Monday, December 27, 2010

What is it about the holidays that makes one so sentimental....

My mind wanders about trying to piece it all together...this whole entire year and all of it's chapters.  They seem like only yesterday and yet a lifetime ago all at the same time.  As always, I begin to wonder what a year will bring.  I wonder where life will have lead us 365 days from now.

I thought back to last year around this time.  How I was filled with terror every day having just brought our son home, the son who had just had open heart surgery, the son who was housebound from people and germs. The son who was still such a blue baby. Still so critical. Still on a heart monitor 24 hours a day. The son who still had a feeding tube coming out of his belly.  The son who had his formula fattened in order to gain weight. The son who was not allowed to cry for more than 5 minutes.  Oh' the fear that filled me to the brim.  The dread that I had getting in the car to go anywhere for fear he would start to cry and I would have to pull over and hope that my soothing would help. The trips to Tampa that took 4 hours because I would have to stop any time he woke.  Or pull over on the side of the highway alone and have road rangers stop to see that we were ok, then follow us the rest of the way should I need anything.  The never ending sleepless nights because his monitor would go off for no reason, leading me to jump out of bed and literally fly, feet barely touching the floor, to his cradle fearing what I would find.
 
I never, ever thought I would make it to today. The day where I would be able to sit here and say it's ok. It's going to be ok.  I have accepted that he's my blue boy. I have accepted that my days include drawing up meds, constant assessment of him that I am now able to do with my eyes instead of a monitor.  I was dependant on that damn thing, I never imagined I'd be able to do it on sight alone and yet I can tell a change in him instantly, the moment I walk in the room.  Somewhere along the way the fear began to settle and our new normal became...well, normal.

Don't get me wrong I wonder about his future constantly.  I pray he gets to grow old. Pray he doesn't need a heart transplant. Will fully admit I have my meltdowns with the very best of them!  Lay in bed sobbing out of fear, but man if I didn't stop to realize this holiday season that I have come soooo freaking far in one year. I am wicked strong. "Iron clad",  as a friend said.  I have become so much more independent. So much more confident in my ability to handle whatever is thrown at me because damn if spending two months alone in a hospital with zero control over anything doesn't make you stronger I don't know what does.
Acceptance has found its way to me and my boys continue to thrive and grow here at home.  3 little, amazing boys who have endured far more than they should have to in a years time.  They have risen above it all, as kids do.  I like to think it's in their blood. You know, the kicking ass taking names gene! Or maybe it's not in their blood and they have shown me.  Either way, one year brings infinite possibilities.
Bring it 2011!

Yup, the holidays make me so sentimental. I have always been "tagged" as sensitive, but now... now I am so much more introspective.  So much more appreciative for life and what it stands for. So much more conscious of how fragile it really is as well.  I find myself trying not to smother my boys in hugs and kisses. I literally could hug and kiss them all day.  I am just. so. grateful. for them.

Watching them light up seeing Christmas lights or hearing them sing "shingle bells" and tell the neighbors "happy hollwydays!" Oh it melts me to pieces.
I was driving to my family's house and I kept thinking of Christmas without my kids. That having them makes it!  Brings back memories and traditions and all of the things I want to do with my boys. I want them to have those memories.

I have pictures! Oh yes, I do, but right now I am fighting a nasty migraine so I am going to head off to never never land.  I just wanted to check in and say it rocked! The smiles, the squeals, the snuggles; they so rocked and I fell more in love.

I'll be back soon with pictures of my boo's. Until then I'll leave you with a lil reminder of how utterly gorgeous they are. I get that I am biased, but really you gotta admit ; )







Love
~J

Monday, December 20, 2010

Why...


A mother's perspective

You passed me in the shopping mall...(You read my faded tee)You tapped me on the shoulder...Then asked..."What's a CHD?" I could quote terminology...There's stats that I could give...But I would rather share with you...A mother's perspective.

What is it like to have a child with a CHD?
It’s Lasix,aspirin,Captopril…
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need to help him grow strong…
It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking his sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…
It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…
It’s asking do his nails look blue?
It’s cringing inside at what he’s been through.
It’s dozens of calls to his pediatrician…(She knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.
It’s watching him sleeping…his breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)
It’s knowing that his heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends with whom I’ve connected…
It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…
It’s watching him chasing a small butterfly…
It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)
It’s a brave little boy who loved Thomas the train…
Or a special heart bear…or a frog in the rain….
It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow.




****************************

When I read this poem on another CHD blog, I realized as my eyes scanned the words something I had yet to take note of .  I don't know when, can' t put my finger on it, I have no date to attribute it to, no special mark on the calendar, but somewhere along the way.... I finally stopped asking why.  
Those words hit home and they hit me hard and I quickly pulled up my blog to write, because writing saves me.  


I stopped asking why.  


Which means I have found acceptance.


 For all the things in my life that I am having trouble accepting at this very moment, I have found acceptance in the fact that I have a very, very sick son.  Does that mean I don't cry at the drop of a hat? Oh' no.  I still melt with the best of them. I still throw tantrums better than a room full of toddlers. I still lay in bed at night praying with all that I have for my baby boy, but I am no longer mad about it. I no longer ask why through the sobs.  
It is...what it is and I have come to terms with that. 
It's wildly freeing.  

It's pretty amazing to stand in the midst of total chaos and accept it.  I remember taking Paxton to the emergency room this last time.  I sat on the bed with him with two of the most understanding people by my side. One who was speechless, the other fighting for me with all of her being.  I just sat there holding my boy.  Doing what I had to do while he screamed. "Tough as nails" one of them said about my presence that night.  That's not to say that by the time we finally got admitted at 4 am to his room that I didn't go off on some a-hole doctor like a sailor just off ship. No, I don't always have it together, but holy crap do I have it together for him when I need to.  It's actually a state of mind I can't really describe and not one I can say I have ever experienced before Paxton. It is like my body is there for him, but my mind goes on auto pilot so as not to feel to much, hurt to much, so I can be for him what he needs me to be in the moment.  It's almost an out of body experience as I think back on that night, on the many nights where my body had to pull it together in the most frightening of situations.  It has never let me down and I find that pretty miraculous.  

 I no longer ask why...I am part of a club I never imagined I would be and while we have all spent a great deal of time trying to find the answers, we all at some point, maybe without even realizing that we have, come to accept that there are no answers.  

*************************
I ran a race this weekend. A 5 miler, hill run in the rain and I rocked it! Ran 41:20. I was so proud. I felt so amazing after I was finished and all I ever want is that high back that I get when I am out there pounding the pavement or throwing medicine balls at x's on the wall in crossfit.  My Dad was so proud. He gets it.  He gets the need for the high. The need to run it away.  
The high that heals, least that's what it is for me anyway.  


My heart can be so high one moment and so low the next.  Life continues on around all of us. More HLHS/CHD babies are born every day and every day I mourn for them and pray for them and hope for them.  There are ones so near and dear to my heart (Kian) and others I only know through friends (Ewan, Parker and many more)  it fills me up and hurts and leaves me feeling helpless.  I realize this is a journey that will not end. The suffering will always be there, but so too will the glory, the victory. For some of us anyway and as we all trudge this journey we each cope in our own ways.  We do what we can. We cry. We get angry sometimes, but mostly we just... are.  We find ways to carry on, to try and be as normal as seemingly possible. Some of us (me) have to step back from the social network at times in order to stay focused and not look to far down a road that is inevitably not in our control anyway. One persons journey does not mean that it will be mine as well, but it's hard not to compare. So I run.  I squat. I throw medicine balls at walls. I lift weights. I jump rope. I sweat. I breathe deeper than I ever have. I close my eyes and let oxygen permeate every cell in my body. The same body that at times feels like it's been deprived of oxygen and the ability to breathe since I was 33 weeks pregnant and saw the ultrasound tech's face.  The same body that has lost more sleep than any person should. The same body that spends every single day bargaining with God for her sons life.  The same body that runs to his room if he sleeps to long. This 31 year old body that feels 61.  But, I don't ask why anymore. Instead, I just do.  As every single one of us HLHS moms do. 
 We just are. We just will. We just do. 


This journey will continue on with or without us so we man up and take the highs with the lows. Lean on each other when we can and melt with every smile our miracle babies give us because surely if they can muster through with such grace, so too can we.  
If the holidays don't bring clarity to our situations I don't know what does, because some, many in fact, will not have their babies here with them and my heart is raw for them, because dammit it could have just as easily been me.  I don't know how He chooses. I used to question that too, but I don't anymore.  There are no answers for that either.  I just find a gratitude so deep and thick that he is here. I try not to feel guilty about it.  Try not to over analyze when really in truth, analyzing has become a full time job for me. So I just keep moving and swimming (for those of you who know Nemo) 


"Just keep swimming swimming swimming" 

**************************  
The new year is just upon us and I have something in the works.  Someday I will share what that is, it's pretty cool so stay tuned.  
For now, I will leave you with these: 





Oh my gorgeous babies! How did I ever get so lucky! Some days I seriously think...what else is there... 
Man, they hurt so good! 

Love
~J

Thursday, December 16, 2010

It's Beginning To Look A Lot Like Christmas...

Oh yes it is.  The boys totally "get" it and it is SO much fun! Oh' it is so great to be home, going to Christmas parties with my boo's and getting haircuts and making them breakfast.  I love it!  I appreciate it. I relish it because I never know when I will have to jump ship again.

We decorated the tree.  A really, really big one. Like some 10 feet that the boys picked out and thankfully our ceilings are able to accommodate it. The front door. Not so much. After a few lost branches we made er' work though.




We fought over ornaments, investigated and laughed big belly laughs...



We snuggled and hung, snuggled and hung...

 (Holy tired Mommy just home from a week in the hospital batman. Little did I know here I would be going back for another week the next day.)


(oh you gorgeous thang you)

When all was said and done we sat back and admired...


(i phone pic)

Erh... or borrowed Mommy's camera and took photography into our own hands (thank you Austin, quite impressive)


  (Maybe had a snack of peanut butter on a spoon in the buff, naturally.)

(in typical jenn fashion with the vacuum in hand)

We went to holiday performances where my boy merely stood on the stand looking for me, finger in mouth instead of participating. What can I say, our obsession with each other runs deep.



(Crappy pics, I know, but I was like a mile away, guess I know what to ask Santa for ; )

Pax watched on with brotherly pride flowing out of every pore. Clapping and dancing. What he wouldn't have given to crawl right up on that stage!



They made Mommy's favorite white chocolate covered pretzels with Nana while she was off to the doctor.





Pax helped by tearing apart the tupperware cabinet and crawling with one in his hand thus smearing it from one end of the house to the other. So long as he enjoyed it, which he did, it's all good with me.


Tonight we went Christmas shopping and filled the car with goodies for little boys who have had one hell of a year and deserve a extra "specials" from Santa.  As pictured below, our bumper was draggin a smidge ; )


And I continue to glow in the love my boys continue to give me day in and day out.  Oh' how they fill me up. Like Mason announcing when I walked into his class party today "that's my Mommy friends, I wuv her, say hi!" My cup runneth over to say the least.  He was SO proud of me and it was in that moment of clarity that I was reminded that they are what it's all about. What I am all about and that is so freaking awesome!


Yep. It's beginning to look a lot like Christmas around here.  Oh' their faces come Christmas morning.
Yet, at 3 and 4 they actually know the meaning of that morning. If you ask them, they will tell you "it is Jesus' birthday Mommy."  For that I am proud. 
Proud when Masons teacher says to me "it is so obvious how much he is loved."  
My mission in this life is complete. My boys know they are loved beyond measure and radiate it. Even through the separation, they know.  Come hell or high water, they will always know. 

Merry Almost Christmas Friends.  It's gonna be a good one!

Love
~J


Tuesday, December 14, 2010

Well Hello There

I know, I know, it's been far to long.  We all remain at home and doing well. I have been spending a whole heck of a lot of time trying to catch up on life.  There was/is a lot to be done especially with the holidays just around the corner.

Gahhh! My list keeps getting longer and longer instead of shorter, but I push on.  Cause I am good like that ; )

As you can see, ole bloggie has gotten a much needed face lift and I love, LOVE, LOVE it! My girl over at Once Upon A Blog did the surgery and as always I gave her free reign and as always she was right on target for what I was looking for. Thank you Jennisa!

So, in other news the tree is decorated and gorgeous I might add, mostly because it has all of our previous years christmas cards adorned from it as well as all the boys ones that they made me from school.  I love to unpack those boxes every year and see how big they have gotten!  It really is incredible.

And I have some great pics to share only my camera is giving me the runaround so I am attempting to fix those technical difficulties now.

In the mean time I just wanted to check in and say, "what up to all my peeps, let you know that we are doing awesome and thriving here at home. Can i get a woo hoo on that one please!" Life has returned to normal and girlfriend is so thankful!

I will get you some pics up soon, cause my boys, they're like weeds I tell ya, growing and changing every day.

Love
~J

Wednesday, December 8, 2010

To All My Peeps

We are home. Having been gone for two weeks, there has been a lot to catch up on.  I am finally able to sit down and write a quick post.  I am beyond grateful to be back to everyday life.  Those days in the hospital where time seems eternal make a person appreciate the every day little things all the more.

I have a lot of shout out's to throw out there, like people that rise to the occassions and help my family and I, when at the drop of hat, we have to leave for the hospital.  I could list off names for five minutes, but you know who you are. My chauffers, nannies, errand runners, sleep catcher uppers, clothes bringing, eye roller, diet coke getting,  baby boy loving, spirit lifting peeps! Even my blog readers near and far that either leave comments or send me personal emails, thank you!  You'll never know how much hearing from you makes my day.

And I am grateful for my baby boy who always keeps me grounded.  Who always reminds me that while this is surely going to be a long road, it is so worth the fight.

I plan to write more, but for now, for tonight, girlfriends gotta sleep.  I am still not quite caught up on the lack of sleep those two weeks brought me and the stress no doubt took it's toll on my body. I am getting there, slowly, day by day and each day Pax remains stable is another day I breathe a sigh of relief.

Night night termites!  Sweet, sweet dreams, you all know the love affair I have with never, never land...

Love
~J

Friday, December 3, 2010

Today

I am sitting in the dark at RMH while Pax sleeps in the pack n play. It's been two weeks here at the hospital.  I won't lie, today I am dragging serious a*#.  I wonder how much the heart can take. How much tugging and pulling, waxing and waning, highs and lows, full up of loneliness can one take...

I want the loneliness to end, but somehow when all you do is step outside to get a diet coke and return to the hospital life you feel alone, because outside, out there, are all kinds of people going about their lives. Perhaps preparing for Christmas or meeting a friend for lunch or falling in love. Then there's me, walking the same walk I have walked oh' so many friggin times back to the electric doors that open with my visitor pass key card to let me into a place I would gladly freaking give that key back to.

Only this is normal... This is going about my life and it's lonely.  I want to be Christmas shopping or romping around in the backyard with my boys. I want to not sit in the dark and feel so alone on this journey.  The only thing that softens it all is when I stop typing to hear the in and out breathy sounds of my boys breathing.
He softens everything.
Especially me.
The way he lights up when I walk in a room or sit up  in bed would melt your heart instantly. We should all be so lucky to have such a gorgeous man think we are that awesome!
And so I continue to wax and wane, ebb and flow.
I continue on because I don't have a choice nor do I want to.  And just as hard as hospital life, making the shift from that to everyday home life will have it's ebbs and flows too. It's hard to instantly make that switch, but we will and we will make it.
Am I a little rough around the edges from all this, sure.  Do I snap a little sooner, yup!  Does my patience dwindle, for sure. I have no room for excuses and what not's living here. This is real, important life and when I hear, see or find someone that doesn't realize the importance of that I get snippy.  Then just as easily, I melt, sob and cry. Cry for those people that just don't get it. Cry for getting snippy. Cry for my son. Cry for my other two boys. Cry for this journey that I hate and love all at the same time.
I loaded my car up with oxygen tanks today and I stood in the parking garage in flip flops in the freezing cold because I was unprepared to be here through cold front, staring at my life in the trunk.  THIS is the life I was meant to have and while there are days, much like today, where I wish being busy at work was my biggest complaint, I know that this is what it's all about.  Seeing this little boy make it and rock it and do it all with iv's in his body and oxygen on his nose is what it's all about.
How dare any of us complain...
I am blessed. Blessed because life saw me fit to take care of him and I am honored to do it, even on the days that have me trudging the beaten, worn path I have walked so many hundreds of times before.

Love
~J

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.


*********************

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.

*********************

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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