Category Archives: Photos & Videos

An update for you, finally!

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We had a nice surprise this morning when we walked into the NICU: instead of a rockstar glow worm, we had a baby burrito! That’s right! BabyBug is off her bili lights, and is very happy to be swaddled again. Here’s hoping it stays that way!

Leah is now 3 lbs 11.8 oz. If she was on Weight Watchers I guess they would call this a plateau, except in the other direction! They are going to increase the supplement by another 2 calories per ounce, for a total of 24 calories (regular breast milk has about 20 calories per ounce).

The doctors have told us they plan to wait to do the contrast study until she reaches full term, which is in about 1.5 months. At that point they will have a better idea as to how long the gap is between the esophagus and the stomach. Apparently the gap can also narrow a little bit once she reaches full size, so it would not be as useful to do the study now when the length could change.

The nurses encourage parents to read aloud to their preemies to help calm them, so we have started reading “Alice’s Adventures in Wonderland” to Leah. Somehow it seems appropriate. She seems to enjoy it so far. Perhaps she is dreaming of white rabbits and painted roses.

In case you are wondering how the Mamas are doing… Mama Mandy is finally able to rest on her side a little bit. She is super-tired, but healing slowly but surely! Mama Lisa is way too excited that she is able to eat saltines and broth-based vegetable soups. The broth and juice and Ensure were getting really boring!

Here are some new pictures for you. I had a memory card I couldn’t access until today, so some of the pictures are from a few days ago.

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Baby’s uniform for today.

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Baby Burrito

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SmileyBug

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Tiny tongue

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Smiling Burrito

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Calm down, babygirl!

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Mama Mandy Kangaroo – May 18

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Beautiful BabyBug – May 18

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Talk to the hand – May 18

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Baby’s favorite position: face down on Mama’s chest – May 18

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Mama Mandy Kangaroo – May 18

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Sweet babygirl – May 18

Photo blast!

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Okay, so I fell behind a little bit on pictures. Therefore, I have prepared for you a feast of photos. Enjoy!

May 17

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Baby straightjacket, a.k.a. Anti-squirm half-swaddle to keep baby comfy and not pulling on All the Stringy Things.

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Grandpa Bill

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More Grandpa Bill

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Grandpa Bill and BabyBug holding hands

May 18

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“Golly gosh, Mamas! I’m feeling awfully cute today!”

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BabyBug with open eyes

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Examining her fingernails, or preparing to sing a Supremes song?

May 19

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Uncle Ralph!

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Uncle Ralph being silly

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Baby’s uniform for today

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Smiley baby

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A rare glimpse of tubeless-babyface; they took it out for a minute to clean it out and suction her mouth

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More babyface sans tube

May 20

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“Tada! I’m cute!”

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Baby Rockstar

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More smiley baby

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Mama Lisa and LeahBug

Long day for BabyBug!

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We had a lot of visitors today!

Leah is still at 3 lbs, 4oz. She’s now getting 5mL (just over a teaspoon) of breast milk per hour through her g-tube. She had a little bit of trouble remembering to breathe today; she had a bunch of bradycardia episodes throughout the day. The good news is that she is often able to self-correct before anybody has to nudge her awake. But still… I’d feel better if she would remember to breathe.

Leah’s biggest news today is that she met her great-grandpa! Second biggest news is that Mama Lisa finally worked up the nerve to change a diaper. Eeek. Thankfully it was just a wet diaper.

After Mandy and I visited a bit with Leah, we brought Great-Grandpa Mannie in for a visit. She did her usual squirmy song-and-dance routine, but wouldn’t open her eyes, no matter how many times Grandpa Mannie asked her to. Apparently she doesn’t take requests!

After Great-Grandpa left, Grandma Barbie (hahaha) came in to visit, and wouldn’t you know, THAT’S when she opened the little peepers! Grandma B and Leah had a nice little visit, and then it was Auntie Staci’s turn. Later on, Faith and Matt came to visit, and then they drove us back to Ronald McDonald House, where we started about the very exciting task of cooking and doing laundry. Fuuuun. It’s nice to have a little bit of normalcy, though. Laundry is normal. We do laundry. Laundry is something we do. (It’s a clothes process. A process we do to the clothes. Sorry – Buffy thing. I couldn’t resist.)

BabyBug was a giant ham after kangaroo time today. Behold:

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And here are some more pics for you!

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10 days old meets 93 years and 11.5 months

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I guess this is the baby equivalent of *headdesk*

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Sweet precious innocent BabyBug

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BabyBug with attitude

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Toesies

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The whole family!

Cute Overload

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Well, we had a nice eventful day, in terms of cute.

Technical stuff first: Baby is now up to 3mL of breast milk per hour, on a continuous basis. Good girl! We held her again today, and she only had one bradycardia episode during that time. She had a few this morning and I think she had one again this afternoon. That’s the thing where she forgets to breathe and then her heart rate drops. Today she had a lot of irregular breathing; she would pant for a bit so her breathing rate would go way up and then it would come back down. But eventually she mellowed out.

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Daily fingers

While I held Leah, she drummed her fingers on my chest and nommed on the suction tube, making little slurpy/kissy Audrey II sounds in the process. No video, unfortunately. After I held Leah, it was Mama Mandy’s turn. Leah decided she had enough of the outside world for one afternoon and buried herself face down square in the center of Mandy’s chest. It was ridiculous. I wish I could show you the picture, but it’s a little breasty.

When it was time for Leah to go back into the isolette, she had to get her little mouth suctioned, as she does every so often, since the suction tube doesn’t get it all.

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“PPHHHHTTTHHH! GET THIS THING OUTTA MY MOUTH!”

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“Oh wait. Maybe that’s not so bad after all.”

As you can see, once she was back in the isolette we got a fabulous treat – eyeballs!!! And that’s pretty much all you see here! She’s like a Joss Whedon power character (like Mean Willow or something), all eyeballs. You can see in the video I posted earlier that she actually kept her eyes open long enough to take in all the giant blobs surrounding her. Hopefully she recognized the Mama Blobs.

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After a while, Leah let out a few pitiful little cries (she’s working on that voice!) and we decided to practice a little bit with the pacifier. It seemed to calm her down!

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And just in case you’re really planning to hold me to this daily fingerses and toeses thing…
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Here you go.

And courtesy of my sister, some excellent screenshots from the video. It kind of goes along with her last ultrasound, doesn’t it? I love that scrunchyface.

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Surprise!

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Oh boy, have we got a treat for you! We have pokey-tongue, we have scrunchy face, i.e. “I wanna cry but it’s too much work,” we have waggly feet, and Leah threw in an extra detail you’ll just have watch to see.

Long day!

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What a long day! We had our intake session with the Ronald McDonald House family services intern today, so we didn’t even get over to the hospital until the afternoon. When we arrived, Little Miss Sunshine was free of her tanning booth. They have moved her to a six-hour schedule with the bili light, which means she gets six hours without Mr. Horrible Awful Mask and six hours with him. So we got a glorious several hours of mask-free baby deliciousness. She did not disappoint. Leah is so expressive. We got all sorts of funny faces today – some yawns, some scrunchy faces, some tongues sticking out, and even a few little eyeballs with an accompanying smile. I wish I had time to capture that last one on the camera. Precious!

We had some more Mama Kangaroo time this afternoon – and this time Mandy and I each held her for a little bit longer. She would not get comfy on my chest, so we put her with her back facing me, which seemed to calm her down.

Auntie Staci came to visit tonight, and while we were in the room visiting with her, we gave Leah a pacifier and she nommed on it for a little while until she got too calm and went all bradycardia on us. She’s been doing that all day, even when we’re not holding her. As we said goodbye to her for the evening I called out (quietly), “Nite nite LeahBug! Don’t forget to breathe!”

I’ve been getting super-batty from lack of sleep so it’s a short post tonight. I’ll overload you with cute instead.

p.s. We are running out of verbs and adjectives and other parts of speech to adequately express how blown away we are by your awesomeness and generosity. Us: grateful… floored… staggered… amazed… stunned… You: awesome… wonderful… supportive… generous… community. Thank you.

And now for some pictures.

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Baby’s getup today

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Big yawn

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Sleepy baby

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Toeses

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Fingerses

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Spirit fingerses

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Vogue…

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More fingerses

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Eeeennhhhh, Mamaaaas, get this tube outta meeee!

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Silly baby. This is not what I meant when I said she sticks her tiny tongue out around the tube. This is more like, “NYAH NYAH, I’M CUTER THAN YOU!”

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E.T. Phone Home

An update and 2,160 thank yous

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Let me just say that it’s only been a few hours since our good friend Faith launched our GoFundMe page, and already we are totally floored by your generosity. When Mandy came back from pumping I told her the total raised so far and she got tears in her eyes. You are all amazing and we thank you SO MUCH, both for your generous donations and your kind words of support and encouragement. Leah has some fabulous cheerleaders in all of you.

As we mentioned before, Leah got her first feeding of breast milk today! They will increase the “serving size” gradually over the coming days and weeks until she is at full feeding through the g-tube. Until then, she will receive supplemental nutrients through her PICC line, which was placed last night. The poor little bug has little puncture marks all over her hands and feet, so hopefully with the PICC line placed, she won’t get poked and prodded in quite so many places.

I got to hold Leah again today! Yesterday I relinquished my “turn” at kangaroo time because Leah’s heart rate kept falling while Mandy was holding her and we wanted to get her back to bed. Today we talked to the doctor and she said it’s still okay for us to hold her even if that happens – we should just limit the skin-on-skin time to a certain amount of time until she gets a little better about remembering to breathe. We are holding her hand a lot instead. But today I got my turn. She looked so cozy! It reminds me of that first ultrasound where she had her hand up by her mouth. She’s going to be a thumb-sucker for sure!! We had to wake her up four times while I was holding her, so I only held her for a little while, but it was an awesome little while! She is so precious, and so TINY. She’s still working on her cry, so she makes these little crackly noises that sound like Gollum. “My preeeeshus, my preeeeshus maaaaamas.” We have heard a couple of little squeals out of her. Mostly she scrunches up her face like she’s going to cry but then changes her mind. OH – and check out her little folded ears! I can’t wait ’til her bilirubin levels are normal so they can take that mask off for good. She HATES it and keeps pulling it down, bending her malleable little ears in the process.

Here are some more pictures for your enjoyment:

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This is babybug’s uniform today. She’s ditched a few tubes and cords but it’s still so much. She really dislikes the tube that goes into her esophagus, except when she decides it’s convenient to have a chew-toy right there in-mouth for her enjoyment. Sometimes she sticks her little tongue out around it and it’s quite possibly the cutest thing in the world.

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Could you not just stare at this little face forever?

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Tomorrow’s toeses today, in case I forget.

One more pic

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Hopefully I’ll have time to post some more photos tomorrow, but I couldn’t resist this one – we have a Glo Worm in the family!

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Leah has been under “bili lights” for a few days now, and for a while they had this glowy blanket under her as well. Because of the bright light over the isolette, they keep her eyes covered with an eye shade that looks like little sunglasses. I think I posted a picture earlier. Her bilirubin levels had been rising, which is why she has been a little rock star for so many days now. It was so adorable at first (I think they should make some eye shades with cucumber slices printed on them), but by now we are just impatient to see her teeny tiny eyes! She’s getting pretty impatient too – today she tried so hard to pull off her mask that it folded her ears in half – I had to peel them open and back into position! What a silly bug. The nurses finally gave up and fitted a different kind of mask on her.

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Her levels were coming back down as of this afternoon, so we’re hoping we’ll be able to start seeing her whole face more frequently.

Leah and I had a really sweet moment this afternoon, though, while they were giving her a break from the eye shade. I started humming “Tum Balalaika” to her, and she opened *both* eyes and looked up at me. I swear I almost cried. And I’m not really a crier.