Another quick update

June 6, 2013

By Lisa

Leah is 4 lbs 8.8 oz today. It’ll be another short entry because I didn’t see my tiny bug until late this afternoon as I was still in bed sleeping off the anesthesia from yesterday. Mandy was there all day yesterday and today but you just try to get her to blog! Hehe. (I’m working on it…) Anyway, as sooooon as I got to the hospital, they had to do a bedside surgery on another baby in the room, so we couldn’t go in there for another couple of hours. I missed my little LeahBug! When I finally did get to see her we had kangaroo time for over an hour, and for the first 15 minutes her eyes were wide awake and she was looking around the room going, “Hmmm. This is a new angle.” But she finally went to sleep as I sang “Soft Kitty” and the Meow Mix jingle to her and told her all about her big brothers Lobo and Jeepers and how they can’t wait to meet her.

It’s funny how Leah looks so much bigger than she did when she was born, and yet she’s still smaller than you realize until you see her in front of you. We got her some more preemie shirts this weekend and they still look huge on her. The preemie diapers are pretty freakin’ huge on her too. She’s just a bitty bitty baby.

Pictures tomorrow, I promise. I forgot my camera today in my rush to get to the hospital after not seeing my baby girl in over 24 hours!!

Mostly pictures today

June 5, 2013

By Lisa

Not much to report today, largely because I didn’t get to go to the hospital at all today. 🙁 I had my procedure this morning and then came back to RM House to recuperate / sleep off the anesthesia. I’m still a little groggy, but otherwise okay.

Mandy spent the day in the NICU with Leah, and reports that she is just over 4 lbs 7 oz today. She is now getting all of her food via “bolus feeding,” which means that she feeds every three hours and when she feeds she gets all of the food at once instead of having it spread out over a period of time (yesterday she was getting her food over half an hour).

Still a little loopy so I’ll get right to the pictures!

Sleepy precious bug

Sweet babydoll

Angry baby!

Magically calm baby! And look how cute our shirt is!

Baby resists sleep

Adorrrrbs

Toesies

New shirt

Cross-eyed baby

“But I don’t wanna go to sleep!”

Brief update

June 4, 2013

By Lisa

We had our family conference today with the surgeons, Leah’s NICU doctor and the social worker. Aunti Staci came too so she could ask fancy medical questions. I think in terms of Leah’s progress over the next few months we didn’t hear anything really new new – this was mostly explaining in more technical and concrete terms what we already sort of knew vaguely – that we’re waiting to see how long the gap is between Leah’s esophagus and her stomach, what the surgical options are depending on what the gap looks like, and what potential post-surgery outcomes we can expect. The first time we met the surgeons they reviewed this information briefly, but once we heard “five months” come out of their mouths everything pretty much sounded like Charlie Brown grown-ups (“Wa wahh, wah wah wah wahhhh”). It was nice to be able to meet with them again after having had some time to process what we’re going to be facing these next few months.

So here’s the substantive update for now: Later this month they will take the g-tube out and put a “Mic-Key” button, which will allow BabyBug to only be hooked up to the feeding tube during the times when she’s actually feeding. The rest of the time the “button” will be closed. For right now this probably doesn’t mean much to her, although her mamas are SUPER excited about getting to put her in all the adorable onesies we have waiting for her at home. But if she still has to feed by tube when she’s a little older, then it’ll make a bigger difference to her as it allows for more freedom of movement; kids can run around wearing these things. When they do the procedure to put in the Mic-Key button, that’s when they will do the contrast study to visualize the gap and also check on some other issues that could potentially arise with her condition. So hopefully by the end of this month we’ll have a better idea of what the next steps look like. Either way, they’re still planning to wait for surgery until she reaches about 9-10 lbs, for a variety of reasons both general and particular.

Other than that, not too much news to report today. BabyBug went through epic numbers of diapers, and things got really messy a couple of times. She thinks it’s adorable to wait until the diaper’s off and in the process of being changed before she really gets going. And we’re getting to see the fussy side of Sweet Calm BabyBug as she’s finally starting to experience hunger. She was on continuous feeds but slowly they have been shifting her to interval feeding. At this point her feeds are about 40mL over the course of half an hour, with 2.5 hours in between each feed. By the end of that 2.5 hour stretch, BabyGirl is HUNGRY and FUSSY and REALLY PISSED OFF. Then about 20 seconds after they start the milk, she calms down. It’s magic!

In other news… this afternoon I went downstairs to the cafeteria today to heat up Mama Mandy’s lunch for her. When I came back up I sat in the waiting room for a few minutes and then looked around and noticed it was awfully crowded today and some people had rearranged the chairs in the middle. And they had installed new vending machines. A few minutes later I looked up and saw somebody being wheeled out of the double-doors next to the waiting room. I thought to myself, “Why are they wheeling a man out of post-partum???” Then I realized it was the cardiac wing. Wrong floor. Whoops. Baby brain!

Can a baby have a bad hair day?

June 3, 2013

By Lisa

BabyGirl is 4 lbs 6 oz today! Go Leah!

“Hurrah! Go me!”

Not too much else to update. We had a nice quiet day in the NICU today, just Mama Lisa, Mama Mandy and a tiny, tiny BabyBug.

Now for some more pics!

Toeses

Babygirl was having a rough hair day. So emo.

BabyBug and her awesome hair post-costume-change.

Sweet peaceful bug. I tried to comb out her hair and this is as good as I could get it. It must have dried sticking straight up after her last bath. This, I can forgive… but I’m going to be very suspicious if we walk in there tomorrow and find her with a faux-hawk. Aunti Staci, are you sneaking in at midnight to do Baby’s hair?

“Oooh! Oooh! Mr. Kotter!”

“Let me just tell you about my day, Mama…”

Thumb wrestling. Somehow I think Mama Mandy still has the upper hand.

Baby Blintz

The Little Mermaid. Something about this swaddle just isn’t right. Mama Lisa needs practice.

“Live long and prosper!” (Did I get it right that time?)

“Same thing we do every night, Pinky! Try to take over the world!”

Wide awake baby!

June 3, 2013

By Lisa

Baby Boss

June 3, 2013

By Lisa

I keep meaning to post this text between me and my sister – it just kinda cracks me up.

Photo Blast, Take II

June 3, 2013

By Lisa

Well, not too many updates for you today. We went home for a couple of hours this morning, just to make sure the house is in one piece. Our roomies have been taking care of the kitties and watering the garden and picking the squash before they turn into blunt weapons. Each time I go home, I bring a bag of huge zucchinis and patty pans back to the RM House and put most of it out for other residents to take. I love seeing the squash grow, but for me the big treat when I go home is the berry harvest. The strawberries are sort of floundering from the lack of attention, but I picked a nice container full of blueberries and blackberries today, and I can see that the raspberry plant is starting to flower. I hope to get a bigger harvest than I did last year (all of about three raspberries). We may also start getting to pick some bell peppers soon; I see lots of green ones growing in but most of mine are red varieties so they still have some time before harvest. Here’s hoping I can eat them by the time they’re ready for picking!

And now back to what you’re really here for: Baby report! Leah is just a smidge over 4 lbs 5 oz as of yesterday (Sunday), meaning she’s gained about an ounce per day since she hit the 4 lb mark. We put her in another newborn shirt today while the preemie clothes were in the wash, and once again it looked like a nightgown (see below). Her feeding remains on three hour cycles, but they are easing her into interval feeding (can’t remember if I mentioned that) and at this point they’re giving her the entire feed over an hour, followed by a two-hour break. I think the goal is to get her down to a half-hour feed to make it more closely resemble a typical infant’s feeding pattern.

A good 40% of Leah’s Sunday visitors were celebrating a birthday (that sounds a lot more impressive than “two out of five”). Leah’s Gran came with Mandy’s brother, Ralph, who turned 48 on Sunday. Happy birthday bro! Grandma Barbie (my mom) and Aunti Staci brought Leah’s Great-Grandpa Mannie to visit for his 94th birthday. Happy birthday Grandpa! In case we haven’t already explained, Leah is named after my grandmother – this grandpa’s wife – who passed away when I was in high school. Leah’s middle name, Valerie, is for Mandy’s aunt, who has been gone almost 4 years now. It is an Ashkenazi Jewish custom to name babies after beloved relatives who are no longer with us.

And on that note… pictures!

Stop the Mamarazzi!

Freedoooom! Freedoooooom!

Mainly added this picture so you can see that we’re finally starting to see the whites of her little eyes!

Peekaboo!

Scruuuuuunchyface

Sometimes you just need to skip the fingers and nomnomnom your arm.

Hula baby

ComfyBug

Family portrait

Almost thumb-sucking, but not quite.

“Let me tell you, Mama – you don’t even know the half of it. There are crying babies in this room!”

I haz a dolly!

High five for Mama Lisa!

Pinky swearz!

She’s just shooooo kyuuuuute. It keeeeelz me.

Lounging in a newborn shirt, a.k.a. a preemie nightgown.

Newborn shirt. This sleeve is folded nearly to the elbow.

Just to give you some perspective on the lamby lamb preemie shirt from the other day…

“I’m cute? Oh stop, please, no, continue.”

Adoooooorbs.

Cute overload. She looks so content.

And just for the heck of it…

Today’s berry harvest

A quick update

June 1, 2013

By Lisa

Not a whole lot of time today so I’ll just post a quick update and then do a longer one tomorrow with pics and hopefully more video. I’m typing on my phone so I apologize if there are any typos. Leah seems to have gained about an ounce per day since she hit 4 lbs. Today she was 4 lbs 4 oz. What a good girl! Her hair also looked particularly red today. I’m just saying.

Mama Lisa spent the better part of the day in the ER again, making three trips in thirty days. Soooo hoping my June 5 procedure brings some relief, even if it is a temporary fix.

We went to Mandy’s choir’s performance tonight – she took the season off because of the pregnancy but since the show was literally next door to the hospital we took the opportunity to go be entertained for a couple of hours. It was a great show, and it was so nice to see everybody. One thing that really struck me was how many people mentioned that they have been following the blog and checking on Leah’s progress. I know I’ve said this before but it makes me so happy and hopeful to know that Leah has so many cheerleaders who care about how she is doing and send out positive thoughts and energy and prayers. So I offer a giant THANK YOU to everybody who checks the blog to see how LeahBug is doing. We appreciate it more than you know.

We’re still standing!

June 1, 2013

By Lisa

Don’t worry, we haven’t fallen off the edge of the earth! We’re still here. Just got a little busy.

Update on the Mamas:

Mama Mandy: SLEEPY but otherwise doing okay, all things considered. She’s still wearing her brace, but the pain from the c-section is decreasing a lot. Mostly she’s dealing with the trials and tribulations of pumping every three hours.

Mama Lisa: Not good these past few days. Just not good at all. Thankfully June 5 is just around the corner.

Update on the BabyBug:

Leah is at 4 lbs 3 oz today. She’s had a little bit of trouble the past couple of days. As you know, she yanked her tube out on Wednesday. Yesterday it was Mandy’s turn to have kangaroo time cut short when she noticed there was blood in Leah’s suction tube. The nurses said sometimes the tube can irritate the lining of the throat, but still they wanted to put her back to monitor her. Today we got a call from the doctor (that’s never good…) letting us know that she hears a bit of a murmur from Leah’s VSD – the little hole in her heart. They are monitoring that as well. I don’t think this is anything particularly new, except that it’s a little bit more on their radar now that it’s causing detectable signs. I guess. The doc is still hoping it will close on its own and not require further intervention, but the possibility is there. They are going to do another ultrasound of her brain soon to check on the choroid plexus cyst.

The good news for today is that the sweet BabyBug got to wear some sweet preemie shirts furnished by her dear Auntie Z. I seriously thought the shirts were going to be too small. These things are TINY. Like, they could lie flat in the palm of your hand and maybe a little bit would poke off the edges, but not enough to droop down over the edge of your hand. I’m talking TINY. Did they fit her? Yes. Were they too small? Uh, no. The preemie shirts are loose on this kid. She’s just that little!

Below are pictures for your enjoyment. Don’t blame me if they’re like, 10 of the same picture. She is uniquely cute in every picture so you must see them all. I’m just saying. (No, you’re not really seeing them all. We passed 15 GB of photos and video at some point this week. For real.)

A pic from Thursday. Our little elf.

Random thought: Frequently children with Down Syndrome have pinky fingers that look a little different, e.g. bent or hooked. In this case, though, I can’t tell whether Leah’s cute little bent pinky is a product of her Down Syndrome or her genetics – my pinkies are bent too! Go figure.

Another mouseover. “All the single babies, all the single babies…”

Baby with hand for perspective.

Snug as a Bug

LoveBug

Our little ham

She looks like a doll!

Little froggie

Sweet sleepy baby

Look at this kid’s hair!

And just for the heck of it,

Jacarandas in Culver City. Gawgeous.

TroubleBug

May 29, 2013

By Lisa

Today, Leah is three weeks old!

We didn’t spend a full day at the hospital today; both of us had doctor appointments in Culver City, so we spent the first half of the day out there. After the appointments, we made a quick run to Menchie’s to fulfill Mandy’s 7-month-old craving. We were advised to avoid soft-serve machines during pregnancy because of the risk for listeria, and that was a huge sacrifice for Mandy (and therefore me) because we LOOOOVE frozen yogurt. It’s like a THING. So we went today. I managed to tolerate a wee bitty serving of chocolate brownie and cinnamon bun with a few sprinkles of Cinnamon Toast Crunch (they’re kinda like crackers, right?), and Mandy filled up her bowl with blackberry, raspberry sorbet, and vanilla, with raspberry sauce. We know you wanted to know.

After Menchie’s we stopped by my BFF Z’s house to pick up some breast-pumpy-type supplies she had for us. We got to see our little buddy Ry Ry, who, at 9 months old, looks like a monster truck baby now that we’ve been staring at LeahBug for three weeks. Seriously. Leah has thrown off all sense of baby proportion we might have had. And also we hadn’t seen Ry Ry in about a month so I’m sure he has grown, too. At first he was a little bleary-eyed from being woken up, but his face broke into a big adorable smile when he saw his aunties. Too sweet.

Once we were at the hospital, we took BabyBug out for some kangaroo cuddlage. Mandy finally got to use one of the blankets she made, so our baby bug became a baby Bruin. (See photo below).

When it was my turn to hold her, Little Miss LeahBug decided to cause some trouble. I had held her for about 9 seconds (maybe) and she was still squirming and trying to decide which way she wanted to face, when suddenly she tried to rear her head back (luckily I was holding her head like a good Mama should, so it didn’t go too far), and threw her arm forward at the same time, and somehow managed to dislodge her suction tube. Kangaroo time fail! She had to go right back into her isolette so the nurse could prep her for a new tube. Naughty Leah! So alas – no more kangaroo time for Mama Lisa today. Instead the nurse replaced her tube with a new one and then wrapped her up. She was WIDE awake and eventually managed to break out of her swaddle, so the nurse came back and bundled her up like a proper burrito, at which point I was able to lull her to sleep with the paci and a hand on her head. Yay for sleepy baby. I hope that trick still works when she’s 3.

NOM.