Saturday Night is Alright for Fighting… but Saturday Morning is for SPITBALLS.

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.

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ME TOO.

Time for bed.

Mama spoke too soon!

Well, the good news is that baby’s breath smells like milk. The bad news is that now that she’s connected, reflux can make her gag and choke and just generally be very, very uncomfortable. That’s what seems to be happening right now – out of nowhere she just started freaking out and looking very distraught and confused about what to do with herself. I think she’s trying to spit up and doesn’t know how. The respiratory therapist thought maybe she had gotten some condensation into her cannula, but Mama knows what nausea looks like! Every time we lay her down, she starts panicking again and sounding like her throat is closing. They are going to give her some Zofran. In the mean time she is on Mandy’s shoulder, and the look on her face suggests she’d be happy to stay there until morning. Mommyshoulder FTW!

By the way, Leah received a lovely package from Amazon with some items from her wishlist – but there was no note inside, so we don’t know who it was from! So thank you, whoever you are! If you want to, please let us know so we can thank you directly!

Friday I’m In Love

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. 🙂

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“Hi Baby!” “HI MAMA!”

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“Hi camera!” “HI MAMA!”

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“Oh, THAT camera!”

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Clearly one of us did not say cheeeeese.

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Hippie Baby

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“I’M WIIIDE AWAAAAKE”

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Nummy delicious Mommyshoulder and Babycheek.

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Hello Gran!

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We love our fluffy bear-lovie.

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“What, what’s that over my head?”

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“OMIGOSH, MY MOBILE FRIENDS!!!!”

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“Let’s talk, Gran!”

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“MMMOooooommmyshoooooulderrrrr”

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

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“Well, hello there, my winged friend!”

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It’s exhausting being so cute.

Wednesday’s Child

YES! There is a Wednesday song. And the Bug is pretty woeful today. But hopefully things will start to get better soon!

Leah had her esophagram this afternoon. They wound up not doing a second chest x-ray since they could see some of what they needed to see via the esophagram. There is no evidence of leakage from the surgical site, though there does seem to be a little bit of stricture (which is to be expected from what I’ve read). The dye easily passed into the stomach, though, so hopefully that doesn’t mean a dilation is in Leah’s near future. On the bright side, I learned today that dilations are done non-surgically (more like an endoscopy), so that’s a big relief.

The verdict is still out on whether or not Leah has pneumonia. The surgeons were concerned about a section on her x-ray that looked like it could be the beginning of pneumonia, whereas the doctor from Infection Control thought her symptoms were more about recovering from the extubation and deflation in her lungs. The PICU doctors are more concerned about the potential for an infection in her central line or her surgical site. The bottom line is that they took the blood and sputum cultures and she is receiving antibiotics while they wait for the results, which take at least 48 hours. She’s also getting CPT, a therapy she hasn’t gotten since NICU – officially. Basically they tap her back with cupped hands or a little device they use, on either side of her spine, to loosen secretions in the lungs so she can cough them out. It also helped loosen the secretions she had with the repogle, so we’ve kept it up ourselves and she LOVES IT. Puts her right to sleep. So the respiratory therapist let Mandy help with the CPT this evening – which in this case means that Mandy held her while the RT did the therapy. So…. BabyPie got a taste of Mommyshoulder tonight. She was SO HAPPY.

And finally… tonight they began BabyBug on 5cc of breast milk each hour, continuously through the g-tube. Back to the start!

Is there a song title for Wednesday?

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.

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

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

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BabyPie yesterday when she was a tiny bit more awake.

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Look who tweeted for Leah!

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Look how cute!!!!!

Just Another Manic Monday, Part II

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.

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“Oh Mamas. This is not fun.”

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

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

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

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

Just Another Manic Monday

Leah is off the ventilator again. The first two hours were absolute HELL – she was having so much trouble breathing and was working soooo hard. At this point she is still coughing a lot and working very hard to breathe (even her little shoulders are heaving from the effort), but she is a lot more calm than she was earlier, and the stridor isn’t as bad now that they have given her some racemic epinephrine and also since Mandy sat her up. But she just started coughing again and seems to be having more trouble. ARGH.

This is going to be another very, very long day.

Weekend Update

So last night I updated BabyBug’s Facebook post and forgot to copy it here. Here’s what I wrote last night at around 7:30 or 8PM: “Leah just clocked in at 102.7 degrees. She responded pretty quickly to a cool cloth and no blankets and is down to 100.3, but still want to know why she has a fever at all. She was awake several times today, although she is still Stoned Baby.”

She had no fever all day today but when the night nurse took her temp it was over 102 degrees again, although on the more open arm it was a little over 100 degrees. She was bundled again so that’s probably what’s causing the fevers. Keeping an eye on it.

The docs have been decreasing Leah’s sedatives and painkillers today to prepare her for extubation tomorrow (fingers crossed!!!!) and since Leah is more aware she has been gagging a bit – also she has a lot of thick secretions and I’m sure that doesn’t help. Poor sweetheart.

Esophagram did not happen on Friday, by the way. It was rescheduled for tomorrow on account of the re-intubation. We’ll see how it goes!

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BabyPie getting cooled down yesterday after her KIIS FM fever.

Friday update! (Oops – skipped Thursday!)

Today is Leah’s 6-month birthday!

Not a lot to update but I feel like we should write something before certain beloved family members who shall not be named start texting and emailing to ask where their blog update is. 🙂 <3

Leah is still on the vent, as you know. We had a really rough day/night on Wednesday, and the nurses/docs woke me up three times during the night, twice to clear the room for chest x-rays and once to let me know that they were re-intubating. I’m told I was so knocked out that I fell asleep as soon as I confirmed that I understood what they were doing and then slept through the entire intubation, which did not happen in the OR as I had assumed when they told me the anesthesiologist was doing it – he (or she?) came up here. It was a long night. Thankfully she has been a lot more comfortable these past few days, and today has even been awake a bit, albeit stoned and groggy and moderately pissed off whenever somebody lifts her up for a second. For a little while she was even sucking on the breathing tube and trying to taste the plastic bridge holding it in place. That’s our Bug! We are hoping they will be able to extubate early next week, but after seeing what Leah went through last time we want to make sure it happens when she is ready!!!

We had another little bit of excitement last night and this morning when we had to move rooms briefly so that the facilities people could repair a massive crack in our window. We noticed and reported it a few weeks ago, but it’s gradually been growing and has gained maybe 6 inches just in the past week or week and a half. Don’t ask me how a crack showed up in an upper-story window. It’s not like there are kids in the street playing baseball. I guess maybe with all the construction going on, the vibrations could be causing cracks. Apparently there have been others recently as well. So we switched to the room next door and had to take EVERYTHING down as if we were leaving. That was a weird experience. Everything was totally backwards in the other room. I was so turned around and am so relieved to be back in the room we’re used to. I know it’s a little thing but sometimes the little things matter!!!

Pictures:

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Sleeping Beauty

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There’s a lot going on here!

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“‘sup, Mamas?”

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More Sleeping Beauty