Friday, August 26, 2011

A bit of reminiscing!

I am finding that having a fragile child has made me a bit bi polar. Sometimes I want to be supportive of other people, and I understand that different people have different stress thresholds. And some days, nobody's child has the problems that Jax has, and I find myself wanting to tell them to stop whining!

Because I worked in the very hospital Jax spent so much time, I know more about what is going on, and I have never panicked when things get scary with Jax. My first month working, one of my heart kid's passed away on our floor. She didn't even make it to the PICU after she coded. It was horrible, and I really struggled with that for a long time. But when people are asking me how I'm so calm, that's a big reason why. Some days I miss my job so much, and other days just the thought of going to work makes me want to climb in bed for a month!
I worked during Jax 117 day hospital stay. There were times they called me on my pod to tell me they had to reintubate Jax, and I would just walk downstairs to my baby's bedside. In a way it was nice to still be able to bring in some money, and stay close to my critically ill baby. But then there were days when the bi polar feeling hit, and when a mom complains about having to stay a few extra days in the hospital, for a total of 10 days, I have to walk away to keep from screaming.."10 days! Try 3 months lady, and we aren't headed home anytime soon!"

But when it comes down to it, the last 6 years has made me wiser, and made me a much better person, minus those crazy, whiny days!
I was cleaning out Jax closet yesterday, to pack up what I could, and I came across stuff that really hit me.
I found stuff that I brought home from the NICU. Blood pressure cuffs that won't even fit around my wrist! his first pulse oximeter probe, and his little white hat. The hat he wore for a total of 5 minutes when I first held him, then got tossed to the side as he went to the NICU.

Then I pulled out some of those pink buckets they give you in the hospital. I had brought stuff home from Jax 4 month hospital stay in those, because he had so much crap! Tons of soap, tape, and that butt cream that they think works so well. (I still prefer good ole desitin.) And a few things that brought back memories. The mask they bagged him with the very first time he went into respiratory failure and had to be intubated. His little blue buddy, we called it, because he loved when the did CPT on those sticky lungs. It would lull him to sleep every time. The baseball that our minor league team gave Jax. There is a picture somewhere of a player standing next to his bed. He is heavily sedated and doesn't have a clue that they guy is even there!

I try to keep just about everything from Jax stays. I like times like this when I can reminisce about what my warrior goes through. I have these name stickers all over his room. They are name tags they put on PICU beds to keep track of which kid they are at when things get crazy. I've kept every single one. The last few I stuck to paper because I realized sticking them on things in his room isn't going to preserve them very well!

Jax PICU posters. This is a fun thing they do for the kids. They get their likes and dislikes and make them a poster. It makes the room a little less scary, and its fun to read each kids poster. Some of his posters were lost when he moved from bedspace to bedspace. Or if he went to the floor when I wasn't there and the nurses threw them away.

So I had to chuckle at myself the other day. After I packed up all this stuff, I was at the hospital for appointments. I overheard a lady tell someone that this was their longest hospital stay at 14 days. The first thing that popped into my overstressed mind was, "seriously! 14 days! Cry me a river!"
So I had to laugh, change my attitude, and remember we are all different people with different problems.
But for my own fun, and because I'm organizing and packing this stuff up, I posted pictures from hospital stays over 14 days. The first 3 are the same 117 day hospital stay. The rest are all separate stays.

But its always funner to post these pictures.


Zoey's mom, Heather said...

What a journey you have had sweet Jax and mommy and daddy too. you are all so pleased to have each other an have been granted the gift of perspective. You all see the what is truly important in this life, despite the trials and struggles. I often tell people, don't pity us, be jealous of us, WE are the lucky ones!

Kisses and hugs to one and all.

Mindy said...

You never know how strong you are until strong is all you have. Lacey, I have never met but you inspire me!

Runningmama said...

I am in awe of you and your strong spirit through everything that you have been through. I hope the move goes well, post pics when you finally are settled :-)

Erin said...

yeah what is with the praise over that butt cream? We still have tons of those tubes lying around and it's practically useless. Although the triple paste is what finally worked for us. Brought home a few of those too. I wish I had saved a few more little rembrances like that. Got rid of most of the hospital stuff, especially the scary memory things!

Gracesmommy said...

The last two pics of his beautiful smile are the best! He sure is a little warrior! You're one lucky momma to have such a brave boy!

Anonymous said...

He is a handsome guy, Lacey. Seeing him makes me smile. I'm sorry you've had so much hospital time. I really hope he's done with hospital time and just hangs at home for a looooong time!

Michelle said...

Just today, I was reminiscing about the "bad old days". Thinking I'd never written about them, wondering if I should now. Sometimes I'm thinking it might help to move it out of my brain. I was almost in tears looking at those pics of Jax and then those smiling ones, brought me back. What a blessing. I have those same thoughts about when people are complaining about their not so serious kid issues and sometimes I really have to work my attitude back down to a normal level..just like you said.

Chromosomally Enhanced said...

I am not sure how you made it that amaze me...Jax is to sweet! I just want to kiss those really make me think I can handle anything! thank you! smiles

Louie said...

Thank you for the perspective. Seriously every time I have a "poor me" moment because my son has down syndrome and blah blah blah - I think of you and how much you have gone through - man I have it easy! You are amazing! Thank you for being honest about your journey. Don't you wish some people could live your life for just a day - boy they would have a different perspective on life. I have friends that give me "pity eyes" because my son doesn't talk and what not - I just want to scream sometimes "oh that's nothing - we got it good". I don't know how I can fall in love with that sweet Jax and have never even met him. He has quite the fan club!

The VW's said...

Before having Gavin I was a whole lot more willing to listen to other people complain and whine about their trivial problems.....but after I've seen what my sweet boy, and many other children have to go through, I usually want to tell people to "Suck it up! You have no idea how easy your life is!" I never actually say this to anyone, but I sure do feel like it when people complain all the time!

Some days I even say it to myself when I'm struggling with Gavin's lot in this life! I think of other children (like Jax who has had an even more difficult road), and I stop wallowing in such pity! There is always someone else having a worse day than we are! More people need to remember this!

Looking at those pictures is proof of all that Jax has been through, but also, all that he has conquered! What a sweet and tough boy! Hugs!!

Colleen said...

I have a journal in a shoebox of those first days in the NICU. Sometimes it's too hard to read and other times it's nice to see not only how far Isaac has come and me too! 14 days days seems like a walk in the park;)

Ashley said...

Thank you for reminding me that there is always someone out there that has it worse. Some days I get so overwhelmed with all the dr appointments, therapy sessions, and stuck in my own pity party that I forget how healthy my little guy is in the spectrum of things. I am amazed at how strong Jaxson is and know that he is that way because he has such an amazing mom who fights to get him what he needs!

Melissa said...

We've never had hospital stays like Jaxson's but I still have Claire's bed signs too. Just a little reminder about her surgeries.