October was a little more exciting.

So here’s how October went…

We have taken to bringing Leah to our bed when she wakes up in the morning so we can play and be silly before we all have to get up. We take lots of silly, silly selfies and sing lots of silly songs.

We also stand on our mommies.

She has some shmutz on her bib and some sass on her face.

Look. We don’t get out much. So when Auntie Jo brought home a puzzle she found on clearance at Target, we were like, “Hey, cool, something to do all together after the baby goes to bed!” So we did it. And then we did another one. And another one. They were only taking us a couple of days, and I was just thinking we needed more of a challenge when I found a coupon code for a custom puzzle. I may or may not have put together a collage of baby pictures, and there is a distinct possibility that I thought it would be a good idea to order a 2000-piece puzzle. I don’t remember exactly what day we started, but the picture above was taken October 7, by which point we had made some significant progress. We did not finish in a couple of days. Auntie Jo and Mommy Mandy were relentless in their mockery of Mama Lisa’s brilliant 2000-piece idea. I’m just glad we finished in October.

Of course, we missed a couple of days on account of Leah getting her heart all fixed up. Here she is, waiting patiently for the OR to be ready.


X marks the pulse. Also, toes.

Naptime is over! Prepping for her procedure with a few push-ups.

Post-procedure Mommyfingers.

“Um, Mama? Help a baby out?”

Morning! Time to go home!

Delighted to be home, but way too distracted by the kitty to bother with a smile.

“Mama. I NEED him.”

Silly billy baby.

I’d say we were doing pretty well by October 10.

Can you find a baby?

Petting her kitty-tails book, which she got from the Butterfly Fund. Hopefully it will keep her little paws off of the real kitty tails.

Yep! This happened! Our friends Brian and Lisa came down to LA for a wedding, so they visited us and met Ms. Bug while they were in the area!

LeahBug was a wonderful hostess, and even made sure they were happy with the photography arrangements. “How’s it going back there, guys?”

This is our “I will do push-ups for an hour while I’m supposed to be going to sleep, but don’t tell my PT ’cause I’ll just tell her you’re making it up” face.

“I NEED TO SQUEEZE HIM.” Why do I have the feeling this cat is going to be a major motivating factor in my child’s mobility development?


October 15. Coming along!

Mommy chin.

Mommy chin.

Mommy chin. “Mama, you’re getting this, right?”

What do you say, folks? Is she teething, or is she teething?

A couple of months ago, a woman (AlisaMarie) posted on one of the special needs Facebook groups to share a project that she and her husband would be working on. They are planning to do a road trip across the United States and photograph families along the way who have kids with special needs. They will provide the families with (gorgeous) digital photos, and also use the photos to create a coffee table photo book telling the stories of the many children they meet along the way. They wanted to start with a few families before launching their KickStarter, and since they are based in Southern California for now, they were kind enough to include Leah in their pre-launch photo group. We love the pictures they took, and are keeping fingers crossed that they are able to fund their project. It sounds amazing. If you would like to help (or if you would like to participate as a family being photographed), please check out their web page, Project: A Road Less Traveled, as well as their Kickstarter campaign. The different levels of pledges include various benefits, including t-shirts and copies of the finished book.

Here are some of the photos that AlisaMarie took.

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A little Etsy-type shop on Instagram offered to send LeahBug this adorable shirt in exchange for a photo they could share of her wearing it. AlisaMarie was kind enough to snap this on my camera so I could send it to them. This picture is exactly what I envisioned in my head, and she got it in one shot. I’m impressed. 🙂

October also marked Leah’s mommies’ 12-year anniversary together. We decided to squish her in celebration. Squiiiiiiiiiish. What did Mama and Mommy do on their anniversary? We went out for tamales at our traditional anniversary/celebration restaurant, and then went down to the 3rd St. Promenade to walk around and get dessert. Somehow we magically found ourselves in front of the Old Navy baby clothing clearance rack. I can’t imagine how that happened.

This face.

October 19. “But look how much progress we’re making!” “You said that last time!”

Grandpa Billy Goat chillin’ with the bug


Leah has been making slow but definite progress in her oral feeding. She is still only getting small amounts therapeutically, but last month we started feeding her Gerber Puff crumbs by mouth, and now she is able to eat several whole puffs in a row!

“Well this is new.”

October 22. Getting a little less creepy now that some of the Bugs have faces.


What is October without a visit to a pumpkin patch? Initially we couldn’t find one nearby that was open and unlikely to be packed with people, so we went to an elementary school “harvest festival” instead. Still had some cute photo ops. 🙂

“What is it?”

“Okay. I accept it.”

Family photo!

October 25. “We’re so close!” “You’ve been saying that for weeks!”

We decided to do our own little photo shoot with the pumpkins we bought from the harvest festival. We felt a little guilty having sat by the pumpkins for so long taking pictures, so we kinda had to buy a few. Of course I had to put LeahBug in the dress we bought for her on our anniversary.

“Mommy. Please. This is MY photo.”

“Mama, if you don’t get out of my photo I will eat your hand! Actually, I’ll eat your hand anyway!”

“Mama, am I doing the duck-face right?”

“Gran, I don’t even want to hear it. Why does everyone want to be in my picture?”


“Kitty, YOU can be in my picture!” Yeah. Someone crashed our photo shoot.


October 27. DONE! YES! FINALLY! We have now painted over it with puzzle glue and are trying to find a cheap way to frame it and put it on the wall without destroying it.


A few days before Halloween, Aunti Staci and Mama and Baby went to the real pumpkin patch! They had a petting zoo, and pumpkins, and PONIES.

Leah tries to pet the goat with one finger. That’s her big thing right now – she likes to do “ET, phone home.”

Bunnies! Bunnies, it must be bunnies!

“Oh hi, Mr. Goat. I like my toes too.”

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Hey, remember that time when we went to the pumpkin patch and a herd of goats tried to eat the baby?

Aunti Staci decided Mama wasn’t doing a good enough job of fending them off, so we traded places. We think they smelled the food from her g-tube.


“Mama! It’s a pony!”

“I waaaaant… that one!”

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Cutest punkin’ in the patch.

Sillie selfie to send to Mommy!

Ms. Bug was a “Teeny Tiny Honorary Nurse Practitioner” for Halloween. When I get to November I will share a photo of her with her Grown-Up Actual Nurse Practitioner.

So that’s October!

September, in photos

I posted my updates in September – you might remember that Leah was in the hospital for five days with an unidentified virus and that is why the doctors decided she needed her heart repair ASAP. You can refresh your memory here if you like.

Usually Leah looks like a little Cabbage Patch Kid, but for some reason this picture makes me think of Rainbow Brite.

Theeere’s the Cabbage Patch Kid.


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I couldn’t pick just one.

Um. I couldn’t pick just two.

This is a sleepy toddler.

We get that “windblown” look when we sit in front of the air conditioner. Or, you know, that “I just walked head first into the Santa Anas” look.

Auntie Kimmie!

Chillin’ with friends!

How are we this happy to be back in baby jail???

This is how Mama would look.

But somehow we are just delighted.

I know I already posted this but I love it so much I had to post it again.

This too.

Pleased to be going home!

“Hmmm. Let me think.”

Her two mommies are lucky to be loved by her!

Cutie pie on two feet. In skinny jeans.

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Our first Rosh Hashanah services! She had so much fun at the family service!

Pondering deep thoughts, I’m sure. Or deciding whether or not to eat the shofar.

August, in pictures.

I already blogged our August updates (here’s a little refresher but here are my favorite pictures. I’m trying so hard to catch up to the end of the year before, well, the end of the year. So I’m going to save current updates for after the photoblasts!

A bunch of dollies.

These next two pictures just bust me up.

Leah’s Cool Aunti Erin was holding her but not looking at her.

This was unacceptable.

Badass BabyBug.

Not-so-badass BabyBug.

Like silly mama, like silly bubba. We spend way too much time taking ridiculous selfies.

“Mama. I need your hand.”

“No, you don’t understand. I NEEEEEED it.”

“I had your hand, but I eated it.”

I know it’s a little blurry, but I just can’t deal with those cheekies and I need help coping with them.


Okay, that was our cat Lobo helping me cope with the cheekies.

These are a few of my favorite toes!

More cheekies with which I can’t deal.

Leah went to her buddy Ari’s first birthday party!

LeahBug and Dani

The South Bay Triplets

South Bay Triplet toesies.

We went to our dear friends’ wedding in August, and Ms. LeahBug was a flower baby. Unfortunately, she was a bit wilted during the ceremony. It was pretty hot out, and also it was only a couple of days later that she had a cold and a stoma infection. So I don’t think she was feeling very well. 🙁 It was a gorgeous ceremony, though! How awesome is that dress?

We did manage to get one little half-smile out of her.

At the doctor’s office, on the other hand, she was allllll smiles. Even though she was sick.

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Bubba didn’t feel very well.

…aaaand guess where we wound up later that week? I posted already about her GJ coming out. They also thought she might have a c-diff infection but thankfully her symptoms turned out to be side effects from her antibiotics. Why does she look so happy? This child.

SO delighted to be back in PT. Even now, all this kid wants to do is stand. Her desire to stand is so strong that it has actually motivated her to learn her first sign. I’ll try to capture this on video!

“Mush, mamas! Mush!”

Our first drive-through carwash. Concerned Baby is concerned.

Whee! This is new!

Tiny curls. Tiny tiny curls.

NOW for the photos…

Behold, the month of July, in pictures! I’ve already told most of the story in previous posts, so I’ll just refresh your memory here and not get into details. But first…

Mama Lisa was so pleased that Sarah McLachlan answered our very important question during her “Live Tweet” Q&A event.

Okay, now July, for real.

Nobody likes getting up this early for a dilation…

…but sometimes we just have to resolve ourselves to the fact that doctors like mornings.

Leah was SO red after her procedure. They ultimately decided to keep her overnight for observation.

Sweet face

Independence Day in Baby Jail!

“They say I’m going home soon!”

“I’ll believe it when I see it.”

“Maybe Emo Pony Face will help?”

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Home at last, and using our time wisely – resting up for a night at the beach!

“This is so much better than Baby Jail!!!”

We are super-redwhiteandblue today!

All cool in our warm denim jacket.


It helps her balance.

’nuff said.

Another day, another fashion statement.

Our friend Ry Ry gave us his old jumper because he’s too big for it now! With a few layers of foam mats underneath our feet juuuuuuust rest flat on the ground. We LOVE this jumper. LOVE. IT.

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Just for the cute of it.



It’s like that mirror scene with Lucy and Harpo Marx in “I Love Lucy,” right? These two are too cute together.

Something off-camera is both fascinating and hilarious.

Our first piggies.

Our second piggies. Aunti Staci does them so much better…. too bad these came out and I had to redo them, leading to the third set of piggietails in two days.

“Mama, look at these piggietails! I can’t be seen in public like this! I just can’t!”

“Just kidding. I love your piggietails.”

“They’re almost as tasty as this tubie.”

Apparently the third time was the charm. This picture only got 1.4 MILLION likes on Facebook. I am not even kidding. LeahBug’s piggietails went viral!!!

Are you kidding me with this?

No kidding needed. They really are that cute.

Sillie selfies at Mommy’s birthday party.

A rock star in the making.

Aaaaaand here we are again. Baby Jail. They planned to put a GJ in on July 17 but she was getting dehydrated and not keeping anything down, so they admitted her the night before the procedure to get some fluids into her.

Smily baby.

Smily baby.

No, but seriously – smily baby.

Smooshy baby.

Where’s the baby?

We left the hospital July 18th, and then on Saturday the 19th we went to a “new parent picnic” for families whose babies with Down Syndrome were born in the last couple of years. I already posted pictures from this event. They were too cute to wait.

But by July 20th we were back in Baby Jail.

Working on our muscles by doing baby push-ups!

Treadmill Mommy

We were all set to go home that Monday night when surgery ordered a CT scan just to check on the fuzzy area in her lung. And then we didn’t go home. The omentum (fatty outer covering of the intestine) had migrated into her chest cavity by forcing its way through a couple of sutures in the diaphragmatic hernia repair. They decided to repair it and do a Nissen fundoplication while she was already admitted.

Mr. Puppy keeps us company at the hospital.

Sometimes we try to grab his nose but usually we aim for his feet.

Just because.

Did somebody ask for Smily Baby?

Some counterbalance for all the Smily Baby photos. A lot of people have said she is always smiling, and it’s true that Leah is a very happy baby… but let’s face it – she’s still a baby. And luckily for her, she’s still heartbreakingly adorable when she is mad, too. So I had to post this to her Facebook just to offer proof that she does in fact turn that smile upside-down on occasion.

Baby sammich, a.k.a. gastric emptying study.

Surgery day, post-recovery – you can tell by the OR tan.

Always with the cables.

After a few days she was feeling a little bit more lively.

Ducky was by her side throughout the ordeal.

And NO, she is definitely not sleepy:

Ducky and Pony

Pleased to be on the road to HOME.

This one is definitely getting saved in the “Babymoticons” folder.


Back in the saddle again – if by saddle you mean baby jail

Every time I plan a long photoblast it turns into an update that we’re in the hospital! The title pretty much says it all, but I might as well get all this down for future reference.

Last Sunday night (the 7th) to Monday morning, we had quite a miserable time overnight. Leah was up very frequently gagging and groaning and crying, and in the very early morning had a fever of 103.4. She also had four little red specks on her leg. We decided to take her up to urgent care. Of course, by the time we were at the doctor’s office Leah was in a delightful mood, clapping her hands and beaming at the doctor.

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He concluded that she likely had a viral infection, but that she looked good and we should just keep an eye on her and bring her back if she got worse. I pushed back at him a little bit since Leah tends to surprise us with funny things that aren’t your run-of-the-mill virus, but he seemed pretty confident that was the problem. Still, by the time we left the elevator and stepped into the lobby, he had called me back and recommended that we get a chest x-ray just in case. We had another rough night on Monday, and I actually wound up sleeping in the recliner in Leah’s room for a good portion of the night because it seemed pointless to leave the room when I would have to come right back in next time she woke up. She finally fell asleep around 2AM.

Tuesday morning the doctor called us back to let us know that the chest x-ray wasn’t conclusive for pneumonia, but her lungs looked unhappy enough that they wanted to treat for pneumonia just in case. Okay, he didn’t say unhappy – but I can’t remember the term he used.

So Leah had her antibiotics, and gradually improved throughout the week. We kept her home from therapy on Tuesday and Wednesday because of her continued fevers, but by Wednesday and Thursday we were starting to see more improvement (and get more sleep). On Friday night everything just sort of went to the birds. We had friends over for dinner and had an absolutely lovely visit, and Leah even went to sleep relatively on-time. Then around midnight she woke up fussing and gagging. This continued all night, and early Saturday morning she spiked a fever of 102.6. By about 5AM we noticed that she was breathing pretty fast, and by 6AM she was practically panting in her sleep. Based on what we’ve seen in the past we didn’t feel like we needed to get an ambulance, but we definitely needed to get her to a doctor Saturday morning. So that’s what we did. We got an early appointment and they admitted her from the pediatric urgent care clinic – but not before making us shlep all over Sunset Blvd to get labs and x-rays done. We still don’t understand why they didn’t just admit her first and then do testing – they weren’t going to send her home with the way she had been breathing.

The nurse at the peds clinic scared us for a minute. He came out and was so somber and told us that she was going to be admitted and that the doctor would be speaking with us soon. We asked him if the labs showed anything and he said the doctor would speak with us. So naturally we started worrying immediately. Our big concern at that point was this enterovirus that has been going around. But then we asked him again if he could tell us what the labs showed and he said something about low red blood cell count, and at the same time I got an email showing that she had high white cell counts. And the nurse was so somber. So we started getting a little antsy and worrying that maybe we should be worrying about leukemia. The L word sort of lurks in the back of the brain for parents whose kids have Down Syndrome since it’s more likely to show up in our kids than in typical kids. And he seemed so solemn! But then we also considered that he is used to breaking the news of hospital admission to families that haven’t spent months on end in the hospital, so perhaps he was being solemn for that reason. So we tried not to worry too much, and thankfully what worry we did worry seems to be for naught. Leah is anemic – very anemic. The working hypothesis seems to be that Leah caught a virus or something, and that it may or may not have developed into pneumonia (they are treating her for it out of precaution), and that her anemia has probably developing for some time and isn’t necessarily the cause of her shortness of breath but certainly isn’t helping. From Saturday morning to last night, Leah was requiring daytime oxygen; she was desatting to about 89-92% without it. She was satting as low as 84% while sleeping, and that’s with her old O2 level of .25L. As of today she’s back to her usual O2 regimen, except that when we take her home we will need to keep her on O2 while she naps and while she sleeps instead of just overnight.

But wait – there’s more. Leah has a lot of congestion in her lungs, and the doctors doubled her Lasix to ward off heart failure. Her cardiologist came in yesterday and advised us that he now recommends that Leah’s heart be repaired next month instead of waiting until she is 4 or 5 year old. His previous recommendation was to wait because there was no indication that we needed to do anything immediately. But at this point he feels Leah is just going to keep bouncing back into the hospital with respiratory infections all winter and that is going to be hard on her lungs. It will be safer for her to go into this cold and flu season with a repaired heart. So we spent the night contemplating open-heart surgery.

Today, the pediatric cardiac interventionist came in to discuss the possibility of repairing Leah’s VSD via cardiac catheterization. It’s a procedure that is done pretty consistently for PDA repairs and for ASD repairs, but typically not for the VSDs. But this is the way of the future, apparently – they are developing ways for more and more of these procedures to be done by less-invasive means. If we go ahead with this procedure it will take place in only a few weeks. So Leah is getting a blood transfusion tonight to boost her iron levels since she wouldn’t have enough time to replenish her blood count and iron levels between now and the future procedure with just iron supplements.

So we have a big decision to make. Go with the far more dangerous procedure that WILL be a total fix – assuming Leah actually pulls through open-heart surgery? Or go with the far less dangerous procedure that still has risks and may or may not fix the leak (again, assuming Leah pulls through), but is far, far less risky and has a significantly better recovery time? Letting Leah go through this winter without a repair is a pretty risky proposition as well. So. That’s where we are right now.

Also, this:






Can’t seem to stay away

We had another little visit to the hospital last week when Ms. Bug’s GJ tube pulled out. Earlier in the week we had begun the process of transitioning her back to g-tube feeding; we got a second pump and were gradually reducing the j feed and adding to the g feed. On Thursday the GJ came out, and Mommy and Gran put in the regular g-tube and drove Leah up to the hospital (Mama was away all day), where she was admitted in peds. The initial plan was for the GI on call (who knows Leah well and has done some of her dilations) to reinsert the GJ tube Thursday night, but Leah’s primary GI decided this would be a good chance to see whether Leah could tolerate full g-tube feeds. We stayed at the hospital for observation and increased Leah’s g-tube feed 5cc every three hours until she was at full continuous feed. And now she is back to the g-tube! Hurrah!

I think I mentioned previously that Leah caught a little cold last weekend. The good news is that she doesn’t seem to have pneumonia yet. The bad news is that the cold is thickening her secretions and making her gagging and retching much worse. She also developed a bit of an infection in her g-tube stoma, probably around one of the sutures, and the docs put her on antibiotics. On Wednesday night, we had what we might call an epic poopsplosion that reset the scales for epic poopsplosions. Leah was in her jumperoo and Mandy glanced over and noticed that she was awwwwwfully happy. Why was the baby so happy? Well, the antibiotics had caused a giant poopsplosion that had leaked out of her diaper and onto the floor, and Ms. Bug was kicking her feet around in it and having So. Much. Fun. We did not have so much fun cleaning it up, but we were still laughing pretty hysterically through the whole ordeal. Ms. Leah went straight to the bath.

SO – when we got to the hospital on Thursday, we let them know of this incident and they decided they wanted a stool sample since they continued to be loose on Thursday. They sent us home Friday, but on Saturday they called us back to tell us that the sample tested positive for c-diff. Oh boy. We have had a pretty confusing couple of days. They said it wasn’t clear whether she had an actual infection or was just colonized, as many hospital frequent fliers are. I left it up to the GI on call to decide whether or not to treat, and he said she should go forward with the specific antibiotics that kill this bacteria. But her regular GI called me yesterday and told us to stop the antibiotics – he did not feel it was appropriate to treat it at this time because it didn’t sound like a full-blown infection. I guess this strain is particularly resistant to antibiotics, so when you go on antibiotics, the good bacteria get killed and this one can get stronger and take over, causing infection and lots and lots of icky poopsplosions. But the antibiotic can itself cause the same reaction, and that’s what the GI thinks is happening. So he wants to wait a couple of days and see if it clears up on its own before attacking her body with 14 days of strong 4x-a-day antibiotics.

In brighter news, we have started mixing Liquid Hope into Leah’s breast milk feeds. This was a compromise with the doctors because it is very difficult to do blended feeds with a j-tube, and this formula is made completely of whole organic foods. She seems to be tolerating it well! We actually won a case of it in a Facebook drawing by the manufacturer, which is super-awesome and helps us out a lot. The best news is that they are coming out with a pediatric formula, which means we would actually be able to feed it to her without diluting it. Right now there is too much protein so we can only give her a small amount each day. At some point soon we are going to transition her to a fully blended diet, but it will still be nice to have the Liquid Hope pediatric formula when we are out and about and the logistics don’t allow for a blended feed.

I’m working on the next round of photos (LOL – the month of July), but in the mean time, here’s an exciting video. 🙂

An actual update

Since we last wrote…

Leah got out of the hospital on July 29. I’m pretty sure my favorite non-Buggy moment in the hospital was from when the GI was in the room talking with me about options going forward. Remember how I said the stuff Leah was spitting up was absolutely foul? The doctors didn’t seem to grasp just how vile it was and I kept trying to find the most descriptive words possible but it didn’t seem to be getting through. At some point the GI doc was concerned that there might be milk in the tube and offhandedly said to the nurse, “Is it milk? Smell it.” AND SHE SAID NO. HAHAHA. I don’t remember which one of us invited him to smell it himself but he did, and he maintained an impressive poker face. Absolutely classic. I would have said no too! She knew what it smelled like. We all did. It was awful! Why put yourself through that deliberately? I was seriously still replaying the scene and giggling to myself for days. “Smell it.” “No!” I’m smiling as I type the story. I hope at least one of you finds the humor in this situation. I swear it wasn’t hospital delirium.

This was my other favorite moment:

SO – yes, Leah came home July 29. She continued to spew yuckies for maybe a week, and then it seemed to be tapering down – but then it got bad again. At this point she doesn’t even always bring something up – just chokes and gags and retches. It’s so frustrating to watch, and I remember how it feels to throw up multiple times every day. It’s exhausting. Exhausting is not even a strong enough word. This kid goes through so much.

On the bright side, here are some exciting things LeahBug has done since she got out of the hospital, in chronological order:

-Sent postcards to Cool Aunti Staci at camp.

-Learned to bang objects together – yay!!!

-Is consistently bearing weight on her feet when we hold her hands! She gets the “LOOK WHAT I’M DOING! I’M SO PROUD OF ME!” face and laughs, just like she did when she learned to sit. It’s so precious you can’t help but laugh with her.

-Listened to her Cool Auntie Erin’s band’s EP in the car.

-Wished a happy birthday to a couple of SuperBaby friends and a “welcome to the world” to a SuperBaby friend who finally busted out of the hospital for the first time since his birth 10 months ago.

-FaceTimed with her six-year-old second cousin for the first time.

-Had a play date with her best friendcousin at the Farmer’s Market.

-Started getting a blended-food formula through her j-tube in addition to her breast milk.

-Went to the Griffith Observatory and slept through the planetarium movie.

-Danced to the new Jason Mraz and Raining Jane album.

-Attended her very first birthday party for kids.

-Served as a Flower Baby in the beautiful wedding of some dear friends to whom Leah led us just before she was born.

-Became a toddler.

-Caught a cold.

That pretty much catches us up to today, which was another long day up at the hospital complex for doctor visits. In addition to what appears to be a cold, Leah also seems to have a bit of an infection of some sort at her g-tube site. They are putting her on antibiotics, which of course turned out to be a variety that can’t be fed through the g-tube, which we didn’t know until we got home. Tomorrow will involve some phone calls… Leah is also getting a second feeding pump and we are going to make an attempt to transition her gradually from j feeds to g feeds. Wish us luck – getting Leah back on g-tube feeds will put us back on the right track moving forward.

Re: toddlerhood… up to this point Leah has generally only really cried when something was physically uncomfortable or painful. But I’m pretty sure that she realized the effectiveness of The Wail while in the hospital, and now we are getting that whenever she gets upset about anything. She is still a very cheerful baby, but in addition to The Wails she has also been whining for long stretches each day. It’s very frustrating because it’s clear she isn’t comfortable but we don’t know what to do for her – mostly it seems like she is a) hot because of the weather and we do what we can to mitigate that, or b) tired and yet adamantly refusing to nap (see video above for a highly-subdued version). The latter is where she has really entered into the realm of toddlerhood, and it contributes to the former because she works herself up into fevers from crying.

In brighter news, would you believe her viral picture reached 1.4 million “likes”? It seems to be tapering off now.

More pictures coming soon.

Back in Baby Jail!

My next post was supposed to be a photo blast, but there’s a funny story about how we went home from the hospital Friday night and then came back Sunday evening… good times.

So. On Friday (I think – maybe it was Thursday. It all blends) they did a chest x-ray and an echo. The heart looks okay, although for the first time her cardiologist said he is thinking this might be a VSD that requires repair. If it hasn’t gotten smaller by the time she is about 4, they will probably repair it. The chest x-rays keep showing this mysterious spot on Leah’s right side, but the surgeons seemed pretty sure it was residual from her hernia repair. On Friday they started Leah on erythromycin to see if that would help her stomach empty enough so that she wouldn’t keep retching and vomiting stomach contents. It worked for a while, and they sent us home Friday late afternoon / early evening. Of course she spewed as soon as we got in the car! But we had been told that could continue for a little while, so we headed home. On Saturday our friends came over in the morning for a visit with the Bug, and then Leah and Mommies went to a picnic for new parents of babies with Down Syndrome. We went last year too, but this time we got to bring LeahBug with us! Leah’s two friends from the Baby Party back in March were also there, so they hung out together and people kept asking if they were triplets. It was pretty cute.

BUT all through this very fun day, Leah was still retching, and she didn’t really keep down her meds on Friday night or Saturday morning, so we got on the phone with her primary doctor ASAP. I tried very hard to reach her GI since he had instructed us to have him paged if we had problems, but the nurses are pretty staunch gatekeepers, and even when I tried to call back on Sunday, I was informed that if the doctor really wanted me to be able to reach him then he would have given us his direct number. Um. I don’t think so. I kept calling and pushing and they finally paged him, and I got about 30 seconds into the call with him before he said she needed to come back. The concern was that she wasn’t getting her cardiac meds and that’s not okay. So they admitted Leah again on Sunday night.

On Monday, once it was established that all of Leah’s cardiac-related blood labs looked good, the GI said her meds could go into the J-port on the GJ tube. Cardio did an echo just to  They wanted to keep her long enough to make sure she was tolerating the meds through the J and then we could go home, but we would need to have a follow-up with her other GI in clinic on Tuesday. At some point during the day surgery decided they wanted to get a CT before Leah went home – they were going to order an outpatient CT to check on the mysterious spot over Leah’s right lung, but figured since she was inpatient they might as well just get it done. The CT was scheduled for 6PM, and at that point we figured if we were going to have to go to the clinic the following day we might as well just resolve ourselves to staying over for one more night. It’s a good thing we didn’t plan for discharge – the CT wound up not happening until close to 11PM. Leah was so tired she forgot to be cranky, and just sort of looked around with bleary eyes and little delirious smiles.

By morning, the plan was no longer for a Tuesday discharge. The CT showed that some of the omentum (the fatty layer that covers the intestine) was starting to poke up through the mesh on the hernia repair. You can imagine how surgery does not like the idea of repairing this Morgagni hernia over and over and over again. Their plan as of last week was that Leah would keep the GJ in for a few months to keep down her food and get a little bigger, and then once they were certain the stricture was completely resolved, she would have the Nissen fundoplication to help control her reflux. But they think that all of this gagging and retching may be putting strain on the hernia repair and not letting it heal. So Leah will finally be getting the Nissen on Friday. She will be having a motility study done tomorrow and if her gastric emptying is severely delayed, she will also have a pyloromyotomy – the same surgery that Mama had last summer.

Odds are we will be in the hospital until early next week. (And I would like to point out for the creeper Internet’s sake that other people live in our house besides us, so don’t think it’s unattended.)

In more uplifting news, Leah is getting extraordinarily bored in her crib, so we took her out in the Peds wagon for the first time and she LOVED IT. She kept rocking back and forth to make it go faster like she does with her PT swing. She will be thrilled to learn that she has a wagon waiting for her at home that she just hadn’t been Big-Girl enough to play with yet (thanks again, Candy and David!!!). She also saw one of her old therapy dog friends in the hall – the collie who wore the Dodgers uniform at Halloween last year.

Oh – and that picture that went viral is now at 698,000 likes.

Still working on pictures, but here are a few to keep you busy:

Baby Party II

Their faces don’t look anything alike, but they are all roughly the same size and have about the same hair color, so people kept asking if they were triplets!

Deep conversation.

How cute is this bow?

“Fan me with palm fronds.”

“Giddyup Mama!”


“Teehee. It’s a doggie.”

Photoblast catchup

Man – every time I think I’ve almost caught up on pictures, a month flies by and suddenly I’m behind again!

So. I think we left off at Leah’s birthday party and baby naming. Aunti Staci and Auntie Kimmie threw a wonderful party for Leah’s birthday and baby naming. We were so pleased to be able to share the day with friends and family, and so thankful to Staci and Kim for giving us and Leah such a special day. They put so much work into everything, and it was totally awesome. I’m sure you will be shocked to know that the theme of the party was “ladybugs.” We are also thankful to Uncle Ralph for making sure there were photographers there to capture the awesomeness! His photographer friends took pics at the party and the ceremony, and then took some uber-cute portraits of LeahBug after the ceremony.

We are also super-grateful to our rabbi, who put together a beautiful and meaningful ceremony for LeahBug. She is the same rabbi who married us seven years ago – which is particularly fun because she actually called dibs on our wedding almost 12 years ago. Hehe. Mandy and I have known her since our college days and throughout our relationship, and it was such a beautiful experience to see her bringing everyone together again for this day in celebration of our LeahBug. Plus, she somehow managed to work a stealth Buffy the Vampire Slayer reference into each ceremony. Because she’s cool like that.

And of course we are grateful to our friends and family, who came out to celebrate this sweet baby and who have supported us and Leah throughout the past 13 months. At our request, many folks brought along items to be donated to the Los Angeles Ronald McDonald House. When we stayed there earlier this month, we brought with us bags and boxes full of items from their donation wishlist, along with almost $1,000 in checks and gift cards (a few people donated separately). It was so cool to be able to do something for LARMH, so thank you to everybody who made that possible!

As you already know, the rest of the month has largely been filled with surgery, dilations, and therapies. Leah’s last dilation was this past Thursday, and HOLY MOLY, the 9mm scope went through!!! SO exciting. Although they had talked about doing dilations less frequently, it sounds like we are back to going every two weeks for the time being – this time because I think they want to seize the opportunity to continue the progress she has been making since the steroid injections began. We have been feeding Leah a little spoonful of puree every day, and have also begun feeding her some thinned purees through the g-tube so that she will get some real food in addition to breast milk. She has been gaining a bit of weight (albeit slowly) but has sort of plateaued height-wise – she really isn’t taller today than she was in February. Hopefully once she starts getting food she will hit a growth spurt.

Next dilation is July 3.

The rest of the month’s stories will be among the photographs.

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Do I have the cutest little sister or what? These things were adorable AND nummylicious – a dangerous combination.

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But like, seriously. My sister and her dessert skillz.

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Leah’s first birthday cake! Hand-made by Auntie Kimmie! It was super-yummy.

This is what Leah looked like for the first hour of her party.

Auntie Kimmie held Bug during the ceremony.

We asked my dad to lead everybody in singing “Ma Yafeh Hayom.” When we were in NICU and PICU we made more of an effort to mark Shabbat and havdalah every week; it helped us sort of note the passage of time and not let the days get away from us. On Friday nights and Saturday mornings I looked forward to singing Shabbat songs to LeahBug, and this was one that I sang often, especially to soothe her. I thought it would be sweet if we all sang it to her.

This dress still kills me.

“I’m the star.”


A special moment – everybody got to see Leah drink a tiny bit of grape juice by mouth.

“Mama, I’m not so sure I like this grape juice business.”

Me and my grandma. We asked her to read the following story from the Talmud (I found this version online, so it might not be word for word):

One day, Honi the Circle Maker was walking on the road and saw a man planting a carob tree. Honi asked the man, “How long will it take for this tree to bear fruit?”

The man replied, “Seventy years.”

Honi then asked the man, “And do you think you will live another seventy years and eat the fruit of this tree?”

The man answered, “Perhaps not. However, when I was born into this world, I found many carob trees planted by my father and grandfather. Just as they planted trees for me, I am planting trees for my children and grandchildren so they will be able to eat the fruit of these trees.”

This is the tallit that I wore at my bat mitzvah in Israel, and the tallit in which we wrapped ourselves at our wedding seven years ago.

A blessing for BabyBug

“Um, excuse me, Rabbi, ma’am, I think I need to pull your hair. Your hair is kinda magical.”


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BabyBug eating LadyBug. Better than cake!

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“OH hey, that’s my name!”

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Scarlett O’Leah

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One of my favorites! BabyBug is ready to party!

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It’s not quite PonyFace, but it’s close! I’d like to state for the record that the photo came like this – I did not add this caption.

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“Mommies, I’ve got this. Outta my spotlight.”

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“Just kidding! I can share.”

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BabyBug and MotherBugs

Buggy and Gran

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Aunti Staci and Uncle Rowf

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Aunti Staci and Buggy

This all went to the Ronald McDonald House! SO COOL.

Flashback: You might remember that a few months ago we met up with Sue, the founder of Binkeez For Comfort, who sent Leah a beautiful blanket while she was in the hospital. Sue brought Leah a “LoveBug” blanket made in Leah’s honor, and she also sent us a big box of gorgeous blankets to deliver to the children in the PICU at Leah’s hospital. Sue is also a photographer, and she recently sent us these photos that she took during our visit.






Okay – end flashback and back to the Mamarazzi pictures. 🙂

Baby Pinky! Precious sweetheart.

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BabyBug enjoying some of her new birthday toys.

So… funny story… the day after Leah’s party, we all went out for breakfast for Uncle Ralph’s birthday. We got a little plate of fruit pieces for Leah, and she tasted each one – strawberry, pineapple, and watermelon. She’s never had pineapple before, so I made a mental note (and remarked out loud) to keep an eye on her because my sister is allergic to pineapple. She had a few little tastes but didn’t seem to like it much, so they moved on to a different fruit.

Cut to an hour and a half later – the kid has little red spots all over her abdomen and the back of her neck:



Naturally we assumed that these spots were the result of the pineapple, since that was the only new food to which she’d been exposed. She didn’t seem to have any trouble breathing, so I called the advice nurse just to make sure we were okay to keep her at home for the evening. The nurse said if she wasn’t having breathing problems yet she probably would not, and we should only bring her in if symptoms got worse.

Well… they got worse.


This was her back a mere 24 hours later – and it had spread to her arms, legs, scalp, and the edges of her face. So we took her to the doctor’s office that day.

Let me just tell you… I would NOT be smiling… And really, neither was she for most of the day. But if you work hard enough you can generally earn a smile from this kid even under some pretty rough circumstances.

We told the doctor we had three theories: 1) Pineapple; 2) Amoxicillin, which she had been taking for ten days (because of the pneumonia); and 3) Her Measles-Mumps-Rubella shot, which had also taken place 10 days ago. I forgot that she had also worn clothes at her party which were not washed in our Free and Clear laundry detergent, but she never had any reactions to the sheets and gowns at the hospital, so I don’t know if that would be it. I’ve read that Amoxicillin can cause a rash even up to two weeks later. It’s not necessarily considered an allergy as much as it is a side effect. The pineapple, however, seemed to be the most likely suspect.

The doctor advised that we give her some Benadryl, and agreed with us that the pineapple was probably the culprit. She had some labs drawn just in case.

We didn’t get any results back for almost a week, and finally, when Leah went in for her hernia repair on June 6, I asked them to just look in the system and see if the labs had been completed. The labs were in the system – and they were negative for pineapple allergy! Go figure! I don’t know what to think. I imagine it’s possible that the antibodies for a pineapple allergy might not show up as quickly as 24 hours after the initial exposure. I really don’t know how it works. Most of the doctors I’ve asked have said an Amoxicillin allergy would manifest immediately, although Dr. Google (I stole that from Baby Walter’s mom) says this particular type of rash can appear quite some time after initial exposure. So I’m torn between the pineapple and the Amoxicillin. We have permission to try giving Leah another taste of pineapple, but I’m thinking maybe we will wait until we are up near the hospital, with a bottle of Benadryl on hand. Just in case. I’ve also heard that with food allergies, sometimes the first allergic reaction is less severe than future reactions. So we shall see.



Naptime for Kitties and Babies

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Swinging time

At RMH the night before Leah’s hernia repair

Nobody likes being up this early!

“Here? Again?” Her surgery was scheduled at about 10AM, but she didn’t actually go in until some time between 1 and 1:30PM. I had a nerve conduction study at noon (no fun) and somehow had time to make it back before they took her in!

Silly Mama and Silly Baby

We brought the RMH donations with us – this is almost everything as they had already started bringing a couple of bags behind the counter.

Post-surgery. Never a welcome sight, but always a welcome sight. If that makes sense.

Sleepy baby

Wearing our ladybug gown from Gracie’s Gowns!

Ladybug lovey

Home sweet home!

THIS FACE. This little stinkin’ cute face.

Also, this face.

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These two toys were birthday gifts from the Awesome Kids Foundation. They are PERFECT for Leah – so perfect that they were the first two things her Infant Stim therapist reached for the next day.

When it’s cold outside, I’ve got the month of May…

Another catch-up post – stories along with their corresponding photos.

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The many faces of physical therapy: Pissy Baby and Proud Baby

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The many faces of physical therapy: Flying Baby and Melty Baby

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Dinner at our cousins BB&E’s house – random sweet babyfaces

Leah got this awesome blanket from Lovies 4 Littles – I had forgotten that I requested one, and then suddenly it showed up just in time for Leah’s birthday and Mother’s Day. SO awesome!!!

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Mandy’s brother and his family came over to visit and celebrate a belated BabyBugBirthday and an early Mother’s Day with Gran.

Leah is doing a better and better job at sitting up!

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Sitting at the table like a big girl!

Our first Mother’s Day outside the hospital! Our whole family met up – grandparents, siblings, parents, a few cousins, my great-aunt and aunt – and celebrated together. Love the family!

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We love Grandpa Bill! Leah was throwing up the entire ride out to brunch (hence the shoulder diaper pictured in nearly every photo) but Grandpa Bill makes it all better.

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After brunch, Mama, Mommy and Baby went for a walk on the beach! Leah LOVES the wind in her hair.

Practicing our Dainty Ballerina moves.

Practicing our Zombie Ballerina moves.

Practicing our Melty Ballerina moves. What an exhausting Mother’s Day!

Modeling our awesome new blanket.

One of Leah’s Instagram friends made this sweet collage for her birthday. <3

We love our Aunti Staci. Her hair is delicious.

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Sharing a moment with Jeepers Creepers. He is her guard-cat lately. I’m thinking he watches out for her because he REALLY likes her toys and vibrating chairs.

Another moment with Jeepers.

Just because. Because this face.

This face again.

And then, you know, THIS face. PONY FACE.


Proud Baby!

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Mmmmm. It tastes blue.

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Mandy sings in a choir, and Leah and I spent the afternoon at her dress rehearsal. Leah was SO good during the actual show – I only had to take her out one time, and she really wasn’t actually making noise, but it was during the “In Memoriam” section so I didn’t want to risk it. She slept through the rest of the show.

My favorite moment during the dress rehearsal happened while Leah was watching the ASL interpreter. She was hypnotized by the movement of the signing, and you could tell she was fascinated – until somebody walked by with a bunch of colored balloons. Then the ASL interpreter didn’t exist. Leah tracked those balloons all the way up the aisle and out the back door.

This happened twice. At least we know the kid has great visual tracking.

Sweetie Pie.

Leah’s GI ordered an esophagram because Leah had been experiencing so much vomiting in recent weeks – it was getting pretty ridiculous. And messy. So he ordered an esophagram. This sweet baby fell asleep on the x-ray table. Precious doll.

The next day we started hearing the gurgling that signaled to us that her diaphragmatic hernia might be back. If only it had started on this day, we could have simply watched the contrast as it moved further down into her digestive tract. But because they were only looking at the esophagus, they stopped when the contrast left her stomach, and it would be another few weeks before we had confirmation of what we were dealing with.

I think I’ve already filled you in on the circumstances surrounding the return of her hernia. I was convinced from day one that it was back due to the gurgling, and shared my concerns with Mandy when she got home. It didn’t take much convincing – it was obvious that something was out of place; you could hear rumbling and gurgling in the kid’s chest. That shouldn’t be there. It took another week or so before we were able to get this confirmed by her doctors. The esophagram was on a Monday. The gurgling started on Tuesday. Leah’s checkup with her primary was on Thursday, at which point they did a chest x-ray. That’s when they found the bit of pneumonia brewing, but did not see the hernia. We saw her GI the following Tuesday, and they were able to get her in for an upper GI study that Thursday. The radiologist saw the hernia before he even started with the contrast (which he did ultimately do so he could get better pictures). He looked at the very first image and said, “There it is.” A week and a day later Leah was in the OR having her second hernia repair. And I think I’m repeating prior blogs at this point, so I’ll defer to those longer posts and carry on with the photoblasting.

Leah got this sweet ladybug toy from the Awesome Kids Foundation. Thank you! She loves it!

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Another awesome and sweet gift from The Butterfly Fund. Such a nice surprise to receive this Pillow Pet from Leah’s wish list. I swear, Leah knew that it was for her as soon as I took it out of the box. She actually smiled at it from across the room. I’ve never seen her respond so immediately and without prompting.

I couldn’t resist making a little collage.

Another kitty moment. A few days later, our other cat, Lobo, somehow managed to sneak into Leah’s room. He was on the rocking chair in there and Mandy couldn’t get him to move – so she put Leah down near him and let Leah grab at his fur and ears – basically sicced the baby on the cat. It actually took a significant chunk of time before Lobo got annoyed enough to leave the room. I’m surprised and impressed at his endurance. It’s not that Leah actually hurts the kitties – but she does like to grab hair, and she does like to grab at the root. For the kitties this translates to squeezing handfuls of fur over and over again.

Leah loves her new chair, a birthday present from Gran! Can’t remember if we’ve posted a pic before. Her physical therapist recommended it when I asked about a chair that she could use so that she could spent more time sitting up instead of reclining in her bouncy chair, which is, you know, kinda for babies. 😉 In this chair Leah can sit upright and play with toys on the tray in front of her.

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This is Leah’s new favorite chew toy. “What, Mama? Don’t bite my tubie? Don’t do THIS?”

We typically don’t let Leah watch television, but our favorite band in the whole wide world, Raining Jane, was playing with Jason Mraz on American Idol, so we had to let Leah watch with us when we watched the recording.

Raining Jane received the Foot-Nom of Approval. Congrats, ladies!

Yeah. It’s a problem. But it’s better than her pulling out the g-tube itself, which we work soooooo hard to avoid.

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Mama-Baby Sillie Selfie Time!

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Goofy Baby, Outfit #2 (seriously, this kid was projectile-vomiting multiple times a day for days on end.)

Goofy Baby, Outfit #3! Mommy was out of town at a work conference so Aunti Staci stayed over to help, and help is exactly what we needed, because Leah required a minimum of three costume changes on this day. Poor spewing kiddo.

Back on the table for the upper GI. Yucky ducky radioactive goo in our belly!

Guard-kitty stationed at his vibrating chair – and yeah, okay, also guarding the baby in the chair.

We got to the point where we had to just keep a bib on her to avoid going through her whole wardrobe with all of the spewing episodes. “But are you for real with this flower headband???”

Hey, sitting AND holding the necklace with both hands? That takes coordination!

Aaaaand that’s the month of May!


I’ll do a separate post for LeahBug’s May 31 baby naming / birthday party – stay tuned!