“Sometimes leaving is a joyful sign…”

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!

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“So… what’s going on?”

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“Um, really, WHAT IS GOING ON?”

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

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“Let’s blow this joint!”

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“Mommy, you suddenly got really tall!”

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“Welcome to my crib.”

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So this is what freedom looks like! Ta da!

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

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

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Just ’cause.

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

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

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“Who you callin’ turkey?”

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Happy Thanksgivukah!

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“Hi, Grandpa Bill!”

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

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Mommy and Gran

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More pictures, Mama?

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Hi Great-Grandma Marilyn!

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

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Aaaaand this is where it all went to hell.

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

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

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

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She even smiled a few times.

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Cute little gang

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Sometimes we stick out our tongue for pictures.

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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).

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

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The RMH chanukiah last night.

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“You silly, Mommy!”

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Delighting in Mommy’s silly

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“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.”

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

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Third night of Chanukah – and Shabbat, too!

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Sometimes you’ve gotta improvise.

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Leah in front of the Chanukiah. Sleeping.

A long overdue update – but hopefully worth the wait!

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.

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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?”

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We are a tiny baby.

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

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

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

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The toes are even less fear-inducing.

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Precious!

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Our last day in PICU!

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“Hello, friends!”

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

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

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We just might be sisters.

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

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

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Sparrow-face for cousin Anya

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Snugglies for Mama!

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Faith and LeahBug!

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Faithie works her magic!

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We fell asleep holding our rings!

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“This is how I feel today. BLAAAAAGH.”

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Sleepy bunny

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“Today sucks.”

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Nap with/on Aunti Staci

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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.

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

Lousy weekend in Peds

Okay, so I tried to post on Sunday and apparently it failed and I didn’t realize! So here is the update you should have seen Sunday:

Rough 24 hours in peds. BabyPie has taken to throwing up after every feed. Not just a little spit-up but like exorcist-style projectile vomiting. She is pretty unhappy. Needless to say, so are we. We miss PICU already. The nurses here don’t really know her so they don’t understand how atypical it is that she should be crying nonstop for over an hour.

And then here is the update I posted to Facebook yesterday:

Have been meaning to update the blog but BabyPie has been keeping us busy. She cried all day yesterday – and sounded like a sad little kitten, with her injured vocal cords. Today she has been working really hard to breathe but thankfully there has been no more vomiting – they stopped her feeds yesterday and today she’s on smaller feeds plus anti-nausea meds. Nobody is really sure what is going on, but there is some speculation that her methadone may have been weaned down too quickly. Also possible she may have aspirated when she threw up. Then again, it’s also possible the throwing up was from the methadone and the fever and irritability are from the vaccines she got later in the day on Saturday. Or maybe the methadone has nothing to do with anything and we’re just missing something. There is just a whole lot going on at once and hopefully things will settle down soon.

And then here is the brief update I would have posted last night had the Bug not kept me occupied:

Another rough night! Long update coming soon, I swearz! Bug has been having issues left and right! Tonight it was the g-tube flaring up with redness and soreness. Mama had the genius idea to swaddle her and it totally backfired – the g-tube was already red, but swaddling just reminded her how sore it was and she flipped her lid over it. But I did have a good reason for wanting to swaddle her. My little Rockette had been kicking her foot up to her head, grabbing the IV tube, and YANKING like she really meant it. This kid likes to pull stuff she shouldn’t be pulling!

Longer update coming soon!! For reals!!!

Midweek update

WHEW. What a day for information overload. I feel like we’ve lived through three or four days in the past 48 hours, largely because I keep being woken up and going back to sleep. Stuff that happened yesterday morning feels like it really happened earlier this week. It doesn’t help that I keep resetting the clock on my phone because I can’t handle running out of Candy Crush turns while baby is napping. What? Who said that?

Okay. So. Yesterday the head PICU doctor (same one who wanted to move Leah to peds before surgery) came in and basically gave me the impression that he had heard Leah was going home in a couple of days. You can imagine my incredulity and panic. I want to take this baby home SO BADLY but I want to do it when she’s ready, and she is not ready yet. She’s still on oxygen. She’s not up to bolus feeds yet. She’s still making terrible horrible awful breathing sounds. She just tested positive on two different cultures last week. She hasn’t been assessed for sleep apnea, hasn’t had her tracheomalacia re-evaluated, and hasn’t had <i>any</i> therapy or assessment with respect to swallowing or sucking. That is all stuff that has to be dealt with before she can come home. I’m not taking her out of this hospital without a sleep apnea evaluation; I’ve watched her stop breathing in my arms and then snort back to it. And I’m sure not taking her home without any sort of assessment as to how she’s even swallowing her own secretions, let alone whether she will be able to feed orally at any time soon. We had been told she would begin this therapy as an inpatient. She also needed to have her vocal cords assessed for damage following her stint on the ventilator.

SO I repeated all of this to her regular PICU doctor and he didn’t seem to think she was going anywhere any time soon – the head PICU doc made it sound like she’d be home by Friday or something. He assured me that the assessments I mentioned will take place, including the swallowing assessment, ENT exam, and sleep study. What does sound likely is that they will move her to peds soon, which I guess makes sense at this point because she’s relatively stable and not waiting for a surgery that would put her back here (barring any horrible setbacks).

My worries about peds are 1) I would guess there might be more sick and potentially contagious kids and parents since it’s not an ICU – I don’t know how strict they are about visitors who are getting over illnesses; 2) the rooms there have regular doors and not glass sliding doors, so I don’t know how the nurses see the patients when they’re not actually IN the room; and 3) there is only room for one parent to sleep in peds. That will not be very fun for us. Plus I have some concerns about attentiveness and the 4:1 patient to nurse ratio based on some things that I’ve seen and heard (one incident in particular), although the peds nurses who have floated to PICU have, for the most part, been great. I guess we really just don’t know until we get there.

SO. That was yesterday. All day I was complaining about the level of stridor she was exhibiting, but she didn’t seem to want to perform on command, so every time there was a doctor in there she got quiet. I think folks thought I was a wee bit crazy, but I knew she wasn’t breathing well. Apparently when I went back to RMH to do laundry the RCPs tried to wean her off the oxygen entirely, but she didn’t tolerate it so they went back to her previous level.

Today, I woke up at 5:30AM to what sounded like a creaking door in a haunted house. Was it a door? No, it was my kid’s breathing. I got a video this time, so that I could show the docs what I was talking about, and they agreed that she should not sound like that. They were already planning to have her evaluated by an ENT doctor, but they managed to get her to come by today to evaluate her. Grandpa Bill got a real show during his visit. The doc did the exam at bedside, which is to say that she stuck a camera down BabyBug’s nose until BabyBug was screaming like a very angry Donald Duck. This poor kid. It’s always something!

The ENT said she doesn’t think the stridor sounds are being caused by Leah’s tracheomalacia. She could not see the trachea in this exam, so she really couldn’t say for sure, but she said that tracheomalacia stridor usually manifests during exhaling. Leah’s squeaking seems to be happening on inhaling.

What she does see is as follows:

1) Leah’s vocal cords are not moving the way the ENT would like them to move. She referred to it as vocal cord paresis. She started spelling out “paresis” to me but I told her I’m familiar. *HEAD WALL HEAD WALL HEAD WALL* (What kept me down and out this summer was gastroparesis). The vocal cords are not completely paralyzed but she doesn’t see a lot of movement. She thinks that Leah’s vocal cord nerve may have been stretched a bit during surgery. Time is pretty much what she needs for healing. 2) Leah’s left vocal cord is a little thinner than the right one. This may be from the breathing tube.

#3 is where I start to get a little bit lost, but I’ll try to explain and maybe if you have a medical background you can correct me if I’m wrong. She believes Leah has laryngomalacia too, and that is what she thinks is causing the horrible squeaking. The way she explained it is that Leah’s larynx is floppy (like her trachea), and because of the combination of the floppy larynx and the resulting extra effort Leah has to put into breathing, the air travels through faster and creates this godawful creaking when she breathes. Something about the epiglottis. My sister could explain it better than I can. I’m sure I’ll understand it more once I read up on it. This is all new information and I don’t know offhand a whole lot about the anatomy of the larynx and associated structures. (But I can give you the complete legal history of same-sex marriage in California, which I did this afternoon for Leah’s nurse. Hey, she asked.)

The ENT did say she doesn’t think Leah is ready to try swallowing stuff yet – aside from the fact that her laryngomalacia could affect swallowing, she mentioned that the contrast study showed no leaks but the surgeons had expressed concerns about motility / peristalsis in the esophagus; just because it’s connected, that doesn’t mean it will function properly. Leah definitely wants to get started, so I hope her throat catches up soon. She wants very much to eat everything in sight, or at least to put it all in her mouth. Her fingers must be starting to get wrinkly by now. I guess she’s a baby or something. 🙂

What else… what else… Leah had another visit from the various volunteers who come around to sing to the kids. Today it was this singer-songwriter, Jennifer Paskow. She has a really pretty voice and Leah stared at her throughout the whole lovely medley of “Twinkle Twinkle Little Star” and “The Alphabet Song.” The BabyBug started to drift off toward the end. It was pretty sweet. Leah loves music! We’ll have to check out this lady’s work.

I had intended to post this update a good hour and a half ago but BabyPie got demanding. She was fuss-tastic, then she wanted to “nurse” and snuggle (yay), and then she thought she’d be cute and have another poopsplosion – RIGHT when the nurse was changing her diaper! WHOA. She thought it was hilarious. Great big smiles. I’m exhausted but pressing through. The minute this thing is uploaded I’m going to sleep!!!! (For the record: it’s nearly 2AM!)

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Look who held her paci for all of 10 seconds! GOOD GIRL!!!

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“Yeah, I know I’m brilliant. Applaud for me!”

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I’m torn between wanting to giggle and wanting to apologize for anything I might have done in the history of the universe that could have elicited such a face as this. Especially that last one. Not sure what she was pissed about but it might have something to do with that high-fashion hospital gown.

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“OH HAI, I’M CUTE!”

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The caption says it all.

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Leah laughing at/with her nursie today.

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Upside down bebe

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“Hi Mama! Nice to see you! I love my chair! I’m in a good mood! When’s my drugs?”

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“CHEEEEEEEEESE!”

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Like Aunti, like Babi.

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“Oh my gosh. I’m a burrito again. I’m so embarrassed. I hope I don’t run into anyone I know!”

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Sweet Bug

Monday, Monday

I think it’s fair to say that BabyBug has entered the social-smiling phase. Not gonna lie – seeing that little face light up when we step up to the crib pretty much makes this whole ordeal TOTALLY WORTH IT.

In other news… Leah’s mostly the same today as she was yesterday, except with a bit more stridor and a bit more voice to the Donald Duck impression. She’s trying so hard to talk to us and gets all the more frustrated when she can’t.

They are starting to consolidate Leah’s feed’s so that she can work up to bolus feeding (i.e. all at once). The g-tube is still leaking, and we’re told they’re going to do a “g-tube holiday” at some point soon, during which they remove the g-tube for a couple of hours to allow the hole to close a little bit so that it won’t leak as much. Folks, don’t try this at home!!!

Also… it turns out the “memory full” error on my phone was apparently the result of corrupted data or something to that effect; by backing up my iPhone and then restoring from that back-up, I was able to clear up almost 10GB of space. I’m not sure whether to feel relieved that I can finally take iPhone pictures again or disappointed to have lost a little bit of my Mamarazzi street cred. Maybe a little bit of both.

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Yesterday was Aunti Staci’s birthday and she came to celebrate with BabyPie! “Happy birthday Aunti Staci! I hear you’re allergic to wheat. Here, have my fingers instead of cake!”

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Buuuuuuuuuuugggg

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“BUUUUUUUUUUUUUUGGGGGGGGG!”

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Sweet smiley face

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But still the expert EmoBaby

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“OH JOYOUS DAY! MOMMY IS HOLDING ME!”

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Caption, please.

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“Oh Mama. You so silly.”

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“But I love you anyway!”

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“JUST KIDDING! I love you BECAUSE you’re Silly Mama!”

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“I sticks my tongue out at you, Uncle Rowf!”

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“Uncle Rowf, you kinda silly too.”

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“Uncle Rowf, you silly like this: Woooooooooo, sillyyyyyyyyy.”

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Our roommate sent us this pic of our precious Lobo this morning. He must have known she was sending it to us because he put on his extra-serious “you disappoint me” face.

Sunday Girl

Sometimes Mama gets to say “I told you so.” I *knew* there was a reason for those fevers Leah had been spiking last week. I kneeeeew. I had been pushing for blood cultures for a couple of days early this past week. Initially they had said if her temp spiked again they would do the cultures, but then the next day they weren’t aware that that had been set as the condition, so they were like, “Okay, well if it spikes AGAIN they’ll do the cultures.” Well, by Wednesday morning she looked sickly, so they finally did the freaking blood and sputum cultures, and yes, they both came back positive. So. There you go. The sputum culture showed a mild growth of pseudomonas (bacteria), and the culture they drew from the central line came back positive for staph. The good news is that they are not too concerned about the sputum culture – it wasn’t an infection per se, and she has been on antibiotics for several days now and has not spiked another fever. The staph is a little more worrisome (at least, in my opinion!) but they said that sometimes happens with the central line, and it often goes away when the central line is removed – which happened yesterday, as you may recall. They drew another culture yesterday and we’ll see if it still shows growth. The last thing she needs is a staph infection on top of everything else she has been through!

Well. On a less medical note… Leah is much more energetic today. We are even getting some smiles. We put her vibrating throne back into her bed and she is having a joyous and up-close-and-personal reunion with her favorite jingle-bug. She has been communing with him for over an hour. Every so often she tries to talk to him and bursts into a coughing spasm; she hasn’t regained her voice since being intubated, and her voice is, at present, not entirely unlike that of Donald Duck. I will be so happy when I can hear that little “AYE” again.

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Mmmm, almost-thumb!

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“OMGWHATISIT?”

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“Hm. Friend?”

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“Oh yeah! I forgot I liked him!”

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In case you were wondering what a BabyBug pout looks like. It’s even better with open eyes and furrowed brows.

A pooptastic morning

Well, our little bubbeleh had an exciting morning. It turns out that her central line has been leaking. Not sure whether that’s what was leaking last night, and I’m pretty sure the g-tube was also leaking, but the central line was dislodged from where it was supposed to be, and “stuff” was coming out and her wee shoulder was looking all swollen.. Surgery came by to take it out a little while ago. Not long before that, Leah had to have a mini bath because she had a giant poopsplosion and then had to have her leads and cannula changed because it was all so terrifically messy. The good news? Mama Lisa missed all the poopy excitement because she went to go get the car smogged (woohoo.). Sorry, Mommy Mandy.

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This is our baby.

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This is our baby on drugs.

Any questions?