Yikes

Wow – this might be a record for length between posts! I have been working on a photo post and trying to find time to write about Leah’s birthday and how the rest of her month has gone. I will do that some time this week, but in the mean time let me just say that this month has been a challenge. We had a terrible heat wave, and since Leah doesn’t regulate her body temperature well and we don’t have a very good cooling system, the days were long and difficult, with lots of tears and fussies and fevers. And vomit. So. Much. Vomit. This poor child has been throwing up almost daily for weeks now. We think the problem is that she is swallowing so much air for a variety of reasons (including hunger noms, tastes, teething noms, and just generally being a baby). Since she doesn’t burp well and has reflux, the air tries to come out in the form of retching, and since she frequently has food in her stomach due to slow feeds, she winds up throwing up as well. I have been trying to speed up her feeds to her pre-stricture rate, and that has helped a little bit. If I can get to her in time to vent her stomach via the g-tube, that can often keep her from vomiting, or at least from throwing up too many times, if I don’t make it in time. Still, it has been a big problem.

We have also had a challenging month because Mama got sick and then baby got sick (I keep telling myself we must have caught it from the same person because I would feel so bad if she got sick because of me). She really didn’t have that difficult a time of having a little cold, but we took her in for a chest x-ray for another reason (discussed below) and were informed that she has pneumonia – and it looks like community-acquired pneumonia and not aspiration pneumonia. So now we know: even a tiny, not-too-terrible cold can lead to pneumonia for our sweet bug. All the more reason to be extra cautious with germies. She is on antibiotics for ten days to fight the infection and we hope hope hope it doesn’t escalate.

Aaaand that leads me to my final reason for this month’s difficulties: we have a horrible sneaking suspicion that Leah may be having a recurrence of her diaphragmatic hernia. I hope we are wrong, but she has been straining a lot, has been having very few dirty diapers, and – most disturbingly – is experiencing a return of her bowel gurgling, a symptom we only ever observed when she had her hernia. The problem is not so much that her bowel is gurgling and rumbling; I understand that sometimes babies’ bellies can make noise (but every day? All day?). The problem is that if I put a finger on her chest – above armpit level – I can feel the gurgling under my finger. I’m no doctor, but that doesn’t seem right. We took her to her 12-month check-up last week and they ordered an x-ray, but of course that was the one day last week that she was not experiencing gurgles. Things can shift around with a hernia, and I suppose it is possible that it didn’t show up on the x-ray for that reason. (As noted above, what did show up on the x-ray was the pneumonia). And again, of course we could be completely wrong about this – but I can’t think of any other reasons why we would be hearing bowel-like rumbling coming from high in her chest. No good reasons, anyway. No reasons that wouldn’t give me a panic attack. So until someone proves me wrong, I’m going with the hernia theory. We see her GI doctor tomorrow (we were supposed to see him last week as well but he was sick). News as it comes.

Catching up (again)

I wrote this last week, intending to finish up the photoblast by the end of the week, but as you know, some stuff happened and I didn’t have time. So I’m posting the belated update on Leah’s ABR as well as pictures to begin catching up to the present.

Here we go:

Leah had her auditory brainstem response test last Tuesday morning, so we had a little visit with LeahBug’s pals in PICU. We got to see a lot of Leah’s nurses, as well as the very sweet guy who delivered the hospital breakfasts and lunches to the PICU and Peds rooms. Even the folks who maintain the rooms remember LeahBug – she makes friends everywhere she goes! There were some nursing students there as well, and their professor thought Leah was just precious.

By coincidence, PICU put us in the room that was vacated last Monday by one of Leah’s little friends. Both babies (Leah and her buddy) were in NICU and PICU together, and the other little girl transferred to a different type of facility on Monday so she can try to transition back home after her recent return to PICU.

The test Leah had Tuesday was meant to determine whether she has genuine hearing loss or whether her failure to respond to some auditory stimuli is a matter of learning to tune stuff out after nearly 7 months in the ICU with alarms constantly going off. The test is done while the baby is unconscious, which can either be via sleep or sedation. Since Leah was wide awake, they proceeded to place an IV, and it took them three attempts and four nurses and a student, including the charge nurse and a NICU nurse. That’s our tiny-veined Bug! She screamed so hard from the whole ordeal that she wore herself out – and they wound up beginning the test without sedation because she was fast asleep. How’s that for irony? In any event, she started to stir, so they did have to go ahead and give her the drugs so they could finish the test.

The results haven’t yet been read and interpreted by Leah’s ENT, so we don’t know for sure what this will mean for Leah, but the tests showed that Leah’s hearing was largely normal, except that 1) her right ear is more firmly in the normal range than her left ear; 2) she does have some left-side “mild high-frequency loss at 4kHz only.” Additionally, the DPOAE test was successful in her right ear but not her left, which can sometimes indicate a hearing problem, but in Leah’s case it probably just reiterates what we already know: Leah’s left ear canal is particularly small and possibly oddly-shaped and that can interfere with physical examinations.

Here are some pictures from last month – I have more to share but this will have to do for now.

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This goes in my “Babymoticons” folder under, “Really? Really?”

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Um… I think this one does, too.

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We are liking our high chair lately!

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We’re trying to stay neutral in the great baseball team debate (because Grandma likes the Red Sox and Grandpa likes the Dodgers) but Leah seems to be expressing her own opinion. I guess we’ll need to get her a Red Sox jumper so we can determine whether she prefers the Red Sox or just dislikes baseball entirely. Personally, I prefer figure skating. I’m just saying.

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Just a little flashback to the first time Leah wore this jumper…

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She’s calmed down a little bit, at least.

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Goofy baby

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Baby toes are the best toes, but Mama knuckles are the best knuckles.

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Mama fingers aren’t so bad either.

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But babytoes are still the best.

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Somebody loves her Mommy very, very much.

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Hint: It’s a SILLY somebody.

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Forehead kisses!

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“ACK. MOMMY!”

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“ERM, Mermy, yer squershing mer ferce.”

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SuperBug contemplates her next move.

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Aaaand it’s her unbeatable SMILE-leg-kick combo!!

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“Cellophane, Baby Cellophane…”

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That’s a lot of effort for one tiny baby face.

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But it paid off!!

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We are just like our Aunti Staci – NO SOCKS FOR FEETS!

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Bendy Baby does leg lifts.

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NOM.

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We might have the sweetest baby on the planet.

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No socks for feets. Socks for mouths.

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As I said… sweetest baby on the planet.

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We love our veggies, even if we only get to nom on them.

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Watermelon is pretty awesome too.

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Dainty baby

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Goofy baby – again.

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Pleased-as-punch Baby

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Couldn’t think of anything to put on her face for Passover so she got frogs. ‘Cause they were in Pharaoh’s bed… and on his head…

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Bendy baby doesn’t need no steenkin’ diaper.

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Our first Pesach! Seder at Auntie Kimmy’s.

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Definitely BFFs right here.

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“Mama, what’s Dayenu?”

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Let’s get this meal started already!

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Our little family!

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Sweet froggy cheeks

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Valley girl selfies.

Here we are again!

Leah had her dilation Thursday morning, and we were back at home by the early afternoon. It was very hot at home and Leah was pretty cranky – and before we knew it she had worked herself up to a fever of 101.6. At its highest it was 101.9, but somewhere in the mid-100’s I started trying cooling measures. When after 45-60 minutes her fever had not decreased, I gave her Tylenol and called the Peds clinic as instructed on Leah’s discharge papers. The advice nurse told me to take Leah to see a doctor locally just so she could be examined, but a few minutes later she called me back and told me she had paged the doctor who did Leah’s dilation and he wanted her back at the hospital to be admitted for overnight observation. The fever could be from the heat or maybe from the anesthesia, but it could also be from an infection arising from an esophageal perforation.

Once she was admitted to the hospital, they did a chest x-ray (which looks fine) and a blood culture. Today they did a viral swab and urine culture as well, to rule out regular baby stuff. Initially it had sounded like they were only going to keep her overnight for observation, but ultimately the doctor decided he wanted to keep her for the full 48-hour blood culture, which means we will likely be here until Sunday morning. As the doctor put it, the risk of a perforation / infection occurring is very low, but the risk to Leah’s health if it does occur is very very high, so although it will likely turn out to be nothing, it’s better to err on the side of caution.

On the bright side, Leah had a visit today from her great-grandpa as well as her great-uncle and great-aunt, who live on the east coast and met her for the first time today. We were supposed to have dinner with them tonight but Leah had her own plans, so it turned into a hospital visit instead.

Speaking of Leah’s having her own plans… our tiny bug is turning a year old in less than a week!! How did that happen????

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Baby jail again, Mamas?

More photos coming soon. It takes time to sort and upload them, and those captions don’t write themselves, ya know. Well, some of them do…