CHD awareness week is coming

First things first, check out this amazing pinterest board - The Faces of CHD - Congenital Heart Awareness Week Feb 7-12, 2012 - it links to stories/blogs of CHD warriors & their families.

 

Norah

Norah was born with heterotaxy, an ASD, VSD, interrupted IVC w/ azygos continuation and a touch of pulmonary stenosis, polysplenia (she has 2 functional spleens), an intestinal malrotation and some minor hydronephrosis. Norah has had 2 surgeries in her short life - the first, a Ladd's procedure, was when she was 5weeks old to correct her intestinal malrotation, and her second, the open heart surgery (1st post, 2nd post), was when she was 9.5months old to close her VSD.
We were fortunate enough to know she'd have a CHD before birth. It was a tough to go through the pregnancy not knowing what would be wrong with her (bad news started when I was about 12w along), but always loving her. She was, and IS, perfect. It took a long time to remember that she was perfect (at least to me) before I knew about her conditions and that they didn't change anything. She was still the baby I loved, she'd just have a more colorful story than some.

How to describe Norah... she's a ball of love, energy & chaos, always kissing or climbing or finding a way to get into something! There isn't a day that goes by that we don't find her in some strange spot (like the oven of the play kitchen) or acting like a complete wild child (like climbing through the bookshelf or hanging out on 'end table island'). She loves her family, especially her big sister and everything she does, and her pets. Norah hates when she's awake & Jordan is asleep - it's like a punishment I swear. She lights up the room with her smiles and makes you cringe with her screeches. It's go, go, GO from the moment she wakes up until the moment she falls asleep for the night.

She's just a baby like any healthy baby. Ok, I guess she's a toddler now, she is 14 months old and running & climbing everything, I'm just not ready to admit it.

this is the perfect photographic description of Norah - she does.not.stop.

showing off her scar 3 months after surgery

she's also a fashion designer

thought I was kidding about the play kitchen, weren't you?

plague is back. back again. RUN!

oh my. It's been a loooong week.

Jordan started coming down with a cold on Sunday. She had a touch of a runny nose on Saturday, but Sunday, you knew the cold was imminent. On Monday, she sounded cruddy before lunch and after nap, she couldn't pass air. I brought her straight to the pedi for a few albuterol treatments and then, we took a rescue to the hospital.

Sounds fun already, doesn't it?

Jordan did great with the rescue & getting to the hospital & even sitting in the ER until around 1am. She was a rock star & I'm so proud of my girl for being so good. It really hit her in the morning that we were still at the hospital and she woke up begging to go home - broke.my.heart.
We used her pulse ox lead as a leash whenever we went potty & she was a pretty well behaved puppy :) She let the doctors and nurses check her out (mostly) without a fight - hey, you can't blame the kid for getting a little fussy at 11pm when bedtime is typically 8 and she can't breath and yet another dr is telling her to take a deep breath. We watched rugrats on Nick's kindle, and waited and waited and waited to get the final word if she'd be spending the night & when she'd get to go to her room.

side note: BIG THANKS to the hubs for getting out of work & coming up to the pedi and then coming down to the hospital to sit with us & BIG THANKS to my Mom for watching Norah while we sat with Jordan.

One night was more than enough to spend at Hasbro - I still don't like that place. It was slightly better than the last stay, but I was irritated to be told that J has a history of asthma so many times. No, she doesn't. She had bronciolitis in March of 2011 and (as of then) wheezing and shortness of breath with a cold. They just pushed an asthma diagnosis on her, when in fact she has pneumonia, a double ear infection (I was told a couple times that her ears were clear, yet her pedi, before transfer, saw some fluid, as did I in the ER when I looked) and an enterovirus.

Norah has a cold, too, and I'm very hopeful that it doesn't turn for her. She's been a champ with it and is still just as energetic as ever. Jordan was almost keeping up with her thanks to some help from prednisolone & albuterol!

Sadly, the plague hit Nick overnight. He's miserable, but trying to make the best of it.

So there's the update. I'm buying some stock in kleenex & charmin & Yellow Tail.

so there's this guy...

I kinda like him.

I never say enough good things about Nick. I don't. I tend to overlook (maybe even forget sometimes) all the things he does that are great, especially when I'm in a mood.
I shouldn't. I should tell him more and maybe make a list or something so I can look back and be all, 'yeah, he does take out the trash when I ask him' or 'I never wash the dinner dishes when he's home, that's pretty sweet right there' so that I can/will remember more.

So yeah, this revelation brought to you b/c...
I told J she needed a shower (she starts dance class tonight) to wash her hair, and he's got her in the tub. I didn't ask him to, and there is no unwritten rule in our home that he handles cleaning the children, but he's in there, getting her cleaned up so that tonight, I can get all the glory of watching her take her first dance class (that she's been dying to take since she could move. ok, maybe just for the past 3 or 4 months).

He does things like this a lot. The girls may not run to him first, but they know Daddy will always be there for them and I know, that he'll not only be there, he'll do a damn good job being there. He may not always say it, but you can see that when our girls smile at him, or call for him, he's in his glory.

I love watching him with the girls. Watching them test him and then being so pleased when he's passed (usually by figuring out what movie or beverage they want rightthisverysecond!) and the look on his face when he's just "got it". This parenting thing isn't as scary as he thought it would be & I love seeing him enjoy it.

oh yeah, I definitely like him. My girls have a great Daddy  :)






OH! I should probably update on Jordan & the potty. Things are better. MUCH, MUCH better.

so done with potty training.

I HATE potty training.
HATE IT.
HATE IT!
I would rather have another c-section, sans medication, while wild dogs gnaw on my legs & throat kinda hate it.

I'm not good at the potty training thing. J had 2 big accidents today & I lost it. I yelled, I apologized, I cried when she couldn't see me. I'm just done. I give up. I'll buy her some depends and teach her to change her own ass... if I can get that part right, then I have a strategy for N.

Today, I'm a super sucktastic mother & I know it & accept it. Here's hoping tomorrow is better, b/c quite frankly if it isn't, I may run away from home.
to a private island.
that's warm.
and full of comfortable beds that I can nap in whenever I want.
and I won't leave a forwarding address.

kidding.
really, kidding.
no, not kidding at all. I'm running, fast. Get your camera, it's going to be like Halley's comet - one of those rare once in a life-times sight.


here's hoping for a better tomorrow -- a day like yesterday where J was AWESOME & went potty on her own all day & was agreeable & helpful & a little stepford child would be great, but really anything better than today would be perfectly acceptable.