And so it begins!

As you know, LeahBug’s speech pathologist has been giving her tiny amounts of water, breast milk and baby food purées in the clinical setting so she can evaluate and give Leah some practice at eating. She didn’t want to really move forward at full speed until Leah had a swallow study to ensure that she is not aspirating as she swallows – that is, to make sure stuff is going down the right “pipe,” so to speak.

Leah had her swallow study on Monday. For the record, she does not enjoy the flavor of “radioactive.” Aunti Staci came along to watch the swallow study since she had never seen an infant study, though she has performed many on adults.

During the study, Leah tried breast milk first and then a barium liquid that has the consistency of water, and then sweet potato purée.

So. The good news is that Leah did not aspirate when swallowing. She did a great job of directing the food into her esophagus. She did not successfully suck liquid from the bottle nipple, so they had to widen the hole so she would get some milk just by nomming.

The bad news is that after Leah had a spoonful or two of sweet potato, Aunti Staci pointed out that the food appeared to be pooling in her esophagus. The radiologist confirmed this. Setting aside my alarm that my sister was the first to spot this and not any one of the multiple speech pathologists or the radiologist or any of the several other people watching the study… the fact that the food was pooling indicates that there is some degree of stricture at the surgical site, which I have been asking about for a good month now. They stopped feeding at that point and waited for the food to clear. It didn’t clear while we were in radiology, but we know it eventually went down because 1) it didn’t come up, and 2) there was an epic radioactive poop later in the day. FYI.

So. I called Leah’s surgical nurse practitioner and discussed the outcome of the study, and she said she would consult with Leah’s surgeon and get back to me. I have been concerned about a structure for a while now, and have always said I didn’t want to proceed with full feeding until we knew whether this was happening to her. I just kinda had a feeling. Her surgical team has definitely paid attention to my concern, but the general consensus has been that as long as Leah isn’t showing signs of stricture (mainly, as long as she is able to swallow and keep down her own saliva and isn’t showing any signs during feeding that there might be an issue), we could afford to wait a couple of months before bringing her in, mostly for the sake of keeping her out of the hospital for the duration of the flu season. The idea was that they would bring her in during the springtime and do an actual endoscopy so they could really see how the surgical site was looking, instead of doing another contrast study. If she needed a dilation at that point, they would do it right then.

Well, usually I enjoy being right, but this is not such an occasion. After reviewing the images from the swallow study, Leah’s surgeon and GI agreed that she should have an endoscopy and (if necessary) a dilation sooner so that we don’t delay feeding by several months. So Leah will return to the hospital next Thursday for this procedure. Hopefully this will be an outpatient procedure. It is pretty standard fare for a kid with esophageal atresia, but it is still scary whenever they have to knock her out. I know she has been put under multiple times, but it will always make me nervous.

In other news, Leah’s Regional Center services should be starting any time now. It has been frustrating trying to get it started because of the timing – everybody slows down during the holiday season. Leah’s therapies at Kaiser have been minimal; she is on a regular speech schedule, but her last two OT appointments were canceled by the clinic at the last minute, and they are supposed to be referring her out for PT but seem to be dragging their feet. As a result, Leah has *never* had PT, and has only had one OT session since leaving the hospital over 2 months ago. She did have another OT assessment this week, and her abilities ranged between 12 and 20 weeks. All she is getting is whatever playtime we are able to provide at home. Assuming all goes as planned, that changes starting next week.

So that is that. No pictures this time, but watch for photos from our return to Disneyland yesterday! We had one day left on those awesome park hoppers and they are good for 13 days – couldn’t let that last day pass us by!!

An unexpected but awesome experience

Recently we received a phone call from the executive director of the LA Ronald McDonald House, who wanted to know if we would be willing to speak briefly at a board member retreat dinner for Ronald McDonald House Charities of Southern California. They wanted to invite a family to share their experience with the board, and since we are relatively local it was possible for us to attend on short notice. I am so glad that we did. It was a really special experience. We shared Leah’s story with a room full of [100] people without whom we could not have gotten through the past year, because they make the Ronald McDonald Houses happen. They met one of the families they work so tirelessly to support. And we had the privilege of hearing the story of how the organization began, as shared by Fred Hill, whose daughter Kim’s illness was the catalyst for the creation of the first Ronald McDonald House in Philadelphia nearly 40 years ago. It’s amazing how something so wonderful could grow out of something so devastating. They showed a video of Kim speaking when she was a little bit older, and she said she didn’t like being sick, but in a way she was glad it had happened because out of her illness this great thing had been created. Now that’s perspective! Unfortunately she passed away several years ago; the radiation she had as a child caused brain tumors later in life. So sad – but such a powerful story. It was a real honor to meet Fred and his wife Fran after the event, and they were gracious enough to take a photo with us.

Also, the food was really, really good.

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BabyBug visits the Mousiest Place on Earth!

Well, as you might have figured out by now, we spent our very first family vacation at Disneyland. We were able to take this trip thanks to our awesometastic cousins, one set who gifted us with park hoppers, and the other who arranged hotel reservations for us. We are so grateful that we got to take some time to step away and just be a little family on a little vacation. I love that in LA you don’t have to stray far from home to have a great weekend getaway.

And we did! We had a blast. On Friday morning we had breakfast with my grandparents, who live closer to Disneyland than to our home. I am so psyched that we got to see them – they had not been able to visit with Leah since she was discharged from the hospital and have been aching to see her. They were delighted to get some quality time with the little Bug. My grandma didn’t want to give her back when lunch was over!

On Friday night, we headed to the park to meet cousins for dinner, but first we stopped at City Hall to deal with some administrivia involving disability accommodations for Leah and for myself. Rant at the end of this post – feel free to skim or skip.

Anyway. Thankfully the issue was resolved. In general, we found that the cast members were really hit and miss about being sensitive to disability issues. We got trapped in the line at the train station because the wheelchair entrance wasn’t clearly marked and there was an access door at the entrance to the platform – but by the time we realized there was a separate entrance for the accessible car, we were trapped in line by 100 other people and there was no way to get out of the line without mowing them down with Leah’s stroller. The cast members were not apologetic at all and said, “Next time, use the wheelchair entrance.” Hello – we tried! On the other hand, I was impressed at Minnie’s house; I asked Minnie to not *touch* the baby during our family picture because of her special needs and immune issues. Before taking pictures, the photographer double-checked to make sure that using the flash was okay. Most people wouldn’t think to ask about that. It was fine to use the flash, but I’m glad she was conscientious enough to ask.

Here are a few of my favorite moments of the trip:

1) Leah’s face during her first time on “Small World.” She spent half the time looking around at all the bright colors, and the other half staring up at Mandy in adoration: “DOLLIES AND BRIGHT LIGHTS! YOU ARE THE BEST MOMMY EVER!” She was so sad when it was over.

2) Leah’s second time on Small World: She fell asleep in my arms during the wait, slept soundly through the ride, and then cracked open her eyes with a bleary greeting to the world just as we were pulling back into the daylight.

3) Flying baby! Leah LOVES to be held up in the air like a little flying baby! She grins like a little goofball. She flew all over Disneyland!

4) Leah got charmed by a magic wand. She started crying in one of the stores and suddenly a cast member appeared out of nowhere with a magical light-up wand, which silenced her instantly. Our first question: “Where can we get one of those?” Ha. I wonder if that cast member’s job is to make sure there are no screaming babies in the stores. Mission accomplished!

We also took Leah on the Haunted Mansion, the Mark Twain riverboat, Peter Pan, Snow White and Alice in Wonderland (plus the train, as I mentioned). Leah’s favorite part of the dark rides? The magical glowy polka dots that appeared on her mommies’ shirts when the black lights came on (we were wearing red shirts with white spots). Ooooooh!

For us, it was interesting to experience Disneyland not only as mommies, but as mommies of a child with special needs. I think there develops some sort of new radar – like “gaydar” but for special kids – and somehow you just sort of notice people more frequently. Maybe it was the little “Please wash your hands before touching mine” signs on Leah’s stroller (from the RSV shot clinic) – we probably had almost as many people making exclamations over those as we did over the baby! One mom asked us if our insurance had covered the RSV shots – her little girl has cystic fibrosis. Mandy met two moms in the baby care center whose little ones also have g-tubes. It turned out one of them was born with TEF/EA! Not Type A, but still pretty uncommon! So random and cool. We also spotted seven different people with Down syndrome over the course of the weekend. Curiously, only one of them was a child. Not quite sure where to go with that detail but I suppose there could be many reasons.

So anyway, yeah – we had a blast at Disneyland. It turned out to be a pretty popular weekend – the Tinkerbell 5K, 10K and half-marathon took place each morning before the park opened, and apparently Sunday was an unofficial “Dr. Who” day, so there were geeks EVERYWHERE. I spotted a guy wearing the “And then Buffy staked Edward. The End.” shirt. LOVE.

It was also a pretty dirty weekend. There were kids sneezing all over the place, and nobody seemed to wash their hands. While we were at lunch I saw one little girl at the next table sneeze, and then her dad helped her blow her nose into a napkin and then threw the germ-ridden napkin onto the table. OMG. We carried disinfectant wipes everywhere.

On Sunday night, our cousins took us out to dinner at the Jazz Kitchen for my birthday. SO YUMMY. Probably one of the best dinners I have had in a very, very long time. Leah slept through the whole thing, even after the band started playing. The perks of having a NICU baby, I guess. She really does sleep through almost anything.

Other things going on this week:
-Leah ate about 2 teaspoons of sweet potato at her speech therapy visit!
-We had Leah’s assessment interview with the county office of education, which provides some services to kids with special needs.
-Mama got the stomach flu. Yeah. We worked so hard to keep LeahBug away from the germs, so they got me instead. Better me than her, for sure – but it was definitely no fun. I spent all of Monday in bed with fever, aches and chills.
-Last week, we brought Leah to meet our IVF doctor! She slept through the whole thing, but it was still very sweet. In her sleep I just know she was thinking, “Hey, thanks for making me!”

Exciting things happening next week:
-SWALLOW STUDY on Monday!!! They will do a video swallow study to examine Leah’s swallowing function and see if she is ready to really start taking in some food orally.
-Regional Center meeting on Wednesday! We will meet with Leah’s service coordinator and hopefully get this show on the road! Leah’s Kaiser OT appointment was just cancelled for the second time in a row, so she basically hasn’t had any OT services in nearly two months. It is absolutely ridiculous and unacceptable. Once we have this meeting, the Regional Center can start setting up therapists for Leah and her services can begin.
-Disneyland. Yeah… we have one day left on our park hoppers, so we are going to go back for a little day trip when it’s less crowded and do some of the things we didn’t get to do the last time because it was a holiday weekend and very crowded.

So that’s it! Pictures, followed by rant. Enjoy. Ha.

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“Oh look, a foot!”

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Silly girl has her leg!

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OMG. NOBODY TELL BABY. When we were in PICU, one of the nurses told baby that some imaginary nurse was making her do all the awful things she had to do, like replacing the repogle or helping with blood draws. I named the imaginary nurse “Fabio” because all the other names I suggested already belonged to real nurses.

Here’s our vacation!

January 16

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“Rumor has it we’re going to Disneyland. Allow me to share my feelings.”

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Let’s look at that up close

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And a little closer…

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BabyPie checking out our bed

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“I’m comfy, Mama. You take the crib tonight!”

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I like the other picture better, but I’m sharing this one too, largely because she looks like such a little StinkerBell here. “Teehee.”

January 17

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Dressed for the occasion!

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It’s a small baby after all!

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Only in SoCal would this be the front-and-center display in the middle of January.

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Grandpa Bob

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BabyBug and Grandma Marilyn having a Very Serious Conversation.

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Do I have the cutest grandparents, or what?

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That was an exhausting lunch! It’s hard being so loved.

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Cartwheel? High kick?

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Trying to roll onto our side

January 18! Mama’s birthday!

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“If I can just… get… this… into… my… mouth…!”

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We hadn’t even started our day and she was already knocked out!

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“You’re going to make me wear this in public?”

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“OH GOD. NOT IN PUBLIC.”

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If BabyBug has to wear Tender Grips, we shall make them cute!

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“Mamas. There’s cute, and then there’s cuuuuuuuuuuuute. I think this might be too much cute.”

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On the Mark Twain Riverboat

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SMOOCH

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Cheeeeese!

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Waiting for Small World

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“ARE YOU SERIOUS?”

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“IS THIS FOR REAL?”

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“BEST MOMMY EVER!”

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An enthusiastic disco thumbs up.

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Later that day… WeepyBug was tired!

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PoutyPie. Bordering on Ponyface.

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Glowy dots! Magical glowy dots!

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Dinner at Flo’s!

January 19

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“Mama, can I please have your face?”

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“Mama, for your belated birthday present I shall look like you. You’re welcome!”

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“Fingers are nummylicious.”

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Just ’cause she’s cute.

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Shnuggling

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Tummy time!

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Minnie!

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Small World, take II

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I think Leah’s favorite part of Disneyland might just be her feet.

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She slept through the whole ride, and then woke up just as we re-entered daylight: “Mama, I just had the weirdest dream!

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LeahBug! There’s no crying allowed at Disneyland! It’s like, in the rules or something! Looks like someone didn’t get the memo.

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Mommy and Bug at the castle

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The whole family at the castle

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“Look. At. This. Hat. MAMAS.”

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SILLY baby!

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Silly baby got her foot!

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Goofy!

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“I swear I can fit this in my mouth!

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“Mommy, please don’t throw me in the well! I’ll wear the hat, I promise!”

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Baby loves to fly.

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Loves. It.

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“Mommy, can I please have your face?”

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“Tada! You like my shirt?”

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Hi, Auntie Beth!

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Auntie Beth and Uncle Brian

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We love our Cool Auntie Erin

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Disney: 1. Baby: 0.

January 20

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Sweetheart

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Serious Bug

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Just kidding!

Rant ahead:

Continue reading

BabyMouse

Through the generosity of our dear cousins on both sides of the family, we’ve spent Mama’s birthday weekend (yup, I’m all older and stuff!) on our very first family vacation. We didn’t stray far from home, but in LA you don’t have to! I’ll post a nice long photoblast later but here’s something to tide you over:

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Big Bug

This morning, a certain someone broke 12 lbs for the first time EVER. LeahBug tipped the scales at 12 lbs 5 oz at her doc visit today. Her length is 24 inches. She started out at 3 lbs 5 oz and 16.4 inches. BabyBug is growing, slowly but surely!

In other news… Leah has most definitely discovered her feet. She spent most of today trying to catch them. Actually, she was really about catching her entire leg. She might also have enrolled secretly in ballerina training. She keeps grabbing her leg and pulling it up to her head.

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Other firsts for today: Leah met the doctor and nursies who helped to bring her into existence! We took her for a visit to the fertility clinic we went to when we were trying to get pregnant, and she got to say, “Hey, thanks for making me!” to our very awesome doctor! Then later, Leah had her first dinner date with her “cousin” Ry Ry (my BFF’s son), who seemed to be trying very hard to figure out what she was all about, and ultimately decided that if Leah was gonna get a mommy-lap, he should demand one too.

Leah hasn’t been up to too much else, aside from eating her monkey dollie, nomming on Glo Worm’s face, and finding creative ways to dislodge her nasal cannula at night (my personal favorite is the Vampire maneuver, in which she pulls the cannula down into her mouth with the tubes going up under her top lip so that she looks like a vampire). We have been doing a fair bit of dancing around the living room. I’m pretty sure Leah knows all of the words to the “Mr. Ed” theme song now, and I SWEAR when I played “The Munsters” for her, she recognized it from all the times I’ve sung it to her. That’s my girl!

A long-overdue update.

Well! I’ve had at least 5 people tell me pointedly that I haven’t updated the blog in a while, so I guess it’s time.

What’s new in the BabyBug household?

Well, Leah is officially 8 months old as of yesterday, January 8. (Here’s the video we posted on Facebook for her birthmonthday.) She is spending more and more time looking at her feet when she’s in her chair, and we’re sure she’s going to try to catch them any day now. We are working with her every day on tummy time and sitting up / neck support, and she is getting better and better at it, although she is still a bit bobble-headed and I think she’s a long way off from being able to sit up on her own. Her big accomplishment in recent weeks is that she can support her neck when we pull her from being on her back to sitting up. She couldn’t do that in the hospital! Good girl!

Leah’s Regional Center intake worker let us know that Leah will be getting three appointments per week for the time being – one OT feeding, one PT, and one infant stim. I’m a bit concerned because they sent us a copy of the OT assessment after that decision was made, and it’s not made entirely clear in the assessment that Leah doesn’t know how to eat at all – in fact, the reason given for the g-tube placement is difficulty in coordinating sucking, swallowing and breathing. Yes, that’s her problem now, because of the Down Syndrome and lack of experience in eating – but the g-tube was placed because she was born without a functional digestive tract!

In my previous job I was just starting to learn about special ed, having previously focused on another topic area. I have the feeling that I’m going to learn a lot more by being on the parental side of things. Lesson # 1 learned: Get a copy of the assessment before the eligibility meeting takes place.

Other things going on since the last blog… BabyPie has finally graduated to a high-chair, so she can sit AT the dinner table with us instead of sitting next to the table in a bouncy chair and looking up at us going, “HELLO! LOOK AWAY FROM THE PLATE!” The pictures make her look really big, but she is so very tiny in this thing that she can’t even reach the toys we put on it. She is itty bitty.

We had lots of visitors this past week (all pre-screened for coughing and sneezing and sniffles, of course!). Our friends Jess and Toni and their 19-year-old son Wesley (also chromosomally enhanced) came over for dinner last week. My family came over this past weekend so that we could celebrate my mom’s birthday. My sister brought my 94-year-old grandpa, who loves this little bug so much. She makes him smile. Later in the week, cousin Jenna went in for surgery, and Dr. BabyBug made a couple of virtual house calls. Cousin Jenna finally got out of the hospital today and of course she came over for some Bug Therapy. Our friends also came over this morning, and one of them played with Leah and gave us some ideas for exercises we can do with her. Always appreciated! The other friend served as nap-time comfort. On Saturday, Aunti Staci is coming over!

Leah has started her speech therapy. She’s still having a ton of trouble with the whole notion of pulling water/milk into her mouth and then swallowing it. She’s like, “OH MY GOSH, I WANT TO EAT, I JUST WANT TO EAT, NOM NOM NOM – wait, what is this STUFF in my mouth????” She wants to nurse, she wants to suck, she knows it’s something she’s supposed to be doing – but then she gets totally confused when it happens.

In case you’re wondering, the cloth diapering is still going well. It’s not quite as terrifying as I initially thought it might be, although it can be pretty messy when there are messes. But that is true of disposables as well. And I did the math – it’s definitely a money saver, despite the initial investment. This is especially true because kids with Down Syndrome often have potty training delays, which means Leah may be in diapers longer than a typical child would – and that delay shouldn’t result in extra diapering expenses as it would if we were using disposables. Plus… the landfills are filling up quickly enough already! We’ve had so little control over things and it’s nice to be able to make this decision and stick with it.

In other news, we’ve decided that Leah isn’t going to ask for a pony. She’s going to say, “Mommies, I need a pony as a reasonable accommodation under the Americans with Disabilities Act” – because she’s my daughter. And then she’s going to make the Pony Face.

So. I offer you this video to make up for the delay in updating.

And now, pictures!

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BabyBug visiting with her friend Jess!

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“Um, I’m not so sure about this high-chair thing, Mamas…”

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“But this means I’m a big girl now, right?”

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I love this face. It’s her “looking up” face. She looks like she’s thinking hard – perhaps contemplating the meaning of things above her head.

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One determined baby!

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“Um, ‘scuse me, Mr. Grandpa Bill? You still have that toy on your chin. Share?”

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Spinning BabyBug???

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Sitting on our new exercise ball.

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“LOOK AT ME! I’M SO PROUD OF ME!”

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“This is HARD WORK.”

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Three generations (one’s skipped because my mom’s not in the picture!). My grandpa, me, and oh yes, my little Buggy showing off her belly.

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There are 94 years separating these two. But they both look like they could cause some trouble, don’t they?

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He loves this tiny tot!

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Dr. BabyBug makes a house call.

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We celebrated our 8-month birthday with smoochies from Mommy!

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Then we did big-girl things like sitting up…

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…and sticking our tongue out.

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It was a very exhausting day. But we’re a big girl now, so we’re all proper with our pinky sticking out.

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Good morning, Mr. Cheshire Cat!

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“Mommy, it’s looking at me!”

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“Oh well. I think I’ll – zzzzzzzzzzzzzz.”

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Waking up for the second time today. Good morning again! Monkeys are delicious.

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“Like, omigawsh. I’m in a high chair.”

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Waiting for our friends to arrive and trying to decide which toy to yell at first.

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“First I shall yell at the wheel. AYE!”

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“Mama! I yelled at it! Why didn’t it spin?”

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“Make it spin, Mama! Make it spin!”

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“Make it spin because I’m CUTE.”

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“Mama. Make it spin. And pony.”

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See how freaking tiny she is in this high chair. We had to add the little infant head pillow from her bouncy chair just to make sure she doesn’t flop around.

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“Spinning! Good Mama. See, was that so hard?”

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Buggy chillin on her pal.

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Cousin Jenna gets Bug Therapy.

Periwinkle time!

Apparently January is Esophageal Atresia Awareness Month, and periwinkle is the color for EA awareness, so welcome to our new background color for the month of January!

In other news, Leah and I spent a good 15 minutes last night marching around the living room singing classic TV theme songs. BabyBug would start to giggle a little bit every time I changed to a new song – I’m impressed! Note for future reference: Leah LOVES the theme songs to “The Munsters” and “Mr. Ed” but is not as impressed with “The Mary Tyler Moore Show.” Probably because MTM doesn’t come with exciting sound effects and voice changes.

LeahBug in the new year!

I guess it’s high time for another slew of photographs. But first, a tiny update on the tiny Bug. Leah had her first outpatient visit with her cardiologist last Friday, and really, not much has changed. We’re still in a long-term “wait and see” holding pattern. The ASD is pretty small at this point, and even if it needed to be corrected, apparently there are less-invasive ways of repairing it. The VSD, however, needs to shrink for Leah to not need surgery; the doc said the size of the hole is right on the borderline of whether it would or would not need surgery, but the bottom line is it needs to shrink. If she does need heart surgery we are likely still looking several years down the line. So let’s wait and let’s see and let’s hope this thing shrinks!!!

In other news, Leah is coughing an awful lot lately and is pretty sneezy too. We are keeping fingers crossed that it’s just allergies and not a cold, but it’s been pretty bad today. Not really quite sure what to do if it keeps up – but we’ll call her doctor in the morning and find out.

We hope everybody had an awesome and safe New Year’s Eve celebration, and we wish you a happy and healthy 2014! Here’s looking forward to a year of growth and progress for our bitty Bug, who has come so far already but has such a long journey ahead. Thank you for being Leah’s cheerleaders. <3

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“Silly Mommy, silly Mommy!”

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“I love my Binkeez!”

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Sweet face

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Pony face

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Melt-yer-freakin’-heart face

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If babies could take selfies…

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Hanging out with honorary grandma Cathy

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Somebody isn’t waiting up ’til midnight!

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Out cold like a polar bear!

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“Mama, what’s a New Year?”

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“Auntie Kim and family did what to celebrate this New Year’s Eve thing???”

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“No Times Square for me, thanks! I’m happy with my tasty monkey!”

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“This is my serious face.”

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“Good morning, feets!”

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“Look Mama! Two feets!”

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Smooooooshy face

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Meeting our buddy Ry Ry for the first time!

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“What is it?”

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A visit from cousin Jenna. These two are gonna be trouble! Right here in River City!

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“Peekaboo, Mommy!”

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“Teehee! I’m cute. Shhh, don’t tell anyone.”

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“Mamaaaa…. put the camera away.”

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“Like, omigawwwwd, gag me with a spewn.”

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I love this little shirt from one of Mommy’s colleagues!

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“WHEW! Neck support is hard work!”

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Showing off our dinosaurs.

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Cousin time!

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Out cold on Maddy’s lap!

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Chillin’ with Abby. In the background, Ms. Jenna says, “Are you done yet? Is it my turn yet?”

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Reunited at last!

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Somebody intercepted the baby between kid cousins! BabyThief!

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See? Trouble.

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Precious in purple

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Besties

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Seriously, I could stare at this face for hours.