Please share on Twitter too!

Hi folks, it’s your friendly Faith here.  I’m helping Mandy and Lisa with all things digital for the GoFundMe campaign.  One of my friends and former employers, Sarah Ferguson, the Duchess of York tweeted today about Baby Leah to her 60,000+ followers!

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It would be great if you could re-tweet this tweet to your friends too.  Click here to re-tweet the Duchess’ tweet now. If you’re logged into twitter, clicking the link will allow you to re-tweet automatically.  If not, you will be prompted to login to twitter.  I’ll be taking to twitter in the next few days to make more folks aware of the GoFundMe fundraiser.  Add me if you like to twitter to participate in our campaign, my username is thefayth.  If you know anyone on Twitter with more than a thousand followers please tweet messages about Leah too.  Sample messages could be just like the Duchess’ or you can make your own, be sure to point them to this link: http://www.gofundme.com/Leahandhermoms

YAY all for the great positive energy, prayers, well-wishes and wonderful thoughts for Baby Leah!

Another long day!

So, in RM House’s defense, they provided us with a $25 gift card to the grocery store without our even asking to be compensated for the mistake. And to be honest, I’m not sure we would have asked. But it’s nice not to have had to consider it. Mandy’s mama went and picked up some of the groceries that most needed replacing, and her brother is going to be my knight in shining garlic. All is once again calm on the food front – except for the memo that went under everybody’s doors this afternoon reminding people that taking food from other people’s bins is grounds for termination. Dude. Stealing from people with sick kids? That’s just not cool – even for people with their own sick kids.

The BabyBug had a rough day today. We arrived and her bilirubin levels have gone down so she is now just on the glow worm blanket, with no spotlight. She is at 3 lbs 13 oz. Any day now she will break 4 lbs!! As of today she is officially at continuous full feed. Good Bug! She’s not doing as well at her breathing. She had a bigger suction tube put in at some point last night or this morning because the little one wasn’t wide enough to suction efficiently. This new one makes all sorts of crazy howling, whistling, slurping sounds as it suctions, which is scary for us and probably not so pleasant for Leah either.

I held Leah for kangaroo time today, and she was fine for about half an hour or 40 minutes and then her heart rate and breathing rate started to go down, and then her oxygen saturation started to fall. It went all the way into the 40’s – the poor bug was turning bluish and mottled in my arms. It was SO SCARY. The nurse wound up putting an oxygen mask over her face to get her levels back up, and then suctioned out her mouth and nose and flushed the suction tube to make sure it wasn’t clogged. Mostly, she said Leah seemed like she was holding her breath. Poor baby is having such a problem remembering to breathe! She may have to have the cannula on again for a little while.

I think for the next few days or maybe week, we’re going to impose a Mamas-only rule on touching LeahBug. We want to see how she does without the extra interruptions and stimulation and opening and closing of doors while she’s trying to regulate her sleep cycles. So don’t take it personally if we don’t let you touch the little fingerses and toeses if you come to visit!

Oy vey, one of those days

It’s funny how even when your entire life is turned upside down by the unexpected, you can still get totally pissed off and frustrated with things that really don’t make much of a difference in the grand scheme of things. I guess people going through big things can still get upset over little things.

To ease your mind, LeahBug is basically where she was yesterday, except with added glow worm blanket, and she spent most of today squirming around her isolette because she is most comfy when swaddled, and she can’t be swaddled because of the bili lights. She’s now 3 lbs 11 oz. Go Leah, go! They want to add some powdered formula to her breast milk to help her grow faster, just until she reaches term. We’re not thrilled about it, but at least it’s temporary – and she needs to grow!

So. We had a nice visit from friends earlier today, and then from sister and cousins this evening. Sister drove us home, and we went into the kitchen to put stuff away. I went to put something in our pantry cubby… only to find it empty! “Uh, what happened to our food?” The front desk worker happened to be in the kitchen at the time, and informed us that all of our food had been put in the “Help Yourself” area. Um… what?

When we arrived here, there was already food in the cubby that corresponded with our room number, so we were told to put our food in the next cupboard over because that room was vacant. Well, as of today the room isn’t vacant anymore. And instead of setting aside our stuffed-full cubby of food for maybe 12 hours just to see if anybody claimed it, they just gave it all away. Thankfully we were able to retrieve a small number of items that had not yet been claimed, but for the most part our pantry cubby has been emptied out. The lady who emptied the cupboard was nice enough to go hunting in the trash for my bottle of lactase enzymes, which would take days to replace and had been discarded, so that was good. And as I am more than a little bit of a hoarder, we still have some extra stuff in the room. It just sucks because I JUST went shopping, and I have no idea when I’ll be able to go again. It’s not like there’s a Trader Joe’s down the street here. Plus Mandy needs food throughout the day because she is pumping breast milk, which uses up extra calories… and my giant Costco container of garlic powder (which I use in everything I can eat/drink right now to ward off colds) is living in somebody else’s cupboard. Ah well. I hope they make good use of it.

It’ll be fine. In the grand scheme of things it really doesn’t matter much. It could have been handled differently, but it was an honest mistake on their part – and it was nothing we can’t replace without a little effort, and at least I got my pills back. And at least it wasn’t our refrigerated food, which would have been way more expensive to replace. Maybe in a few weeks we’ll laugh about this. But right now it just sucks.

Photo blast!

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

Three steps forward, two steps back

BabyBug is a rockstar again today. Her bilirubin levels went up again between yesterday and today so once again she’s a superstar with her little sunglasses. She’s being a little bit more cooperative with the eye shade this time around. We’ll see if that keeps up!

Leah is also still forgetting to breathe occasionally. She had a bad episode while I was in there and had to have her mouth suctioned again, which makes three times in 24 hours. Hopefully as she gets bigger and stronger this will happen less often, but in the mean time I’m glad she’s being monitored so closely!

The good news for today is twofold: 1) Leah’s food is being increased once every 12 hours now instead of every 24 hours; and 2) We’re at 3 lbs 10 oz now! Good BabyBug!

Calm day

Mamas are both exhausted tonight, so it’s a short update!

LeahBug had a relatively calm day today. Mandy stayed with her for most of the day while I went back to the house to take care of some things and retrieve a pile of squash and berries from the garden/farm. Later on, I came back and we had our kangaroo time. Leah also had visits from her Uncle Ralph and Grandma Sharon today.

Leah’s day was mostly about sleep today. She had her nasal cannula in overnight last night to help her remember to breathe, but it was out by this morning, though she still had a few episodes throughout the day. She slept when we visited, she slept when she held her – apparently she even slept through a couple of diaper changes. But she did gain a few ounces! This morning she weighed in at 3 lbs 7 oz! Good girl!

Long day for BabyBug!

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!

Update now, pictures later

Guess who is free of her bili lights? No more tanning booth! At least for the time being, Leah is no longer under the bili lights, which means no more Mr. Horrible Awful Mask. She seems to enjoy her new-found freedom.

Today we got our longest stretch of kangaroo time to date, and LeahBug didn’t forget to breathe once. She has had a few episodes today, but not while we were holding her! She is now up to 4mL of milk (less than a teaspoon) per hour on continuous feed [through her g-tube]. They’ll keep increasing it gradually, and eventually will transition to feeding in intervals.

Also… sooooomebody kicked her little vial of milk out of its stand with her tiny tiny feet and spilled it all over her little blanket. Sooooomebody did. I’ll leave it at that.

Cute Overload

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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