What to expect when you’re expecting… surgery.

Leah’s surgery is in 15 days.

Our little Bug was full of spitballs today. At one point this evening she even hacked up the water that had been used to flush her tube some 15 minutes earlier. She also had a bunch of pretty rough feeds – I don’t remember whether or not I’ve already mentioned this, but for the past few weeks, Leah has been having coughing and gagging episodes at nearly every meal (except sometimes when she is asleep during the feed). She is also hacking spitballs more frequently now that she has discovered nommable fingers; I think the holes are getting stuck to her throat more frequently (although someone once claimed erroneously that this was impossible…). I’m dreading Leah’s surgery day, but at the same time, it cannot come quickly enough. In the mean time, I am grateful for awesome [with an exception] nurses. (Yeah, every once in a while I reread that entry and my blood boils all over again.)

I’ve found myself explaining Leah’s procedure pretty frequently lately, so I want to take a minute to let you know what it is that they’re planning to do – at least, according to my untrained understanding of what will happen.

As you likely know, Leah has esophageal atresia (EA), which means that her esophagus and her stomach do not connect. In most cases of EA, there is also a tracheoesophageal fistula, which means that a part of the esophagus is growing into the trachea. From what I understand, this is typically a more urgent repair since it involves the trachea. Usually these repairs are done shortly after birth – like, within a few days, if that. From the drawings and diagrams that I’ve seen, though, most often what happens is that the proximal esophagus (the top part) ends in a pouch, and the distal esophagus (the part that connects to the stomach) grows into the trachea, which means that it’s long enough to connect to the proximal pouch, but it’s connected to the wrong structure.

Here is a diagram:
tefdiagram
(from this website.)

What I just described is illustrated in the first drawing. Leah has the condition illustrated in the second drawing – a far more uncommon form of the condition. Although this drawing is second in the above diagram, it is referred to as “Type A” or “pure” esophageal atresia. It says 9% of cases, but 7-8% is the figure I usually see. In this condition, the proximal and distal portions of the esophagus each end in a pouch, without any fistula into the trachea, and there is a gap between the two pouches. Sometimes the gap is just past the point where it just could be connected on the spot, and sometimes it is very, very long. My understanding is that a gap larger than 3 vertebral bodies is considered a long gap. Leah’s first study showed a gap of 4 to 5 vertebral bodies, and the second study showed a gap of 5-6 vertebral bodies.

So here’s how it will work:

On November 1 they will take our sweet BabyBug into the OR and take a look at the gap, live and in-person, for the first time. From her surgeon’s description it sounded like they might be doing this laparoscopically, but I wouldn’t swear to it. I know he said they’d be using a scope to examine the pouches but I don’t know if that’s in addition to more substantial cutting. The surgeons will assess the actual distance of the gap and see whether they think it’s possible to do a primary anastomosis, which means they just connect the two ends directly. The odds are pretty small that this will be possible, but the surgeon seemed to think Leah would gain some esophagus length once they actually get in there and see how far the ends will reach.

In the more likely event that the surgeons cannot connect the two ends directly, they will perform the Foker procedure. The surgeons will place sutures and a clip at the end of each pouch. The sutures will be brought out of the chest at a slant, with the distal esophagus sutures pointing diagonally upward and the proximal esophagus sutures pointing diagonally downward. Leah will be completely immobilized (sedated and paralyzed) for a period of three to twelve days while the surgeons gradually put tension on the sutures to stretch the pouches but also stimulate them to grow. I think the clips allow the surgeons to take x-rays to see whether the ends are growing toward one another and if so, by how much. Leah must be paralyzed and sedated throughout the entire procedure, because if she moves even a tiny bit it could jeopardize the repair.

If the procedure works, ultimately the surgeons will go back into the OR and connect the two ends of the esophagus, which should be long enough to overlap slightly. At that point, Leah will begin her recovery, during which time she will be monitored vigilantly to watch for leaks and strictures (where the surgical site narrows), and will receive therapy to teach her how to swallow and feed by mouth. She will come home with the g-tube and continue her therapies and keep learning how to feed by mouth, albeit with vigilant monitoring since she is at constant risk of stricture and choking.

If the procedure does not work or if they have to abandon it for some other reason, the surgeons will perform an esophagostomy (also known as a “spit fistula”), in which they bring the proximal esophagus through the neck so that Leah’s saliva (and whatever else she swallows) drains externally into a gauze pad. After a short recovery period they will send Leah home until she is about a year old, at which point we will revisit some of the more traditional approaches to repairing long-gap esophageal atresia, each of which comes along with its own complications. The reason they don’t do the esophagostomy in the first place is that the Foker procedure generally doesn’t work once there has been any other surgical intervention, and that includes the esophagostomy. Since the Foker procedure is the only one that uses the child’s actual esophagus to repair the gap, that is the ideal procedure in many cases. But sometimes it doesn’t work.

I wish I could tell you what percentage of these procedures wind up being successful, but the fact is this just doesn’t really happen very often. I think I posted my little number-crunching exercise on Facebook but not on the blog, so take a look to put things in perspective:

On a completely different note… I’ve been thinking a lot lately about how much things are going to change once Leah’s surgery begins. I’ve mentioned that Leah’s room is like a brightly-colored bubble compared to the rest of the PICU. That changes when Leah’s surgery starts. The wall-o-mermaids stays, but her toys and books (and probably most of her clothes) will likely need to go back to Ronald McDonald House to make room for the ventilator and whatever other machines they will have supporting our little sweetheart.

We’ve gotten spoiled these past two months with our deceptively healthy-looking Bug, and will have to dig down and remember how things were when Leah was first born. I was talking with Leah’s nurse today about what we can expect in the days following her surgery, if they do proceed with the Foker procedure. She said that we need to minimize stimulation as much as possible because the more Leah gets stimulated, the more she will try to wake up from her sedation and the more likely she will be to try to move, which could cause the procedure to fail. Basically… this is the ICU and Leah will be receiving intensive care and needs to be regarded as such. We are going to double-check everything with the surgeons, but I think the general idea is that we are not just hanging out in this room all day visiting with friends and family during that time. To the extent that visitors are allowed at all, they will need to spend most of their time in the waiting room, with brief visits to see the baby, as was the case when she was first born. I doubt they will allow more than two people in the room at a time with the extra equipment that will be in here. I asked if we could read to her during her procedure, but it sounded like that would likely be too much stimulation and could cause her to try to wake up. It’s going to be a quiet week. :-/ In the time leading up to Leah’s surgery, Mandy and I plan to make sure that at least one of us is here every night, largely because she has been hacking up spitballs so frequently and you can’t always hear those from the nurses’ station. I’m not sure yet whether we should sleep in the room while Leah is sedated. It may cause too much commotion.

Argh. Okay. I think I’ve said what I needed to say so that I can try going to sleep without my mind running on its hamster wheel. I started this post at midnight, so technically today is the 17th – our anniversary. Mandy and I are celebrating eleven years together. Whew.

I leave you with this face:

ducky

Videos for you!

Stuff I forgot to mention yesterday:

Lately BabyBug is OBSESSED with this little jingly fly that has black and white wings and hangs from her vibrating throne. She will sit there for minutes at a time and stare at it, and occasionally give it a little bat with her hand, not unlike a lazy kitten. It’s pretty freaking adorable, especially since she hasn’t really been reaching for stuff very often.

One of the most awesome things Leah has experienced so far: Her Cool Auntie Erin (technically her cousin, but shhhhh) brought her ukulele and played her a song. Leah spent probably 2/3 of the song fidgeting and looking around the room, but I’d say the 1/3 of the song in which she was staring adoringly at Erin was worth all the fidgeting. Here’s a little snippet:

This has also been Fashion Week @ the BabyBug Room. We have been dressing her up in some pretty ridiculous pieces from her fab fab wardrobe, most of which is pieced together from a combination of baby shower gifts and outgrown outfits from Leah’s slightly-older friends, whose Mamas who have some pretty amazing taste in babyclothes. Leg warmers? For babies? BRILLIANT. You try changing a diaper when a kid is wearing not just pants but also what seems like yards of cable and wire and tubing. And she’s at her bare minimum right now! Remember when she also had the vent and the PICC line and the g-tube that was actually a tube? OMG. So yeah. Leg warmers, fab. And yes, also jeans, fab. Sweet little sleepers, fab. Adorable empire shirts that could just as easily pass for dresses? Fab. Thank you so much to everybody who has contributed to The Little Fashionista’s imminent future in footie couture. Seriously, though, you Mamas have been really, really amazing and we are very grateful for the clothes. Even aside from the obvious giant savings in baby clothes (which is Totally Necessary right now), it has brought us a lot of happiness to put Leah in Big-Girl outfits. We have control over so little right now that it’s a big deal to get to pick out her ensemble each morning and her footie jammies each night. So thanks for making that possible.

That being said… I take full credit (credit, blame, you decide) for the two most recent dresses, and am terribly pleased with myself at the fact that the two dresses together were less than $10 (and Gran bought one of them!).

So. These videos purport to have some purpose (e.g. to show off visual tracking or use of developmental toys to encourage grasping), but really? Really? It’s about the outfits.

(Of course, I do think it’s pretty cool that Leah is tracking the camera. I realize she’s probably just tracking me, but it’s still cute. Maybe she sees the little blinking light.)

Just another weekend in PICU

Leah’s surgery is 18 days away.

This is how Saturday went:

-Ms. Crankypants stole the show.
-Leah got visits from her Gran and made a new friend, Sharon (one of Mandy’s colleagues), who reads the blog and leaves awesome comments.
-More Ms. Crankypants.
-Mama and Mommy went on a date – all the way to the park next door for a Grilled Cheese Truck moment. We need our date nights! Yes – I actually ate a grilled cheese sandwich. It was thrilling. And it stayed down. On a day to day basis I still need to be super-careful about what I eat, since the surgery is really just a work-around and not a fix, but it was glorious to be able to eat on that particular occasion.
-While we were at the park we met a mama and her 6 year old kiddo who has Down Syndrome. We chatted with them for a bit and got their contact info so we can keep in touch! Knew there was a reason the Grilled Cheese Truck lured us out that night!
-Epic Angry-Baby face when we returned from our date. Upon arriving in PICU, we stopped to talk w/ the nurses for a couple of minutes because we were informed our tiny tot was sleeping. When we walked into her room, we discovered that she was not asleep, and she gave us the most pouty, scowly look you could imagine on such a beautiful litte face. Not scrunchy face – “How far can I push out my bottom lip” face would be a better description in this case. Here is what her face said: “MOMMIES! You’ve been here for FIVE MINUTES and you haven’t come to SEE ME yet? You’re GROUNDED! Go stand in the corner and think about what you did wrong. And on your way back, bring me milk and more toys!”
-Family snuggle time. Once BabyBug got over the sting of betrayal (which lasted all of about 15 seconds), we brought her over to the pull-out couch and did tummy time, and then we all cuddled as a family for a little while. So nice. Can’t wait ’til we can do that at home.

Sunday happened like this:

-Visitors! Great-Grandpa, Grandma, and Aunti came to visit today and we had a grand old time with our little sweetheart. You guys won’t be able to keep a straight face when you see the outfit we put her in yesterday. If you follow the Bug on Facebook, you’ve already seen it, but if not… teehee. See below.
-Not much else! We love having visitors but we also enjoy some quiet time!

And now Monday:
-Visitors galore! Friends Robyn & Hillary came in the morning, and Uncle Ralph turned up in the afternoon. Our cousins BB&E came a little later, and two of our friends visited still later! Busy day!
-Another awesome outfit. Yeah.

Pictures:

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When you walk into Leah’s room, this is the first thing you see: The wall formerly known as the Wall-‘o’-Mermaids. There are more on the side wall too. She’ll have a nice little scrapbook when she breaks outta here.

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“Sup?”

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Cool!

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“I haz fun toys!”

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Sleepin’ and holdin’ Gran’s good hand.

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“Oh hai, you want one? TOO BAD! NONE FOR YOU! Or maybe I can share. Okay. Here you go.”

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Babytongue!

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Yeah, I grew that!

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Holding Gran’s hand

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At one point she seemed to be trying to pluck the hearts off of the blanket. It was pretty freaking cute.

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Sigh.
Um. Yeah. Totally by accident. It’s like they’re my wife and sister or something.

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Showing off our awesome tracking skillz. Right! Left! Look down! Look up! Good girl!

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Showing off our monkey-nomming skillz.

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Deep in conversation with MiniBug.

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“Bored now.”

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“Oh fine. I’ll look at the camera. JUST KIDDING! My eyes are shut!”

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Look at this precious little contortionist. I don’t know how she is comfortable with her neck like that.

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OMG SHOES.

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It’s exhausting being adorable.

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“Sigh. Okay. I give up. Just pile on the cute.”

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“I take that back. We have to draw the line somewhere.”

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“SRSLY?”

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“LEG WARMERS?!?!? I should have kept quiet and accepted the jeans!”

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“Mama, why u do this 2 me?”

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“No, srsly, why?”

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“I love you Mama. I forgive you.”

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Your new Jazzercise instructor. As soon as I started taking pics she began to “dance” and strike various exercisey poses. It was pretty funny.

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“Aunti Staci, is your arm gluten-free?”

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Aunti Staci and her MiniMe.

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“TOYS!”

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“I love my monkey! Thank you Gran!”

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“U NO CAN HAZ MY MUNKEY!”

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“Yeah, I’m talking to you!”

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We love bathtime

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We hate bathtime

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“HALP! DON’T GIVE MOMMY THE COMB!”

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“’cause this!”

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“You think you’re taking away my MiniBug? Back off, Buster!”

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“MiniBug is MINE!”

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“You can’t steal my MiniBug but I’ll give you a kiss instead!”

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Knocked out

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“Really?”

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Still trying to decide how she feels about this outfit. I just love this funnyface.

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“Oooh, this is soft!” Leah was playing with this dress ALL DAY. She was having fun tossing the ruffles up and down, holding onto the layers, and even trying to nom on it.

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Robyn & Hillary!

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Here you see the whole outfit. If only they made white baby socks that looked like knee-high boots.

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Hillary took this pic!

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“Hi Uncle Ralph!”

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Sleeping Beauty

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Sweet and psychedelic and alllllmost smiling.

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Little button nose

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There we go with the weird neck position again! She seems to love it!

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Hi Mama!!!

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Practicing our dance moves.

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She is too cute. You should need a license to be this cute.

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*love*

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BabyBug is getting pretty good at tracking! I can’t tell if she’s following me and the camera, or whether she’s noticing the little red light that flashes when I get ready to shoot the picture. Either way I’m proud of her!

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“Look, Mama! I can look up and down!”

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How is she so cute???

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Yeah. That happened.

My little Stinkerbell

Yeah – that’s what I call her when she prepares a beautiful diaper for us.

At this moment, she’s a Stinkerbell for another reason. I recently purchased this “Oatmilk Calendula” organic baby lotion for the Tiny Tot because her skin is super-sensitive and we want only natural products used on her skin.

Well. I can’t decide whether my child smells like a dreadlocked hippie or a 60-year-old man, but either way, suffice it to say that the next time I purchase baby lotion, its scent will have a more descriptive title than “Oatmilk Calendula.” Something along the lines of “Hey, This Is Scented Purely With Lavender Oil.”

The Countdown Begins

Leah’s surgery is in 23 days.

I guess summer is over. It’s been very hot the past few weeks, and suddenly I went downstairs and stepped outside to see this:

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Gran drove me to an appointment in Pasadena this morning, and what was overcast and a little drizzly on the way there, turned on the way back into rain slamming the pavement and LA drivers becoming even more terrifying than they already are. The weather in Leah’s room is also pretty challenging. Yesterday we gave her a bath, and before undressing her we turned the thermostat up to 85 degrees in the hope that it would at least get a little bit warmer in the room so the kid wouldn’t start shivering. Well, it didn’t get warm. A little later we checked the thermostat and it was 70 degrees in here, even though it was set at 85. So we asked them to call maintenance and turn up the heat a little bit. Cut to 45 minutes later and the room was practically a sauna. Sheesh. There is no middle ground!

It was Baby Central in PICU this week, but lately there are some bigger kids coming in. The pediatrics waiting room has been PACKED all week. It’s like a giant party in there every day. I’m not sure if it’s one kid with a huge family or a few kids with moderate-sized families, but it’s SO BUSY in there almost every day. Even the security desk downstairs has been busy. On Sunday the line out the door was like the line at Diddy Riese.

Just need to take a moment to vent:

I’ve gotten to the point where I no longer volunteer Leah’s story to Peds and PICU parents who start a conversation with me (like in the elevator or the little room with the microwave) unless they ask for it. I’ve found that most of the time people just want to talk to anyone who will listen, so I let them. If they say they’ve been here for a month, I just say, “Wow.” It’s not a competition. On the other hand, I am endlessly grateful for Leah’s relative health compared to some of the other babies here. It’s easy to forget, in the colorful little bubble that is Leah’s room, how sick some of the other kids in PICU and Peds actually are. On the OTHER hand (said Tevye), Leah can look deceptively healthy. The lead PICU doctor (at least I think he’s the lead doctor as he really doesn’t see Leah that often and isn’t one of her main docs) has suggested more than once that Leah be moved to Peds to make room as flu season approaches. This is based largely on the fact that she is not intubated, and also due to some confusion over whether the fact that nurses aren’t logging every single clog necessarily means that Leah is improving. Memo: This suction tube situation only gets worse, not better. There is no improving on that front until Leah can swallow.

Thank goodness the surgeons shot down that suggestion immediately. I know that this doc is just anticipating a higher volume of patients and trying to stay a step ahead by taking ‘inventory’ in advance, but Leah is in a precarious situation and she needs to stay put. It’s easy enough to look at her and say she’s healthy enough to leave the ICU until her surgery, until you remember that the only thing keeping her healthy is that suction tube and the CONSTANT monitoring that it requires. As one of her nurses put it, that tube is her life support. It’s the only thing standing between Leah and aspiration pneumonia, which can be fatal and which would certainly throw a wrench in the plans for her primary repair. The last thing Leah needs before her surgery is to be placed on a unit where she isn’t going to have the vigilant monitoring required to keep that tube cleared and functioning. She can’t afford to get sick. If she was moved to Peds, she would develop pneumonia and then have to return to PICU, but in worse condition than she was when she left. What good would that accomplish?

The last time it was mentioned, he suggested that we be taught how to do the flushing. Totally not cool. We already feel we have to be here when a new-to-Leah nurse comes on duty because things don’t always get passed from nurse to nurse. We are here with our baby every day – for five months – but it is simply not fair to put us in a position where if we leave the room even for a couple of hours we are putting our child’s life at risk. It’s too much to ask.

Thankfully he hasn’t raised the issue again in the past few days, but I know it will come up again as the unit fills up.

< / end vent >

Okay. Can you tell Mama is getting more anxious as the surgery date draws near? That’s enough for one blog, anyway. Have some pictures.

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Nomming on knuckles

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Look at those chubby thighs!!

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“Hi Lizzie! There are no spiders here, only BabyBugs!”

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“OM NOM NOM MOMMY SHOULDER!”

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I want a dress like that! It looks so comfy.

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Precious

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Working hard!

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“OMG, it’s Cool Auntie Erin! I shall stare at her!”

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“Aunti Staci is here! I’d better go to sleep before she tries to teach me how to keep my tongue in its house.”

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Cutest sleeping face ever.

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Sweetie pie

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Can’t handle her little eyelashes!

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OMG. Does this even need a caption?

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“WHEEEEE! I’m a baby!”

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“OM NOM NOM. FINGERS.”

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Blurry but sweet.

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“Oh hai, Gran! I hope your arm feels better soon!”

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“Mama and Gran are so silly.”

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“Like, omigawd, Mama, look at my totally awesome bracelet.”

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I love her little eyebrows. She is so expressive.

A word you haven’t heard in a while: PHOTOBLAST!

WHEW! Bet you missed that word!

Here’s another update you haven’t gotten in a long time: Leah weighs 4.54kg, which translates to 10.009 lbs. That’s right – BabyBug hit her 10 lbs mark right on time – in almost exactly 5 months. She would be ready for surgery now except that her surgeons are going out of town mid-month and they don’t want to leave right after her procedure because monitoring is so critical. But I’m pretty freaking impressed with their guesstimate as to how long it would take Leah to reach 10 lbs. She’s actually been up and down between about 4.5 kg and 4.6 kg for a couple of days, but she seems to be squarely on the 10 lb mark. They just raised her feed to 80mL from 75mL and started adding whey protein powder to her milk. They felt she wasn’t gaining enough with just plain breast milk, so they advised adding the protein. I guess it’s better than the formula, at least. The down side to the protein is that it makes it harder for Leah to produce the dirty diapers we so love to change. The past couple of days she has had a hell of a time. But we’re pretty sure she has learned the word “suppository.” She was crying in discomfort all afternoon on Friday. Her nurse finally got the go-ahead to give a glycerin suppository and was just about to start prepping it when Leah threw her hands up and said, “OKAY, OKAY, you WIN, I’ll POOP.” It was pretty funny. Today was another rough tummy day. She screamed at the top of her lungs for roughly 45 minutes, but admittedly, part of that was because Mama fed her a little late because we were busy dealing with tubey stuff. It took two Mamas AND the nurse and almost an hour to get the whole feed down. A little while later she gave us two giant yucky diapers and was suddenly a different baby, all wide-eyed and ready for playtime. Her doctor said we can go ahead and give her a little bit of prune juice but he wants to clear it with surgery first.

And now you are fully updated on Ms. LeahBug’s status. Don’t you feel well-informed? Hey – this wouldn’t be a proper baby blog if you didn’t have to hear about poop occasionally.

Other updates: Gran had to have surgery on her broken wrist on Friday. I wonder if she will set off metal detectors now. I’m still in some pain but have stayed out of the ER since last Monday. Good times. Mandy is sound asleep after spending the day with an icky migraine. In more cheerful news, we had a nice little night out on Friday when we went to see Auntie Erin’s band play at the Voodoo Lounge at the House of Blues. Very, very cool. We’re kvelling over here. And earlier today LeahBug got to snuggle with her cousins Sasha and Savannah for the first time. She fell asleep in Sasha’s arms. Sasha, you should take that as a compliment.

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This is what our hair looks like in the morning. Shhhh. Don’t tell anyone.

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Knocked out in one of her baby shower onesies.

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“Oh hai, nursie!”

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Tubeless and sleepy

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Knocked out on Uncle Ralph

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“I’m the King of the World!”

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Sweet little face

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“Really? Look at these eyes? Do these look like eyes that are awake enough for tummy time? Really?”

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Okay… THESE look like eyes that are awake enough for tummy time.

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Sleeping with one eye open – just in case the Mamarazzi decide to pull some of their little tricks

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“Tummy time? Here’s what I think of that idea!”

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“Another picture??? I thought we talked about this!”

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She’s into all the latest fashions.

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I could stare at this little sleeping punim for hours.

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More shayneh punim

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Cousin Savannah

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Cousin Sasha and the sleeping Empress Baby.

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Cousins Savannah and Sasha.

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Cousin Savannah just got upstaged.

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Cousin Oleg being a hammy ham

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Auntie Corine

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“Let’s talk about this outfit.”

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“Enough talking. Time for glaring.”

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“Auntie Co, my fingers are so nummy!”

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“I gotta get out of this outfit, see? I need a footie sleeper, see?”

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Well, two out of three paying attention ain’t bad.

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Theeeere we go.

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“Let’s talk again about this outfit.”

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“Mama, it needs black leggings and pink sparkly shoes. Come on. Get it together.”

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“This is as close as you’re getting to a smile. Like it.”

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A deep and meaningful conversation with Aunti Staci.

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You can’t help but love this little face.

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Tiny baby all tucked in.

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Knocked out after a long, hard day of babyness.

Reunion!

Not a ton to update today but I feel guilty about not updating for a few days, so here I am! BabyBug had a better day today – she got lots of sleep and hasn’t pulled out the tube yet, though it did get loose once. She had a bath earlier this afternoon and it knocked her out for a bit.

We have been seeing NICU nurses up here for the past few days; apparently it’s been quiet down there so the nurses have been “floating” here. We heard that one of the NICU nurses is moving to a different hospital after today, so we went downstairs to say goodbye, and wound up running into a handful of Leah’s other NICU friends as well. We had a nice couple of minutes showing off BabyBug’s Big Girl pictures, and then one of the nurses took a break and came upstairs to visit with Leah for a little bit. We had a nice visit and Leah was happy to see an old friend, although she seemed a little wary at first: “Are you going to mess with my tube? No? Okay. You may stay.” I can’t wait until we can bring her downstairs to wave at everybody before we take her home!

Now Mommy and Mama are having a nice quiet evening with BabyBug. We attempted tummy time, but Bug was so tired that all she really did was try to see whether pink and green taste the same. No word on the verdict. At present, Leah is snoring into Mandy’s shoulder.

I would like to state for the record, BTW, that there is absolutely nothing better than a giant babysmile. Even if it’s random and not quite social yet. It’s the best. The very best. That is all.

BabyBug keeps us on our toes

Well, Leah has been keeping everyone busy the past couple of days. On Tuesday she was breathing with more stridor than usual, broke out in a heat rash, spiked a fever of 99.8 degrees, AND got a random blister on her chest, all the while being Little Miss CrankyPants if anyone dared to set her down. Thankfully (which AutoCorrect changed to “Hanky Handily” – what???) the fever went down after we took off her long-sleeved sleeper. She had a chest x-ray and a nose swab and everything looks normal, but she was still having retractions and more breathing noise than we are used to, so we will be keeping eyes and ears especially wide open. The blister turned out to be from the leads – as she squirms, the gel separates and eventually the little black snap on top comes into contact with her skin and since it has a hole in it, it leaves a little suction blister when you pull it off. Mystery solved!

Yesterday Buggy’s heat rash seemed to have mellowed out a little (it’s under her diaper) but we could see little spots on her forehead and eyelids too. Sigh. Her big claim to fame yesterday was making her nurse retape or replace her repogle probably a dozen times, if not more. We have been using smaller pieces of tape because her chin is all irritated and scabby, and let’s be real – the tube loosens in the middle of the tape, so no matter how big it is, eventually she will be able to pull the tube down and out through the tape. Part of the issue is that she has discovered how very nommable her fingers are, and is on a perpetual mission to get them back into her mouth. She misses most of the time but sometimes she has a victory and gets to eat babyfingers for a bit. This gets the tape more wet than usual and loosens it, and voila! There goes the tube! At one point she was playing mean with the nurse – nursie would retape the tube and then as soon as she walked away, baby ripped it off. Like, five times in a row. Thankfully her nursie had a good sense of humor.

Mama didn’t have such a great yesterday either. I had to stay at Home Home Tuesday night for a Wednesday morning doctor appointment, and had to take the bus and train back to the hospital with my overnight bag. By the time I got to PICU I was in terrible pain. Aunti Staci arrived soon after I did, so I took a nap doubled-over in fetal position while Aunti Staci entertained Ms. Bug. It took my pain meds almost 2 hours to kick in. I was seriously ready to go to ER again and make sure I didn’t bust a suture or something. I hate going to the ER. I wish I could just, you know, keep a doctor in my pocket or something. The pain mellowed out eventually, but not before three different nurses told me I looked pale. Ugh. I’m so ready for some improvement. Here’s hoping today is a better day for all of us!

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Our little dolly, all tucked in

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Awesome bag made for Leah by Peggy!

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Little rainbow dress

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“Oh hai, Gran!”

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Totally knocked out. OT has decided they don’t want her on the gel pillow anymore, so she has a little bit more freedom to squirm around on the bed. This is the result. And yes – she has somehow managed to pull off her tube and fall asleep at the same time. Nursie was prepping the new tape. Oy vey.