Wednesday, September 29, 2010

There's always gonna be another mountain...

"There's always gonna be another mountain, I'm always gonna want to make it move

Everytime I hear these words in Miley Cyrus' "The Climb" it brings tears to my eyes.   Seriously, every time.  It's been embarassing at times while in inopportune places and this song comes on.  :)  When I was pregnant with Aly, right about the time of her diagnosis, this song was on the radio 14834736 times a day.  I listened to it but I didn't really listen to it until one day I was driving down the road thinking about our journey ahead and I really listened.  And I cried and cried and cried.  The lyrics to that song describe to a "T" how it felt to be pregnant with a child with a broken heart.  And there was NOTHING I could really do about it. 

A little background on me....  I'm a fixer.  I'm a planner.  To an extent that I can't describe.  I have always been that person.  I have friends and family that come to me to fix things all the time.  From simple things to more complex things.  If they think it can't be done, they call me.  It's my favorite thing in the world to help people with things.  To fix their problems, to find the answers they are looking for.  I love it.  Every year (almost) we take a big vacation with anywhere from 6 people to 15 people.  I plan the whole entire thing for everyone.  I pick the dates, I find the airline tickets, I plan the hotel stays, airport transfers, activities, passports, I hold the tickets until we go, I organize things up and down, backwards and forwards and I love every minute of it.  So what I'm trying to say is, I adore nothing more in life than to be the go-to person, the fix-it person, the answer person- even if I don't have it, I will find it.
Over the last 16 months I have brought to my knees with my inability to "fix" the biggest problem that I have ever been handed. And it frustrates me to NO END.  It has affected my sense of self worth greatly. If I can't fix problems anymore, than who am I? Everytime someone asks my about Aly and her heart, I am thrilled and could talk for days about how she's doing, what's she's been through and what's to come.  I am so proud of her and will tell her story to anyone who listens. But as soon as someone asks me, "How are you doing?" or "How do you do it?" I immediately tear up and can't speak. I don't know why.  It's always been that way.  I have gotten a little better- to the point where I only tear up.  I used to burst into tears if someone asked us how I was doing with everything and there was no stopping it.  And I think it is because I can't control it.  I can't fix things.  I can't make it better.  And it's hard for me to admit to myself that Aly will never be "cured".  Her next surgery may not be the end.  There may be more, there may not.  But this is never going to go away.  She is always going to have half a heart.  always.  And I can't change that.

 I heard "The Climb" this morning and the way to work and that line got me again, like it always does.  This mountain that Aly is climbing, I would give my life to move it out of the way for her to give her a nice easy straight path to walk through life.  And I can't. Not even a little nudge. The best I can do is walk with her every step and climb when it's time to climb and hold her as high as I can to help her fight be easier and help give her the strength to endure.  Yet another lesson I feel that God is trying to teach me. 

I can almost see it
That dream I'm dreaming
There's a voice inside my head says
You'll never reach it

Every step I'm taking
Every move I make feels
lost with no direction
my faith is shaken

I've gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm gonna always wanna make it move
Always keep be an uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
the chances I'm taking
Sometimes might knock me down
But, no I'm not breaking

I may not know it
But these are the moments
I'm gonna remember most
just gotta keep going

Thursday, September 23, 2010

Aly's Cardiology Update...

So, we had a cardiology appointment this afternoon that I had been dreading.   For many reasons...
First, I always dread cardiology appointments especially if it's been a while because I am always afraid that something will not be right.  I think that constant paranoia about appointments stems from Aly's original diagnosis when I was pregnant.  That was the first time ever in my life that a doctors appointment became life changing.  I always find myself wincing when they call to confirm, when they call us back and when he listens to her heart with his stethoscope.  EVERY TIME I think, "Oh my gosh, he's listening longer than last time.  Why?".  Seriously, every time.  
Secondly I dread these appointments because of Aly's GIGANTIC fear of anything medical.  ( Not that I blame her for even one second. )  Our appointments are beyond awful.  We are getting a little further before the melt down every time.  Remember last time? We didn't even make it into the building before she started getting suspicious.  Today we made it all the way to the waiting area where we had a snack and watched cartoons!  See....

They called her name and we took her back... as soon as I even leaned over the tiniest bit to put her on the table it happened.  The switch flipped and my adorable little Aly bear morphed.  Poor thing gets sooo worked up.  She holds her breath, always a little too long for the nurses liking, and cries and screams.  This time I thought I had outsmarted this process.  I had set my iPhone up with some Mickey Mouse Clubhouse clips from YouTube so that I could hopefully enthrall her with those but, of course, they would not work.  So in a panic I just started playing videos of her from my phone and that helped.  I was not exactly thrilled with her stats from this appointment.  Her sats were 75 (normally she sits in the mid to upper 80's) and little one gained 3 OUNCES over the last 2 months.  I could not believe it.  We were sure she had gained at least 1 or 2 pounds.  Thankfully (and unexpectedly) Dr. Z was ok with all of the above.  He gave her the all clear for another two months.  We discussed Aly's Fontan and he said he would ideally like to see her have her surgery around 19 to 20 months of age, which would put us January or February.  So either at her next appointment at the end of November or her January appointment we will get her on the books for the O.R.  Sigh...  I'm sure I'll talk more about that in posts to come.  But for now, Aly is in the process of throwing her dinner all over the floor (one of her favorite past times) so I must go.  No worries, there will be a 15 month post coming up t(NEXT WEEK ALREADY!!!?!?) so more to come with more pictures and fun stuff- I promise. :)  










Saturday, September 11, 2010

Oh for the love of calories- looking for advice...

I was doing my daily blog reading before Miss Aly got up this morning. Our heart friend Joshua's mom (whose name happens to be ALLY JEAN!! How crazy is that?!? We were meant to find each other :) ) put up this post. Jeremy and I were having a frustrated conversation yesterday (not with each other- with the situation) after we left the doctors office and Aly was the exact same weight she was two months ago about weight gain. HOW DO WE DO IT?!? How can we get our adorable girl to gain the weight she needs to gain before her Fontan?? I feed her every chance I get. She gets 3 meals a day and snacks in between. I consciously watch how many calories things have and opt for the higher option. For instance, the Gerber raviolis are a lot of food but they are only 70 calories for probably 20 raviolis! Um, excuse me, but if I can get Aly to eat 20 of anything it's gonna be something that equals more than 70 calories. She eats pretty well....she's VERY picky, which can be frustrating, but I just have to take a deep breath and find something she will eat. I've been known to try 2-3 different dinners. This is something I NEVER thought I would do with my child. I always had planned on being one of this, "I'm not a short order cook" type of moms. Yet again, one more surprise I had coming for me. I am exactly that. Whatever she will eat. I will try and try and try again until I find the magical thing for that meal that she scarfs down. It's kinda funny. She will fight and flail and cry and scream - you might even start thinking, "Maybe she really just isn't hungry?". But you put some of those Tyson chicken nuggets on her tray and she will eat them faster than I can cook 'em! AHHHHHH! SO frustrating.
So what do you do? What are your tricks? How do you get your children to gain weight? It's such a fine line. Of course, we want Aly to grow up learning healthy eating habits but fruits and veggies aren't exactly the highest calorie snacks in the world so we end up snacking on cinnamon graham crackers and Gerber puffs. And even those aren't cutting it. H-E-L-P!! I'm sure most of us struggle in this area- so let's exchange secrets!!!

Wednesday, September 1, 2010

I'm going through a thing...

I'm going through a thing... I think. A funk of sorts. I'm not sure where to put it or how to deal with it, so I thought if I got it out on "paper" (the technological equivalent of paper to me- a.k.a. blog) it might help me.
I have had such a heavy heart lately. I mean heavy to the point that I feel it in my stomach everyday. I don't know when it started or how it started but all I know is that it is there. I would like so badly for it to go away.
Here is my issue. I don't want to do this anymore. I don't want to be so close to this. I don't want Aly to have only half a heart anymore. I absolutely, without a shadow of a doubt, do NOT want to make her do it all over again for her Fontan this year. I have been extremely emotionally fragile lately. And for really no reason. Nothing significant has happened with Aly, she is doing just fine. Wonderful, actually. But I cannot stop myself. I have been breaking down into sobbing fits lately. For example, the other day I was rocking Aly before bed and I just lost it, out of nowhere. Sobbing. Tears pouring down my face. I was looking her in the eyes and thinking about what I'm going to have to do. That I am going to have to look into her eyes and hand her over to put her through open heart surgery again. Knowing fully well, that she will have no idea what is happening. The worst part about it is, that if she keeps doing as well as she is today (god willing) I will be taking a smiling, happy, playful little girl and making her go through that. Seriously, the thought of it shatters my heart into a million pieces. How will she ever forgive me for doing that to her? I was thinking (and crying) on the way to work this morning how badly I am terrified of surgery day and going to the PCTU. I am actually looking forward to being on the general floor with Aly after her surgery. Do you know why? Because once we are on the floor, I know that she will be coming home with me. The worst part is over. It might not be that day, that week or that month.. but at some point she will be coming home with me. I will not be leaving that hospital without her. When she is in surgery and in the PCTU, I don't know that for sure. I wish for it, I pray for it, I insist that is what will happen, but I don't know that. I don't know why I am having such a difficult time with this. I have been there 2 times before (actually 3, since Aly had a shunt revision surgery also) but the thought of it makes my sick in a way it never has before. Don't get me wrong, I've never been happy about it, but I always went into with a strong willed bull headed "let's do this and get it done" attitude. I'm not sure where that attitude went lately....
Part of my problem is that this has just not been a very good week in the heart community. There has been too much heartbreak. It's too much. How can these parents be expected to go on with their lives after something like that? I ache for them because there is nothing I can do. I can offer my words of encouragement, my support, my prayers for them, my tears... none of it will change anything for them. They still have to pick up the pieces and move forward somehow. HOW does one do that? I cannot find the words to express how much I feel for them.
All of this extra emotion has made me paranoid. I am constantly paranoid about Aly's health all of a sudden. I find myself just staring at her thinking, "Is she breathing funny? Oh my gosh, is she retracting? Does she look blue? She looks blue. She's been lazy today. Does she not have any energy? Oh my gosh, does this mean the leaking in her valve has increased? " ALL THE TIME. I haven't thought like that since we brought her home from her Norwood. And she is absolutely fine. I checked her sats the other day amidst one of my little, "Oh my gosh, she's blue" moments- 90. Couldn't be better. I need to get through whatever this is and move on. It isn't fair to Aly to have a mom who is just a touch away from being a certifiable crazy person and it's not the way I want to live. I want to embrace every day. I want to spend my time making Aly laugh, not make her wonder why I'm sad. So, here's my own comment to this blog post:

Dear Jenny,
SNAP OUT OF IT! You have a beautiful baby girl who could not be doing any better if she tried. There will be plenty of time to worry as surgery comes closer and you have no idea when that will be yet. So stop wasting your time and enjoy life! Start appreciating everyday and stop thinking of nothing but the future. You have been chosen by God to be Aly's mommy for a reason and I don't think that it was so you can cry about the hand you've been dealt everyday. Embrace it; embrace the support you have in other heart friends, family and friends. Lead by example- live life the way you would want Aly to. You don't want her to grow up being scared of everything and not living life to her full potential! So again, to sum it up- Shape up Momma! Let's start today and make more good days to come!

Feel free to add your own kick-in-my-rear comments below:

Whew... I actually do feel a little better. Maybe there really is something to this whole "writing-can-be-therapeutic thing?" :)