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Tuesday, August 30, 2011

surgery is scheduled


so we have a date.
I'm scared and excited all at the same time.
It feels weird to be excited about it, but I am. I'm excited to see her grow and to watch her body relax a little. It handles the extra stresses with such ease - it deserves to relax for a couple decades.

I know my girlie is going to come out on the other side wonderfully. I KNOW it because, that's Norah. She makes everything look easy with her strength & ambition to accomplish (and bulldoze) everything in her way.

I'm glad she won't need any catheter procedures, that feels like a million pounds of bricks lifted off my shoulders - like as long as her valves are good, this repair will be a cakewalk.

I'm so proud of my Buglet - she doesn't even know how brave & strong she is, but she's an inspiration and I strive to be just as strong.

and that's that. Surgery is in 15 days. Let's do this!

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Saturday, August 27, 2011

I've been hiding the consult results from the blogging world.

I guess I just wanted all the information before I put it out there, in ONE place at ONE time.

I don't have all the information.

What I do have is:
she weighed 15lb 2oz on Monday & 15lbs 9.5oz on Tuesday (at the pedi).

sedation went well - very little fighting off sleep before the echo, but a whole lot of fighting it on the way home.

Her valves look good. Normal. There's possibly some narrowing, but not as severe as it tends to appear b/c of the size of her VSD and extra work that causes.
She will not need a catheter procedure before open heart surgery.

She will need open heart surgery. Soon. The size of her VSD is about 1cm long. Her entire ventricular septal wall is maybe 2.5cm long. That's a big hole.
Hopefully the surgery will be done by the middle of September.



so there it is, a simple update until I have more details and a scheduled surgery.

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Thursday, August 18, 2011

why me? why not me?

I think I've touched on this before. I don't know - I've been thinking about it for ages (since I was pregnant) in one way or another, so I'm sure I did, somewhere. I should really take some time to tag these posts. Ok, that'll be a task for another day, but not right now, b/c I actually do have a point and a post that goes with it.

I had my appointment with the counselor yesterday and we were talking about the upcoming consult and how I felt and blah,blah,blah. So she mentioned how someone had once said to her they stopped feeling and asking 'why me?' and started to ask 'why NOT me?' which led to the conversation of how I'm a crap-tastic Catholic, and yet, I still believe that God won't give me/us anything we can't handle and it took awhile to get there but I did and I just have to get back there and then it clicked. I had stopped asking why me and started asking why NOT me months ago.
holy crap, if you could follow that, I applaud you. And, if you know me in real life, I'm sure you read it in the same rushed voice I wrote it in and then, you get a standing ovation b/c simple applause would not be enough.

I used to read, or hear, watch shows/news reports about children with health problems, or that were born prematurely or had some handicap/hindrance (real or maybe just assumed, by me & others? idk anymore) and I'd feel badly for the child & their families. I think most of us do, even if it's just a fleeting, passing 'how awful' or 'I'm sorry' ir 'I can't imagine' -type thought.

Then, I had a baby that went to the NICU. In my opinion she didn't need to be there, and if she actually did need to be there, her care should have been handled differently upon her arrival there. I remember all the little and needy babies and thinking Belly was taking up a space that one of them needed so much more than she did.
There was a father one night that told me he didn't feel bad that his newborn was there b/c he needed to be and they had a care plan in place, but he felt bad that mine was b/c there was no plan for her there. She was just *there*, showing no issues, not dropping her oxygen (which is why she was sent) and they kept keeping her, waiting for her to have a problem. I remember thinking I already felt bad enough for myself, for the same reasons actually, but I didn't know what to say. I told him his son was beautiful and I hoped his latest round of blood work was clear and asking if I could check in on him when I came into the pod the next day. It was a humbling to be told by the parent of a critical infant that he felt sorry for me & my healthy one, but not for his. He was scared and worried, but didn't feel bad about being there. It was the best place for his baby to get care and the best option he had for survival.

It took me a long time to understand that feeling, and honestly, I still didn't *completely* get it.

THEN, I had a baby with health issues that had to go directly to the NICU. No transfer, no time to cuddle & show her off, just a couple minutes to get a good look and then off to another floor for testing. I didn't feel bad about the Buglet gong to the NICU. I remembered the father from WIH NICU talking about having a plan. We had a plan this time. I felt so much more prepared for our stay and when I got up to see her, I didn't feel badly for the other babies - not the super tiny ones or the ones that'd just had surgery or even myself. This was where they all needed to be to get the best care possible. They all needed to be there - whether their parents thought they did or not (and I think we all know, I got to the point where I didn't think Norah did... BUT I wasn't alone in thinking that, her drs knew she didn't need to be there anymore as well).

It was in the 2nd NICU that I realized: the NICU was just a part of our story. It wasn't the best part, but who has only perfectly happy stories of their lives? We have good and bad memories from both NICUs.

I have a baby with heart issues. So what? Is she any less Norah? Nope. Do I love her any less? Not an ounce. She's perfectly Norah. She wouldn't be *MY* Norah without a wonky bowel, holey heart, extra spleen and misplaced liver.

Some kids have birthmarks or blue eyes or wear glasses or braces - it makes them who they are. That doesn't mean they're less than perfect. It's just who they are, and you don't love them any less b/c of it.

so there's a hella long back story to say - why NOT me?
Why shouldn't this be a part of our story? We're fortunate enough that I can stay home with the girls, which means I can be flexible with Bugga's appointments and not have to worry about losing my job or having irked co-workers b/c of the amount of time I'd miss. We're blessed with family nearby that love us and are always willing to lend a hand. They're there whenever I need a sitter for whatever reason, or just to listen to me whine about my life (hey, we all do it - no matter how happy or lucky we are; we're all human). We have excellent health insurance and a growing knowledge of how it works. We have the resources and desire to learn more about everything that's been thrown at us. We love our children unconditionally and will do any & everything we can for them. Even when that means letting them fail.

Yeah, we've been dealt a suck hand if you're looking at it from the outside, but from the inside, this hand looks like a winner.

Why me, why us, why her... because we can. We can learn and teach and handle it. I'm not saying it isn't overwhelming (often), but we can do it when others may not be able to. So, why not me?

the is NO ESCAPE from the kiss of a Norah-monster!



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Wednesday, August 17, 2011

the consult has been scheduled

next Monday, August 22nd, Norah bug will be 9 months old. She will also be meeting with a new cardiologist who'll decide if she moves onto surgery or we wait and watch a little longer.

I can't believe she'll be 9 months old.
That's a far cry from "probably won't make it to term"

My little girl is full of big things. She can (and WILL) do any and everything.

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Wednesday, August 10, 2011

better today

the shock of actually hearing that Norah will (MAY) need surgery soon has worn off.

She's still Norah. I'm still Mumma. I'll still do anything and everything I can to make sure she's as healthy & happy as she can be - even if I don't like what has to be done. I don't think surgery is something to take a stand on. At least not this surgery. Just like her Ladd's I knew it was in her best interest and that's what OHS is as well. It isn't like I'm getting her a boob job or something.

We'll get through it. She's a spitfire and will come out on the other side of the next knife fight just as well as she did the last.


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Tuesday, August 9, 2011

cardi day sucked.

Maybe sucked is a bad word for it.
I knew a day like today was coming, we've been waiting and preparing for it since before Norah made her debut.

The left side of Norah's heart is enlarged. It's stretching out. There doesn't seem to be any change in her VSD or her pulmonary valve stenosis, it possible that her mitral valve stenosis is *slightly* worse, but with the amount of blood pushing through, that really wasn't a surprise to me at all.

We're waiting on a call to tell us when our next appointment will be, It'll be the first consult with Children's Hospital Boston. At that appointment, we'll find out if it's time to consult surgery. Surgery will be an open heart procedure that will repair her VSD and then decide if her valve need anything done. That decision won't be made until after the VSD is patched - it'll be made while she's still open.

I'm so angry and hurt. Not at, by or b/c of Norah, but b/c I let myself get too comfortable with her heart. I really started to let myself forget just how serious her issue is, b/c it's common.
Cancer is common. Doesn't make it any less serious.

I don't know. I just need to get through her next appointment before I worry about another surgery, I guess. I just don't know how to handle the news. I KNEW it was coming. I EXPECTED it months ago. WHY am I so surprised that it IS happening?

I just want to forget about today.

oh, and before I forget, stats: oxygen 98%, height 26 1/4", weight 14lbs 11oz. She has trouble putting weight on. Just one more thing to work on I suppose. Maybe counting her calories will keep me distracted until the follow up.

Here's hoping.

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Monday, August 8, 2011

AAAAAAHHHH GET DOOOOOOOOWN!

CHILD! IF YOU CLIMB ONE MORE PIECE OF FURNITURE ONLY TO GET STUCK ON TOP OF A HIGHER PIECE AGAIN, WE WILL NOT HAVE IT ANYMORE!
try me, Norah. go ahead, try me. You will have a crib & the rest of us will sit on pillows on the floor and you will have NOTHING to climb on. C'mon, baby. Test Mumma and see what happens.

OMGWTFBBQ! If the climbing doesn't stop, I will lose (what's left of) my ever loving mind.

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Thursday, August 4, 2011

went to see the aminals

We went back to the zoo yesterday & the girls had a blast. Ok, Jordan had a blast, Norah enjoyed playing at lunch time. Well, she *is* still young, and I don't think I'd be thrilled confined to a stroller for the day while my sister got to run around all happy either.

At this point, I think I've got nearly enough photos to put together an animal book for the girls. They both enjoy picture books, and I think it'd be neat to have one with animals they see on a regular-ish basis.

she did like seeing all the people while she strolled
so happy :)



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