Delinquent BlogMama

Sorry for the delay in updating. I’ve now received multiple emails and texts asking where the update is, and my mother-in-law and brother-in-law are ganging up on me in person to demand a new post. Uncle Ralph says lack of sleep is not an excuse. Hehehe. 🙂

Not too much going on here. BabyBug is behaving herself, the nurses are behaving themselves… Really though, they have all been awesome. It was just the one who was Mean Mean Mean. Thanks for all your supportive comments and solidarity! The outcome of that whole mess is that they put an order into the system to ensure that her tube is flushed and checked at intervals, so at minimum we know that’s happening. I think the story even got to the PICU doctor, because he made a comment about maybe moving her to Peds later on when she is more stable, and I said she needs constant attention to her suction tube (they have more patients per nurse in Peds) and he said, “I heard.” I guess word gets around when a parent throws a fit. :-/

Mommy Mandy is back to work now and her first week went well. She misses BabyBug during the day but is glad to be back. Mama Lisa is doing okay – started some new meds and they have provided a tiny bit of relief, but not enough. I have a surgery scheduled at the end of September and am hoping that will restore some normalcy to my otherwise thoroughly upside-down days. I do miss good food. Or like… solid food in general.

FYI: Leah is starting to make tiny vocal sounds. Her favorite “word” right now is a sweet little “Aye.” Hopefully we will catch it on video and share.

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Piiiiinchy cheeks!

Can it be a long week when it’s only Tuesday?

So sorry for the delinquency in posting the past couple of days. It’s been a frustrating 48 hours and I’ve mostly been too pissed off to post anything but a stream of expletives. I think I’ve repeated the story enough that I can be more calm about it. Don’t worry – baby’s alright, no thanks to her nurse the night before last (Sunday night). What follows is mostly for my own reference and therapeutic venting, but if you want to read about our frustrating night with the nurse we’ll call the Mean Man, please proceed.

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The week in photos (minus the icky uncomfy parts)

Not too much to update today so I will just bombard you with photographs from the past week or so – things have been so hectic around here that I haven’t really had time to share! Earlier in the week BabyBug had a visit from her great-great-auntie Glenda and family, and later on she was chillin’ like a villain on Uncle Ralph’s shoulder. She had a pretty good week, if you don’t count that pesky terrible horrible Wednesday in the operating room and subsequent yucky-tastic 48 hours. Thankfully, by now she is feeling a bit better, although her Mini site is still looking inflamed and they are going to start her on antibiotics (through the g-tube and not IV, yay).

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Oh hey, look!

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Staring at our favorite pink friend, affectionately known at this point as “Mr. Penis Mouse,” thanks to Aunti Staci’s brilliant and unsolicited observations. Leah doesn’t care. He makes little jingly sounds and has a twin brother who is a bunny. He is fabulous. Don’t be a hater.

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BabyBug with Mommy, Gran, and Gran’s aunt Glenda. (Picture two tiny babies about three months apart – one’s an aunt and one’s a niece!) That’s four generations in this photo!

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Great-Great Aunt Glenda must be saying something terribly interesting.

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Great-Great Uncle Roy gets the CalmBug

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Cousin Ciara, the biggest Justin Bieber fan I know

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Cousin Lisa giving some sort of valuable life lesson. I hope you’re listening, Buggy!

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Leah loves her Uncle Ralph

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Out cold on Uncle Ralph’s shoulder

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The nurse’s handy dandy trick to keep Leah from pushing and swatting at her achy g-tube site. Also makes a cute sleeveless tank in a pinch.

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Our little vampire

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Caption this, please.

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Wistful little face

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“Mooooooommmyyyyy, not in front of my friiiieeeeends!”

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“Arrrhhh?”

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“Whew. Rough week. Thank goodness for fluffy Mommy-chests that smell like milk.”

A Magical Mommy Moment

I’ll skip all of last night’s stress (more raspies and crankies and up ’til 2AM) and share a little moment that has me in complete awe of our little bug. Leah was super-raspy so I leaned her forward to pat her on the back (one of the tricks the NICU nurses taught us) and she started nomming on my wrist. So I gave her the paci since she seemed to want to suck on something. As she was sucking I saw her little hands start to open and close, so I was like, “Hmmm, I wonder what would happen…” so I got the Boppy and put her in a nursing position with the pacifier wedged between us, and she totally got calm and made some little kneads at my chest. We stayed like that for a good 15-20 minutes or so, with her nomming on the paci and staring up at me with her big baby-colored eyes. This little bug has never had a chance to breast-feed and yet even after three months she still knows what she’s supposed to do and is still calmed by going through the motions. She’s such a little miracle.

Terrible, Horrible, No Good, Very Bad Day Redux

Thank you all for your supportive and kind comments in response to last night’s post. We are facing some challenging decisions as we proceed with assessing the best options for BabyBug’s future. There is no ideal approach in this situation and not a whole lot of prior cases to rely on – her condition is very difficult and very rare (especially when you factor in the Down syndrome) so it’s not like there is anybody who has seen this exact scenario a few dozen times and knows just what to do and when to do it. We will see what comes of the doctors’ case conferencing.

Last night was not a whole lot better than the day. Because of the swelling in Leah’s throat, she was having a ton of trouble breathing all night and spent most of the wee hours of morning gasping for breath. They did a chest x-ray and the surgeons determined that she had some edema from the IV fluids so they gave her extra Lasix, and they observed that her throat was swollen from the bronchoscopy so they gave a steroid to help open up her airway. She also had a third dose of morphine. Once she was able to breathe a little more comfortably, Leah had a relatively decent day. But toward the evening she got really agitated again and when the nurse went to give her Tylenol we saw that her g-tube was red and a little bit leaky. She has also been having a lot of residuals lately (food left in her tummy at the next feed). The surgeon is going to come by and take a look. In the mean time it’s back to magical mommy tricks in turns to try to keep her calm, if not make her fall asleep. I can hear her getting very raspy. She has had trouble with the tube all day because her secretions are super thick and hard to suction. On the bright side, because her mouth has been so dry (probably why secretions are thick), she is ALL OVER the paci. She even sucked on my gloved finger on and off for like, half an hour. It probably feels good to have something in her mouth that increases the secretions. The down side is that it makes her cough more.

Can you tell it’s been a rough night? And it’s not even midnight!

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LeahBug during her “feeling better” period.

The Good, the Bad, and the “OMG that totally sucks.”

Our child had a miserable day.

Let’s get the good and bad out of the way so we can focus on the “OMG, that totally sucks.”

Good:

1) The Mic-Key to Mini transition seemed to go well and Leah is already feeding through the new tube.

2) They were able to wean Leah off the vent immediately after the procedure, so she just has the cannula in.

3) Leah is probably going to win that little photo contest. She is a star. Not gonna lie though – there are an awful lot of other beautiful babies there. She has a lot of competition.

Bad:

1) The kid had a craptastic day and it took Tylenol, morphine, Ativan and then more morphine to get her to sleep. And that took ALL DAY and every magical mommy trick in the book.

We went back and forth on this with the anesthesiologist’s team and had agreed that her last feed would be at 5AM since they were taking her at 9AM – but then they changed it up in the middle of the night because they thought they might take her at 7AM, so her last feed was at 2AM. And of course they didn’t take her until after 9, so she did not get to eat again until about 1:30 in the afternoon – nearly 12 hours later. And we know this kid does not like to be hungry. So she already had a head start on the road to Crankytown. They replaced the g-tube and it looks a lot better, but it probably doesn’t feel very good. They also did a bronchoscopy AND had her on a breathing tube. If you’ve ever had an endoscopy you know that your throat feels lousy afterward. Her throat is swollen and her breathing sounds horrible – and she has the suction tube rubbing against her irritated throat and SUCTIONING against it. Would you be able to sleep? We tried eeeeeeverything, all the magical mommy tricks, but she would drift off for a couple of minutes and then remember how uncomfy she was and get cranky again. After a while we asked for some Tylenol, but that didn’t seem to help. A little later we asked for something stronger and they gave her a baby dose of morphine. That calmed the hoarse, sad little cries, but she still wasn’t sleeping. They gave her some Ativan later in the afternoon, and even after that she didn’t fall asleep. After an appropriate time they gave her a second dose of morphine and she finally drifted off to sleep. She’s been asleep for maybe 5 hours or so and I’m hoping she will sleep through the night after such an exhausting day. I can still hear her sad little gasping from the other side of the room.

2) Leah has mild tracheomalacea – her trachea is a little bit compressed and not fully hardened, but the doc doesn’t see it as clinically significant. My understanding is that kids usually grow out of this condition.

Now, “OMG, that totally sucks”:

Leah’s gap is longer than they thought – about 6-7 vertebral bodies. That is really long. The surgeons here no longer feel confident that they can do the Foker procedure on her, and whatever they do they want to delay the repair until she is older – possibly 8-10 months or more.

We talked about some of our options today and they are conferencing on her case next week with some other doctors. I want to hold off on getting into too many technical details until they’ve actually given us a solid set of options. But suffice it to say that our near future just got a little more complicated.

Baby’s New Throne

We stayed over at the hospital last night. I woke up at 4AM but thankfully Leah was still asleep so it was just a minor interruption. Cut to about 6AM – we woke up to a SCREEEEEEAMING baby, because some meanie nurses came to steal some of her blood! How dare they! Ooooh, she was mad. I draped myself over the edge of the crib (who can stand up straight at that hour?) and petted her back to sleep. Win! Mandy got to take the next wake-up call in the 8AM hour. Another win!

We had to run a couple of errands today, so once we left the hospital in the late morning, we didn’t get back until the early/mid afternoon. WELL. As we know, Leah has impeccable timing. I headed up to the PICU while Mommy Mandy was parking the car, and I could already hear angry little yells as soon as I walked down the hall toward Leah’s room. I got to the room and stepped inside, and man, that kid was PISSED OFF. One of the med students was in there looking kind of helpless, and I washed up and scooped up our tiny tot, who promptly fell asleep. The nurse returned shortly thereafter and explained that somehow Ms. BabyBug’s Mic-Key button had fallen out. The whole issue was resolved swiftly; the surgical team re-inserted the Mic-Key and all was right in the world of otherwise-discombobulated baby bellies. Apparently the button just kind of floated out and her lunchtime feed followed it, soaking her clothes. It sounds like there wasn’t enough fluid in the balloon to keep it in place – or maybe Leah was just trying to get a head start on Wednesday’s replacement. Leah is fine, but I’m sure none of it was very comfortable, and after an ordeal like that the only proper medicine is Arms-of-Mommies. The kid practically passed out the minute I laid her onto my lap.

Leah had a lovely little nap and then visited with her Aunti Staci. We brought in a bouncy chair this afternoon, so we decided to try it out once Leah was more awake. She is so small so the harness didn’t work and she kept sliding down, so we had to roll up a blanket for her to sit on to make her tall enough to be buckled in. Yes – she needed a booster-seat to sit in the bouncy seat! But once we had her settled in, she loved it! She didn’t know what to do with herself so she crossed her eyes a bunch of times and looked around frantically, trying to take it all in. We noticed that she seemed to fixate on the pink mousie toy (thanks a bunch for pointing out its inappropriate shape, Aunti Staci). She’s looking at it in almost all of the pictures. I thought maybe it was because it was a brighter color than the other toys, but as I was posting the pictures tonight I realized that she may have recognized Mr. Mousie from her mobile; that’s where he used to live. That would be pretty impressive!

Later in the evening, Uncle Ralph came to visit and he and Bug had a nice time snuggling while Mommy Mandy took a nap in preparation for another sleepover. It’s just Mommy and BabyBug tonight; Mama Lisa is back at RMH so she can get a good night’s sleep. Well… there’s still time.


Oh hey look – a video! Mama Lisa and Aunti Staci introduce Empress Baby to her new throne.

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In one of our childhood home videos, I’m performing a song for the camera but somehow the lens drifts off of me and focuses on my toddler sister, who is mimicking and mocking me in the background. With that in mind, I would like to thank my child for upstaging her Aunti Staci in this photo.

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“You don’t say?”

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“Whoa! A bouncy chair? For reals?”

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“Toys and bouncing at the same time! Who knew it was possible?”

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“Hello again, Mr. Mousie!”

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Family portraits

This post will kill you with cute.

This was a weekend full of visitors! Yesterday, Leah visited with her Gran in the morning, and then later in the afternoon, she had some very special guests: Great-Grandma Marilyn, Great-Great-Aunt Joan, and cousins Allison and Charlie, who live alllll the way on the other side of the country! It was very exciting and Leah is glad she got to see everybody! Today, my cousins Kim and Natalie came to visit BabyBug earlier in the day, and then our friends Jessica and Toni came a little later. Then in the evening Aunti Staci and Grandma Barbie came for a visit – and they brought frozen yogurt for Mandy, so I’m pretty sure they’re Mandy’s new best friends. The light in the PICU room is awesome for pictures (except when it’s so awesome that it washes out people’s faces) so hopefully I’ll be posting more pictures now! Enjoy!

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BabyBug with Mandy and her mama in a three-generation photo.

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Cute Bug

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“Oh hai, Gran!”

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“YAWN.”

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Mama and Tiny

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Pretty girl!

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My absolute favorite photo of the day.

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How did we wind up with such a ridiculously cute little Bug? Her Mommy is pretty cute too.

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Sometimes we make scrunchy faces in our pretty pink dress. Sometimes we are sweet and precious (not that scrunchy-face isn’t also precious…).

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And sometimes we just stick out our tongues.

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Great-Grandma Marilyn snuggling with Leah for the first time

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More snuggles

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If Great-Grandma wants to steal Bug’s feet she’s gonna have to fight Mama for them! Mama called dibs on toes!

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Sweet hands

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I <3 my Grandma!

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GG Aunt Joan says she’s not a picture-taker but I think she did just fine!

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A couple of great-grands, both ma and auntie.

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Cousin Allison!

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More Cousin Allison!

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Cousin Allison with a sleeping tiny tot!

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Cousin Charlie, who has never seen “Charlie the Unicorn”!

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“Um, I don’t know about this, Mommy!”

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Sweet faces

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My beautiful girls

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Cousins Kim and Natalie, who held me when I was this small!

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The view from BabyBug’s window

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Quality time with Mama

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Leah was so happy to see her friends Jess and Toni!

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Aunti Staci and her Mini-Me

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Sweet Sleepy-Pie

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This face!