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 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:

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Baby Party II

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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!

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Deep conversation.

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How cute is this bow?

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“Fan me with palm fronds.”

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“Giddyup Mama!”

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“DOGGIE!!!”

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“Teehee. It’s a doggie.”

Here we are again!

So apparently I haven’t posted since the last time Leah was in the hospital? Yikes! I have a picture post in progress but I guess I’ve been working on it longer than I thought.

So. Leah had a dilation this morning. Or rather, Leah had an endoscopy this morning. They didn’t have to dilate!!! Her esophagus is a uniform width at this point, which is So Awesome and Exciting.

Now for the less-exciting part. Leah’s vomiting and retching have both gotten worse since the last dilation, and they were already pretty bad going in, which is probably why she wouldn’t hold anything down in the hours immediately following the procedure last time. Her doctor proposed putting in a GJ tube at her next procedure and we have been agonizing over this decision for a good week now. But on Monday Leah didn’t keep down a SINGLE FEED, and at that point we concluded that something had to be done ASAP. We took her to urgent care on Monday evening just to check on her hydration, and then met with GI and surgery on Tuesday. We agreed to go ahead with the GJ as a temporary fix to allow Leah to get her calories and fluids. The plan was that she would come in Thursday AM as usual, but on Wednesday she was still retching and vomiting and looked exhausted. Her little fontanelle was sunken and she was tired all through therapy. We decided to call her GI and see if he felt it might be worthwhile to admit her overnight to hydrate her before her procedure. That is exactly what happened, and so here we are – Leah’s almost-dilation went great, and the GJ is in. The not-so-fun part is that Leah has still been retching all afternoon, and after her feeds started she began to leak greenish fluid from the stoma, and shortly thereafter she had two episodes of vomiting greenish yellowish stuff. (You’re welcome for TMI.) So they called off her feeds for a few hours and did an x-ray to check placement of the tube. It’s in the right place, so she is just starting feeds again, this time at a slower rate. They will adjust her feeds gradually overnight, and we will see how things look in the morning.

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Oh – and how’s this for perfect timing: the Butterfly Fund posted a picture of Leah in her little piggietails and it totally went viral! The photo is nearing 475 THOUSAND likes. Holy moly!!!!!! So many people sharing LeahBug’s sweet smile! So cool and very encouraging when we are stuck in the hospital.

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We are all So Exhausted.

Home

We got home from the hospital on Friday, just in time to celebrate Leah’s independence by watching fireworks from the beach. Leah has been a handful since we got home – lots of gagging and vomiting, although we are getting a few little burps here and there. Let’s hope the burps are a good sign. We are very fussy this morning. Leah was up in the middle of the night, and then again at 5AM. This poor kid. We just want her to feel better!

Drugged Bug

Rough day in BabyLand! I mean, not awful, all things considered – just exhausting for all three of us. Leah had a great dilation this morning. Her stricture started at 15mm and they dilated to 18mm. This is the first time they have ever been able to begin where they left off at the previous procedure. Awesome news.

The not-so awesome news is that Leah wasn’t tolerating any of her feeds – she threw up every time we tried to feed her. She has been gagging all day, even turning bright red at one point. (She also looked like a little tomato when she came out of surgery – bright red in the face!)

Ultimately they don’t see signs of a perforation on her x-rays, but figure that she could probably use a little more rest before she eats again. We can’t take her home unable to eat, so they’re keeping her overnight for observation.

And oh – did I mention that her IV came out TWICE? The first time she kicked it – I looked down to see a little pool of blood around her hand and called the nurse over. The second time I’m not sure what happened.

I felt so bad about that first outage, though – for Leah, but also for the little girl (maybe 8? 9?) who had come by from a few stalls down to ask if the baby had gone into the OR all by herself. Her mom was clearly trying to comfort her by showing her that even the baby was just fine going in by herself. That was definitely not the best moment for her to walk into – screaming baby, blood all over the place… I hope she didn’t see anything. I brought Leah down to the little girl’s stall a few minutes later to show her that Leah was smiling and okay, and to tell her she would be just fine in the OR. These poor kids, having to deal with so much when they’re so small.

Speaking of which, we ran into one of Leah’s NICU friends in Peds today! We are their neighbors. Small world. We knew they were in the hospital overnight but didn’t know we would get placed right next to them on the floor. It was nice to see them – the little girl has grown so much!! She was the only other baby with T21 that we knew about when Leah was in NICU.

Anyway… We are in peds now and Leah is deliriously hungry. She’s so mad. SO MAD. She wouldn’t calm down and ultimately I had to ask them to give her some Ativan, since fighting and crying only burns more calories.

Sleep time. I’m so exhausted.

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.

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

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Auntie Kimmie held Bug during the ceremony.

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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.

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This dress still kills me.

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“I’m the star.”

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Kiddush.

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

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

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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.”

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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.

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A blessing for BabyBug

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

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ZOMG CAKE FOR ME?

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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

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Buggy and Gran

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Aunti Staci and Uncle Rowf

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Aunti Staci and Buggy

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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.

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Okay – end flashback and back to the Mamarazzi pictures. :-)

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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:

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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.

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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.

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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.

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Naptime for Kitties and Babies

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Swinging time

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At RMH the night before Leah’s hernia repair

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Nobody likes being up this early!

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“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!

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Silly Mama and Silly Baby

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

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

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Sleepy baby

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Wearing our ladybug gown from Gracie’s Gowns!

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Ladybug lovey

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Home sweet home!

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THIS FACE. This little stinkin’ cute face.

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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

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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.

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

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Sitting at the table like a big girl!

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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.

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Practicing our Dainty Ballerina moves.

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Practicing our Zombie Ballerina moves.

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

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Modeling our awesome new blanket.

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

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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.

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Another moment with Jeepers.

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Just because. Because this face.


This face again.

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

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PonyGram

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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.

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Sweetie Pie.

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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.

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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.

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I couldn’t resist making a little collage.

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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.

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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?”

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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.

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

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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.)

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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.

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

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

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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???”

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

Aaaaand that’s the month of May!

ALMOST!

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

One Year of Ms. LeahBug

At last, the long-awaited birthday post!

So… due to a quirk in Jewish law, although Leah is biologically my daughter, because Mandy is her gestational mother she is not considered halachically Jewish (i.e. recognized as Jewish by Jewish law). She had to undergo an official conversion, which includes a ritual immersion. She was supposed to go to the mikveh (the place where the conversion and immersion take place) in the first week of April, but she wound up having to undergo a hernia repair instead, and you don’t immerse with open scars, so we had to wait a little bit. Then she was supposed to go in the first week of May, but we all know how that turned out – she was recalled by the hospital and got stuck there for four days.

Thankfully, the rabbi and the mikveh staff were sooooo patient with us, and we were able to work it out so that Leah’s conversion would take place on her first birthday. As an interesting side note, the mikveh attendant present at Leah’s conversion was the same attendant who was there when I went to the mikveh before our wedding seven years ago. She is also my friend’s mom! I didn’t know she worked there until I went up there before the wedding. It is such a small world, and so cool that she got to be there for two such significant moments in our lives. Also present at the ceremony were the rabbi (obviously), who is an old college friend, and two witnesses, who also turned out to be people we knew (plus a tiny tot belonging to one of the witnesses). :-D It made the occasion even more special to have so many familiar faces surrounding us.

Another side note – mikveh is the Yiddish spelling – it would be spelled “mikvah” using Hebrew pronunciation and transliteration. FYI.

SO! On Leah’s birthday, we took her up to the Getty Museum, because isn’t that what every baby wants to do for her first birthday? We had a nice walk around, and I must say that Leah did seem to appreciate the Jackson Pollock work. She stared at it for a good minute. She didn’t care for the Queen Victoria collection, though. I guess she’s an art snob and only likes the modern genres. Alternately, she’s a baby and likes Pollock’s bright colors and squiggles. I’ll let you decide.

After the Getty, we went up to the mikveh. My dad met us there and came in with us to be there for the conversion. Then, after the mikveh we went out to eat with our immediate family and celebrated the little bubbeleh all together. My sister and cousin were planning a baby naming ceremony later on in the month which would be doubling as a birthday party for our larger circle of family and friends, so we kept it small for Leah’s actual birthday.

Going to the mikveh was a wonderful experience, but it had its tenuous moments. The most unnerving thing about converting a baby in the mikveh is that you have to let go of the baby completely while she’s underwater. It’s just for a moment, but she has to be fully immersed without anything separating her from the water, including Mama’s and Mommy’s strong and safe hands.

In discussing the mikveh with the rabbi who conducted Leah’s baby-naming ceremony (a different rabbi than the one who did the conversion – more details on that in a later post), I mentioned that this experience of letting go of Leah was similar to taking her home from the hospital for the first time. In the mikveh, you have to let go for just a moment and trust that everything will go the way it needs to go. Leah will hold her breath under water and will make it through that one moment when nobody is holding on. In leaving the hospital, we had to let go of all of the machines that held Leah in a position of safety and reassurance, and trust that in the absence of that support, the three of us would know what to do going forward. And I guess that is sort of a metaphor for parenting in general – life as a parent will be full of moments when we just have to let go. I’m sure we will have to remind ourselves of that point as the years go by.

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Leah seemed pretty impressed by the Jackson Pollock work – although in that last picture she looks like she’s thinking, “Hey, I could totally do that!”

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Leah was not too impressed with the fancy schmancy portraits of old rich people.

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The Getty was exhausting.

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Dunkin’ Babies

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Leah didn’t love being dunked, but she didn’t seem to mind being in the water!

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After the mikveh ceremony

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Dinner was also exhausting.

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Let’s face it – Leah basically slept through most of her birthday… but it was still a great day.

Another update!

Leah came home Saturday evening. PICU said they could transfer her to Peds for one more night, but surgery said she was good to go home if we wanted. So they gave us the choice. We felt home was a safer option than Peds, although I would have preferred to stay at Ronald McDonald House for one more night in case we had any issues. Leah was great on Sunday morning, but had a really rough afternoon – to the point where I was kind of wishing PICU had offered to keep her there for one more night instead of bouncing her over to the floor. The poor kid was so uncomfortable, and worked herself up into a fever of 100.9 (I did get one reading of 101.9 in one ear but it couldn’t be replicated and I think it was a mistake – maybe she was lying down on that side or something). Thankfully by the evening she felt a little bit better. But by last night, she was crying in her sleep in random spurts throughout the night. Poor little dear.

Both Leah and Mama had appointments today – Mama got physical therapy and a shot for thumb/wrist pain, and Leah got a spoonful of sweet potato. Yay for feeding OT! Mama Lisa almost passed out after her shot. It serves me right for not eating beforehand – I was fine after my other two shots (back and other wrist), but as you might remember from last summer, I have a particular sensitivity to both not eating enough (hence the ER) and being in hot weather. It was also a little bit of insta-karma. The doctor had asked if I felt light-headed and I said, “Do people actually faint from this??” He joked that it was mostly the big macho men who fainted from the pain, and I laughed with him and said that women are used to dealing with more. Not 30 seconds later I started to black out. They had to lay me down and give me juice so I wouldn’t faint completely. Be nice, Mama! Be nice!

Leah had a great evening, and was super-giggly and silly. I posted a 2-second video on her Facebook, but I’ll post a longer one once I get a chance to edit it. We are going to give developmental occupational therapy a shot tomorrow and see how it goes. Pictures soon. Really.

Update

Leah is out of surgery and is settled into her room. She had a dilation to 14mm as well as a steroid injection. The GI doc said her esophageal stricture was somewhere between 5 and 8mm diameter before the dilation.

The surgeons then repaired her Morgagni hernia. Again. Her surgeon said it looked like nobody had ever been in there – the hole was completely open again, and according to the surgical resident, this time it was her small bowel and a portion of liver poking up through the hole. Doc used a mesh patch to close the hole so that there would be no tension on the sutures. Hopefully it sticks this time around!

We also had an unexpected surprise when Leah came out of surgery with a Mic-Key button instead of her usual AMT Mini One. It turned out that they had accidentally gotten betadine on the old button when they took it out to do the procedure, and the Mic-Key was all they had handy to replace it. That situation has been remedied and Leah has her Mini again.

Leah napped for a bit after a good long fuss (she is in a lot of discomfort) but now she is awake again and crying with a sad little hoarse voice. Poor bubbie! Time for more morphine!