I'm sitting here bawling right now for a myriad a reasons that were sparked by this new little superstar, Sabrina.  I started following their story around the same time I was introduced to Sarah's mom.  I had distanced myself a bit from following CDH babies (except of course the orignal "group" of us that met here) but recently found myself pulled back and shortly after, found out about these two sweet girls.  Something about Sabrina's story has kept me checking daily for updates, I've felt like I did when Jackson, Drew, Avery, and Sofia were born.  At least I knew them though--I feel like a total blog stalker to the Sach Family!  Anyway, Sabrina was extubated today and got to be held for the first time.  I remember SO clearly those days for us (we didn't get to do both on the same day).  Reading their site tonight and looking at the pictures made me feel a little bit closer to y'all too as I think I get how it felt for y'all following us.  Love full circle moments, love 'em. 

 

 

I wish I had some great recent photo of Audrey and I together (to show the "full circle" but it just never seems to get taken!  I do have another great one though from the fabulous Halloween Party we attended this weekend.  Audrey and her BFF Allison.  Allison had yet another bronch today along with the added bonus of ear tubes.  She did great and the news was good--only 40% blocked and no new growth, she gets to wait until April or May til her next one.  Look at our girls, they've been through so much this year, I'm not sure I could even give you an accurate count off the top of my head how many times combined they've been sedated, poked, prodded, ect. and they are as happy and sweet as normal toddlers.  We are so blessed!

Y'all are so good to me; I can't tell you how much I appreciate how you indulge me in a little self-pity, even when it isn't warranted.  I LOVED hearing from folks who don't comment or write much and am working on emails to each of you, thanks for writing!

 

Audrey's sedated echo went well, she was a super patient and the prelim results showed no PH (I still haven't heard from her cardiologist or pulmonologist).  So, hopefully this means that we are only dealing with a bad lung and nothing else.  We'll see, we have one more big test on the 18th and then we'll have a pow wow to come to the that same conclusion.  She's good though, despite a random fever yesterday that kept us up all night-- still as sassy and sweet as ever.  This weekend she figured out  that if she is snuggles with mommy that she gets to stay up later--how could I resist a sweet, nestled-on-my-shoulder peanut?  She works it though--snuggles for a few and then tries to get down to party and be cute and then returns to snuggle again to restart the process.  I'm such a sucker.  It started with her sedation on Friday when she fell asleep in my arms (NEVER happens) and then after she woke up from her 5 hour nap and cuddled again, she learned quickly how much I dug it!  She's such a stinker y'all, we are in for some BIG trouble as she gets older.

 

Anyway, her fever seems better today (hasn't gone above 99), but she is sleeping a bunch.  Hopefully the boys won't get it and she'll be completely back to herself tomorrow.  All else is fine in the Miller household.  Jason's new obsession is jeans, it's still not Fall here but he insists on jeans EVERYDAY and then says to me when we leave to pick up Ethan, "mommy, It's too hot to walk to the car (FROM THE GARAGE, people!), can you carry me?"  How the connection to his apparel choice and feeling hot isn't clicking is beyond me! 

 

I had a really sweet moment with him this week (which are unfortunately too rare with his constant "I need to rebel" personality) when we were looking through old pictures to find the infamous snake incidents from May of 2006 (Jason saw one come up randomly on my screen saver and wanted to see more).  Audrey pictures from her early NICU days were mixed in with them and he says "mommy, that's Audrey, right?" "yes, that's when she was very sick, but she's better now"; "oh, that makes me so sad, I don't want to see anymore of those, I like seeing Audrey happy"; "I know Jason, let's find some pictures of her out of the hospital"  When I found one of her smiling with him but without her NG tube in, his whole face lit up and he said, "that's better mommy, that's Audrey!".  He was SO little through all of that, not even two yet, and so I think him seeing those pictures was nearly as traumatic as if it were happening now.  Poor kiddo.

 

Ethan's parent/teacher conference was this week.  My heart swelled when his teacher responded to my question about how he's doing socially with "he's such a good kid--kind, helpful to everyone in class, respectful, and always giving 100%".  Just love that!  He's doing fine academically too--I know the teacher speak, "such a nice boy" really means "a total idiot", "so social" means "won't shut the hell up" etc. etc.   I feel like she was being sincere though!  He's getting SO big.  Looking through those pictures this week it was really evident how much he's grown up in the past year and half--where does it go?!!! 

 

Finally, I have yet more blogs to lead you to!  I've added a list of all my non-cdh blog rounds, there's some good reading there my friends, enjoy.  AND, I have two more special ones to mention here...Maggie is a GORGEOUS CDH survivor who is still fighting in the hospital.  She's here in Dallas now after her first four months in Houston.  You may have to log into carepages and then type her carepage name to get there, Maggie5607, her smile is SO worth the time to register!  They've been having a tough time here and could use any positive thoughts you can spare. 

Kim's blog was sent to me from my buddy Amy.  Kim is fighting breast cancer right now while trying to finish her last years of law school and raise her THREE children.  She's up for a scholarship that's ultimately decided my internet votes.  If after checking out her blog, and the other nominees if you're so inclined, please throw her a vote; how cool would it be to help someone with just a click!  I spent lots of time last night reading her blog.  The details she shares of her journey were tough to read.  Penny lived with so many of the side effects that Kim writes about so clearly and remembering all those details from Penny's journey was heartbreaking at best.  Cancer just sucks.  I miss Penny so much.  We all do.  This week as we were decorating for Halloween, I found the cards she sent the kids last year and the infamous crazy stuffed pumpkin that cracks us up every year--I will try to take a picture-- it's this hideous, worse-than-dollar-store-looking little stuffed pumpkin that says things like "Happy Halloween" when you squeeze it as well as this RANDOM song that goes, "some people act as if they didn't have a brain at all, some people act as if they didn't have a brain at all"  WTH?--she gave it Ethan for his first Halloween and we teased her forever about it. We get it out EVERY year since. 

Anyway, please check out Kim's site and like my buddy Minivanmom did on her site, leave a comment if you vote so I can send you a cyber high five! 

I'll check in again soon!

 

Jenn

 

Edited to add:  I was just adding all the links when AJ woke up with her fever again and so now that it's 45 minutes later, I'm too tired to finish.  I'll do it tomorrow but don't want to wait to add this entry--sorry it's incomplete!  Her fever was just at 101 and her residual (what comes back through her tube when I vent her) smelled like death, so I'm guessing we are doing a virus vs. teething or something--ugh!  She was so cute though when I laid her back down after lots of water, some tylenol, and cuddles she got herself all situated and then turned to wave and do her "night night" sign--love her!  Check back later tomorrow for all the mentioned links and new pictures!  Ok, everything is added (I think), I'll do new pictures this weekend!  Jenn

that's all she's got folks.  We've been seeing such growth in the left lung over the year but apparently what we've been told all along about size vs. function is true.  She seems to be fine with it and compensating well but since the numbers on her perfusion test were SO lopsided (the bloodflow to her lungs is split 91% right to  9% left), we're continuing to explore reasons other than her lung is just that "compromised" in order to be sure we're not missing a treatment that could help increase her function.  Tomorrow we go for our second echocardiogram, this time sedated as last week's couldn't rule out that her pulmonary hypertension has or has not returned.  We were dismissed from the cardiologist right around this time last year but now he says we need to see him at least every 6 months, ugh!  We went to yet another specialist today too.  Audrey now has an endocrinologist as she may have precocious puberty.  UGH!  She had to have another blood draw today and they took over 16mls--that's a lot for a kiddo her size  and I swear I'm losing years off my life every time I have to see her big baby blues filled with tears and fear searching my face for "why are you letting them do this?", it sucks.  A note to health professionals, having mom be a primary "holder", as in holding down your baby, really isn't fair to the kid or the parent.  Our job is to comfort as best we can, not be part of the pain infliction.  I can't tell you how much I appreciate it when we get a nurse or tech who really "gets it", it makes SUCH a difference. 

 

Alright, I'm starting to sound a little debbie downer; I need to share the good stuff.  Here's the thing though, I know how lucky we are to have Audrey at all--I was there, I saw how close she came to not making it AND I've "watched" through cyberspace as TOO MANY babies have died just since Audrey was born.  But, it still sucks that her little body is still the mess it is--it just doesn't suit her bigger-than-life personality!  I know it's selfish, especially after ALL we've already been given, but I can't help but want her life to be easier, I just can't help it.  I'll share more later, I guess I am just debbie downer tonight, sorry!