brain bleeds, care packages, cerebral palsy, child loss, Child Loss Grief, endurance, family, hope, losing a child, picu, VP shunt

PICU Pick-Me-Up

As anniversaries and birthdays tick by,  I will never stop believing that those beautiful, inspiring, powerful 4 and a half months were meant for so much more; that such a short life was meant to be a catalyst for something exceptional.

So here I stand in the heat of another heavy July searching for ways I can use my little girl’s story to encourage kindness and inspire hope.  Well guess what, this one is not just on me… I’m laying this all out there because each one of you reading this has the power to make a terrible day a little bit better, to bring a flicker of hope to a hurting heart, and to keep on shouting that kindness matters.

One of the most trying things you can go through as a parent is having a critically ill or injured child.  Your world stops, and all your focus goes into every detail of the fight for more time with your little one.  I remember it uncomfortably clearly, but because of that, I can see a need that’s easy to meet.

On the 5th anniversary of standing in a crowded PICU room, watching my whole future change, I took a solid breath, and pressed the familiar button in a quiet elevator to be whisked to the 3rd floor.  Stepping off was a shock to every part of me as the colors and smells and sights all came screaming back.  I was on a mission though, for my brave daughter who fought on the other side of those doors, I could help bring a breath of grace to another parent shouldering the weight of the world.

My kids had helped me gather things throughout the weeks that we set aside for this very occasion.  It was easy to remember being a parent pacing across scuffed tiles between a stiff vinyl chair and a bed that contained a piece of your very being.  A parent who when asked, couldn’t actually remember the last time they had eaten an actual meal, a parent that spoke toward the ground so as not to exhale too deeply the breath of stale coffee that had sustained the 72 hours of numb awakeness  preceeding the current sunrise.  I could clearly remember being the parent that in each hurried bathroom break had wadded up wet, scratchy brown paper towels drizzled with disinfectant smelling hand soap and had desperately scrubbed at salt stained cheeks and sweat soaked shirt seams in hopes of concealing the fact that they dare not leave their child’s room long enough to run home for a shower.  I shook my head at remembering the emotionless nurse that had told me they weren’t allowed to spare me a Tylenol for my pounding head, but that I was welcome to check myself into the ER downstairs and have some prescribed by a doctor.  I acutely recalled the desperation coupled with simply surviving without having time to think about your own needs.  Well here is where WE can make a difference.

The kids and I put together care packages meant for the parents of each of the children in the PICU.  Took time to think through all the things I remember needing or wishing for during our long hours there, and tried to put together a smattering of things that would actually be used and appreciated.  I’ll share with you some of the things I came up with, and I hope some of you will run with it from there.  You can do as much or as little as you want.  It could even be just one good care package; I know that you will be making a difference in someone’s life during one of their hardest days.

If you decide to go spread some “Ellie Love” on your local PICU, I would so love to hear about it! You can reach me in the comment section, or by my email displayed in the sidebar.  Remember that whole “ripples in the pond” analogy?  This is one of those opportunities!  Get out there and spread some kindness and encouragement, make those small but meaningful moments spread joy in a way that’s contagious; that shouts the victory of the short but mighty lives like Ellianna Grace.

 

I grabbed an “adult” coloring book for some mindless distraction.  Something to keep you occupied that doesn’t require much thought.  Crayons break, colored pencils need sharpening, so I tried to play it safe with markers.  BONUS was coming across little LED clip on book lights. No more straining your eyes trying to use the dull glow of your phone because you don’t want to wake your sleeping kiddo.

 

Tissue that is not made from recycled sandpaper.  Or whatever it is that the hospitals use.  I realize they probably get a discount, but after the 37th time of scrubbing at your teary eyes and runny nose with those things, people start asking you how you got rug burn.  And seriously, look at th sweet message on this package of Kleenex.  They get it.

 

It’s safe to say a good majority of the meals a PICU parent has consumed were rattled from a vending machine with various pocket change, chased by some carbonated mess of sludge which is going to give them the mother of all sugar crashes later.  Its hard to be portable AND nutritious when doing this, but do your best to think outside the box of cookies, pop tarts, and potato chips.  Peanut butter and a spoon perhaps?  We love these fig bars because you get a decent serving of fruit, and they tend to fill you up for a good stretch of time.  Also think what you can do other than soda… something they can’t get from the hallway vending nook.  Again, not going to be the healthiest choices out there, but it is a good change to have something refreshing to snack on. The Werther’s?  Well those are just all out comforting, and perfect for keeping your mouth moist and your jaw doing something besides clenching.

 

GOOD gum.  Many of these items I was able to get at my dollar store, but a few things I specifically hit up the grocery instead, because quality mattered.  Imagine your breath already reeks from days blending into nights blending into days of eating whatever you can wherever you can, and usually washing it down with a steady flow of whatever coffee is most readily available.  Well then you’re talking to doctors and techs and asking questions of the nurses, and let’s just not have to worry about whether or not they can smell that you haven’t brushed in 3 days.  Splurge for a gum with a powerful flavor that’s going to l a s t.  I love the 5 brand flavors.  Especially their mints are super strong and not only wake you up and freshen your breath, but you’re more likely to spit it out because you’re tired of chewing rather than the flavor having worn out.  Again with the eating and the coffee comes along these handy little disposable mini toothbrushes, pre-loaded with toothpaste.  Come on.  Those have to have been invented with the hospital parent in mind.  CHAPSTICK!  Basically my security blanket, I think most women and some men would agree it’s always good to have some within arms length.  Excedrin tension headache is what I picked, but any similar product that’s going to fight a headache or an ache or pain could be a daysaver for one of these parents.  As I mentioned before, the hospital is too legally bound to slip you a few Tylenol, and most parents are probably just going to suck it up and fight through the rest of the day trying not to think about their throbbing head or aching muscles from standing vigil for 11 hours.

 

 

Hygeine.  Well, let’s take a poll about how many parents are stepping away from a PICU bedside to indulge in a hot shower.  That’s going to be basically… none of them.  Having a few things available that allows a parent to take a quick bathroom break and come back feeling a little fresher is  a valuable investment.  I grabbed packs of disposable body cloths (basically thick, better smelling baby wipes that you can essentially take a sponge bath with), hair ties or clips… because any woman like me is never going to be able to find one when she actually needs it, and dry shampoo.  That’s one of those inventions I would like to shake someone’s hand about.  It can go for guys or for girls, and when you’re skipping out on your shower for a few days, it’s really refreshing to be able to get your hair looking and smelling cleaner without much effort.
A deck of cards…. realizing no one may be in the frame of mind to be concentrating on a game, but they can just as easily be a stress relief used to shuffle and shift through idle hands.  ALCOHOL FREE HAND SANITIZER.  We have all noticed that around pretty much every corner in the hospitals is a handy dandy machine quick to eject a foamy mess that will kill most every germ, as well as the texture of your hands.  For a parent that has been in the hospital for several days or longer, that stuff starts getting really harsh on your skin.  If you can find an organic, non-alcohol hand sanitizer, get that in your care package pronto.  Of course I pitched in the brand I stand behind, which is Young Living’s Thieves anti-bac.  It smells amazing but not overpowering, and leaves my hands feeling smooth and refreshed in contrast to the goop so readily available around the hospital.
I packed each care package into a gift bag with a hand written note, not sharing the details of my journey, but letting them know I have stood in their shoes and hope in some small way these packages can make a few things simpler while they are fighting a bigger fight.  So get out there, find a PICU or a NICU near you and reach out.  It may seem trivial, but standing on those broken grounds, it’s the little things that fix the big picture.
In honor of my Ellie Grace, I will never stop saying your name, sharing your story, and spreading the love that you so easily coaxed out of everyone who met you.
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child loss, faith, hope, VP shunt

July 14

“How lucky I am to have something that makes saying goodbye so hard.” ~Winnie the Pooh

My precious, beautiful Ellianna Grace,

This day has been written in the scars on our hearts.  The fourteenth of July will always remind me that it was the last day I got to smooch your scrumptious cheeks.  I can’t help but remember the deafening fear that rose when I saw you slipping away.  That last kiss, last breath, last holding you in my arms.  I still remember the feelings of helplessness, and whispering screaming prayers that you would get to stay.  This day, this beautiful summer day will forever inflame the lasting scars that were torn in my tender heart.  But tucked within what’s left, the fourteenth of July is also an Ebeneezer, reminding me of the graciousness of our God in welcoming you into His arms; His healing of your every pain and struggle.  I can celebrate in knowing that you are whole, and well, and safe, and that after all my waiting is done I will get to see you again.  My story is not a story of loss, of heartache, or pain.  It is one of absolute Grace.  Pure blessings.  Answered prayers.
I love you indefinitely, my little girl.  Sometimes I touch the things you used to touch, looking for echoes of your fingers (Iain Thomas).  I long to breathe the essence of you, trace your delicate features, and tie ribbons in your hair.  Someday, my sweet Ells.
I will revel in every joyful memory I have of your precious life, and will live with the purpose you inspired me towards.  Someday I will hold my treasure again, and I am so excited to hear your giggle as I pepper your face with kisses.  The veil is thin, my sweet.
You are adored, cherished, held dear.  Your little, magnificent life has left a beautiful impression on so many hearts.
Until Forever, 
Mommy xoxo

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brain bleeds, faith, VP shunt

Catching Up

LIFE got in the way of blogging. So here is a little update on life…
Little Ellianna is 2 and a half months old now. She tipped the scales at 6 pounds today!

The past 2 months have been a roller coaster of ups and downs. We finally got Ellie home after battling brain bleeds, digestive problems, and trouble feeding. She had 3 blood transfusions while in the hospital and surgery to place a shunt to drain the excess fluid from her brain. She fought hard and even gave a little attitude. 2 days after celebrating Easter, after 8 weeks in the NICU, we tucked her tiny little self into a car seat for the first time and drove her home to begin the rest of her life.

We all kept pinching ourselves for the first few days, basking in the surrealness of having her home. The older 3 are mesmerized by her. She sleeps a lot. Moments of quiet are punctuated by the shrill squeal of her monitor alerting us that she is not breathing or her heart rate is too low. She still will not nurse much, but she takes a bottle like a champ. Most of all, she is perfect. Beautiful, soft, delicate. A CAPTIVATING reminder of what an awesome Creator we serve.
This past week she had surgery again. She needs to have a permanent VP shunt put in to help her brain function. Unfortunately, there is still too much blood in her brain to do this. They went in on Wednesday to provide a temporary fix for now. We are expecting in 3 or 4 weeks she will need surgery again, hopefully to install the permanent shunt.
The first surgery was terrifying. She was so tiny, so fragile. They had to resuscitate her…then she was not waking up… a whole nother day on the ventilator…scared she might never wake up. She held on though. The second surgery was smoother. No complications and she woke right up. Being more alert this time meant she had more pain, but her cries were strangely comforting.
Today I was thinking… this journey has been hard… I have been scared and at times angry. God has provided for us all along the way. He has kept her safe and allowed us to keep His precious gift. I know that is not the case for every parent. Mommies and Daddies have had to kiss their sweet babies goodbye. They have gone home with empty arms and aching hearts. It humbles me to realize how GRACIOUS He has been through all of this. I want to savor each precious moment with Ellianna.

I was reading through my friend Linda’s blog today; she has been posting about Ellianna and asking her friends to pray. There is note after note of people….families, parents, children…on their knees for our sweet baby girl. People we have never met or even spoken to. People whose names we do not even know. The tears flowed. I am so humbled and touched and awed at what God is doing for us. Makes it seem silly that my faith is so small.
Please leave me a comment; it lets me know you’re listening!