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My world is right again...

Allie made it home from a weekend trip this afternoon.  Dave and Blake made it in from the baseball tournament.  As each one walked through the door of our home my sweet Ashley giggled, cheered, and celebrated their arrivals. At this moment they all lie sleeping soundly in their beds and I sit here in the dark knowing that its all ok.

I'm my best self when we are all together under this roof.  I feel at peace with my world when the people who make up my world are home.  Nothing feels better to me than being here with them.  Nothing.

Tonight as I visited with Al she was also texting a friend of hers.  We talked about the favorite game they were playing.  She shared  the category was favorite place to go..."What would you say mom?  What do you think my favorite place to go should be?"

"Home, " I answered.

"huh, why home?"

" Because its my favorite place in this whole world to be.  If I could go anywhere or be anywhere at any time in my life my pick would be home.  Its where my favorite people are."

"Yup, I guess your right.  Home is a good answer."

Its my "go to" place.  Always has been.  Since the day I married my best friend, had our babies, was gifted our baby gherkin, and spent too many days next to her in a hospital longing, fighting, and praying for it.  Home is my favorite place to be.  Especially when I can tiptoe into the rooms inside of it and find my very favorite people safely tucked into their beds.

I know we can do this.  Broken central lines and all as long as we are doing it together.

I listened to my big kids each tell my little kid goodnight and I heard the words they shared and the giggles she responded with.  My heart was so blessed, so full, so overwhelmed with all that is right in my world.  I don't remember how to do this life without having them all here together.  I think that's why I became so frightened and so paralyzed the other night.  As I worked to steady my hands and keep my giggly little one still, I could literally see it all slipping away from us.  I felt the devastation of leaving with her once again, and it took me to my knees.  Seriously, this life of ours is held in place by a tiny piece of plastic and its ability to keep functioning?

At least in those tense moments thats all I could think of.  I guess medically it is true...but...realistically its not held in place by that piece of plastic...its held in place by the very hands that created her.  The hands that gave her life.  The hands that placed her tiny life into ours.

  And then...I was able to breathe again...and I've kept breathing for the last two days.

Update

The cath flow worked.  I am able to draw and infuse.  Many hours later, we have flow.  The line is still broken.  It has to be repaired, but we have not lost all function.  I don't know how, but its working.  Barely working, but working.

Even as I fall apart in the face of such difficult circumstances, my mind is flooded with how blessed we are.

The break is far enough down the catheter and away from the chest wall that it can be repaired.  It broke below the area where it becomes a single catheter not allowing the second lumen to be compromised.  Although I am home alone, I know that we are ok.  She is ok.  We do not need to rush to the ER, no ambulance or plane necessary(we did discuss the very real possibility if I could not restore flow without a total split).  The wall of the catheter is secure at this time as long as I am not infusing into it.  I am confident that Dave is equipped to make the repair.  I've seen him do it before.  I am not, but he is.  Blake and Allie were not here to witness the events.  I am so thankful for that!  I believe everything to this point has been done safely and with sterile procedure.  I am not yet worried about her line being infected.  I think she's safe.   The repair is a different story entirely.  We will be VERY blessed if we can come out of it without an infected  central line.

We can't use the lumen until its repaired, but we have another lumen to use.  Praise God for that!  She will safely be connected to her TPN tonight.

Ash is home.  She is happy.  She is unaware of any incident.  I am so blessed that God in what I believe is His mercy in her life and ours has protected her mind from understanding so much of what takes place in her life.  I couldn't bare the thought of her being afraid with every single incident.  He knows what He is doing.  I trust that He does. I don't always understand, but I know I can trust Him.

So tonight my heart beats a little faster and my burden is a little heavier with fear of what will happen, but I'm blessed because of these and so many other things in her life.

It only takes a moment...

...to transform me into a heart pounding, hand shaking, thought racing, mess.  I hate this part of our life.  The part that is dependent on a tiny, white, plastic, catheter that resides inside of her chest wall and hooks into her aorta.  That tiny piece of plastic keeps Ash here on this earth, in our home, breathing, laughing, growing, living.

Its in moments like the one we have just experienced that I start to think just who do I think I am?  What am I doing?  Do I seriously think I can pull this off?  How could He have decided I could be her mom?  Without Him I know I'm not  capable of taking care of such a fragile child?  Someone had to have made a mistake.  I'm trying to stay calm, trying to breathe, trying not to lose focus of what has to be done.  I'm trembling inside, doubting everything I think I know.

My hands are shaking and my heart is racing.  Tears sting the brim of my eyes and I am determined not to start crying because if I do then I'm going to fall apart.  Here we sit a mere 8 days from her 7th birthday and the best celebration I've ever planned...and now...we face losing it all?  Over what?  A stupid, piece of plastic?

Dave traveled to Texas A and M this weekend to watch Blake play, and I stayed behind with Ash.  I wasn't willing to risk anything a week away from her 7th birthday.  I didn't want to be on the road with her, out in the heat, or in a hotel room.  She's been so happy, so well, so amazing for so long, and I wanted to keep her that way for her birthday party.  Silly me...I am not control of any of this...not my life...and not hers.

The main lumen of Ashley's central line decided to break this afternoon.  Right as her TPN finished and needed flushing off to keep from clotting off.  The inside wall of the catheter broke and is forming a bubble each time I attempt to flush.  Resulting in TPN residing in the line.  That means its clotted.  Dave talked me through a few solutions over the phone while I did my best not to panic. He remains calm, level headed, and steady...I on the other hand am losing it.  I wish he were here!   After taping and holding the bubbled section for support I was able to get a small amount of saline into the line, and then inserted some clot buster in hopes of opening it enough to be able to flush enough saline through to keep it from permanently clotting off from the glucose.  I don't know if it will work.  I'm just hopeful.  He will have to splice and repair the line as soon as he gets home whether or not we are able to keep it functional.  I just have to maintain the integrity of the outside wall to keep her safe from infection.  If I can keep it held together without allowing the bubble to burst we may avoid disaster.

 She has two lumens.  We need both of them.  Especially when she's sick for running IV antibiotics through.  If we are forced to we will survive on one.  It just throws us back into the real life challenges of having her life dependent on a plastic catheter.  Anytime it is compromised it becomes really, really scary.

Ash has had this catheter for a really, really long time.  We've been blessed.  It was placed in hopes of getting us through another transplant. It was supposed to be temporary, but we all knew it was our last option.  She recovered so well, and has been so happy since ex-plant, despite the recurrent infections of the line, that transplant has taken a back seat to life.  Living has become the goal.

A life of quality.  A life of happiness.  A life of experiences.  A life of joy.  It all makes the face of transplant pale when compared to this life she has.  Even with the central line.  Its not ideal, but outside the fact that she has no bowel, and is dependent on this catheter for life saving nutrition, its been a good two years.  A great two years.  She is so happy.

So I sit here waiting, shaking, heart pounding, and eyes stinging...hoping for function, for a successful repair, and for a 7th birthday celebration to indeed take place in just 8 days, I realize that it only takes a moment to be thrown back into the very real life situation that our little one's life is very, very different than most.  Its complicated, and fragile, and dependent on this little plastic catheters ability to function.  That is a frightening reality.

She is so unaware of any issue and sits at my feet giggling so loud that I can't help but smile through my tears.  She's the most wonderful person I've ever known.  Choosing to live daily a life filled with joy despite her circumstance.

More Good...

I realized yesterday as I watched my sweet girl play that somewhere along the way in this journey we had finally crossed over.  I don't know at exactly what point it happened.  It actually just snuck up on us.  Without counting it, or paying much attention to it, or even documenting it...it still happened.


I wasn't expecting it to happen.  I was just living each day.  Living each day with Ash.  Making them count.  Memorizing as many moments as I possibly could loving our little girl with all that I possibly could.


There are now more good days in her world than bad.

Let that sink in for a moment.

The realization of that almost paralyzed me in the moment that it came.  More good days than there are bad days.  How BLESSED are we!

In the life of our soon to be 7 year old daughter, the one who wasn't going to make it, was never going to leave a NICU, would never survive transplant, who was left as a shell of her former self after ex-plant, and who came home to live out her final days however short they may be, and is facing another almost impossible   multi organ transplant...is now having more GOOD than bad.


 There is more laughter than there are tears.  


There is more anticipation about tomorrow than dread.


There is more hope than fear.


There is more joy than we ever knew possible.


There is more celebration about her possibilities than grief over her losses. 

There are more days at home than in a hospital.


There are more days "healthy" that not.


When did this happen for her?  for us?


It happened in the very midst of living out the impossible.  While being determined to live a life of quality even if it meant sacrificing a life of quantity.  


Of course there are unimaginable decisions, and obstacles, and surgeries, and transplants, and difficulties that lie ahead...we just choose not to dwell there anymore.  None of that can be changed, but we can live moment by moment and acknowledge the amazing days and moments in between all of those realities.


I guess I'm just blessed beyond description at this time because I witness my baby laughing more than crying.  I didn't know if I'd ever have days like that again.  If she would ever have days like that again.  The memories, the photographs, the scars left from those days two short years ago remind me of all I feared we had lost...forever lost.  Instead though, our Father restored, and gave to us all a joyful, beautiful, blessed, happy, little girl.  She is so much more than we were told she could be.  She is the most amazing child.  She lives in joy.  JOY!  Like you've never experienced.  It is indescribable.  She finds happiness and laughter and joy in the midst of the smallest things in this life.  

Yesterday we watched her play in the water, her absolute FAVORITE thing in this world is rain.  She calls sprinklers "rain" and so in her world the splash park was a dream come true.  The best day of her life!  Even though there were questions, and stares, and curious little ones all around her, she ENJOYED the "rain" more than any child who ran and jumped and played and splashed.  We were so mesmerized by her joy that the obvious facts that stare us in the face on a daily basis, like her chair, her pumps, her lines, her drain bag...they all disappeared before us.  She couldn't speak to her new "friends" who surrounded her, but the smile on her face and the laughter that spilled out was like a magnet to all around her.  Dave and I choked back tears as we watched her play.  Uninhibited by her boundries or her differences...she had another GOOD day!  I wish you all could have seen her!  It was so amazing to see.  We were so blessed!


More good days than bad.  What a gift!

Atlanta

Can you find the ball? Grand slam at OU Invitational July 2012

Blake and I are on the road again this week.  We are playing in a National tournament in Atlanta, Georgia!  Neither of us have ever been to Georgia so its been a really fun trip so far.  Two of my very favorite things in this world...Blake and baseball!

I'm missing my girls and wish we could all be on this trip together, but Dave needed to be in the office and Allie has volleyball so he and the girls stayed behind.  Although I'm missing them all so much, I feel SO blessed to be given this time with Blake.  We laugh so much and are making memories I'll cherish forever.  Being on the road with him is definitely entertaining.  We talk about some crazy things and I am allowed to peek into the windows of his heart on the long drives from home to whatever city he is playing in next.  I wouldn't trade this time with him for anything.

Last night we watched the Atlanta Braves play the New York Mets.  One thing Blake has always wanted to do is see Chipper Jones play before he retired.  Check that one of the list!  We bought tickets in the nose bleed section and had a great time with friends!  Chipper hit a home run last night and guess what?  Blake hit a home run yesterday too!  The Braves won and even though our Patriot team suffered a loss we got to do what we love to do...play the game.  Every plate appearance, every at bat, every inning Blake is working his way closer to the dream.

I'm not sure what plans the Lord has for my son, but I see Him shaping his character each and every week.  He is learning to be a good man and I'm so proud of him.  Believe it or not this game he plays every week plays a huge role in that process.  His face lights up when he is on the field, especially when he is behind the plate, and he is his best self when doing what he loves.  This summer is about so much more than baseball.  His heart is so blessed.  He is so grateful.  So focused.  So happy. So thankful we have the opportunity to do this.  He tells us every week how much he appreciates being allowed to travel and play.    I am one blessed mom to be allowed to witness his true heart again and again.

Blake is dreaming of traveling to Italy next summer to play baseball,  Its completely out of our budget, but he knows that if its inside of God's will for his life that it will happen.  He has to work and save and find a job that will still allow him to make practices and games all year, but I don't think its impossible.  It may happen for him.

We have 6 more games here in Atlanta before we head back to the great state of Texas.  I expect we will be heading home Wednesday or Thursday.  Then we will be working toward completion of Ash's birthday props.  Her party is going to be so sweet.   I'm really excited about our little one turning 7 years old.  She is happy and delightful.  Full of joy and enough of an ornery spirit to keep life fun.  We laugh with her every single day.  I'm so grateful for her life.

Just thought I would update the blog.  I know the posts are few this summer, but traveling has me wiped out!
Hope your all well and enjoying your summer.  Take care.  Trish

Sweetest Moment

The sweetest moment as of late with my Ashley Kate came Saturday evening as she lay on the couch, long legs stretched across my lap, with her feet in my hands.

 For as long as I can remember when my sweet Ash is feeling tired, or not so well she has wanted her feet rubbed.  I've held those feet in my hands when they were the tiniest things you had ever seen.  I've rubbed those feet for hours on end as I stood by her hospital bed.  I've had friends come to my rescue and stand rubbing those tiny feet through the night so I could have an hour or two to sit down and rest.  I've watched those precious feet grow from chubby to long and slender.  I've rubbed them through all the ups and downs. As I sat rubbing those feet a few nights ago I smiled as the memories of my girl and her obsession with rubbing her feet flooded my mind.  So many memories.

My sweet girl would sign "lotion please" "more lotion please" each and every time I would think I was winding down.  All I could do was giggle at her need for more and more and more.  She would giggle back at me each time I would start again.

I love her. Love all the little things I know about her that few others do.  Like her desire to have those little feet rubbed.  Over and over and over again.  Sweet times in our house.

LouAnn, if you see this post just wanted you to know I thought of you as I  rubbed and rubbed and rubbed the other night.  Love you my dear friend, all these years later,  for loving my baby enough to hold her tiny feet in your hands as I sat and rested.  Miss you.

Determined

This month holds some very difficult memories for me.  I fight the urge daily to fall apart as something continues to pull me back to the place we sat and wondered how we would ever make it home it with Ashley Kate.

I've tried for the last 7 years to find the beautiful and the blessed among the ugliest moments in this life.  Its a daily decision.  Sometimes its a moment by moment decision.  This month is proving to be a moment by moment struggle to live by that standard.  Many days Dave has walked in to find me fighting tears, battling the memory of the worst nightmare I've ever lived, and struggling to stay on top.  Its not something I've conquered although we are 2 years out from it.

It only takes a glance across the room at my smiley girl to settle me back into the place of  gratitude and beauty I desire to stay in.  She is breathtaking at almost 7 years old.  Long brown hair, twinkly eyes, mischievous grin.  She has a giggle that ripples through the rooms of our home and the sound of it puts a smile across every face here.  I seriously never imagined I could love someone so very much.

As the days pass, and the years since ex-plant are now almost enough to add together, I am in awe of the life she has been given since that day.  That day where I trembled, and vomited, and cried so hard I thought I might never stop, as I sat in the all too familiar waiting area at UNMC.  There was no peace to be found.  I had no hope.  No idea how we would ever survive another day.  The conversations all around us as the team piled in day after day for rounds left me hopeless, shattered, and afraid.  The fear that enveloped me at the mere thought of her not coming back home to us was paralyzing.  I only wanted her to be 5.  It was my hope.  My prayer.  My focus.  We had to make it to 5 and then we would set another goal to make it too.

5 came and went in the halls of that hospital.  We pushed our sweet baby down the hall in a huge hospital bed so that our friends and family who had traveled all those hours could catch a glimpse of our beauty.  We celebrated that day.  Shattered on the inside, but choosing to see the beautiful in the midst of the ugly. Determined to remember she had made it to that 5th birthday and never wanting to have to live with regrets of what we should have done.

Now I sit each day fighting back the tears as I prepare for her 7th celebration.  2 more than I would have ever imagined.  I watch my little girl struggle as she is unable to place the damaged heel of her right foot flat to the floor as I paint the words "Ashley's Acres" across a piece of fabric.  The tears run down my cheeks knowing that it is the memory of the injury and the memory of the pain that has added to her list of handicap. I make up my mind to battle the memories as each arise inside of me and not allow them to do to me what they are doing to her.  I can not afford to suffer anymore handicaps as I parent her.  I must not allow them to paralyze me, trap me inside of the fear, or keep me from moving forward.  How I wish I could change them for her, but it was her tiny body that suffered the full brunt of them.  Her tiny body that was left damaged.  How will she ever learn to walk without the use of that heel?  I wonder as I watch her protect each day.  Perhaps she never will... I so hope that she can overcome though.

There is beauty to be found in the midst of the ugliness.  It lies underneath it, in the middle of it, or even behind it.  Its a conscious decision to seek it out.  To be grateful for it.  All of it.  I'm determined to find it.  Even on the hardest of days when the memories threaten to engulf me and choke me.

We built a barn for her party this year.  As I paint the slats of this old barn I watch the red color cover up the old, worn wood, I imagine the celebrations that are yet to come in her life and I see them covering up the old, worn, memories that hurt so much.  My goal at this time is to make through the day without the sting of pain, without the haunting of those days, and without a moment wasted on the ugly.  I'd much rather surround my heart and mind in the beauty, in the beauty of a life being lived to its fullest potential.  All 7 years of it!

Not by Accident

Blake and I pulled into our drive this afternoon.  Safe again.  Home.  Again.

Years ago when our sweet Ashley Kate was so tiny that she fit in the palms of our hands, and she lay in an incubator hours down the highway from our home, we sat across the desk from our pastor in his office.  Dave and I had  taken our burdened hearts to him.  Our fearful, frightened, unsure, broken and burdened hearts to him.  We shared the story of our tiny girl, so fragile, so new, so promised, so loved, with the only one we knew to trust in those days.

As our tale spilled out before him I remember the look in his eyes as we explained the many hours I spent driving to and fro between our home and the only home our tiny girl had ever known...that NICU...that incubator... that hospital.  At the end of our story and the unloading of our hearts he began to pray in a way that I had never known before.  In a way that I have never forgotten since.  His prayer changed me that day. His words to our Father changed the way I pray to this very day.

He spoke such genuine words as he prayed and somewhere inside of that prayer on that day I remember these words, "Father...we KNOW it is NOT by accident that Trish arrives safely to hold sweet Ashley and we KNOW it is NOT by accident that Trish arrives back home to care for the family day after day and week after week.  It is by YOUR hand that she is protected on those highways and by YOUR hands that she is safely delivered."

I can't tell you why that part of his prayer for our family that day meant so very much to me.  So very much that it changed my life...forever.  Perhaps it was because during those days all I did was drive those highways.  Perhaps it was because I for the very first time realized it was NOT BY ACCIDENT that I was being safely delivered back and forth between my three children.

There is not a drive that I take, a trip I set out on, or an errand that I run that I do not remember that it is NOT BY ACCIDENT that I am kept safe on those roads.  So as I pulled into Longview this afternoon with my 16 year old Blake asleep in the seats behind me that I smiled as I whispered my gratitude and my realization that He had once again delivered me home.  Safely.  Not by Accident but by His very hands.

In the years since that day our pastor has gone Home to the Father.  I am often reminded of him and how he loved our sweet Ashley Kate as I turn the key in the ignition.  I'm grateful for his words that day and the prayer he prayed over us.  I'm grateful for the lesson he taught me and how his heart felt prayers for a young set of parents as they set out on the beginning of what has proven to be a very, very long road changed the way I look at my life.

So again tonight as I lay down my head I will acknowledge that is is NOT by ACCIDENT that I am home.