Category Archives: Recaps

Oy vey, one of those days

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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.

Calm day

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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!

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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!

Update now, pictures later

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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

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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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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!

Baby with attitude
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

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.

Things You Can Tell Just By Looking At Her… and Things You Can’t.

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I know we’ve talked a bit about Leah’s having some medical complications. I just wanted to take a moment to give you a rundown on what she is facing right now. So here you go:

Things you can tell by looking at Leah:

  • She is adorable.
  • She is tiny.
  • She is squirmy.
  • She is a diva.
  • She is a fighter.

Things you can’t tell by looking at Leah:

  • She has Down Syndrome.
  • She has esophageal atresia as well as a choroid plexus cyst and several small holes in her heart.
  • It will be at least five months before we can bring her home.
  • What color is her hair???

Esophageal what? Allow me to explain. Throughout Mandy’s pregnancy, the doctors were never able to visualize Leah’s little stomach on the ultrasounds. Since we already had a strong suspicion (and later on a near-certainty) that she had Down Syndrome, that led to the additional suspicion that there might be a medical reason for this invisible stomach. For kids like Leah, the biggest medical concern that doctors watch out for is heart defects, since about 50% of the kids with Down Syndrome are born with a heart problem. Another problem that occurs less frequently – but still with greater incidence among children with Down Syndrome – is atresias along the digestive tract. This means that openings and passageways between digestive organs are not completely developed.

In Leah’s case, the doctors suspected tracheo-esophageal fistula (where a portion of the esophagus connects to the trachea) or esophageal atresia (where the esophagus doesn’t connect to the stomach). Often they occur together. From what we can tell so far, Leah has a pure esophageal atresia, which means that they don’t think the trachea is involved. Her esophagus stops pretty high up in her chest, and the docs haven’t been able to tell yet how long the tract is on the stomach end. They want to hold off on even doing a study until she’s gained a bit of weight. At that point we will have a better idea of what she is facing surgery-wise. The docs won’t want to operate until she is about 10 lbs (which they guesstimate will be in about five months). If the gap is short, the surgery is fairly straightforward and they can operate, fix, and let her heal. If the gap is long, the procedure becomes more complicated, and preparation alone can take days or weeks and carries more risks. So keep your fingers crossed for a short gap!

As far as updates go, Miss Leah got her nasal cannula out yesterday, so she is breathing all by herself now! Sometimes she gets a little bit too relaxed and forgets to keep breathing, but for the most part she is staying on the job.

We transferred to Ronald McDonald House yesterday after Mandy was discharged from the hospital, and we are getting settled in. Mama Mandy is still pretty sore from her surgery, but she’s being a trooper. Mama Lisa is still chugging juice boxes and broth.

Oh – and for those of you who brought baby food jars to the baby showers, you’ll be happy to know that we decided to donate the baby food to Ronald McDonald House instead of SOVA. They were thrilled to receive the jars as baby food is a product in high demand over there.

Pictures coming soon!

Mama Kangaroo

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Since baby Leah got her vent out yesterday morning, we were finally able to hold her! She looked a little bit too tired to take her out in the morning, so we waited until the afternoon. We each got to hold her for 15 minutes, which is about how long it took the nurse to get her out of the isolette in the first place – this is one “plugged in” little girl! But the nurse finally sorted out all of the cords and tubes and wires and set her down on our chests, where she snuggled in. When the nurse put Leah on Mandy’s chest she even tried to open her eyes and look up at her mama.

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I forgot the best part

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Oh hey, did I mention WHY they called “CODE C! CODE C!”?

When I first saw Leah, her feet were dark purple and bruised, and the doctors told me that it took them a while to pull the baby out of her mama’s belly because her head was really tucked in there but also because her foot was stuck in the birth canal. But here’s what they didn’t tell us until the next day, when we saw the doctor who did the original exam that led to the crash c-section: When she did the exam, the doctor could actually feel Leah’s feet starting to come out. That’s right. Our little troublemaker tried to jump out feet first.