Today was Leah’s last dose of methadone. She is NOT PLEASED. To be continued…

We have been experimenting with cloth diapers, which I think is also slightly displeasing to the little one since she’s used to Pampers. It’s been an adventure but Leah is being pretty tolerant as babies go. So far we’ve tried Thirsties Duo All-In-Ones (both with and without extra inserts), Thirsties Duo Snap and Thirsties Duo Wrap, as well as Blueberry Coveralls. We’ve had some leaks and some successes – but overall we feel it’s a good step to take, and will save us money (and landfill space) in the long run, especially if we can transition to cloth wipes too. I used to joke about this when Leah was in the NICU and PICU – “Hey, but think of all the money we’re saving on diapers.” Ha. I think if we can hold out over the next couple of weeks, we might actually start to streamline the process and have it not be such an ordeal. We’re open to suggestions. Leah takes Lasix twice a day, which means her wet diapers are pretty heavy. So far, I prefer the all-in-ones (if we can just get them not to leak) whereas Mandy likes to go old-school and do the plain cloth diaper (with Snappies instead of safety pins) with the waterproof cover. It was a pretty funny scene in our room this morning, what with Mandy’s mom trying to teach her how to fold and pin the cloth diaper. What did people do before all these newfangled diapering doodads?

Houston, we have a problem and his name is Jeepers “All ur furniturez iz mine” Creepers.

I think we might be close to the discovery of babyfeetses.

“I love these Tender Grips way more than cellophane tape!!! No more owies!”

Yesterday was a day of sleeping on loved ones. Here’s BabyBug knocked out on Uncle Ralph.

A little nap together.

Just kidding! He was only pretending! Silly Uncle Ralph!

Knocked out on Gran a little earlier in the day.

Knocked out on cousin Kim.

From cousin Kim’s viewpoint

We woke up for cousin Natalie’s lap!

Reading a book from Auntie Joan. Thanks Auntie Joan!

Greeting the lamby from Uncle Ricky and Auntie Heather. Thanks guys!

Our new Tubie Friend, who has his very own g-tube and nasal cannula! Thank you, Tubie Friends!

“Mama? I think this giraffe is on acid. I don’t think they’re supposed to be hot pink with flowers on their feet.”

We’re still working on keeping that paci in our mouth. Leah has a major tongue thrust, so as soon as we let go of the paci, it pops out. She lacks the coordination to keep it in by holding it or by continued sucking. The stuffed animal seems to help a little bit – the paci is attached to the animal, so Leah has a little bit more to hold on to.

“Wheee! Look at me, getting into trouble with my g-tube!”

Magical Mommyshoulder

“What is this monkeypants monkey business?”

“Halp.”

“Never mind. I’m good.”

Goodness! We’ve now been home almost 36 hours. It feels like days and it feels like 5 minutes. I think “settled in” would be a massive overstatement, but let’s just say that we’re in. It is not unlike actually moving into our home for the first time, since we’ve been gone for 7 months and we’re coming back with a new normal. Unpacking has been exhausting but we made a little list and broke down the tasks into manageable pieces that can be done one day at a time. We will be back at Ronald McDonald House for a few days next week, because Leah has 7 appointments over the course of 4 days, so I’ll continue to do a little bit of unpacking every day while Mandy’s at work so that when we come home from RMH next time we’re actually coming home to home and not to a mess of boxes and suitcases. It is pretty chaotic.

Leah seems to be adjusting well. She’s a tiny bit sneezy and snorty, especially at night. I’m guessing this is because the house was just cleaned and vacuumed not long ago and there’s probably still dust in the air – and of course there are the cats to consider. Then again, sneezing can also be a symptom of withdrawal, and her dose of methadone just took a huge dive. Keeping fingers crossed that she is not straight-up allergic to the cats. We haven’t seen any red or watery eyes or runny nose so far, and no skin reactions. She has been around cat-owners all summer and hasn’t seemed to have any reaction to their clothing when she was held, so hopefully that bodes well for the kitties. She doesn’t seem to be in any distress in terms of breathing, so we’ll keep an eye on her and if she continues to be sneezy and a little sniffly, we may have to invest in an air purifier to suck up some of the dust and pet dander.

What else has been going on… Today Leah had her first doctor’s appointment since she got home. It didn’t take very long, did it? We just couldn’t stay away, I guess. I’ve been in touch with her doctor and medical equipment company all weekend. Hopefully things will calm down once we get past this transition – the move home and the weaning from methadone. Then again, after that we move into the next transition of eating by mouth. Today’s appointment was for occupational therapy. The OT attempted to give Leah a tiny bit of breast milk by bottle. It was too much for her and she got confused and upset. She wants so badly to nurse and suck, but she lacks the coordination to do it properly. She does a lot of smacking lips together and “nomming” but doesn’t get in many proper sucks. They count them. I think she did maybe three or four in a row today. We want to make sure we start feeding her by mouth while she still wants things in her mouth; I’ve had multiple parents tell me their kids developed horrible oral aversions, making oral feeds far more difficult, if not impossible.

I’m happy to report that we have not yet had a g-tube outage since we got home. I don’t know if it’s because we haven’t been “strolling” her around as much or if it’s because we taped the extension to her belly with paper tape. It’s also only been 36 hours. But we’ll take it!!!

Not too much else going on right now – unpacking, playing with baby, calming baby, soothing baby, trying desperately to get baby to stop crying… I can’t wait until she’s off these meds!!!!!

Oh – one more transition coming up: we’re going to take a stab at cloth diapering. Wish us luck!!!

We got Leah’s care package from Angel Love Boxes today. ALB is a non-profit organization that sends care packages to kids with chronic illnesses and disabilities. There are still some g-tube covers on the way as well as a tummy belt, which we are really looking forward to because we are hoping it will help keep Leah’s g-tube extension under control. The other thing that we are really looking forward to is that we will be receiving a donated Res-Q wedge some time this week. This is an orthopedic device meant to keep infants elevated at an angle to prevent reflux, and is especially critical in Leah’s case because if she spits up, she doesn’t really know what to do to swallow what remains in her mouth. The Res-Q wedge is better than the store-bought wedges because it’s at a higher angle, comes with a sling to keep the baby in place, and is designed to fit evenly in a standard crib to avoid smothering accidents. It is considered a medical device and we have a prescription for it from Leah’s doctors, but the insurance won’t cover it and it’s a few hundred dollars. Angel Love Boxes contacted the manufacturer and they agreed (under a few reasonable conditions, like collaborating with their OT to make sure we use it correctly for Leah’s diagnosis) to donate the wedge to us along with the current and next size sling (since she’s right on the threshold for the sizes but you have to use the proper size at any given time). We are grateful for the Res-Q Wedge makers’ generosity and kindness, and also *so* appreciative to Angel Love Boxes for working so hard to make sure Leah got the wedge she needs.

Did you notice the hamsa in the previous picture? Good eye! Being a Christian charity, Angel Love Boxes usually includes a handcrafted wooden cross in each care package; these are made by the org founder’s dad. We are a Jewish family, and while the crosses are beautiful and you can tell that a lot of love goes into making them, it seemed like they should go to families where they would be appreciated fully! So I wrote to the founder and said just that, but noted that we would love to have a hamsa that was made by her dad if he was willing. She asked for an example that she could show him and I sent a Google Image search, and the next thing I knew, she’d emailed me a design from her dad and also posted on the ALB Facebook page about the meaning of hamsas! So cool. This is the result of that whole exchange. It’s lovely and so special, and we can’t wait to find a permanent place to hang it!

We have angry baby, and we have a handmade weighted blankie from Angel Love Boxes! Let’s see if this thing works!

“Whoa, what is this? I think I like it!”

Another sparrow face for cousin Anya.

“OM NOM NOM, DELICIOUS BLANKET.” And we have a winner.

For those of you who wanted to know how the cat-cat-baby meeting went… here you go. Pretty uneventful, but that’s what we want!

And now, on to the rest of the photos!

I could not resist. Mouse over it. Again. Again. Again.

Aunti Staci reads a book to BabyBug while Mama packs

BabyBug in front of her first fully-lit Chanukiah. You can see how interested she is.

A church group sponsored a “Meal of Love” at Ronald McDonald House, and one of the ladies went around to the different tables and took a Polaroid (!!!!!!) photo of each family that wanted one. (The new ones, not the old-school kind). I love this because all of us are smiling. Well. Almost all of us.

Asleep on Mommyshoulder.

Sometimes we fall asleep still holding our toys.

Nommylicious paci. Sweet eyelashes.

We are laughing because our cannula tape came off. Baby Win!

Aunti Staci babysat for BabyBug at RMH on Saturday night so we could attend Mandy’s choir’s holiday concert just up the street. We received a string of adorable photographs all night. If only Leah’s oxygen supply company hadn’t totally misunderstood us when we told them when to pick up her large tank, the whole night would have been flawless. Not sure how “not between 8PM-11PM” became “only between 8PM-11PM,” but what can you do?

Sweet charming Bug

Twinsies

GiggleBug

“Aunti Staci, I’m sorry I peed on you while you were changing my diaper. Well, kind of sorry. Actually, it was pretty funny.”

We received this beautiful little baby quilt from a member of Mandy’s choir (from which she’s currently on hiatus because BABY). So gorgeous!

“ILOVEYOUMOMMY!”

“Here, let me pet your face.”

Love.

Our little family!

“Cheeeeeese!”

“Really, Mama? Seriously? *eyeroll*”Already a teenager at 7 months old.

Goodbye, room!

Falling asleep on the ride home.

Asleep on the ride home.

Groggy and looking a bit stoned on the ride home.

Knocked out on – well, you get it.

“So… this is new.”

BabyBug meets Glo-Worm.

BabyBug loves Glo-Worm.

BabyBuggy after her first bath at home!

Snuggling with Mama

Silly Bug

“How do I look?”

“Do I have a hair sticking up?”

“OH MY GOSH! THIS IS GOING ONLINE, ISN’T IT? I’M SO HUMILIATED!”

OMNOMNOM. Mommyfinger.

Mama’s new pajamas. ‘Cause I know you wanted to see them.

“Mama, what’s sunlight?”

BabyBug asleep on Gran’s lap

“Hm. Uncle Ralph? How come you’re always here? Wait – you live here???”

“Uncle Ralph, why you gotta be so silly?”

Buggy concentrating very hard on her own personal ladybug cheerleader on Uncle Ralph’s shirt

Snuggling with our Binkeez. I wish they made them in grown-up size! It’s so soft!

Delicious bear lovey hiding under the Binkeez

Baby taco! Baby pita! Baby ice cream cone!

Tasty bear lovey!

Leah still loves her Glo-Worm!

I know my closest relatives will appreciate this. It’s in our DNA to appreciate this.

Oh yes. I missed this face.

Let’s see… where did we leave off? Ah, yes. BabyBug had just gone to the ER and had emergency oxygen delivered because there was no order. And then poop. Ha.

So. On Saturday we had a few more visitors, including Faith and Matt as well as our friend Jennie, who has been living in Boston for almost four years and re-relocated to Los Angeles over the weekend. There were two outside groups at RMH on Saturday – one preparing a meal for the families (they call these “meals of love,” formerly known as “happy meals”), and one setting up a little village as part of the house’s Christmas decorations. I’m not a big fan of Christmas decorations as a rule, but the little village is pretty cool – and little cartoon characters make cameos throughout the display. I’ve posted pictures below.

On Sunday, my dad visited too, as well as our cousins. Sunday was another day of excitement. In the morning, my dad came to visit and we all went over to the other house for a “meal of love” breakfast, and just as we were getting ready to go back to the house where we’re staying… Madame Butterball’s g-tube fell out. AGAIN. I raced back to our room and got supplies ready and we reinserted the tube. Instead of taking her to the ER, we called the peds unit and asked how we could get ahold of the surgical residents so that we could avoid a trip to the ER. At the same time I mentioned the whole oxygen mixup. The charge nurse said she would follow up, and shortly thereafter we got a call from a doctor who just went over what happened and told us what to watch for and said we didn’t need to bring her to the ER. YAY. A few hours later… the medical supply company attempted to deliver Leah’s oxygen. All of it. To Ronald McDonald House. Whoops. We got enough to last us until we head home, and we’ll have to call and request the proper tank sizes once we get there. We have the medium-sized tank here as a stationary tank and there’s no way we could move it – never mind the large one.

Whew. So that was Sunday.

Monday was my very first day alone with BabyBug; until now it’s been the three of us, since Leah got out just before Thanksgiving, but it was time for Mandy to go back to work. Leah and Mama managed to get through the day just fine, aside from a little bit of tardiness to Leah’s doctor appointment (the shuttle company was short a driver yesterday). The general consensus regarding Leah’s g-tube is that it is probably coming out more frequently because she’s on continuous feeds. The RNP also increased the amount of water in the balloon. We have to keep her on continuous feeds until the methadone wean is completed to avoid more projectile vomiting episodes, but that’s just another couple of weeks and then we can work on getting her to consolidated feeds. And then hopefully the g-tube will stay put.

Other than the appointment, the day was pretty uneventful – no g-tube outages, just a bunch of crankpot antics. I was still exhausted from yesterday when we hit last night. I think I was up until about 2AM with Leah last night because she has been suuuuuuper fussy these past few days. I think it’s a combination of teething (normal baby thing) and withdrawal from methadone (not normal baby thing). Poor bunny.

Today Gran drove Leah and me to an appointment (mine, not hers) and then Leah got to have her first grocery shopping experience so that Gran and Mama could grab a bite to eat. Leah LOVES the stroller so it was perfect – the store is huge so we just walked around and around with her so she could drift off to sleep. Yay for naps! Leah remains cranky today – her dose just went down again and she is PISSED.

And that’s our story for the past few days: Wee fussbudget. We’ll take advice – for teething or for withdrawal. Thanks in advance!

For those of you who have been asking… we will go home on Sunday. We’ll be back plenty – the kid has 10 appointments in the next 30 days and that will go up – but it will be nice to be at HOME home. I’m sure Leah will love her kitty brothers. I’m not sure they will feel the same.

A collage from Aunti Staci.

A gift from the nice people who brought lunch for the families on Saturday.

Buggy the Vampire Slayer. Are we precious or are we precious?

“Grrrrr! Argh!”

Buggy and Jennie

More Buggy and Jennie

Buggy and Mommy

A mystery-animal lovey that Leah received as a gift. I call him Ponysaurus. She adores him!

Yup. Adores him.

“Look, everyone! I haz a pretty blankie from Binkeez For Comfort.”

Pretty in her pink Binkeez.

“OMG SNOWMAN!”

“OM NOM NOM SNOWMAN!”

“I win the snowman!” Mommy Mandy made him. He jingles! I call him the Sno-Worm because he looks kind of like a Glo-Worm.

Chanukah display

The village

Looney Toons

The Mickey Mouse House with caroling Looney Toons

More village

Sesame Street

The Mickey Mouse House

The whole village

Nomming on the paci.

This will be so much less cute in a couple of years.

Tummy time!

Comfy with our Binkeez.

Cute with our Binkeez.

Pissy with our Binkeez.

“Grrrrr, Mama! I’m a tough baby!”

Hi Mommy!

“I think I’d like to nom on a finger.”

“I want your thumb, please.”

“WANT MOMMYTHUMB NOW! RAWR!”

Believe it or not, this outfit (cute terry dress and black leg warmers) is totally practical. We put this on her after the g-tube incident so that nothing would be pressing on her belly. She was thoroughly exhausted after the whole ordeal.

They’re so cute when they sleep.

Mama caught someone smiling!

“Four score and seven years ago…”

“Mama, why you callin’ me Abe?”

Cousins! a.k.a. our diaper heroes!

BabyBug draped over Mommy’s shoulder

“RAWR! I GET YOU!”

BabyPie’s new friend Haley sponsored her for a cape from Tiny Superheroes. She had lots of fun being SuperBug. Flying Baby!

SuperBaby collage!

Leah’s furry sidekick, Morgan, who stole Leah’s Chanukah bib (which Great-Grandma Marilyn brought to Thanksgiving) because she needs it to save the world. If you trust what Aunti Staci says, at least.

Sweet little gift Leah received from Joyful Givings – a classic Eeyore and a cute headband!

HI GRAN!!!

We love car rides!

We love sticking our tongue out at Mama.

Wheeeeeee! Diapee change!

What an exciting couple of days we’ve had!

Leah was released from the hospital on Wednesday in the late afternoon. Before we took Leah back to Ronald McDonald House (a.k.a. “Home-ish”), we strapped her into the stroller for the first time so that we could embark on the requisite Baby Parade to PICU and NICU, where all of her nursie friends on shift at the time came out to say goodbye to the little Empress. They were very different parades; in PICU it was very much a goodbye as we didn’t really get a chance to say goodbye to everyone when we left last Friday. Every time we were just about to exit the unit, another nurse came running to catch us and say goodbye before we left. The farewell in NICU was more of a little reunion, since Leah hadn’t seen most of her nursie friends there since she left in August (with a few PICU-floating exceptions). Everybody was very impressed at our little chubby bunny; she’s definitely grown a lot since she went off to college (PIC University).

I should probably add that Leah did NOT enjoy her first experience being packed up into the stroller. By the time she got to PICU (all of about five minutes later) she was fast asleep. We really wore her out.

After the Baby Parade, our cousins Beth, Brian and Erin helped us haul a boatload of stuff down to the car along with the Empress herself. We’ve been moving stuff back to RMH gradually but totally underestimated the amount of stuff we still had in the hospital room, although to be fair, a significant portion of that was medical stuff. This kid travels with an oxygen tank twice her size. While Mandy and the gang went to load up the car, I trekked to the pharmacy, where I blew through a good $100 on her first set of prescriptions. One of the prescriptions (for which I actually had to go back later that night because of a logistical mixup, so this is technically a fast-forward) nearly caused a Mama-heart-attack when the pharmacy guy told me it was going to be $176. For a 15-day supply. We went back and forth on the issue for a good several minutes with me convinced this couldn’t be right and the guy insisting that he had checked and double-checked and even put in a pharmacy exemption and that’s just how it came out. I was just about to give up and pay it when the other pharmacy lady stepped in and said, “Let me see.” It turned out something was mixed up in the computer. A few minutes later she asked if I would prefer a $5 copay. Um. Yes, please. Heart attack averted!

SO. Rewind back to our departure from the hospital… after we got everything unloaded from the car and hauled up to the room, we went downstairs and celebrated the first night of Chanukah with our little girl and our cousins. Really, what happened is that our cousins brought Chanukah to us. They brought latkes (sweet potato AND regular) and sour cream (we had applesauce here), cookies, and presents! Yay! They really made it feel like Chanukah, which is pretty impressive under the circumstances. And Ronald McDonald House had set out jelly donuts for the occasion, which made the meal complete. (Once you’re about 23 or older, Chanukah is an 8-day stomach ache!) Thank you for help and Chanukah, Beth, Brian and Erin! We closed the evening with a shehekheyanu in front of RMH’s electric chanukiyah. What an awesome welcome home-ish!

The first night was pretty uneventful, which is about the best thing we could ask for. Neither of us slept very well, since we got to bed pretty late and then woke up a bunch of times to make sure the kid was still breathing. I’m still sleeping with one ear open and if I wake up I can’t get back to sleep until I can hear her little snore.

Thursday was a whole new day for first-time baby experiences! We continued to adjust to her very complicated schedule, which involves multiple medications in different (ridiculously small and precise) amounts that we have to measure, as well as a nebulizer treatment every 12 hours and a continuous feed that has to be maintained on the feeding pump. After we got through the morning routine, we took Leah downstairs, where she got to meet some of the folks who have been hearing about her all summer, including a couple of the families and also the RMH front-desk employee, who is the same very sweet girl who was there to check us in and show us around when we first arrived at RMH. We were especially excited to introduce Leah to her since we’ve been showing her pictures (and adorable tiny dresses) for months!

After the morning visits (and multiple loads of laundry), Leah got her first long car ride out to Aunti Staci’s house, where we celebrated Thanksgiving with the family, including my parents (and sister, Aunti Staci), Mandy’s mom and brother, my grandma and grandpa, my other grandpa, and one of Staci’s friends. Also present were two jailbreaking felines who managed to open the door to the back hallway, regretted their escape from the bedroom every time and fled back to safety, and yet inexplicably kept repeating the process. I do love cats, but sometimes they don’t think things through, especially when turkey is involved.

For her part, Leah had a pretty overwhelming Thanksgiving day. There was a good stretch of time in the middle of the evening during which she could not be consoled, and needed to be taken to a quiet, dark room and rocked and bounced to sleep. We think it was a combination of our having spilled a tiny drop of the methadone dose and just the simple fact that everybody wanted to see the baby and it was probably pretty freaking overwhelming for her. She had tried to take a nap earlier but couldn’t seem to drift off. By the end of the evening she was feeling a little bit more social again. Very few people actually got to hold her, but that’s probably for the best since fewer arms = fewer germs.

We are very grateful that Leah was able to celebrate her first Thanksgiving with her three grandparents and three great-grandparents as well as the other folks present. Aunti Staci did a beautiful job of combining yummylicious and healthy. Who knew she could cook? I need the recipe for the butternut squash, Aunti Staci!!!! And I was SO FREAKING GRATEFUL that I was able to EAT. I definitely didn’t eat as much as I would have on any other Thanksgiving, but I definitely felt that traditional sensation of needing to be rolled out to the car. Ha. Aunti Staci even made a pumpkin pie from SCRATCH – and she doesn’t even like pumpkin pie! What a good sister! She had also made hand-whipped cream for the pie, but a certain feline dipped an entire paw into the mixture, so it was no longer fit for human consumption, although I’m sure the cat enjoyed his portion.

Today we got that first trip to the emergency room out of the way. It had to happen eventually, right? Aunti Staci picked me up to take me to an appointment out in Pasadena and then run some errands. As soon as my appointment was over, I got a call from Mandy – Leah’s g-tube had fallen out! Her nurse practitioner did say it would happen on a holiday weekend when nobody was around, didn’t she? I guess she knows how it works! Mandy had grabbed the first thing she could find to replace the button, and it turned out to be the Mic-Key button. I’m not sure why we still had it, but the docs had kept it with her other medical supplies so it was there. Once Mandy got me on the phone, I directed her to the spare Mini One and told her what the RNP had told me to do. Then she called the advice nurse to find out whether she should take Leah to the ER to be checked out by the surgical residents. The nurse was going to try to help her avoid the ER, but it turned out the only person who could look at the g-tube without an ER visit doesn’t see babies. So the ER had to happen, turning this into an expensive little misadventure. They did a quick contrast study and everything looked good, so yay for that.

Then, we got our first major equipment screw-up out of the way. Mandy noticed this afternoon that Leah’s oxygen tank was getting pretty low. We had been informed that the medical equipment company would send a bunch of tanks to the house and had planned to have a family member drive some up this week to avoid confusion with delivery addresses. However, the tanks never showed up. When I called this afternoon I was informed that no oxygen had been ordered, but since it was oxygen (i.e. a critical device) they could arrange for a tank to be sent to our home to hold us over. At the time I thought she had enough to get through the night so I figured Mandy’s brother could get the tank in the morning and drive it up to us at RMH after work. So I said to go ahead and deliver to our home. Then I called Kaiser’s DME department to find out why no oxygen had been ordered – and they told me there was no prescription for it! OY VEY! Apparently what happened is that there *was* a prescription for it on Monday, but when Leah was not discharged they cancelled the prescription because they didn’t know when she would be released. And when Leah was discharged on Wednesday, apparently nobody reinstated the prescription. So it never got processed, and the multiple tanks never got delivered, so nobody every got to bring us the spare tanks, and on top of all of that, by 9:30PM the holdover tank had not been delivered either. I called the medical equipment company and oh hai, they had no delivery scheduled for an oxygen tank. Well gosh. Thankfully, the lady on the phone was able to reach the on-call technician and they are going to make a delivery to RMH tonight so that we will have enough oxygen to get Leah through the weekend while we sort out this whole mess. This must not have been a full tank; we only started it Wednesday night. It seems like it should have lasted us more than 48 hours. UPDATE – The after-hours tech just delivered two tanks of oxygen and as it turns out, no, these things shouldn’t really last more than about 48 hours. Maybe really only 36 – they’re meant for portability. Great to know. They also didn’t show us how to change the gauge, another thing the tech showed me when he delivered the tanks.

SO. Our first 48 hours out of the hospital has been generally uneventful, and the frustrations we did experience were relatively tolerable as frustrations go. Someone please knock on wood.

And now, what you’ve really been waiting for: PICTURES!

“So… what’s going on?”

“Um, really, WHAT IS GOING ON?”

“Um, hi, can somebody please tell me WHAT’S GOING ON?”

“Let’s blow this joint!”

“Mommy, you suddenly got really tall!”

“Welcome to my crib.”

So this is what freedom looks like! Ta da!

The first night of Chanukah, minus the latkes (which were being reheated)! Thanks, BB&E!

“Mama, this new place has really crappy lighting.”

Just ’cause.

Baby tries out the Maya wrap for the first time. I think she likes the baby-wearing thing!

“Mommy says I clash. Guys, tell Mommy I don’t clash!”

“Who you callin’ turkey?”

Happy Thanksgivukah!

“Hi, Grandpa Bill!”

“Um, excuse me, Mr. Grandpa Bill? Are you aware that you have a toy on your chin?”

Mommy and Gran

More pictures, Mama?

Hi Great-Grandma Marilyn!

We go from sweet to sassy in a matter of seconds. This will be a lot less cute in a few years.

Aaaaand this is where it all went to hell.

Chanukiahs (chanukiyot if you want to be all Hebrew about it)

Leah’s Chanukah present from BB&E. Isn’t it the cutest thing?

After playing hermit for several hours the BabyBug was finally willing to be seen in public again…

She even smiled a few times.

Cute little gang

Sometimes we stick out our tongue for pictures.

Okay – frequently we stick out our tongue for pictures. (This is actually from the beginning of the night, before we changed her into her cute Thanksgiving outfit).

Facetime with the family up north! Hi guys!!!

The RMH chanukiah last night.

“You silly, Mommy!”

Delighting in Mommy’s silly

“Look, Mama, you can’t just say ‘smile’ and get a smile. It doesn’t work that way. You have to make a funny face.”

“See, this is how you do it. Funny. See?”

Third night of Chanukah – and Shabbat, too!

Sometimes you’ve gotta improvise.

Leah in front of the Chanukiah. Sleeping.

So, a funny thing happened on the way to peds – they decided it’s time for Leah to go home tomorrow.

WHAT?

Let me back up. As you might remember, we moved over to the pediatric unit (peds) on Friday in the late afternoon. Leah was a pretty happy Bug on Friday, and she was especially happy to see familiar faces on her first day and night in the unit; both nurses had taken care of her previously in the PICU. By Friday evening, the doctors were saying she would be discharged on Monday. Monday! OMG. Monday.

On Saturday it all fell apart. Leah started off her day fairly decently, but she started to have a little bit of reflux at the 12PM feed, and by the 3PM feed we were learning all about the joys of projectile vomiting. In case you were wondering, she has pretty good aim. We assumed it was just reflux, so we made extra certain to keep her upright (aside from one diapersplosion incident that needed to be addressed stat) and she got her first round of 6 month vaccines as planned on Saturday afternoon. When she was still spewing milk at the 6PM and 9PM feeds, it became apparent that something needed to be done. The doctors were already planning to try a night feed anyway (three feeds spread continuously over the evening so that mamas can sleep), so they proceeded with that plan and just kept her on continuous feeds into Sunday morning. She threw up again around 6AM. By about Sunday afternoon the surgery team decided to discontinue Leah’s feeds and put her on IV fluids. The doctors wanted to start her on Reglan, but we declined that medication for a number of reasons, mostly because it can have some pretty serious side effects and if you get them, they don’t go away when you discontinue the medication. It’s not something you’d want to use lightly. So we were kind of at a standstill on Sunday afternoon, and BabyPie remained on IV fluids throughout Sunday and into Monday while we waited for the results of a viral panel (taken Saturday eve, I think) to determine whether she had contracted some sort of stomach bug.

Leah cried all day Sunday, at least during the time that we were there; Gran came to sit with her for a bit while we went back to RMH to do some cleaning and rearranging in preparation for an eventual homecoming. She was like the little gremlin that got fed after midnight. It was pretty awful. Poor little bunny. It was also a challenge being in a new environment because the nurses taking care of her by this time weren’t familiar with her normally sweet (albeit sassy) demeanor and neither were the doctors, so we had to keep reiterating that this was very atypical behavior for her. She doesn’t just cry to hear the sound of her tears. Something is wrong when she acts like this.

Yesterday (Monday) was pretty much a circus of doctors coming in and out of Leah’s room since we are so close to discharge.

The surgery team came in and proposed that it was possible Leah’s methadone had been weaned down too quickly; she had been transitioned from 0.4 to 0.3 cc on Friday, right before she left PICU, and then to 0.24 cc on Sunday. They said she could be experiencing some withdrawal symptoms, which could explain the vomiting. She had also spiked a little bit of a fever on Sunday night, and that could also be explained by withdrawal (although it could also be explained by the vaccines she received Saturday). They have been adjusting the doses so that she can be re-weaned a little bit more slowly. She had another fever yesterday, but she got some Tylenol and that has kept it under control. Surgery started up her feeds again at 50% breast milk and 50% Pedialyte, continuous, and they bumped her up to full feeds today. She will come home on continuous feeds via feeding pump.

She was also assessed by the pulmonary doctor, who agreed with us that a sleep study was appropriate and said he wants to keep her on oxygen until the study – which could be a couple of months. So she will come home on oxygen. She had been weaned off of it by Friday afternoon after failed attempts three days in a row (with the last attempt being Friday morning), but they put her back onto it on Sunday when she was squeaking like mad and working so hard to breathe. I had asked if the retractions might be contributing to her nausea and wanted them to see if putting her back on a tiny bit of oxygen would help, but it turned out to be a pretty good idea in general, I think, because her laryngomalacia was flaring up pretty badly by Sunday. The pulmonary doc also put her on Pulmacort, so she will be coming home with a nebulizer too.

Doesn’t this feel like The Price is Right? “Our contestants today will be going home with a lovely nebulizer, an oxygen tank on wheels, and a feeding pump!”

Last night was a whole other mess, what with our little Rockette trying to pull out her IV, getting swaddled (humiliating AND painful – two offenses in one!) and then crying for at least an hour afterward. See below for details about that fabulous experience.

Today has been another circus, but it is looking like Leah will be discharged tomorrow unless something goes horribly wrong (again). Let’s hope that doesn’t happen – tomorrow would be a good day. Leah could celebrate her very first night of Chanukah out in the real world. The general consensus is that she needs to get out of here before the flu and RSV starts permeating the floor. That time is coming very soon – it has already started to some degree. It would be very, very bad for her to get sick right now; she’s still pretty delicate, and she has a lot of respiratory issues, which would make even a simple cold pretty freaking dangerous to her. Since she is going home on oxygen, continuous feeds and methadone and since she isn’t ready to start swallowing therapy just yet, there’s really nothing she needs done here that we can’t do at home, in outpatient appointments, and through in-home therapy services. At this point in her recovery process it’s just safer for her to be out of the hospital. We have a long road ahead of us, but this is another good start in the right direction.

The speech pathologist came by last Thursday and did a swallowing assessment. She thinks it’s too early to start teaching Leah to swallow and feed orally because of her laryngomalacia and especially because her vocal cords are not moving sufficiently post-extubation. She will continue to work with her, but we won’t be feeding her by mouth at home yet. This whole feeding thing is going to be a long, long road. BabyBug did get her first little drops of water, though. She was like, “WTF?”

We are a tiny baby.

Mama decided to be HILARIOUS and put shoesies on the nakie baby and see how long it took Mommy to notice.

Baby Badass. She’ll cut you with her paci.

These shoes kinda make it hard to fear her, though.

The toes are even less fear-inducing.

Precious!

Our last day in PICU!

“Hello, friends!”

“Hello friends! My name is Baby Gene Simmons and I’ll be your new band member today.”

Our first full day in peds, before it all went to hell.

We just might be sisters.

“Um, Mamas? Really? Zebra print? With this dress?”

“LIKE, GAG ME WITH A SPOON! I TOTALLY CLASH!”

Sparrow-face for cousin Anya

Snugglies for Mama!

Faith and LeahBug!

Faithie works her magic!

We fell asleep holding our rings!

“This is how I feel today. BLAAAAAGH.”

Sleepy bunny

“Today sucks.”

Nap with/on Aunti Staci

If you visited BabyBug in PICU, you know that her wall was plastered with coloring-book pictures colored by various friends, family and nurses. We plan to put them all in an album for Leah so she can enjoy them for years to come. Mostly we had Minnie Mouse and some random generic unicorns and mermaids, along with a wild-animals coloring book. This, though – this was the highlight of last week. You don’t even know. I was five years old again. The top book had HOLOGRAM STICKERS! OMG. 80’s flashback. Sometimes it’s the little things that make you feel all warm and fuzzy.

Dear Lindsay, Michelle, Ezra and Mango Cat: For real? For real. This totally made my day.