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!

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?

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

Our toesies, however, are still pretty tiny.

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

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

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

AIR KISSIES!

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

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

“Oh hai, guys! It’s Halloween MONTH!”

We love baby leg warmers!

“Whatchoo doin’ up there, Mama?”

“NOMNOMNOMNUMMYFINGERS!”

Sweet face

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

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.

Bobblehead Baby practicing neck control!

“Are we done yet?”

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!”

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

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

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

“Tada!”

I’MTHEKINGOFTHEWORLD on Mama’s lap.

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

“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.

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

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!”

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

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

“It’s hard being so cute.”

“Hi world! I’m upside down!”

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

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

“Oh Mamas, you silly!”

Look at the feet!!!

Look at the antennae!!!

Look how cute!!!

Do ladybugs have tongues?

“SILLY MAMAS UPSIDE DOWN!”

Nope – silly BABY upside down!

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

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

Best family portrait ever?

Smooooooooshy cheeks!

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

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

Sleepy LadyBug

Um…. if the Unibomber was a ladybug?

Ladybug with a flower crocheted by Mommy!

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

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

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

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

Best family portrait ever? Yuh huh.

BIG YAWN right in Mama’s face.

Mama makes a comfortable lounge chair.

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

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

Twinsies.

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

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

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).

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:

(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:

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:

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.

Nomming on knuckles

Look at those chubby thighs!!

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

“OM NOM NOM MOMMY SHOULDER!”

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

Precious

Working hard!

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

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

Cutest sleeping face ever.

Sweetie pie

Can’t handle her little eyelashes!

OMG. Does this even need a caption?

“WHEEEEE! I’m a baby!”

“OM NOM NOM. FINGERS.”

Blurry but sweet.

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

“Mama and Gran are so silly.”

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

I love her little eyebrows. She is so expressive.

For those of you keeping track of the Mama Drama… the answer to the question, “How did it go Saturday night?” is that I just spent five hours in the ER this afternoon/evening after spending all of yesterday feeling like I drank acid and after being sick most of last night. The surgeon did say it could take a few weeks to see a difference since I’m still healing from surgery, so I’m not writing this off as a failure – I just think maybe Saturday was a leeeettle too early. Will keep you posted, as always.

Leah had a pretty uneventful day, which I guess is the best kind of day when you’re in the ICU. She had her blood drawn this morning (boo!) and her 6PM feeding was late (hiss!). She had a visit from her cousin Beth, who came bearing awesome gifts from various family members (pics when I upload a new set!). The little Bug wore herself out with crankiness (due to the late feeding) and now she’s totally knocked out in her vibrating throne. I think Mama will follow her lead and get some early sleep tonight. Maybe.

Our sleepy girl and her piiiiiinchy cheekies