Tuesday, November 30, 2010

Randomness

This is not ok with me.  It is what I saw first thing this morning when I walked out the doors of ACH.  The hospital was being decorated for Christmas and it struck me so strongly it took my breath away. Whether Pax and I are here or not, there will be others that will be spending the holiday in the hospital and it just isn't fair.  These babies, these innocent children do not deserve this and yet it's real life.  If Paxton were here then so too would I be.  You just do it when it's your baby, but that's not to say seeing this as the sun was rising over the horizon first thing this morning didn't sting like hell.  It is after all, a harsh reality for many.


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So last nights post was hard.  I wasn't sure if I should post it at all, but I pride myself on this blog being "real".  I don't paint pretty pictures if it's not pretty. I want to remember this journey in all of it's glory. The good, the bad, the ugly. So that I can look back and read the posts knowing and remembering exactly how I was feeling at that moment. Then when I do that I can bow my head and say to myself: "You did it. When you thought you couldn't, you just did." 

I often go back over last years posts. They were real and oh' so raw,  but when I read them now I am glad I was raw because this is about the victories and you don't get the victories without the struggle and the fight.  

So I posted the post knowing in the end I was being true to myself and to HLHS because it isn't always easy.  Today, I opened my email to find the most amazing letter from another heart family to me.  The words he enclosed in that email are words I will return to when I am down.  When I feel alone. When I feel that no one "gets it".  

I realized today that while I started this blog long ago without ever caring whether anyone read it or not, I am now glad that some people do, because it brings people together, people from far across the country enduring the same struggles.  Pax has a way of doing that. These heart babies have a way of doing that. 
Thank you to my new California family for taking the time to reach out across the miles, you'll never know how you lifted me up as I sit here in the hospital with my boy.


I mean really, look at all he's been through and look at how he handles it.  If only I was this strong.  He's my hero, always will be.

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We are still admitted at least until tomorrow. They have some more tests to run and he's in a halter monitor for 24 hours to monitor his rhythm.  I've decided I'll post the outcome once we have one. Right now there's a lot up in the air and I could type a lot, but what matters is the end result.  Hopefully I will be able to post very soon that we are home once again preparing for the holidays.  We got one really awesome day in there on our two day jaunt home where we were able to pick out and decorate our Christmas tree


So for now, I am just going to go snuggle up with the man of the hour, or day or couple of weeks ; )



and pray that we bust outta here tomorrow because I have other little ones at home desperate for their Mommy I hear.  Oh how my heart bursts with love for them.  Just thinking of them right now brings tears to my eyes because all I want to be doing right now is playing in the backyard with them watching the sun set.

"Soon Mommy. Soon"

Love
~J

Monday, November 29, 2010

Stream Of Hospital Consiousness

So I sit here in the wee hours pretending that I did not just arrive back at the hospital with Paxton again after only being home for two days. This can't be happening. How did this day go from running errands to mad dashing it out the door 2 hours north again. I say good bye to another night of sleep again, because lord knows the vinyl couch, my mind spinning and the noises of a hospital just don't make for good shut eye.  My whole body says rest. My head hurts from crying so much today.  My mind is numb.  This is one of those posts where I tell you to move along if you want rainbows and sunshine because tonight you won't find it. I am sad and scared and frustrated. I want answers and I want to be home. I want my older two boys to not cry hysterically for mama because she was just gone for 8 days and now I have up and disappeared on them again dammit. It shatters my heart to do that to them because I know they can only grasp so much of that.

Today I melted. Melted like I haven't melted in a looong time.  I bent over the kitchen counter, phone in hand with cardiology sobbing as she told me to bring him in. "Don't even go to the er, he will already be admitted upon arrival."  And so it goes. The packing, the driving, the wondering, the tests, the questions, the hospital life.
Wouldn't change it for anything and I mean that because it means I have Paxton, but some days it catches up with you. Especially when you get teased with two days home only to turn around and head right back.
So I cried. A lot. So much I couldn't breathe.  Because really that's what I've needed to do for a long time.  Oh' I will start to cry and then pull it together, but what I needed was a fetal position in bed sobbing cry and so I did just that. Then I did what any Mother would do and picked myself up, dusted off, put on my big girl pants and hit the road.
I sort of laugh when people say "I don't know how you do it."  Cause really as if I have a choice. He's my son. What I wouldn't do for him. If I could give him my heart I would.  If I could take this away for him I would.  Maybe that's the hardest part of all...The control freak in me doesn't ultimately have control over this.  I have so many different doctors telling me so many different things and it becomes mind boggeling after awhile.
He has half a heart, when I doubt anything I have to bring him because I would never forgive myself if something happened because I didn't come.  I am Mom and the one who takes charge of all his medical care, appointments, hospital stays, visits and what nots. I am constantly scanning him, assessing, checking color. When he was here last week I left for an hour to go take a shower. When I came back I was in his room all of two minutes. I did what I always do and scanned him from head to toe and I said to the nurse "his i.v. is out."  Sure enough, she pulled back the tape and his arm was a log where all the iv fluids that were meant to go into his vein went into the tissue instead.  Nothing a little motrin couldn't fix, but I caught it, immediately because every time I see him I do a full body scan.  My mind never stops checking him.  I don't know that people realize just how much I watch him like a hawk.  It's a big burden to bear.
While most days I make lemonade out of our lemons, tonight I just want to be home in my bed off in never never land. I don't want to lay on plastic pillows on a vinyl couch listening to nurses continually walk in and out waking up my baby boy who just as desperately needs sleep.
He and I could both use a little R&R somewhere far, far away where life consists of walks on the beach and naps in a hammock with him nestled on my chest.
Hey, a girl can dream right....

Now that I have put fingers to keyboard and allowed myself diarrhea of the mind, maybe I will finally be able to fall asleep.  For tomorrow is a new day and surely it can only get better than today.  It will, it has to...

Ooh life! You can try to knock me down...but I always get back up for my babies!

Somehow, someway the strength is there when you think you have nothing left and for that I am so grateful.

~J

Wednesday, November 24, 2010

It's All In How You Look At It

Tomorrow is Thanksgiving. Paxton nor I will be home for it. We have been in St. Pete at All Children's Hospital since last Thursday night.

I have noticed ever since Paxton started crawling that he turns blue and his breathing is very labored. While I have been told this is very normal is a single ventricle baby, something in my gut was telling me it wasn't with Pax.  I kept mentioning it to anyone that was around and most of the time just brushed it off thinking I was overreacting. After all, just seeing Paxton crawl makes me become helicopter mom wanting to land all heroic like and save him from the struggle that merely crawling after his brothers is for him.  I want to just pick him up every time and take him where he wants, but I know I have to let him be a boy.

Annnyway, I noticed last Tuesday/Wednesdayish that he was significantly more cyanotic than even before. So I busted out the O2 monitor and spot checked him. He sat around 77.  Low for him as he is typically 85-87 percent O2.  My gut told me again that something wasn't right, but I didn't press the issue with my husband.  He also had an episode where we thought he was just cold, but in hindsight I see his heart was struggling, where his entire body turned as purple as a grape. No sooner was the phone in my hand to call 9-1-1 did he slowly return to normal.  Little itty bitty episodes are now all adding up to a big one.  Finally on Thursday I noticed he was not right. His feet were blue, lips a dusky dusky purple.  Breathing labored and cap refill time was extremely slow.  I put his O2 monitor on him again and made him lay down to rest while I called cardiology.  His sat's were running low 70's even hitting 69.  It was time to do something.  The dilemma was the local emergency room, cring! Or drive the two hours to St. Pete and risk something going wrong on the side of the road.

After going back and forth, watching Paxtons O2 return to normal, just as it had been during the week, I wondered if driving the two hours was the right decision. Was something really wrong or was I overreacting again.  He would drop and just as quickly recover. In the end we decided to be safe than sorry.  Nana Kimmie ran around like a mad woman while I stood in staring at him. I could not focus on anything but watching him like a hawk.  Nana would be our chauffeur while I sat and monitored him.  As luck would have it, we made it here with no issues.  Charity, my heart mom friend and confidant met us here at nearly 11 o'clock at night.  She came with a back pack full of anything we might need. She's been there done that more times than I can count, bless her heart.

And the wait began...

He was in the E.R.  right away.  Test were started.  The struggle began. He didn't want to sit still for O2, iv, or urine and rightly so.  Charity was my voice. The voice I didn't have because my heart was breaking so badly as I watched my son struggle with all that was being thrown at him. We arrived at 11:30 and were finally admitted and taken to our room around 4 am.  I had been up since 4 am that morning and was crashing hard.  Once we got up to CVICU he had an echo done that revealed nothing. Chest xrays showed nothing, blood work showed nothing.  I was frustrated.  I just knew something was wrong....

 (Note blue lips and feet just in this picture)


The doctors kept saying it's a virus. Yet he was completely asympotomatic other than the cyanosis.  They were treating him as if it were and yet he continued to turn blue for days, oxygen still desatting.  He had two contrast echos and another chest x ray that all showed nothing. 4 echos (3 sedated), NPO (nothing by mouth) for 3 nights straight and the confinement of a 13 month old to a crib.  My frustration was mounting. It had been 4 days, I needed answers.
So we decided to do a heart catheterization.  This allows obviously much more information about what's going on with his heart to be gained.
This morning at 8:30 am he had one done.

(Just out of surgery)

Paxton has right ventricular dysfunction. Meaning the only ventricle he has is not functioning as it should.  I was glad we found an answer and sad too.  His heart is big and it's struggling as he becomes the active little boy he has.  So they put him on Milrinone to help increase his heart function and we will reassess in two days.  We are hoping this is the answer and that tweaking his meds will help him get back to where he once was.  He remains on oxygen, iv fluids, milrinone obviously and is getting a blood transfusion as I type this.


It's been a looong, emotional week. It's hard to watch your little boy turn blue and not have answers. It's hard to hear them say it's a cold and know in your gut that it's not.  It's hard to be separated from family especially during the holidays.  It's hard to have to hold down your own child while he gets poked and prodded. To see fear on his face as they wheel him away for surgery.  Mostly, it just never gets easier to be in a hospital.  To know that this is "real life". When you just run out for a diet coke and see everybody going about their business while you go back to four walls waiting, just waiting for the green light.

Last year on this day we were packing to take Paxton home tonight for the first time in his life after living in a hospital for two months.  Today we have come full circle and are back right where we started.  I sure didn't see this coming. Hadn't planned on being right back here one year later. Course, I didn't plan on any of this past year, but I have learned that sometimes it's ok to have your plans fall through, because maybe, just maybe there are better ones waiting down the line somewhere...

Ahhh...yes life, as always, keeps me forging ahead, pushes me to my limits and reels me back in.  I cry and I recover. I get angry and then soft. I melt and come back stronger than ever. I am consumed by fear and just as fast with relief.  It's never ending all of these emotions and while I am exhausted, I am also strengthened.  Strengthened in my resolve to always try to see the positive. To know that there's always someone who has it worse.  To trust in the road ahead.  To cherish every. single. moment I am blessed to have with one of the most heroic babies I have ever known.


Count your blessings my friends...for surely they are plenty...it is after all, all in how you look at it.

Love
~J


Tuesday, November 16, 2010

Happy First Birthday Pax

 (As promised nearly a month late)

Our miracle baby's first birthday...
I canNOT believe it has been one year since I first met the most amazing, brave, gorgeous, heroic baby ever. Cannot believe the journeys we have traveled in 365 days.  More hospital visits than I can count. More echos, ekg's, meds, syringes, stats, trips to Tampa/St.Pete than I ever imagined for my life, but with that came more love from the happiest little boy!  Pick on me like he's been picked on this past year and I'd be the grumpiest person you'd ever meet, but not Pax. He gets it. He knows he made it. He knows his time here is a precious, precious gift and he has chosen to rock it.  He smiles every day and laughs a belly laugh that is the sweetest sound I have ever known.

( Good lord son, if you didn't get my big ole' mouth!)


One year!  It can change everything!

(Thank you Nana for baking his first cake!)



















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Please note that all of the pictures below were done by Rayna Overmyer.  She donated her time to come and photograph Paxtons party so I could be in the moment and not have to worry about taking pictures.  She is not only a kick a*# photographer, but an amazingly kind and gentle friend as well!  Thank you Rayna for making me cry the happiest tears ever while watching your slide show!  If anyone would like her info be in touch with me.


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What do they say..... Go Big Or Go Home

And good lord if this party didn't deserve to be BIG.  Like REALLY BIG!



We had buttons and everyone wore them with pride and my heart swelled to see how many people loved our boy!


Balloons galore, really big ones, that shouted to the world just how awesome Paxton is!


If this beaming boy isn't the epitome of hero, then I don't know what is....


Friends and family came in slews to celebrate 365 days of fight and triumph~

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My sister and her "BFF". I'm still not sure when she got all grown up and gorgeous. I was her age when I was there for her birth.... no really, I don't feel old or anything.


We gathered under a big tent in the backyard proudly showing off what never giving up means.


We had Robb from Robb n' the Cradle come play tunes all night long, because what's a party without music.  Awesome, amazing job Robb. Thank you!


We played baseball, we ate, we laughed, we bragged ; ) and we were together.


Pax was passed around to welcoming arms. Arms that love him deeply!



("Him" loves his Papaw, he just despises his hat)




None of course, love him as deeply as his Mama...


And I think my love for him radiates in this picture.  I watched this little baby fight for his life from the moment he was born.  Some days, a lot of days, it was just the two of us, fighting the fight together.  Some days he gave me strength, but most, I stood by him talking to him and trying to give him all the strength I could give him.  Wanting to fight the fight for him, but not being able. Instead, I was just there. Through it all. Every poke, prod, cath, injection, feeding tube, iv, chest cut open, intubated, getting unintubated, fighting with nurses to be his advocate,  hlhs baby actually learning to nurse moment.  Only one time did I have to step out.  That was when he had been poked trying to get a line in literally 10 times. He was so blue from crying that he finally just gave up the fight and went limp. Only then did I see the med flight team walk in because apparently they are the best. NO ONE could get one in and it was then they decided to shave his hair and stick it in his scalp.  I broke down. I lost it and I walked and told them this was it. Last try and if they didn't get it, then they'd have to figure something else out.  Never knew I had that voice inside of me until I saw my baby limp from fighting so hard.   By the grace of God, they got it and I held him the rest of the night. So grateful that he allowed me to soothe him.  So grateful that he would not remember these moments and grateful that I would be given the chance to tell him when he's older just how freaking amazing he is!
No ONE loves this child like I do!  No one could ever know what birthing a baby, handing them over at four days old to be put on bypass, then watching him recover for two months does to you. There's a depth to that love that can never, ever be described. It's literally a work of God.  To see what happens there and then to see it happen to your own.  

HE is a work of God and of all things good!


Those eyes, they speak volumes.  My beautiful, old soul of a baby!


Oh yah', he's got it like that!



SUCH a celebration!


Such love and endearment from so many people who had our back the entire way.  From the moment we found out to present!  Oh' my love for him is palpable!

(See, big mouth I tell ya ;)

And because my heart is split into thirds....



Man if I don't want a piece of that cake as I write this! Someone hook me up!





Big balloons for a big, BIG, BIG celebration! Epic actually! And every year hereafter that my baby boy gets to celebrate will be epic, because these babies are wicked strong yet wicked fragile.  Every cold we fight, every surgery we make it through, every echo that says his heart function is good and he won't need a heart transplant is epic because Paxton has HLHS, half of a heart people, and the fact that he is here at all is well...epic.  



Life is a series of thousands of tiny miracles.... and one that weighs 24 pounds thank you very much!

I am honored in more ways than I can ever put into words to be his Mother.  So proud to call him my son.  So proud that I helped make a boy as strong and heroic as he is.  I can only hope in the years ahead that I make him just as proud.

Happy Birthday my beautiful boy! I love you more than you will ever know and soon, when I can wrap my head around the fact that last year is behind us, I will write you your birthday letter. I have not forgotten, but our year is a lot to process and I'm working on putting it into words for you to read when you are older.  Your story is an inspiration Paxton and I know you are here to do great things!  I will be behind you every step of the way, maybe biting my tongue, arms out trying to help you, but I'll do my best to let you grow up and be a boy!  

Until next year!
~J


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