will make a difference.
-We want to give hope to every baby and every family.
-We fight because they can’t.
-We fight because babies shouldn’t have to.

How ‘Fight For Preemies’ Affects You

Join us as we walk across the globe…online! In the fight against premature birth!

Do you want to walk for the March of Dimes this year but can’t? Now, you
can join us in a Cyber Walk! Honor your baby by sharing this with family,
friends, neighbors, and help us raise money for further research. 100% of the
proceeds will go directly to the March of Dimes!

Why we walk
To raise money and awareness for the March of Dimes in honor of the million
babies born too soon this year and the 12 million more struggling to survive.

In the United States alone, more than half a million babies a year are born
prematurely. The rate of premature birth has increased by 38 percent over the
last 30 years. But still many don’t know much when it comes to preemies, their
struggles, and their triumphs.
1 in 8 babies are born too soon and some too small to survive. That’s
12.8% of all babies born in the United States and prematurity is the #1 cause of
death and disability of infants.

Please visit http://fightforpreemies.org/ to see how you can help. The above is taken directly from their site.

A Preemie Mom’s Oath

I have sat in the NICU and waited.
I have cried and prayed.
I have endured.

Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.

I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.

I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.

Whether I parent a preemie with physical challleges or medical issues, I will not be careless with my love.

I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.

I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell that many never face, yet given time, I stood tall.

I have prevailed.
I have succeeded.
I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.

I have learned to appreciate life.

Yes, I will be a wonderful mother.

Author Unknown

My two preemies

The Loneliest Walk

Another NICU Parent Support Volunteer shared this song with me. Thank you Christa for sharing this song. I hope that it may give comfort and encouragment to other NICU moms and they will know they are not alone.

The Loneliest Walk By David Osmond

“She pushes ‘L’ on that old elevator door
Her heart is broken, arms are bare
The doors are closing and she’s staring at the floor
There’s still a piece of her up there

It seems like yesterday she saw him on the screen
Painted a room and picked out names
But now she has to leave him under big machines
To keep alive his tiny frame
She’s on the way to her car but it’s never felt this far

With each step she takes there’s another to follow
And one more ache, one more tear to swallow
She’s gotta keep moving,
Forget about the bruising inside
Through the loneliest walk of her life

He pushes up his glasses, staring at her name
One last time before he leaves
He saw this coming but to see it now, engraved
It’s still so hard to believe

It seems like yesterday they kissed and made their vows
Her favorite flowers in her hair
He’s staying later than they normally allow
Clutching those flowers in a prayer
And on the way to their front door, no hand to hold there anymore

With each step he takes there’s another to follow
And one more ache, one more tear to swallow
He’s gotta keep moving,
Forget about the bruising inside
Through the loneliest walk of his life

He pushes up the board they’ve tied onto his shoulders
He bears, with dignity, disgrace
He hears the jeering and the wind is getting colder
Tastes the blood upon his face

His body bruised an back still open from the scourges
The consequence of wicked men
He knows no man on earth has ever deserved this
But still He bears it all for them
And He keeps moving up the hill to do His Father’s will

With each step He takes there’s another to follow
And one more ache, one more tear to swallow
We all stand by and watch as the price is paid
Through the loneliest walk of His life
So we don’t feel alone in the night
We can have His hand holding the light
Through the loneliest walk of our lives.

Keep pushing through this lonely walk you’re going through
‘Cause someone’s walked this way before

A hanky to hold tight

I wrote this the night before I left the hospital. It made me cry my eyes out and I did use the hanky and left it with Ryan at night. Although going back and reading it today, I think it was probably a Parent Support Volunteer that gave it me and in my fogginess assumed it was nurse.

A NICU Poem

by Sharon Williams Grover on Friday, April 2, 2010 at 8:52pm ·

As tomorrow is my last day in the hospital, it is becoming a very emotional time for me. The care that both Ryan and I have recieved here has been truly outstanding. I feel it in my very soul that God did lead the way for me to give birth here which gave Ryan the best opportunity he could have been given. It’s very heartbreaking to leave the hospital without your baby.

A few days ago, a NICU Nurse gave me a NICU Parent Survival Kit. It has candy in it with encouraging reminders and thoughts to help you deal with NICU stay. In the package there was also this poem and it really touch my heart. It was wrapped in a little blue hanky.

It goes:

It’s hard to come into this life
And not have Mommy’s touch.
I know the doctors mean to help
But I miss her so much
We had many months together
When I was tucked inside.
Now we are lonely for each other
and we both have cried and cried.
But someone gave my mommy
a hanky to hold tight.
She sleeps and holds it close to her
It’s filled with love each night.
When mommy comes to see me
She puts it by my skin
It makes me feel so happy ’cause I feel my mom again
I love these little hankies
They work just like a charm
And I’ll cuddle, smell, and hold them tight
Till I’m back in mommy’s arms