Wednesday, October 27, 2010

This Can't Possibly Be Our Life...

This was not part of the plan. 
As the weeks until Jillian's birth have quickly dwindled down into the single digits, I've found myself wondering more and more, who's life this is that we're living. I mean, clearly, this is not our life. This was not part of the plan, even if the plan wasn't clearly laid out. 
Last night, JR and I were talking about how fast this is all going. How fast Jillian's birth, which really, has become how fast her (first) surgery, is creeping up on us. And we? Are. Not. Ready. Period. 
We know that it has to be better that we found out about Jilly's defects ahead of time. But, lately we've just felt robbed by it. Our anticipation for her arrival has become less excited and more worried. Instead of only having 5-8 weeks left to get everything ready for her to come home, we still have... a lot more than that, once hospital time is figured into the equation. Instead of wondering how the heck I'm going to manage being home with an almost 4 year old, 2 and a half year old and newborn, I'm wondering how I'm going to manage being away from my husband and my boys, in order to be with my daughter in the hospital, willing her to fight for her life. I don't know what size clothes to buy her, because I don't have any clue when she'll be home. After 6-8 weeks in the hospital will she be newborn sized still? Will she be preemie sized thanks to the surgery? Or will she be bigger? 
Right now we should be eagerly anticipating the day our family becomes complete. But this diagnosis has made us wish we could slow down time. It has us hoping to somehow drag out this pregnancy as long as possible in order to give her the best chance possible. Her kicks and rolls and stretches should be giving us nothing but joy and happiness, but they've somehow become a constant reminder of the fight she will have on her hands from the moment she is born. 
We're having to plan for the boys to be at the hospital when she's born so they can quickly see her before she is taken away and prepared for surgery. We don't know if they'll be able to hold her. Or kiss her. We're just hoping they'll be able to see her. They won't be able to see her for at least a week after her surgery. And that? Sucks. 
So, for now we're just trying to stay positive. Trying to concentrate on what we can do. Trying to "keep her in there" for as long as possible. 
I guess we're still adjusting to this life.

Thursday, October 14, 2010


I feel like everything has caught up with me today. Emotionally and physically I'm worn out. I've tried to be strong for the last 6 weeks but... I feel like that's slipping away. I'm starting to realize that through all of this I need to be honest with myself. Yes, I'm optimistic. Yes, I'm hopeful. Yes, I believe we're making the right decisions. But I'm also hurting. Deep down, this just hurts. 

Through all of this I've had amazing people come forward in support for us. I've met some people who have gone through this, and other things parents shouldn't have to go through, too. And while all of that makes me feel better, it still can't heal the hurt. It doesn't get rid of the guilt I feel and it doesn't completely ease the pain. It doesn't make this go away and it doesn't answer any questions. I'd like to say that my heart is broken, but I've been shown now, twice, what a truly broken heart is. I'd like to say that something positive has to come out of this, and honestly I do feel that way, but why does there have to be so much pain first? 

I've asked myself a million times why this is happening? Why does this have to happen to my family? Why is it my kids that have to go through this? Even though it will be Jillian going through the surgeries (and Athan before) it is ALL three of my kids and ALL of us who are affected by this. Why does it have to be MY kids? Why does it have to be JR? And why does it have to be me?

It's not like I'd wish this upon anyone else. But I wouldn't wish it for myself, either. It all just seems so unfair. I hate to host my own pity party- truly I have tried my best not to- but really? Two babies with heart conditions? Wasn't one enough? And why three or more surgeries this time? What did I do to deserve this? Was there something I was supposed to learn after Athan's surgery that I didn't? Some lesson that I was blind to, that if I'd understood would have changed all of this? Did I want a little girl too much? Did I wish too hard for another baby to make my family "complete" instead of just being happy with what and who I had? Why is it me who has to excitedly and at the exact same time apprehensively count down the weeks until she is born? Why is it us who have to try to put on a happy, brave face everyday when really we're mad and scared and hurt inside? Why is it that we are the ones that have to face the fact that our baby might not come home with us? I just don't get it.

The rational side of me wants to say its just something in our DNA. One of those crazy things where you have to have two parents who carry a recessive trait and JR and I both just happen to have it and twice now that recessive trait has decided to come through... or something like that... High School genetics was a long time ago... 

But then there's this other side of me.This side that asks all these questions and wants answers that aren't based in science. Who cares if it's genetics? The fact still remains that this is happening to MY family. The truth is, it will be MY baby that I have to watch fighting for life- again. Something so many people- myself included with Oli- take for granted. I don't blame them, and I don't blame myself for doing it with Oli. After all, that is how its supposed to be. A newborn shouldn't be required to fight for their life from the second they are born. So how come some of them do?

Tuesday, October 12, 2010

More Than A Diagnosis

When I look at Oli I think of him as my super sensitive 3 year old who, like his mommy, needs his freak out moments almost daily in order to keep his emotions in check. In him I see a caring, loving, smart, funny little boy, who loves his little brother and is wise beyond his years about what his little sister will be going through, even if he doesn't quite understand. He will share his toys with Athan, even though anyone can see how hard it is for him to do what he thinks is right instead of what he really wants to do. And when we tell him he doesn't have to share his toys with his brother all the time, he says its okay... Athan can have "it", even though it's clearly tearing him up inside. At times he's more rational than JR and I put together. He's profound. He's emotional. He's a gentle soul.
When I look at Athan I don't see a COA (Coarctation of the Aorta) baby. I see a free spirited, march to the beat of my own drummer- scratch that- march to the beat of my own band, fearless, two year old. I see mischief in his eyes and mayhem in his path. He's more stubborn than any human should be allowed to be and he's down right ornery. But, he has a kindness deep inside him, that when it makes it's way to the surface will melt anybody's heart. He is nothing short of life. 
So, why is it that when I think of Jillian, all I see is doctors appointments, surgeries and trips to the ER? Why can I only think of the things she won't be able to do and not the possibilities she will have in front of her? Why is it that when I look at her clothes I somehow manage to see past the fabric and only think of the scar on her chest that they will be covering? Why can't I picture her as more than just a Hypoplastic Left Heart Syndrome baby? Why can't I see her as more than just a heart kid? More than a diagnosis... 
Last night I took a few minutes to just lay on my bed. To just take some time to relax for a few minutes. Jillian gave me a nice hard kick, almost to say, "Hey Mom! I'm here!" And for the first time in the last five or six weeks I let my mind wander beyond her diagnosis. I let myself think about her and not that she'll have a scar on her chest. I let myself wonder about what her personality will be like- will she be kind and sensitive like Oli? Or maybe she'll be like Athan- too busy living life to think too much about the world around her.
It's like that one little kick reminded me that she is more than just a diagnosis. She's more than heart disease. She's our daughter. Oli and Athan's sister. She's already loved by so many. And she will be a fighter. She's our little Jilly Bean. 

Thursday, October 7, 2010

Leave It To A Surgeon To Make It So... REAL

Last Thursday we met with our doctors at Children's Hospital. The last time we were there, we left feeling completely overwhelmed with our heads in the clouds. We weren't happy about our situation. We didn't fully understand it. And we certainly didn't think it was in the least bit fair, but at the very, very least we did feel somewhat optimistic. After all, we still had four months before we really had to start worrying about anything. Four months before Jillian was due. Four months before we would actually be going through anything. 
Oh how wrong we were. 
Having four weeks between our first Children's appointment and the one we had Thursday gave us time- nothing but time- to sit and think and contemplate and question and worry about everything. The thing is, no matter how much time we spent thinking and contemplating and questioning and worrying, all of this still somehow didn't feel real. Not to me at least... To me it was this foreign, abstract, crazy thing that all the doctors, OUR, doctors were talking about. I knew they were talking about us and about our baby but, really, who wants to embrace that? And, admittedly, I think my new sense of realism that I have gained after meeting with Mr. Surgeon, is probably still no where near what reality will actually be. 
I'm not sure what we expected to happen when meeting with Mr. Surgeon. My guess is, having been around nothing but mostly positive, optimistic-ish, on the verge of sensitive, caring doctors, we were caught off-guard by the blunt, full disclosure, no sugar coating conversation we had with the surgeon. And while we'd had a taste of Mr. Surgeon before, thanks to him being the one that operated on Athan's heart, we'd apparently forgotten exactly how his bedside manner was. 
This is not to say he was unprofessional or anything like that. He said the same things our  cardiologist has said (although, maybe slightly less friendly) regarding risks and survival rates and the fact that basically everything has to go "right" for this to all work out the way we want it to. He explained the surgeries to us in the same way our cardiologist did. He explained in detail the importance of recovery, what she'll look like after surgery (although nothing can really prepare us for that) and to plan for at least 6 weeks recovery in the hospital. He didn't really tell us anything we hadn't already heard. The thing is, somehow, something about him, maybe just because he will be the one cutting open our little girl, made this all so damn real! And we weren't ready for that. Not that day, not today, not tomorrow. For me, it will only need to be real when "it" is actually happening, but until then, Mr. Surgeon has stirred something inside of me... something that is little by little making me accept that this is us, this is what we're going through. Something that is screaming out that this is our life.