Oh hai Facebook – you wanted a giraffe?

Okay, a real update TOMORROW, I swearz! But I had to share this picture – totally appropriate, right?

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Oh hai Facebook! Here’s your giraffe!

BTW, “the door” is the only acceptable answer.

We are going to enjoy our Halloween tomorrow and put surgery out of our heads until Friday! (A likely story! It will be on our minds at every minute. But it was worth a shot, right?) We are looking forward to playing dress up with the Bug (ma nishtana, right?) and will definitely share pics in the evening. Rumor has it there may be a therapy dog costume parade. This completely needs to happen.

LeahBug and the Very Special Weekend

This has been a Very Special Weekend. Yesterday, our sweet Bug had three special experiences. She wore her first Halloween costume, she had her first photoshoot, and she met her first doggies!!!

A while back, a friend of a friend generously offered to donate a photo session for MsLeahBug, for which we were very excited and grateful, because while you may be saying to yourself, “Wait – they want MORE pictures????” there really aren’t that many nice photos of the three of us all together. So after the requisite adorable-sleeping-tinytot photographs, we took some nice family portraits, and I’m very excited to see them.

BabyPie also wore her Halloween costume for the first time yesterday (’cause PICTURES!). Since we won’t have the professional pictures for a few weeks, you are just going to have to wait until Halloween to see how ridiculous this costume is.

Finally… Leah met her first doggies yesterday! There are volunteer therapy dogs who come through occasionally, and yesterday we caught them as they passed and invited them to meet BabyBug. I am a Cat Person and am on a very strict dog-by-dog basis (meaning I like any particular cat until it gives me a reason not to, and vice versa for dogs). These dogs were all sweethearts, especially the fluffy soft golden retriever who was dressed up as a nurse. Oh wait – did I forget to mention that the dogs were wearing Halloween costumes???

The dogs that visited yesterday were as follows: Collie in a Dodgers uniform, Nurse Golden Retriever, Yorkie in a costume I don’t remember, and Fluffy White Dog (I don’t think that one was dressed up). One of the volunteers brought the Yorkie, Ayla, over to where Mandy was holding Leah, and Ayla put her little paw on Leah’s shoulder. Leah responded by reaching out and grabbing a handful of dog, just as she holds her little lovies (those little square blankets with stuffed-animal heads) and security blankies. It was ridiculous. Everybody in the room was smiling.

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We take a family portrait with the itty bitty Yorkie

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Yorkie says, “Hello, large bald puppy.”

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LeahBug says, “Hello, moving lovey!”

Today, one of the PICU nurse leaders fulfilled our silly sentimental eccentric request and allowed us to put LeahBug in an isolette to show her growth progress. The three pictures are essentially birth, double birth weight, and a little over three times birth weight. The difference between the second and third photos is not sooooo radical, but when you look at where she started and where she is now, the difference is pretty breathtaking.

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Oh – yeah, and you’re probably wondering how our meeting went with the surgical team! It was pretty straightforward. At this point the biggest questions we have won’t be answered until Friday, when BabyPie goes to the OR and they are able to see the gap “in-person” for the first time. I am hoping hoping hoping that we have good news for you at that point. Her procedure should start around noon – they have a small case and a moderate one before her. Please keep Leah in your thoughts on Friday!!!!

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Snapped these while we were waiting for Valerie (yes, the photographer’s name is Valerie!!) to move her car. Look at that little tongue – what a sassy baby! “Nyeah, nyeah, mama! I don’t know what I’m nyeaing about, but it seems appropriate! Aye!”

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The Mamarazzi were not finished once BabyBug was tucked into bed. Even though she appeared to be trying to tell us something…

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…and then tried a little harder to get her message across…

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…but how can you stop taking pictures of this face? How, I ask you?

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Our little cheekies are so red from tape. 🙁

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Caption, please!

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She’s just too cute.

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See above re: excessive cute.

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“Oh, you talkin’ about me, Mama? Yep. I’m pretty cute.”

Good times.

Leah’s surgery is in 8 days.

The general consensus is that the weight of 4.94 kg was a fluke. She’s more like 4.84 kg.

It is always fun when you hear “Code Red” announced for your floor. The rumor is that it was a drill, but don’t you think that’s the kind of thing you’d want to warn people about ahead of time? ‘Cause let’s be real – “Code Red” is not so deeply encoded that people don’t know exactly what it means.

Tick tock tick tock

Leah’s surgery is 9 days away.

Pretty much everybody knows her surgery is coming up. As we walk into the unit, nurses greet us with, “Hey, the big day is getting closer!” Even the security guards know her surgery day is almost here. It makes for a lot of pressure to keep a lot of people updated, but at the same time, it is So Freaking Amazing that so many people care about how this sweet baby is doing.

And on that note, here is what happened today: I posted LeahBug’s GoFundMe link on the Kids With Down Syndrome page in the hope that a few people might see it and share it. The folks who run the page removed the donation link and posted only the photo of Leah along with my request that people keep us in their thoughts as November 1 approaches. What resulted was nothing short of breathtaking. More than 6,000 people “liked” the picture, over 600 people left sweet comments and prayers for Leah’s health and recovery, and over 300 people shared the picture on their own walls. A small piece of our fundraising effort led to something even more valuable – that’s 6,000 people who will send out a positive thought or prayer to Leah in the coming weeks. And if they don’t, that’s still 6,000 people who took a second out of their day today to express support for Leah as she marches (or scoots, really) toward surgery. Can you ask for more than that?

Also on the horizon: A photographer friend of a friend has graciously offered to donate a photo session prior to Leah’s surgery, and an awesome Mama blogger with a pretty amazing following on Facebook contacted me on Instagram and wants to do a blog entry about LeahBug. So cool. So grateful.

And on that note: We wore our pre-costume costume today. I guess we could call her a LadyBug Larva, but that doesn’t sound very cute.

Enjoy some humiliated baby!

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“Please say there’s no hat. Please say there’s no hat.”

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“There’s a hat.”

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BabyBug has bangs!

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And she has antennae!

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They’ve been using a clear tape on her chin lately. I love that little chin!!!

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Antennae!

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Of course, it wouldn’t be a dress-up day without a pissed-off Angry Babyface.

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I know it’s blurry but she looks so adorably distraught that I had to share anyway.

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But Aunti Staci is magical and fixed it right up.

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“Oh hai, Mama! Aunti Staci is comfy!”

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“So comfy!”

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Snuggle snuggle snuggle!

A bunch of random.

Leah’s surgery is in ten days, if you pretend that today is still yesterday (seeing as how it’s 2:18AM).

Question of the day: If we were to have shirts made up for Team LeahBug, who among you might be interested in purchasing one?

Things that happened today:

– Leah weighed in at 4.94 kg. Allegedly. That’s 10 lbs, 14.25 oz. This is a pretty huge leap from her last weight, which was only a couple of days ago, so I’m going to go ahead and guess that it might be a tiny bit off. But we’ll take it while it lasts.

– Leah’s meal allotment was increased from 85 to 90 cc. She’s a growing girl!

– Leah had a bath and did not wind up with wild hair. Where did we go wrong?

– I had a decaf iced caramel macchiato from Starbucks (thank you, Gran!). It was glorious. I must not have another any time soon. Whew. That is way too much caffeine and sugar for somebody who has been living on broth, baby food and mashed ‘taters. Way way.

– This afternoon I went back to Ronald McDonald House to do laundry. Roughly 5 minutes after I started three different loads of laundry… the power went out on the whole block. Thankfully it was only out for half an hour. Still. Not cool. Curiously, the other Ronald McDonald House building (there are two) did not lose power. Apparently the dividing line for the electrical grid is right between the two buildings.

– Somehow I managed to whack my forehead on a washing machine. Don’t ask. It still hurts, but I think my dignity took the brunt of the impact.

– BabyBug’s Halloween costume is now washed and ready to wear. This outfit is going to require Yom Kippur levels of atonement and forgiveness. But I have faith that someday Leah will recognize that this costume needed to happen.

– I definitely do not have 63 GB of photos and videos of our child. *whistles and looks around*

That’s about it.

No, wait.

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Thank you to Sharon A. for the adorable ladybug blanket!!

NOW that’s about it. 🙂

Photoblast of cute.

Leah’s surgery is in 11 days. Leah weighs 10 lbs 8.08 oz – basically 10.5 lbs. We have our final meeting with the surgeons this coming Friday.

Not a whole lot else to report, news-wise. Leah did have some very special visitors this weekend – Mama’s family was in town from northern California for a family event and some of them stopped in to meet Ms. LeahBug. She charmed the socks off of all of them – even the ones who weren’t wearing socks. She’s just cute that way.

Not a lot of news, but as always, lots of pictures:

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Not sure it gets cuter than this. We love our ducky.

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We MATCH our ducky!

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“GRAN! You’re as bad as Mommy!”

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The sweetest little chin ever.

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Reading time!

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See how much we love our ducky? We smile at it!

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I’m telling you… this Ducky is our new best friend – until the LadyBug comes back from the wash, at least!

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“SO MUCH TO LOOOOOK AAAATTTT!”

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So much to look at and all we care about is this FLY!

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Yep. Aunti Staci bought her a Dodgers onesie.

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And Mommy Mandy put it on her.

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And Mama Lisa took pictures of her crying in it. Sorry, baseball fans!

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We got to meet our cousins Maddy and Spencer for the first time, and visit again with Auntie Heather and Uncle Ricky! Yay!

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“OMG, WE LOVE OUR COUSIN ANYA!”

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Melted baby

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Mesmerized by Great-Grandma!

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The very greatest of great-grandmas!

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Putting on a show for Great-Grandpa!

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“Oh, your neck is getting stiff? Well, I’m getting bored. How do you like them apples?”

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“Let’s talk.”

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Sometimes it takes two pictures to truly capture us…

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More Cuzzy Anya!

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“Oh hai, upside-down Mama!”

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LeahBug and LadyBug Lovey, reunited at last!

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I think she’s moved from Jazzercise to yoga.

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We love our legwarmers.

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“OMG, you can see my g-tube through my shirt! This is so embarrassing!”

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“Ehhh, forget the g-tube – I’M HAPPY!” OMG. She’s not really smiling socially yet, but every once in a while she starts grinning at her own private joke, and it is an absolute treasure when I can manage to capture it in a photo. Usually I tell her, “Mama’s greedy – she wants another one. Can greedy Mama have another smile? More smiles for Mama!”

Crunch crunch crunch

This might be repetitive (based on my prior entry with the Facebook post embedded) and is mostly for my own reference, but I still thought it was kind of awe-inducing, so I wanted to throw it out there.

The bottom line is that depending on which statistics you use, each year only 2 to 5 children in the US are born with Leah’s condition (Down Syndrome and Type A esophageal atresia).

I gathered a bunch of numbers:

  • Incidence of Down Syndrome in the United States: Approximately 1 in 691
  • Incidence of TEF/EA among individuals with Down Syndrome: 0.5% to 1%
  • Percent of TEF/EA cases that are Type A (long-gap, no TEF): 7% to 8%
  • Children born in US: 3,952,937 in 2012

    Then, I mushed them all together (using 2012 birth statistics and assuming that kids with Down Syndrome and TEF/EA are no more or less likely to have Type A):

  • Estimated number of children born with Down Syndrome: 5,721
  • Estimated number of children born with both Down Syndrome and TEF/EA: About 29 (at 0.05%) to 57 (at 1%)
  • Estimated number of children born with both Down Syndrome and Type A TEF/EA: About 2 (at 7% Type A and 0.05% of kids with DS) to 5 (at 8% Type A and 1% of kids with DS)
  • Estimated number of children born with both Down Syndrome and Type A TEF/EA and two mommies: Um. Leah.

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