tag:blogger.com,1999:blog-21608755309928936892024-03-13T17:48:52.330-04:00Belle and the BugletMaking Jordan a big sister was more difficult than expected, but Norah is worth it.Unknownnoreply@blogger.comBlogger122125tag:blogger.com,1999:blog-2160875530992893689.post-74348380682295264382012-06-06T14:42:00.000-04:002012-06-06T14:43:49.727-04:00Vivian left her tiny footprints on our heartsand on a card for us.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiiDqonVVBdjQRyk12xAoETa-ZwcR5dPvkZIMr8jUDlEzuDTycfkQuUti51e37ZhAJKe08gGnD-D9ebsEoejVnWRf5Qv5Ak2MLmsnEFwLJosyKCN5B27tbV0txAL2oM_FhJ8FZy1bnmKpb/s1600/DSC08719.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiiDqonVVBdjQRyk12xAoETa-ZwcR5dPvkZIMr8jUDlEzuDTycfkQuUti51e37ZhAJKe08gGnD-D9ebsEoejVnWRf5Qv5Ak2MLmsnEFwLJosyKCN5B27tbV0txAL2oM_FhJ8FZy1bnmKpb/s320/DSC08719.JPG" width="320" /></a><br />
<br />
we miss her so very much already.<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2160875530992893689.post-82417049169949250802012-05-30T05:31:00.003-04:002012-05-30T05:31:25.767-04:00Vivian Eve diedYesterdays ultrasound revealed to us that SHE passed.<br />
<br />
Telling Jordan has sucked more than I could have imagined. She was so very excited to have a new sibling and hasn't had any exposure to death. <br />
<br />
I'm feeling pretty numb about a lot of things.<br />
I'm feeling pretty angry about a lot of things. <br />
I feel like she knew how much she was loved and wanted. <br />
I feel like I let her down.<br />
I feel like I let all who loved her already down.<br />
I want, and hope, I can get some answers to why this happened. <br />
<br />
I love Vivian Eve, and I miss her already. <br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2160875530992893689.post-54908257192276663062012-04-12T20:56:00.000-04:002012-04-12T20:56:59.434-04:00what d'ya know - it's been about a month... again.I NEED TO GET BETTER ABOUT THIS!<br />
I open the page a few times to post, but get side tracked and then it's late and I'm tired and choose sleep. <br />
<br />
Always. <br />
<br />
Sleep always wins. It always has and it always will. I LOVE SLEEP. <br />
<br />
<br />
Anyway, the girls are good.<br />
J still loves dance.<br />
N still loves J. And Tangled & all things Tangled - absolutely adorable. <br />
Newb seems to be doing well- causing some random spotting, and I'm pretty sure reading all the notes that their sisters left scrawled across the walls of my ute telling future residents all the ways to make trouble while on the inside. <br />
hmmm. I wonder if I'm a little paranoid... <br />
OR (more likely)<br />
my kids are <i>that</i> smart and can read & write as <i>fetuses</i>. <br />
AND<br />
that would explain why my 5'<strike>2"</strike> :sigh: 1.5", 1none-ya-business lb frame has such big babies - b/c they're reading and writing & mindlessly <strike>stealing my food</strike> eating.<br />
<br />
yeah... I'm paranoid. I'm sure that's it.<br />
<br />
I go on Monday for the NT scan and am really worried about it. I shouldn't be, but I am, so I'll relax after Monday (maybe).<br />
<br />
Jordan also goes back to get her eyes checked again on Monday. I'm going to talk to the dr about the surgery - we don't want to do the drops and she takes the patch off her glasses and we really think that it's the best option for her. I don't like that we feel like it's the best option, but (and I've learned this a lot and I still think it's the lamest part of being an adult/parent) as a parent, you don't get to always LIKE what's best as long as you're doing what is genuinely in your childs best interests. lame, I tell ya. lame.<br />
<br />
and that's about all I have to say right now, b/c I am tired.<br />
hey, it's honest. <br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-1501139653432572892012-03-17T20:27:00.000-04:002012-03-17T20:27:27.380-04:00examples of awesomeness *Jordan edition*Norah is <b>TROUBLE</b>. Yes, it needed to be capitalized & bolded. She's sweet & fun & a ball of love, but the kid is trouble.<br />
Today, she was dancing with my ipod. <br />
<br />
Jordan was going pee.<br />
<br />
<br />
<br />
You see where this is going, don't you? <br />
<br />
<br />
<br />
Yes, my ipod took a dive, WHILE Jordan was peeing.<br />
<br />
Jordan JUMPED off the toilet (it sounded like she fell & I jumped up to go to her), grabbed the ipod out & ran it, dripping, to me to tell me what Norah did. Then announced she had to finish getting the pee out of her body and walked away muttering 'that trouble bubble, I just wanted to pee by myself!'<br />
<br />
The ipod seems to have survived it's quick dip, although I am leaving it in rice overnight just to play it safe, but my point it, <u>Jordan is awesome</u>.<br />
She stopped going to the bathroom to save my ipod. Now, I wish I could say it's b/c she knows I love it, but I don't, so I honestly think it's b/c <i>she</i> loves it and if it went away so would her kitchen dance parties (and bubble wrap app).<br />
<br />
------------- <br />
<br />
Norah, being the explorer that she is, has been taking on the dining room table & chairs. We have a pub height set, so it is a climb when she gets up there - which she does amazingly quickly.<br />
<br />
After dinner she climbed up into Jordan's seat to finish J's juice box. J pushed her in to keep her 'safe & sound' and told me she was taking care of her so that she wouldn't get into trouble. <br />
<br />
-------------<br />
<br />
Jordan also feeds the pets every night. It's her responsibility and she's pretty awesome at it and never forgets.<br />
<br />
<br />
<br />
<br />
told you my kids were pretty awesome. <br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-45140722409198616502012-03-15T20:54:00.000-04:002012-03-15T20:54:08.447-04:00what d'ya know - it's been over a month, again.So it's been over a month, again, since I've written.<br />
<br />
I guess I just don't have much to share, I should, b/c my girls are awesome, but I just take it for granted that our day-to-day is usually pretty good. Norah is 6months post-op (yesterday) and doing great. Jordan is preparing to turn 18 and run away to culinary school (sheperoni pie & hot dogs are her current specialties).<br />
<br />
J & N play together all the time. They're nearly inseparable, but when they are apart, they always know what the other one is doing. It's a little eerie at times. Like, I can be cooking with J and say I wonder what N is up to & J will tell me exactly what she's doing (yes I check & J has always been spot on). I think N just has some super human type hearing b/c she hears J the second she wakes up & comes running to let me know.<br />
<br />
We bought a couch last week. The girls enjoyed climbing all over the showroom & running from display to display. The girls were busy, but well behaved & I was proud of them. I can't wait until the new couch gets here & they can't take to back cushions off to jump on. <br />
<br />
Oh, yeah, and I'm pregnant again. Due in October, so if this one decides to arrive that month, my kids birthdays will be October, November & December... talk about making the end of the year expensive!<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-80447357793068224832012-01-28T17:09:00.001-05:002012-01-28T17:11:18.237-05:00CHD awareness week is comingFirst things first, check out this amazing pinterest board - <a href="http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/" target="_blank">The Faces of CHD - Congenital Heart Awareness Week Feb 7-12, 2012</a> - it links to stories/blogs of CHD warriors & their families. <br />
<br />
<div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs_Nbzc844Lyhn_2Yz2vm0-ltwmpkE60SQh6WtleV47Nva0eg0SCVYQYYinh6bd2u6EgjG8f2cgkENs_BOKLZT2Q5SViDwINpcprWU8-QqEAj_1nBZT-zpl5J0XZOISnqMVGKB0bN9uq9_/s1600/DSC07831.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs_Nbzc844Lyhn_2Yz2vm0-ltwmpkE60SQh6WtleV47Nva0eg0SCVYQYYinh6bd2u6EgjG8f2cgkENs_BOKLZT2Q5SViDwINpcprWU8-QqEAj_1nBZT-zpl5J0XZOISnqMVGKB0bN9uq9_/s400/DSC07831.jpg" width="275" /></a></div><div style="color: #cc0000; text-align: center;"><span style="font-size: x-large;"><b>Norah</b></span></div><div style="color: #cc0000; text-align: center;"><br />
</div>Norah was born with <a href="http://www.wisegeek.com/what-is-heterotaxy.htm" target="_blank">heterotaxy</a>, 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 <a href="http://belleandthebabe.blogspot.com/2011/01/surgery-pacu-picu-floor-its-long-post.html" target="_blank">first</a>, a Ladd's procedure, was when she was 5weeks old to correct her intestinal malrotation, and her second, the open heart surgery (<a href="http://belleandthebabe.blogspot.com/2011/09/while-waiting-is-fresh.html" target="_blank">1st post</a>, <a href="http://belleandthebabe.blogspot.com/2011/09/rest-of-surgerychb-this-will-be-long.html" target="_blank">2nd post</a>), was when she was 9.5months old to close her VSD.<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://images5a.snapfish.com/232323232%7Ffp63563%3Enu=3253%3E899%3E242%3EWSNRCG=37477:559632%3Cnu0mrj" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="http://images5a.snapfish.com/232323232%7Ffp63563%3Enu=3253%3E899%3E242%3EWSNRCG=37477:559632%3Cnu0mrj" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">this is the perfect photographic description of Norah - she does.not.stop.</td></tr>
</tbody></table><br />
<div class="separator" style="clear: both; text-align: center;"></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://images5a.snapfish.com/232323232%7Ffp635%3C8%3Enu=3253%3E899%3E242%3EWSNRCG=374779%3C23432%3Cnu0mrj" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://images5a.snapfish.com/232323232%7Ffp635%3C8%3Enu=3253%3E899%3E242%3EWSNRCG=374779%3C23432%3Cnu0mrj" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">showing off her scar 3 months after surgery</td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="http://images5a.snapfish.com/232323232%7Ffp63563%3Enu=3253%3E899%3E242%3EWSNRCG=37477:559632%3Cnu0mrj" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" height="320" src="http://images5a.snapfish.com/232323232%7Ffp63584%3Enu=3253%3E899%3E242%3EWSNRCG=375479385732%3Cnu0mrj" style="margin-left: auto; margin-right: auto;" width="214" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">she's also a fashion designer</td></tr>
</tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZjntiYtXeBagPbpAT_BvJ7KAjjqU3NdsFoaXIZUgum4o_RB-XyRh1GQY_CHY-dZMoy7Wu7u3NCs8lI7JFPPzKJ6sswr0PYUOl-HmThtKvxLP-zviJT70vbn_pFUZdyHeQWe5J0XFa1gjh/s1600/IMAG0171.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZjntiYtXeBagPbpAT_BvJ7KAjjqU3NdsFoaXIZUgum4o_RB-XyRh1GQY_CHY-dZMoy7Wu7u3NCs8lI7JFPPzKJ6sswr0PYUOl-HmThtKvxLP-zviJT70vbn_pFUZdyHeQWe5J0XFa1gjh/s320/IMAG0171.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">thought I was kidding about the play kitchen, weren't you?</td></tr>
</tbody></table><br />
<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-30398081581479058112012-01-28T13:32:00.000-05:002012-01-28T13:32:52.197-05:00plague is back. back again. RUN!oh my. It's been a loooong week.<br />
<br />
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.<br />
<br />
Sounds fun already, doesn't it?<br />
<br />
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.<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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!<br />
<br />
Sadly, the plague hit Nick overnight. He's miserable, but trying to make the best of it.<br />
<br />
So there's the update. I'm buying some stock in kleenex & charmin & Yellow Tail. <br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-15832912866994225312012-01-11T14:24:00.000-05:002012-01-11T14:24:42.617-05:00so there's this guy...I kinda like him.<br />
<br />
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.<br />
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. <br />
<br />
So yeah, this revelation brought to you b/c...<br />
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).<br />
<br />
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.<br />
<br />
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.<br />
<br />
oh yeah, I definitely like him. My girls have a great Daddy :)<br />
<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a><br />
<br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">OH! I should probably update on Jordan & the potty. Things are better. MUCH, MUCH better. </span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-42121240251319649452012-01-04T14:49:00.000-05:002012-01-04T14:49:40.506-05:00so done with potty training.I HATE potty training.<br />
HATE IT.<br />
HATE IT!<br />
I would rather have another c-section, sans medication, while wild dogs gnaw on my legs & throat kinda hate it.<br />
<br />
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.<br />
<br />
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.<br />
to a private island.<br />
that's warm.<br />
and full of comfortable beds that I can nap in whenever I want.<br />
and I won't leave a forwarding address.<br />
<br />
kidding.<br />
really, kidding.<br />
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. <br />
<br />
<br />
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. <br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-62378146902105754332011-12-12T21:58:00.000-05:002011-12-12T21:58:52.979-05:00WE ARE STILL ALIVE!<div class="separator" style="clear: both; text-align: center;"><a href="http://images5a.snapfish.com/232323232%7Ffp6357:%3Enu=3253%3E899%3E242%3EWSNRCG=373553:23332%3Cnu0mrj" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br />
</a></div>I suck at blogging.<br />
I see that, I do. I still want to be better about it, but, um, I suck at blogging.<br />
<br />
So, quick recap:<br />
Norah is a year old.<br />
Norah IS a YEAR old!!<br />
NORAH IS A YEAR OLD!!!<br />
<br />
That baby that wasn't expected to make it, is a year old. And healthy and funny and happy and a giant ball full of mischief. She's such an imp! She's gaining weight and loves food and our pets, and her Daddy & Mumma, and most of all, her sister. She hates to be away from her sister and when she wakes up first, holds onto the monitor and stares at it until Jordan wakes up. She still gets so excited outside the door and when we go in, she yells "DAH-DIN!"<br />
<br />
Jordan is still an AMAZING big sister. She has so much patience with her. There are times when she's telling her no, or screeching that she doesn't want a Norah right now, but within a minute of saying it, she's sitting with her and helping her do whatever it was that caught Norah's attention in the first place.<br />
And, Jordan will be 3 this weekend.<br />
On Sunday.<br />
3.<br />
HOW DID THAT HAPPEN?!?<br />
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I love my girls. I can't imagine a day without them and am so blessed to see them grow and learn every day. I'm a bit of an emotional mess over the birthdays - I can't fathom that my babies are 1 & 3. I just can't. Even when J tells me things like "I needa go to a real doc-or because my butt is cracking. IT'S REALLY CRACKING A LOT!" or when N climbs up stairs of runs full speed across the room & then scales the couch.<br />
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and, I might as well get some pictures up since it's been so long :)<br />
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<tr><td style="text-align: center;"><a href="http://images3a.snapfish.com/232323232%7Ffp73448%3Enu=3253%3E899%3E242%3EWSNRCG=373553897932%3Cnu0mrj" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="http://images3a.snapfish.com/232323232%7Ffp73448%3Enu=3253%3E899%3E242%3EWSNRCG=373553897932%3Cnu0mrj" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">this is so them. Laughing and snuggling and just loving each other :)</td></tr>
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<tr><td style="text-align: center;"><a href="http://images5a.snapfish.com/232323232%7Ffp6354:%3Enu=3253%3E899%3E242%3EWSNRCG=373553:25332%3Cnu0mrj" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="http://images5a.snapfish.com/232323232%7Ffp6354:%3Enu=3253%3E899%3E242%3EWSNRCG=373553:25332%3Cnu0mrj" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">she's such a ham when she wants to be!</td></tr>
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<tr><td style="text-align: center;"><a href="http://images5a.snapfish.com/232323232%7Ffp6357:%3Enu=3253%3E899%3E242%3EWSNRCG=373553:23332%3Cnu0mrj" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="http://images5a.snapfish.com/232323232%7Ffp6357:%3Enu=3253%3E899%3E242%3EWSNRCG=373553:23332%3Cnu0mrj" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">quick! snap a pic b/c she's still!!!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://images5a.snapfish.com/232323232%7Ffp635%3C2%3Enu=3253%3E899%3E242%3EWSNRCG=37354:455732%3Cnu0mrj" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://images5a.snapfish.com/232323232%7Ffp635%3C2%3Enu=3253%3E899%3E242%3EWSNRCG=37354:455732%3Cnu0mrj" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">one of my absolute favorites. N actually wiggles herself into J's arms and then gets comfortable. </td><td class="tr-caption" style="text-align: center;"><br />
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<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-26302037418328592882011-10-11T21:41:00.000-04:002011-10-11T21:42:29.606-04:00finally updating a little moreI've fallen off the blogging wagon lately. I WANT to blog, I do... I just don't. I've found other things to fill my free time, but I want to get back to blogging and am going to attempt to make it fill some of my free time.<br />
The girls are doing great.
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<br />
Jordan is still so in love with her sister and Norah can't get enough of her sister either so, for the most part, it works out. Jordan does like some time away from Norah now & then, but she can't turn her away for long. She ALWAYS has to share whatever is making her happy, even if she turns Norah away at first, and that makes me smile daily.
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Norah is chunking up. Girly is getting some meat on her bones! At the cardi last week, she'd gained 1lb, 4.8oz in 2 weeks. CAN YOU BELIEVE THAT?!?!?! It's been such a huge struggle to get the weight on her and now she's turning into a little porker. I LOVE IT!
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Both girls, while <i>extremely</i> trying at times, make my days so much more than I ever dreamed they could be. How could I not love these crazy butt babies?!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ3DpgdVdoX9tx9qqdpdTtM2-JSP4biemM2dYNE50x9mZWlao2pu2D5kHzXNEo0MWpmF0y8oi0DH9w8thc6FlRi3K4o-sSy5YduwwNkeAULscy0fJgcUQlkeuOafy4GtGdd_wKrqoSiDqF/s1600/DSC06164.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ3DpgdVdoX9tx9qqdpdTtM2-JSP4biemM2dYNE50x9mZWlao2pu2D5kHzXNEo0MWpmF0y8oi0DH9w8thc6FlRi3K4o-sSy5YduwwNkeAULscy0fJgcUQlkeuOafy4GtGdd_wKrqoSiDqF/s320/DSC06164.JPG" width="214" /></a></div>
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<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-65745136134777002862011-09-24T21:06:00.002-04:002011-09-25T16:20:25.360-04:00the rest of surgery/CHB (this will be a long one)now that we're over a week out, I really want to get it down while it's still fresh(ish).<br />
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I've got to start out by saying that the stay at CHB was like the weirdest hotel stay ever. We got to know a few people on the floor with us and learn about some of the kids while we were in the CICU. We "went out" for meals mostly or brought food back to our room (once she was on the floor, not in the CICU). Norah especially liked the ham & cheese croissants from Au Bon Pain -- did you know ham is not "age appropriate" for a nearly 10 month old (she IS 10 months old now :) )? I learned that our last day there when I tried to order her a ham & cheese sandwich from room service.<br />
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I guess I should start at the beginning.<br />
When we got to see her, she looked great. Yes, she had tubes & wires & there were monitors everywhere, but Norah looked so good. It was a little jarring to see just how good she looked. I guess I was expecting to see her more like after the Ladds, where she didn't look baaaad, but she didn't look good either. She looked so, so good. Her coloring was great, she was mostly comfortably resting (I'll get to that in a second) and we got word that her blood sugar was perfect, on it's own. It did spike a little and she got some insulin, but she fought that and eventually they stopped it for an hour & she brought her glucose levels right back into normal range.<br />
***Did I tell y'all that we oped for a blood sugar/insulin study? Anyway she was in the test group, so she was able to get insulin when her glucose levels spiked after surgery, whereas a typical pedi patient would not. In adults, it's standard practice to give insulin after surgery to correct glucose levels. CHB & several other hospitals are 3+ years into a study to see if pedi patients have the same results as adults (easier/faster healing time)***<br />
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She was comfortable, but no longer completely sedated when we got to her. She needed to be sedated until the breathing tube came out, and that had to stay in until the oozing from her chest tube slowed down. She had a lot of oozing and ended up getting a unit of platelets around 6:30 on Wednesday night & then a unit of blood over night. The breathing tube came out a little after 7:30 Thursday morning. Oh, I was talking about the comfort level -- yeah, she didn't seem to be in pain, but she was uncomfortable and I think it was b/c of her position. She still sleeps all curled up in the fetal position most of the time and being stretched out, on her back, unable to roll didn't agree with her. Norah got A LOT of versed & morphine (more versed than morphine) over that first night and finally got to a comfortable spot around 11pm.<br />
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That first day, after surgery, there was a couple taking a tour of the CICU and we were asked if we'd allow them to look at Norah. About 2 weeks prior, they'd learned that they were expecting a heart baby (tricuspid atresia) and they were trying to prepare themselves. I was instantly back to being pregnant and hearing that my perfect baby, wasn't perfect. I cried. I cried for people I'd never met & will probably never see again, just b/c I've been in those shoes and I know how terrifying it is and how much you love your baby and how much you want it to be perfect and how afraid of everything you are in the beginning. We let them into Norah's room without hesitation and I pulled myself together.<br />
They asked if she played.<br />
I laughed. All she does is play and torment her sister and get into trouble and bring so much joy to every day. She's such a typical 9 month old that the question caught me off guard. She does everything. <br />
She hugged her belly. He crossed his arms a little tighter and smiled.<br />
I remembered being in their shoes and how hard it was to smile in those days. How hard it was to be excited about the baby when you didn't know what was going to happen to them. To be excited about anything really.
<br />
I told them that their baby was perfect. Not the perfect they expected, but perfect in it's own way and as hard as it all is, it gets easier once you get to know your baby and all that makes them their own special perfect. I also passed along the web address to the babycenter heart board and told her how much of a help it was and continues to be for me while trying to learn all I can about Norah's heart.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyo2dmJeUOAqmuU9kd5V1zvlqVZzDicg18749czWMpHf1Oh25OHlYpmXSnmwPkr73Id9LphW5YQXVq5Rk6LwIlNE4SXqT2KCM_hLpdh60z4tDiwp7BscnDSdX5pKKZXLeoKtQLE0NWjrn_/s1600/DSC05844.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyo2dmJeUOAqmuU9kd5V1zvlqVZzDicg18749czWMpHf1Oh25OHlYpmXSnmwPkr73Id9LphW5YQXVq5Rk6LwIlNE4SXqT2KCM_hLpdh60z4tDiwp7BscnDSdX5pKKZXLeoKtQLE0NWjrn_/s400/DSC05844.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">with all her monitors & getting some blood - she does the vampire thing wrong.</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo8o_GbeqjvTPXFdZfhZUJcPVX8pXFQolA3suu9rux3frOI0MqcOtVcbfFP3eHm5UhTOIFepQtPchLKCr8Rid5U3ceCndIc6p34_1YSPtflfm9pCfcCZq3WTEM_5lnbNgAWOyLAIkwd10i/s1600/DSC05853.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo8o_GbeqjvTPXFdZfhZUJcPVX8pXFQolA3suu9rux3frOI0MqcOtVcbfFP3eHm5UhTOIFepQtPchLKCr8Rid5U3ceCndIc6p34_1YSPtflfm9pCfcCZq3WTEM_5lnbNgAWOyLAIkwd10i/s320/DSC05853.JPG" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pulse oximeter (just b/c I posted a pic of it after her Ladds :) )</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHSbyJ5u-8zsuiTL5hMbYZNhMA5W_alNw4z-sZ1jCA61R7M1eLK8bMxqjsdU9Ui2wkcdT18xz4kjtCbQrmzioT-5D9PmhzfjpiwR2GfhWddSUvEmJgTBRz65oPHrR71snlYsZYptCoO9m2/s1600/DSC05847.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHSbyJ5u-8zsuiTL5hMbYZNhMA5W_alNw4z-sZ1jCA61R7M1eLK8bMxqjsdU9Ui2wkcdT18xz4kjtCbQrmzioT-5D9PmhzfjpiwR2GfhWddSUvEmJgTBRz65oPHrR71snlYsZYptCoO9m2/s400/DSC05847.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">if you don't donate blood b/c you haven't been asked, consider this my asking you.<br />
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<tr><td style="text-align: center;"><br /></td><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo8o_GbeqjvTPXFdZfhZUJcPVX8pXFQolA3suu9rux3frOI0MqcOtVcbfFP3eHm5UhTOIFepQtPchLKCr8Rid5U3ceCndIc6p34_1YSPtflfm9pCfcCZq3WTEM_5lnbNgAWOyLAIkwd10i/s1600/DSC05853.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"></a><br />
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She made it through that first night without to many problems. She was uncomfortable on her back, we got her settled on her side and she rested for awhile.<br />
Her breathing tube came out a little after 7:30am on the 15th. A bit later her LA & RA lines came out (wires to measure the pressures of the left & right side of her heart), and we waited for her new crib & a her room on the floor to be ready.<br />
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We requested & got a "can't-get-out" crib b/c we know what she does at home and we didn't know what to expect while there. Norah liked being able to maneuver a little without the breathing tube and was able to drink some juice which she really, really enjoyed!<br />
Day 2 was pretty uneventful, except for when Norah saw Jordan on the computer. I had the brilliant idea to set up skype on the netbook & asked my parents to get it too. Yeah. Norah climbed over me, the arm of the chair and across the netbook to get her sister. I had no idea how to stop her & honetly don't know how I got her down. oops. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcT23oMB2X-RuJeg0mz16EPIJuNmytPe5ijG_EU9m49QsndT55B_MEz4pNYJQzdRLMqH-SbpRuovK_cGDdt1Qw6NO59E6eGHGopOv-BNyroxjCaOVPzahfcLYx-xc1HhtplFRgNK-VX3XH/s1600/DSC05866.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcT23oMB2X-RuJeg0mz16EPIJuNmytPe5ijG_EU9m49QsndT55B_MEz4pNYJQzdRLMqH-SbpRuovK_cGDdt1Qw6NO59E6eGHGopOv-BNyroxjCaOVPzahfcLYx-xc1HhtplFRgNK-VX3XH/s400/DSC05866.JPG" width="267" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">after she rearranged her crib to her liking before leaving the CICU</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKxBUi_H1hK8E3_k7GRD_dxJyj9ikQQfiKqAtKN_-dq7QYEarIGNbZNRsIXZW7TBm4v5ALW7wBgs5lvXV8_3zTdrDU9aPxK3okr16jBLJhYZiqr4JyZdJnE6qc2tijDoOTALGQrTIyXgKn/s1600/P9150052.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKxBUi_H1hK8E3_k7GRD_dxJyj9ikQQfiKqAtKN_-dq7QYEarIGNbZNRsIXZW7TBm4v5ALW7wBgs5lvXV8_3zTdrDU9aPxK3okr16jBLJhYZiqr4JyZdJnE6qc2tijDoOTALGQrTIyXgKn/s400/P9150052.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">resting comfortably</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Day 3, Friday the 16th, had us up bright & early for x-ray. Her film was clear :)<br />
Her chest tube came out that morning. Yeah, it wasn't fun. I felt so bad helping to hold her down for it, but was glad to get her up right afterward. I made all sorts of promises to her, like that I'd let her sleep how ever she wanted when we got back to her crib, in a sad attempt to make her feel better. She peed all over the treatment table. I wrapped her in a hospital towel (which, she loves. ALWAYS. She LOVES hospital towels, the kid is weird) and let her cuddle into it on the walk back to her room. Then, I let her nap, on her side, as long as she wanted. She kept waking to glare at me (I swear she would have flipped her shiznit had I repositioned her & thrown my promises right back at me) and then would snuggle in harder on her side and sleep. She took a good 2 hour nap.<br />
Then... it was time for her sedated echo. Crap. I KNEW she was scheduled for it and I still let her sleep right up until 20 minutes before. On the plus side, she didn't fight the sedation and slept peacefully through the echo. I kinda played the she's so tired angle and asked that her post chest tube x-ray be taken while in the cath lab. I don't think the nurse in the cath lab liked me much after that, but she called upstairs & got it cleared so Norah got her x-ray while she slept. She woke up about .4 seconds after it was done & we went back up to her room for the night.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5jR5ocEEpChkX06sraO8Uv6vqXEPepOeaVWbEcltDHUMbtKbJwqBNCM2bP-5rbbOUDxABWu6g8OQVoD0FDWcIfKVPVzmgGjHPh4RPX7NEP2zZrbM8oyjTIbQHQFsXLMvmp-bo_Z_HanVN/s1600/P9160058.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5jR5ocEEpChkX06sraO8Uv6vqXEPepOeaVWbEcltDHUMbtKbJwqBNCM2bP-5rbbOUDxABWu6g8OQVoD0FDWcIfKVPVzmgGjHPh4RPX7NEP2zZrbM8oyjTIbQHQFsXLMvmp-bo_Z_HanVN/s400/P9160058.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sans chest tube. pieced that I'm taking more pictures.</td></tr>
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Saturday she let us all know what she was thinking. She was mostly mobile, and since I wouldn't let her crawl around on the floor, she had to cruise her crib. She tried climbing it, eating it, opening it - you name it, she attempted it. She was eating real food now and there was no stopping her. I managed to get a high chair for her and just seeing it made her want food. The girl was packing it away!<br />
She got her pace wires out on Saturday with Mumma AND Daddy in the room. I think it made Daddy a little ill. He has no problem seeing other people in rough conditions, but seeing his baby girl doesn't agree with him (he's probably disabled pics while reading this post on his phone). And, Nick, I know you're not happy that I just shared that with the interwebz, but it's my blog, so there!<br />
Norah really was a champ through it all. I forgot to order her dinner though, so she got a special ham & cheese croissant from Au Bon Pain, which she devoured. She ate a lot of food from ABP on Saturday & Sunday since we popped in while we wandered the hospital and got little pastry snacks.<br />
Norah also decided to be a wild animal that night. She was crazy chasing me around the crib and just laughing so hard. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgDbd7BpgrULYBfwZ1Vy2i_JZXnqR7Vb_Wsh7c2OsLmnqxWiW5j-3Zvt7uSzCox96KmAfHcub3WoQPP3VjjFg6F-gjAOOPiR9RJiEYJyWizend-H1wRRG5Si-hS0onWjK-TRs4wZDHsTx-/s1600/P9170062.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgDbd7BpgrULYBfwZ1Vy2i_JZXnqR7Vb_Wsh7c2OsLmnqxWiW5j-3Zvt7uSzCox96KmAfHcub3WoQPP3VjjFg6F-gjAOOPiR9RJiEYJyWizend-H1wRRG5Si-hS0onWjK-TRs4wZDHsTx-/s400/P9170062.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I see you!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXXUh5Eaj_T8KIGYbTNq3acJk4RW_3PSZsaqal6hEder6p9NNBn5MGHWCPWGaAs6f3nUmlxGQqm1KKmOG2PFteeszQ8B5WAAcHNvliiQ4mrQrKAYFOEDrc3ZReUD0o1BKfk_Z_19X4YRC3/s1600/P9170063.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXXUh5Eaj_T8KIGYbTNq3acJk4RW_3PSZsaqal6hEder6p9NNBn5MGHWCPWGaAs6f3nUmlxGQqm1KKmOG2PFteeszQ8B5WAAcHNvliiQ4mrQrKAYFOEDrc3ZReUD0o1BKfk_Z_19X4YRC3/s400/P9170063.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I touched a button on the camera before you realized it!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifNrRPubEJOq33wU-FCUNXALYTUNhZNtFIGQ4zBj335SVydyujnZigfJOWGFvwQqDSmCcA0uh80QOxeZxymxhutknHYkpAV25P7sirlTgxXsdYoeMsokBa8TsxBLEuC1NCKS7Blh1NNU7b/s1600/P9170064.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifNrRPubEJOq33wU-FCUNXALYTUNhZNtFIGQ4zBj335SVydyujnZigfJOWGFvwQqDSmCcA0uh80QOxeZxymxhutknHYkpAV25P7sirlTgxXsdYoeMsokBa8TsxBLEuC1NCKS7Blh1NNU7b/s400/P9170064.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">hahahahahaha I'm a silly baby!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBOvkJTSj7UI7wYLL8B7gUV-IEmID50cn6JDNm4oIsz5a81i-Itti5qB2SqmHwWDZTxmUL6BTYdPrNiZO0dxBhS0D5TbFCIsNPgoO7T0Mqp2vG23KyfIK4YQJwXv5l4bCqsXySn6JMf3qW/s1600/P9170065.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBOvkJTSj7UI7wYLL8B7gUV-IEmID50cn6JDNm4oIsz5a81i-Itti5qB2SqmHwWDZTxmUL6BTYdPrNiZO0dxBhS0D5TbFCIsNPgoO7T0Mqp2vG23KyfIK4YQJwXv5l4bCqsXySn6JMf3qW/s400/P9170065.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">it's WAY past my bedtime, but the crib tastes good.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
And Sunday, September 18th, we went home!<br />
She had her last iv taken out. We took a quick trip to x-ray early in the morning after a horrible night sleep (hmmm, maybe b/c someone played until an hour & a half after they should have been asleep & THEN they were up for almost 2 hours in the middle of the night), and wandered around for awhile waiting to get the official word that we could leave. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVJPKH5vd8BF8ZQJLlEWcIkU60ALtA7ruUjO0n01ZVnURBRCxRoGapKfh9V8MBUd6rb4fDUCv0ukI_Qnop9EfGSwmf_IhotkUhYCzngRFMxLJvJKs07wfxe_q7FvOv9I1aAQyqO3dPuf_/s1600/DSC05871.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1fvIEzJFd56Th6jZGnpqznuwH68Yv2pHKuhOG-xdClDVHAE7d3OaA5KuyMPSRrSsTo3nkMQc_i37t-vYaBLpS2-DsFkXVieThvkHlEy1esm-oa_aTujYqx8sbfhyphenhyphen97CC8QcEpcroOgdOk/s1600/DSC05875.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1fvIEzJFd56Th6jZGnpqznuwH68Yv2pHKuhOG-xdClDVHAE7d3OaA5KuyMPSRrSsTo3nkMQc_i37t-vYaBLpS2-DsFkXVieThvkHlEy1esm-oa_aTujYqx8sbfhyphenhyphen97CC8QcEpcroOgdOk/s400/DSC05875.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">HEY! I remember this game from last night! COOL! </td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUFiOmFKAfznUUvnMsq736s7j-kh0QQ1BbRtU4FkVKlDAeRMZfcJiRzNPo6944vJGnBLaJ_oZaE5HeEGxAbMgRTePA_mO_GmfJSXcprxozsy6rHGaxbqcZI4gz6383aQSMbhK5EiRA2IKZ/s1600/DSC05876.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUFiOmFKAfznUUvnMsq736s7j-kh0QQ1BbRtU4FkVKlDAeRMZfcJiRzNPo6944vJGnBLaJ_oZaE5HeEGxAbMgRTePA_mO_GmfJSXcprxozsy6rHGaxbqcZI4gz6383aQSMbhK5EiRA2IKZ/s400/DSC05876.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mumma, again with the camera?! Just play with me or I'll eat this crib again.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_mxu8nPmR3fceexDN9INU1m6q3ZozQSsYrXdGQTDt_WrBmT_8VVOeXHeTcaNrV2UKjj-uS7lf7uSP2an-Bbkq8B-DlYho2X7IKHxHcFBqY2z7McGHeOnX7xgrx9Tq3YF7z_0tyhyphenhyphenzmmR0/s1600/DSC05879.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_mxu8nPmR3fceexDN9INU1m6q3ZozQSsYrXdGQTDt_WrBmT_8VVOeXHeTcaNrV2UKjj-uS7lf7uSP2an-Bbkq8B-DlYho2X7IKHxHcFBqY2z7McGHeOnX7xgrx9Tq3YF7z_0tyhyphenhyphenzmmR0/s400/DSC05879.JPG" width="267" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">FIX MY FEET! put the camera down & help me, lady!</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh973VIWA794jfUNvVUd1FpTb-7WtCwq0WcLi8sopf0rGxEEBfNPnSgOnsmv6qWqqbbpdyrASHiH_Lo44aJd-Jk-VvligGugZ1GUERrH45xpCY6i4j7spxwoxpIzY1x3xMCq3sFvCBnMX0b/s1600/P9180067.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh973VIWA794jfUNvVUd1FpTb-7WtCwq0WcLi8sopf0rGxEEBfNPnSgOnsmv6qWqqbbpdyrASHiH_Lo44aJd-Jk-VvligGugZ1GUERrH45xpCY6i4j7spxwoxpIzY1x3xMCq3sFvCBnMX0b/s400/P9180067.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">seriously?! You couldn't pack up before getting me ready to go?!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjtX3NfJpUCHTOyOIcuCL1dc23pHYfyVv8Qjc9vB66LgnBtknOh91h-zHLG1tnk5QGiDkfLEB30CNJ4D9bm5Ni2MT0lp44p1ghhoSjEGTkQsRFWQWXsQGA23ktSFmMcLwiwGY2vS6oJN6r/s1600/P9180068.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjtX3NfJpUCHTOyOIcuCL1dc23pHYfyVv8Qjc9vB66LgnBtknOh91h-zHLG1tnk5QGiDkfLEB30CNJ4D9bm5Ni2MT0lp44p1ghhoSjEGTkQsRFWQWXsQGA23ktSFmMcLwiwGY2vS6oJN6r/s400/P9180068.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yes, Mother, we're home.<br />
PUT DOWN THE CAMERA AND UNLOCK THE DOOR. </td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
Actually, they were both really happy to be home and J kept giving N her doll & then passing her her own Princess Movie doll and telling her she loved her. It was really cute and sweet. Umm, yeah, they both wanted into the house, not to deal with me taking pictures on the front step.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /> </a><br />
<br />
oh, and one more, just in case Nick didn't really turn the pictures off when he got around to reading this:<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyQ-PQHXOs0Zj6hNF1tXy7XrgCrkPVW5DbdDIG2Q4QfUI963oXSv2orea0b7vHDCnxxBvTL_AKqApyrxycR7x2gHldxW_vUYZ-3AJuK86ahA371h1PiqzG_GPtK6Wdbwzh5PcQLndhboN9/s1600/P9140035.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyQ-PQHXOs0Zj6hNF1tXy7XrgCrkPVW5DbdDIG2Q4QfUI963oXSv2orea0b7vHDCnxxBvTL_AKqApyrxycR7x2gHldxW_vUYZ-3AJuK86ahA371h1PiqzG_GPtK6Wdbwzh5PcQLndhboN9/s400/P9140035.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">right after surgery, she held her Daddy's hand. She is Daddy's little girl :)</td></tr>
</tbody></table>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-38918734170618100012011-09-14T14:16:00.000-04:002011-09-14T14:16:06.484-04:00while the waiting is freshWe're waiting in the family waiting room on 8 South at CHB right now.<br />
<br />
Norah did very well with the surgery. I brought her down to the OR and was with her while she fell asleep - it was an amazing experience for me. I wish I'd asked to do it when she had her ladd's done. I think I may have asked once, but never pushed it, but honestly don't remember. I asked yesterday and again today to make sure I'd be able to see my baby fall asleep.<br />
<br />
She went down a little before 9 and we were expecting our first update around 10:15/30 to tell us that they were starting - we got it a little after 9:30. They were cruising!<br />
Our next update came that they'd opened her chest & she was on the heart/lung machine. We waited a little while, and then went for lunch, expecting the last update around 12:45.<br />
At 12:15 I got a phone call telling me that she was off the bypass & they were closing! Girly did great!<br />
<br />
We talked to the surgeon who said they found exactly what they expected, which was a huge relief. He did check out her mitral valve, which did have a small spot of thickening, but nothing that he would try to repair. The remaining (<1mm) ASD was re-opened to get a better look at her valve & to help facilitate the closing of her VSD, and then closed up.<br />
<br />
She did great and now, I'm just waiting to see her.<br />
<br />
HOPEFULLY, very VERY soom!<br />
<br />
<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-64514023240368178332011-09-14T04:54:00.002-04:002011-09-14T04:56:43.678-04:00today's THE dayIt's 4:48 as I start this post.
Jordan & Norah are sleeping peacefully unaware that today is the day. Jordan knows that Norah is going back to the hospital, but I don't think she understands much more than that. Norah seems to get that something is changing, but I know she doesn't know what.<br />
<br />
In 2 hours we need to be at pre-op again. Hopefully they'll start with anesthesia around 8, and then, if all goes smoothly & there aren't any additional repairs that need to be made, we can be back by her side around 3 or 4.<br />
<br />
I'm ready for today to be a memory. I'm ready to have my baby healthy and as far away from surgeons as possible.<br />
<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-22571644639184612862011-09-09T22:06:00.002-04:002011-09-24T07:57:04.122-04:00ever the procrastinatorI WILL pack a hospital bag.<br />
I WILL.<br />
I REALLY WILL.<br />
REALLY!<br />
REALLY REALLY!<br />
I'm sure I will have it done by Wednesday morning.
I just don't want to do it. I'm so lazy when it comes to packing this bag. I've got a list going, that counts for something, right? I know I need to pack the Bugs diapers (she's allergic to pampers and that's all CHB has), and I *think* a can of formula to fortify her bottles while she's there so that she doesn't need to go on preemie formula. I need to find some clothes for her - and socks that will fit her. I need some clothes & socks for myself. It's not like I need to look my best - I know I can get away with yoga pants & tee shirts for a few days and not look like a complete slob.
ugh. I just don't wanna pack!!<br />
<br />
<br />
<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2160875530992893689.post-56167345824322855252011-08-30T14:51:00.001-04:002011-08-30T14:52:43.712-04:00surgery is scheduled<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOWglu1bVsUwbjbU3HmzvN1HqStdHOC4WchvgdNIMwZ0IUNNVoYWAarcqpG4DfVSsHcrZ7b4HfPiXPkUibne37J9Joh2PCLiaK4821Uj-iDDAl-EoSegw8jonZyycIVcDHpbgkmzQidAYW/s1600/September-2011-calendar-17.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOWglu1bVsUwbjbU3HmzvN1HqStdHOC4WchvgdNIMwZ0IUNNVoYWAarcqpG4DfVSsHcrZ7b4HfPiXPkUibne37J9Joh2PCLiaK4821Uj-iDDAl-EoSegw8jonZyycIVcDHpbgkmzQidAYW/s320/September-2011-calendar-17.jpg" width="320" /></a></div><br />
so we have a date.<br />
I'm scared and excited all at the same time.<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
and that's that. Surgery is in 15 days. Let's do this!<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-56141844845862778002011-08-27T11:33:00.000-04:002011-08-27T11:33:10.666-04:00I'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.<br />
<br />
I don't have all the information.<br />
<br />
What I do have is:<br />
she weighed 15lb 2oz on Monday & 15lbs 9.5oz on Tuesday (at the pedi).<br />
<br />
sedation went well - very little fighting off sleep before the echo, but a whole lot of fighting it on the way home. <br />
<br />
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.<br />
She will not need a catheter procedure before open heart surgery.<br />
<br />
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.<br />
Hopefully the surgery will be done by the middle of September.<br />
<br />
<br />
<br />
so there it is, a simple update until I have more details and a scheduled surgery.<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-9963625448207488682011-08-18T08:56:00.000-04:002011-08-21T13:21:07.012-04:00why 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.<br />
<br />
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 <i>had</i> stopped asking why me and started asking why NOT me months ago. <br />
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. <br />
<br />
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. <br />
<br />
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. <br />
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.<br />
<br />
It took me a long time to understand that feeling, and honestly, I still didn't *completely* get it. <br />
<br />
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). <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
so there's a hella long back story to say - why NOT me? <br />
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 <i>desire</i> 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.<br />
<br />
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. <br />
<br />
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?<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwWaTdRlitFIAfvoDv5cTsr6Vu7d50EfErTtNcKp3KAy60bQaukVbNyiUWtjWcKFc9gUd7X7Pd3ZkXJaVTc29eqN5VALEpsKnEIuyfUPgFJ3RW6OplFMrSQAheVntj9njlTrJU_h-sPbDo/s1600/DSC05383.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwWaTdRlitFIAfvoDv5cTsr6Vu7d50EfErTtNcKp3KAy60bQaukVbNyiUWtjWcKFc9gUd7X7Pd3ZkXJaVTc29eqN5VALEpsKnEIuyfUPgFJ3RW6OplFMrSQAheVntj9njlTrJU_h-sPbDo/s320/DSC05383.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the is NO ESCAPE from the kiss of a Norah-monster!</td></tr>
</tbody></table><br />
<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-32996950884821884612011-08-17T08:17:00.000-04:002011-08-21T13:21:07.012-04:00the consult has been schedulednext 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. <br />
<br />
I can't believe she'll be 9 months old.<br />
That's a far cry from "probably won't make it to term"<br />
<br />
My little girl is full of big things. She can (and WILL) do any and everything.<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" border="0" alt="Photobucket"></a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2160875530992893689.post-43551445425645357132011-08-10T08:35:00.000-04:002011-08-21T13:21:07.013-04:00better todaythe shock of <i>actually hearing </i>that Norah will (MAY) need surgery soon has worn off.<br />
<br />
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.<br />
<br />
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.<br />
<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-91144842127132950792011-08-09T20:38:00.000-04:002011-08-21T13:21:07.013-04:00cardi day sucked.Maybe sucked is a bad word for it. <br />
I knew a day like today was coming, we've been waiting and preparing for it since before Norah made her debut.<br />
<br />
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. <br />
<br />
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.<br />
<br />
I'm so angry and hurt. Not at, by or b/c of Norah, but b/c <i><b>I</b></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. <br />
Cancer is common. Doesn't make it any less serious.<br />
<br />
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?<br />
<br />
I just want to forget about today.<br />
<br />
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.<br />
<br />
Here's hoping. <br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" border="0" alt="Photobucket"></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-938901837377357302011-08-08T09:37:00.000-04:002011-08-21T13:21:07.013-04:00AAAAAAHHHH 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! <br />
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.<br />
<br />
OMGWTFBBQ! If the climbing doesn't stop, I will lose (what's left of) my ever loving mind.<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-9854725197144272402011-08-04T07:10:00.000-04:002011-08-21T13:21:07.013-04:00went to see the aminalsWe 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.<br />
<br />
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.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://images2.snapfish.com/232323232%7Ffp539;8%3Enu=3253%3E899%3E242%3EWSNRCG=36796785%3C432%3Cnu0mrj" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="http://images2.snapfish.com/232323232%7Ffp539;8%3Enu=3253%3E899%3E242%3EWSNRCG=36796785%3C432%3Cnu0mrj" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">she did like seeing all the people while she strolled </td><td class="tr-caption" style="text-align: center;"><br />
</td></tr>
</tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://images2.snapfish.com/232323232%7Ffp53985%3Enu=3253%3E899%3E242%3EWSNRCG=36796849%3C:32%3Cnu0mrj" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="http://images2.snapfish.com/232323232%7Ffp53985%3Enu=3253%3E899%3E242%3EWSNRCG=36796849%3C:32%3Cnu0mrj" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">so happy :)</td></tr>
</tbody></table><br />
<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-18592350838582557992011-07-31T10:29:00.000-04:002011-07-31T10:29:47.587-04:00birds are back! again!ok, they're in a different position, but they are back! And together, just like the girls always are :)<br />
<br />
I've got issues that <i>this</i> makes me *this* happy.<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" border="0" alt="Photobucket"></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2160875530992893689.post-49348116527567121582011-07-29T12:39:00.000-04:002011-07-29T12:39:52.789-04:00new bird :(Apparently <a href="http://aquapoppydesigns2.blogspot.com/">Aqua Poppy Designs</a> has exceeded their photobucket bandwidth. I'm sad. I'll miss *my* birds.<br />
<br />
<a href="http://s182.photobucket.com/albums/x173/beals-date/?action=view&current=Untitled-2.png" target="_blank"><img alt="Photobucket" border="0" src="http://i182.photobucket.com/albums/x173/beals-date/Untitled-2.png" /></a>Unknownnoreply@blogger.com0