Update again!!!

The surgeons just came in. They were able to connect the two pouches without having to get to the Foker procedure. This is GOOD NEWS. Leah will still be paralyzed and under heavy sedation until about Monday because there is still a lot of tension on the two ends (they did have to stretch them out a lot to get them together). At this point the biggest things we watch for are leaks at the surgical site and pneumonia.

In about a week they will run a dye study to make sure everything is still intact, and at that point they can begin to attempt oral feeds and therapy.

WHEW.

Thank you guys SO MUCH for all of your support and encouragement today!!! Please keep sending positive thoughts and energy in Leah’s direction these next few days as this is a critical time in her recovery! OMG. Let’s get started on this next part of Leah’s journey home!!

Update

Surgical team’s nurse practitioner says they THINK they may be able to do a primary repair, so they are going to try, and if that doesn’t work they will move on to the Foker procedure. This is good news either way because it means there is enough tissue that they think they can connect the two ends by one procedure or another, which saves them from having to borrow a piece of one of Leah’s other digestive organs to form a pseudo-esophagus, which comes with its own problems. Please keep up the positive thoughts and prayers and thank you SO MUCH for your support!!!! More news when we have it!

All Hallows’ Eve in the PICU

Leah’s surgery is in roughly ELEVEN HOURS.

The past few days have been a nice combination of crazy and calm. Leah had lots of visits from friends and family, and missed out on seeing other friends and family because people keep getting sick. Very sad. Get better, people! On Monday and Tuesday we had visits from Gran and a few friends. Wednesday we saw another friend, and Grandma Barbie and Grandpa Bill brought Grandpa Mannie to visit. Grandpa Bill helped Mommy Mandy give BabyBug a bath. That turned into an adventure when it was discovered – as Grandpa Bill carried the bathtub from the crib to the sink to spill it out – that the plug in the bottom of the bathtub was not in place. Need the floor mopped? Not anymore!

Later on Wednesday, cousins Beth and Erin came to visit and Erin serenaded a knocked-out BabyBug by playing some songs on the guitar. Whew! But that’s not all! Last night, Leah met one of her cousins (in Georgia!) on Skype, and this afternoon Leah met her great-uncle (Grandma Barbie’s brother) and great-aunt on Facetime. They live in New York! BabyBug has friends and family all over the place! <3

So that’s the crazy. Today was the calm – we had NO visitors at all. Well – no visitors except for the nursies and staff who came around this afternoon to “reverse trick-or-treat,” a.k.a. to dress up and bring candy to the kids (and parents). If you thought the giraffe outfit was Leah’s Halloween costume, you clearly have not met us yet. Oh no. Just scroll down.

In other random news:

– Leah is one step closer to surgery this evening; they inserted the IVs about two hours ago. They called somebody up from NICU to do it because her veins are SO FREAKING TINY. She got that from Mommy as well. She is sound asleep now – they wore her out!

– It is confirmed that Leah has her Grandma Barbie’s eyebrows. I just thought you would like to know. I am just starting to see a little bit of me in her, too. Up to now I’ve only been able to see Grandpa Bill and Aunti Staci. And a little bit of Mommy Mandy in the nose.

– On a more serious note… Once again we have been blown away by people’s generosity and kindheartedness. We learned that an email went out earlier today to the community at our family’s old temple, and for the whole day we’ve seen donations coming in on the GoFundMe page. We are so grateful for people’s generosity and willingness to help out in difficult times. I try not to spend too much time on the blog harping on financials, but I’ll say that it hasn’t been easy dealing with the stress of lost income, unexpected expenses, and a whole host of other factors to worry about going forward (not least being Leah’s care once we get home). I don’t know how we can adequately express how much your contributions have helped us these past few months – financially, mentally, emotionally. You haven’t just kept us afloat – you have kept us sane and in one piece, and have allowed us to focus our energies on our little girl. We can’t thank you all enough for that. But we’ll try.

– Regarding tomorrow’s surgery: They will take her down to the OR around noon. The procedure could be anywhere from three to five hours. We won’t know until tomorrow. There is a lot we won’t know until tomorrow. We will do our best to keep you posted. In the mean time, thank you, dear blog readers, for keeping me distracted tonight while my wife and baby sleep. Trying not to be a nervous wreck.

Behold: Photos!

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Yeah, this happened. The PICU nurse leader was kind enough to indulge my eccentric request and allowed us to put Leah in an isolette so we could take this picture and show you how our little Bug has grown! Look at her chubby-chub thighs!!! Remember those chicken-legs of summer days past?

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“Um, Mama? I’m a big girl now. What is this about?”

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Our toesies, however, are still pretty tiny.

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A preview of our new Halloween outfit. “Mama, it’s not Halloween yet! You’re SO SILLY!”

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Have you ever seen such a look of scorn on an infant? This is probably after the skirt-pants went on.

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Yep. More scorn. “Mama. Really? Really?”

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AIR KISSIES!

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“OMG, please tell me I’m not going to be seeeeeen in this skiiiiirt!”

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“I guess the leg warmers aren’t so bad!”

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“Oh hai, guys! It’s Halloween MONTH!”

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We love baby leg warmers!

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“Whatchoo doin’ up there, Mama?”

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“NOMNOMNOMNUMMYFINGERS!”

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Sweet face

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Sweet Sleepy Bug apparently can’t sleep unless she has all of her friends with her.

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BabyBug and I started playing a new game the other night: “Smile or Grimace.” It’s pretty fun. Mama won, and by won, I mean got lots of smiles. This, however, is probably a grimace.

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Bobblehead Baby practicing neck control!

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“Are we done yet?”

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I love how such a slight change in position and expression makes all the difference in attitude. In the first picture she looks so disgusted by the outfit and by the second picture she’s like, hand on the hip, knee sticking out, going, “When do I start getting an allowance? Can I wear eye shadow yet? I wanna go to the mall!”

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I know this is blurry but I love it SO FREAKING MUCH that I included it anyway.

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“Sup, Mama?” Our friend D stopped by for a visit on Monday morning!

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“Oh hai, I don’t have enough shirts of my own. I think I’ll have your shirt too.”

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“Tada!”

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I’MTHEKINGOFTHEWORLD on Mama’s lap.

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“Ummmm, Mama, I don’t know how to tell you this, but… I think this lady was already here today.”

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“Well hello!” Our friend D’s identical twin sister M came by later in the evening. In case you hadn’t already figured that out.

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Nomming on Mommy’s finger during dinner. Tastes like milk!

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Our friend Dee came to visit on Tuesday evening. Thank you for bringing more clothes! Leah says, “OH HAI, RUBY’S MOMMY!!! Thanks SO MUCH for getting my Mamas hooked on baby leg warmers! It’s all your fault!”

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“Hi, Arleta! I think I’ll melt in your arms. K, thanks. ZZZZZZZZZZZZZZZZ.”

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“Hey, Facebook! You need another baby giraffe? Here I am!”

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“It’s hard being so cute.”

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“Hi world! I’m upside down!”

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Two, two, two giraffes in one picture! BabyBug is hypnotized by her friends on the mobile.

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The costume you’ve been waiting for. A legitimate, for realz LADYBUG. Costume.

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“Oh Mamas, you silly!”

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Look at the feet!!!

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Look at the antennae!!!

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Look how cute!!!

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Do ladybugs have tongues?

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“SILLY MAMAS UPSIDE DOWN!”

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Nope – silly BABY upside down!

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She started off sweet and happy, but it didn’t last long.

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She just needed to nom on the Mommy Ladybug’s shoulder.

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Best family portrait ever?

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Smooooooooshy cheeks!

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Mommy’s shoulder wasn’t filling enough so she went for Mommy’s cheek.

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Mommy decided it was only fair to steal a Leah-cheek in return.

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Sleepy LadyBug

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Um…. if the Unibomber was a ladybug?

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Ladybug with a flower crocheted by Mommy!

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Ladybug with a flower and a caterpillar crocheted by Mommy! Plus the jingle-bug!

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Ladybug with the flower and the caterpillar crocheted by Mommy, plus the jingle-bug, plus the LadyLoveyBug, plus a MAMA! Whew!

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Upside-down baby with, you know, stuff made out of yarn ‘n’ stuff.

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Leah just woke up from her nap and doesn’t understand why Mommy now has scary things floating over her head.

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Best family portrait ever? Yuh huh.

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BIG YAWN right in Mama’s face.

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Mama makes a comfortable lounge chair.

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I think the Mamas might have been the most excited for Halloween!

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Tinkerbell Pants and Halloween leg warmers! We are all about high fashion.

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Twinsies.

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“Oh hai Mama! I love you!” I love you too, BabyBug!

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She was so talkative. I kept getting little coos. She has the sweetest little voice!

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We suggested that people post this picture as their Facebook profile pic tomorrow to show support for LeahBug during her surgery. I made a square one after I noticed that people were having trouble with Facebook Mobile. Apparently it thinks it’s Instagram and only allows square profile photos? Who knew? Ah well.

Okay. I should sleep now. Thanks again for giving me something to think about other than sutures and pouches and tension (oh my).

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.