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!)

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

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

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.

“OH HAI, I’M CUTE!”

The caption says it all.

Leah laughing at/with her nursie today.

Upside down bebe

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

“CHEEEEEEEEESE!”

Like Aunti, like Babi.

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

Sweet Bug

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.

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!”

Buuuuuuuuuuugggg

“BUUUUUUUUUUUUUUGGGGGGGGG!”

Sweet smiley face

But still the expert EmoBaby

“OH JOYOUS DAY! MOMMY IS HOLDING ME!”

Caption, please.

“Oh Mama. You so silly.”

“But I love you anyway!”

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

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

“Uncle Rowf, you kinda silly too.”

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

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.

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.

Mmmm, almost-thumb!

“OMGWHATISIT?”

“Hm. Friend?”

“Oh yeah! I forgot I liked him!”

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

Leah just had a spitball so big that I seriously thought she was spitting up. Rabid baby! You’re welcome for the information. This happened maybe a little bit after midnight (it’s almost 1:30AM now). This post is mostly for reference later on (when we’re like, “Hey, which night did Leah have that monstrous spitball, again?”).

Leah’s been a Sticky Stinkerbell all evening – her g-tube has been leaking, so she smelled like a baby that just spit up even though she didn’t. The baby milk-breath was much more exciting. The nursies just gave her a bath and now they are replacing the dressing on her central line because the bandages are all soaked with icky fluid from the g-tube.

I bet you are SO GLAD you read this post.

ME TOO.

Time for bed.

Update, finally!

Leah’s about halfway up to full continuous feeds through her g-tube, and after that they can try bolus feeds (all the food at once every 3 hours) like she was getting before. She’s not feeding orally yet, but… her breath smells like milk!!!! Our kid’s breath smells like milk! I’m sure it sounds odd to be excited about that, but who cares? MILK-BREATH BABY!!!!

Leah’s breathing has mellowed out. She’s still working fairly hard and getting a good amount of help, but they no longer have to give her racemic epinephrine treatments, and they were able to take her off of nasal CPAP this morning and put her on regular high-flow oxygen. They’re going to reduce the oxygen level a bit but will wait until morning so that it is easier to monitor her once the change is made. The preliminary blood cultures show no infection but the others aren’t back yet. She still has a nasty cough, but the surgeons seem pretty optimistic that we’ll be able to start working on swallowing this week.

So that’s how the bug is doing! You know, in case you were wondering. 🙂

“Hi Baby!” “HI MAMA!”

“Hi camera!” “HI MAMA!”

“Oh, THAT camera!”

Clearly one of us did not say cheeeeese.

Hippie Baby

“I’M WIIIDE AWAAAAKE”

Nummy delicious Mommyshoulder and Babycheek.

Hello Gran!

We love our fluffy bear-lovie.

“What, what’s that over my head?”

“OMIGOSH, MY MOBILE FRIENDS!!!!”

“Let’s talk, Gran!”

“MMMOooooommmyshoooooulderrrrr”

Leah and Mr. Fly meet again! Reunited and it feels so good…

“Well, hello there, my winged friend!”

It’s exhausting being so cute.

We have Gloomy Sunday, Manic Monday, Ruby Tuesday… what do we have for Wednesday? (The “Happy Days” theme song does not count).

So. Yesterday was an improvement compared to Monday, but I don’t know if I could say the same for today. Those fevers that I mentioned before have continued to come and go. I held her yesterday and when we put her back, her temp was 101.3 under one arm – and 103 under the other (that’s the arm that was against me). It’s very rarely been below 99 degrees and usually hovers around the high 99’s or low 100’s, but occasionally spikes. She was having suuuuuuuuch trouble sleeping yesterday; she would fall asleep for maybe 15, 20 seconds and then startle herself awake. I had thought of asking for a weighted blanket or swaddling her, which used to calm her in the NICU, but figured that it would overheat her, which wouldn’t be helpful. Then Gran Sharon was standing with her at bedside and noticed that even just holding down her legs securely seemed to be enough to calm her down and let her sleep. Bingo! We asked for a beanbag, another NICU item that helped to calm Leah sometimes, but they didn’t have any in PICU and weren’t familiar with the specific item to which I was referring. So I went down to NICU and they were awesome and gave me something similar (since they didn’t have any of the ones I had in mind). We placed the weight across her legs and within minutes she was sleeping. Yay!

Today is not so great. They still haven’t been able to decrease her oxygen levels and let her breathe a bit more on her own. They tried to go a little lower yesterday and she was desatting, so they had to increase it again. I think they did the same with breaths per minute today, increasing it to give her a little bit more support. We’ll see how it goes! She has been coughing all morning (which the nurses say could actually be a good thing and mean she is getting out some of the secretions in her lungs), and also seems very tired and less alert. There was a small area in her lungs that concerned the surgeons so they are taking her downstairs to get a better x-ray than what they can do at bedside. A doctor from Infection Control came in to examine her and after his assessment he said he thinks she is feverish because her lungs are a little deflated from being intubated and then extubated and then re-intubated and then re-extubated, so she’s just having to work really hard to breathe. He doesn’t necessarily think there is an underlying infection. But they will make sure, and are also taking blood and throat cultures and starting anti-biotics just to be safe. They are also screening for calcium deficiency because she keeps having tremors in her sweet little chin. Poor little love.

Will keep you updated on the esophagram when we have more news!

BTW – the t-shirts are in! And they are ADORABLE! LOVE.

This is the little sweetheart this morning. She looks so tired.

This was yesterday. She looks pretty tired here too, but we had some nice snuggles.

BabyPie yesterday when she was a tiny bit more awake.

Look who tweeted for Leah!

Look how cute!!!!!

What a thoroughly hellish day!

The nurses/RCPs extubated around 9:50AM, this time with a more thorough plan in place for how they would support Leah through this difficult transition off the ventilator. Within two hours, the doctor was already starting to question whether she would get to the end of the day without being reintubated. At one point he essentially said he’d give her half an hour and see how it went. She got a treatment of racemic epinephrine first, and then was put on continuous albuterol for a while, but that didn’t help. The rec epi seemed to help last time and helped today, so they put her on three treatments, once each hour. The first two treatments went well, and between that and Mandy sitting Leah up, she started to calm down a bit.

The third treatment was a nightmare. Leah’s heart rate shot above 200 and she started freaking out in her silent frantic sort of way (she still can’t vocalize because of the vent – will probably be a few days). It was crazy. I’ve never seen anything like it. It was too much for her.

It took her a while to calm down but she finally did. Not long after that, Leah’s chest drainage tube fell out. Seriously? Seriously. The thing was sutured in. Not sure how it came out, but they did an x-ray to make sure there was no problem as a result, and decided not to reinsert. It was going to come out soon enough anyway.

The silver lining to the chest tube falling out is that it removed a major barrier to Mamas holding the baby, which I think is something she really needed. She and Mandy had a nice sweet time and it really calmed her down. The methadone probably helped too.

“Wait – did she just say METHADONE?”

Yeah – there’s been some speculation that on top of her labored breathing, which is the result of her tracheomalacia and its exacerbation by the breathing tube, Leah may also be agitated due to withdrawal from the many sedatives and pain killers they have been pumping into her to keep her calm throughout the surgery and intubation. The methadone will help ease her off of the other meds.

Now, pictures. Once again, don’t let her seeming alertness fool you; this is a still. What you don’t see is that she was panting and wheezing and heaving the whole day. You could see her little shoulders bobbing up and down from the effort. And then there were the horrible voiceless hacking coughs. I think this might have been the hardest day so far, aside from her day of birth. I would post video but I don’t think anyone wants to see it.

“Oh Mamas. This is not fun.”

Look at that hair! Just want to ruffle it a little more.

“MOMMY? IS IT REALLY YOU? I MISSED YOUR ARMS SO MUCH! YOU SMELL LIKE MILK!”

“Let me tell you ALLLLL about how much I missed your snuggly arms.”

“Mama – Mama, you’re getting this, right?”