Category Archives: Updates

Echo update (update update update)

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Leah had her echocardiogram this morning and the holes in her heart have neither grown nor shrunk. The cardiologist who read the echo also suggested that Leah’s pulmonary valve looks small, but Leah’s doctor suspects what the cardio might be seeing is excess blood from the holes flowing through a normal-sized valve; she thinks it just looks proportionally small because of the excess blood. They will keep an eye on it either way. We’re relieved that the holes have not grown, but would have liked to hear better news about shrinkage. But I guess we’ll take what we can get. The docs started Leah on Lasix and her breathing rate has already improved a bit. She definitely seemed a bit more calm today – or at least less agitated.

Not too many pictures today as I spent half of the day holding Leah and most of the other half out in the NICU waiting room with a loaner baby while my BFF Auntie Z visited with Mandy and LeahBug. Baby Ry Ry (a.k.a. the monster truck baby) and I had a good time in the waiting room. We chilled, took selfies on my iPhone, watched “The People’s Court,” played “no, you can’t have my glasses,” and took a nap. Well, Ry took a nap. I tormented my back learning how to use a Baby Ergo. It was good times. When Mandy came out so I could have my turn visiting with Auntie Z and Leah, I set him down on the seat next to Mandy and he got a giant grin on his face, as if to say, “Hey, I know YOU!” He loves Mandy. Well, he loves both of us… but Mandy smells like milk.

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Auntie Z and BabyBug

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“Where’s Ry Ry? There’s Ry Ry!”

At long last, a pictureful post!

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Our sweet baby girl was a little fussbudget today. I don’t blame her – she was a gassy little mess and was having trouble pooping most of the day (hey – you come to a blog about a baby, you get a blog about a baby), so her tummy was hurting and distended and she was making little straining faces and turning red all day. Someday she will hate me for this post.

We did get a chance to talk to the doctor today. They are going to start Leah on Lasix to help her with her breathing, and they will do another echocardiogram tomorrow instead of next week to check on the holes in her heart. Here’s hoping they haven’t gotten any bigger!!!!

On the bright side, today baby Leah got a visit from her cousin Kim, who was sick for several weeks (i.e. in exile from the NICU) and therefore hadn’t seen Leah since before Mandy was released from the hospital. Cousin Kim used to babysit me and bring me to class when she was in college and I was a teeny tiny infant, and I used to babysit her kids when they were tiny – and for that matter, Kim’s mom used to babysit my dad when HE was little, and I’m pretty sure my dad used to babysit Kim… You see where this is going. Anyway, Leah and Kim had a lovely reunion and Kim was very impressed at how much Leah has grown, even though she’s still a wee bug.

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Cousin Kim and LeahBug, together at last

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The cutest feet on the planet

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Beautiful precious doll with beautiful precious hair

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Another photo for proportion’s sake, and also because it’s cute.

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“I’mwideawakeIdon’tknowwhattodowithmyselfbutI’msoverywideawake.”

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“Oh noes, I think Mama saw me! Quick, self, pretend to be sleeping!”

I’m late, I know!

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I hope this was worth the wait:

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Silly girl!

Baby is at 4 lbs 11 oz this morning – about the same as yesterday. She’s gained 5 grams since her last weigh-in. Leah’s breathing rate has been measuring pretty high, so they took her in for a chest x-ray yesterday as well as some labs. Things seem to look okay right now, although her heart looks a little big. They are going to do another echocardiogram next week; the last one was taken soon after her birth. The doctor wants to put her on Lasix, though – we’re going to talk to her soon and hopefully I’ll have more of an update. Keep sending those positive thoughts and prayers, please – hopefully Leah does not have to deal with major heart issues on top of her digestive tract malformations.

Brief update

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We had our family conference today with the surgeons, Leah’s NICU doctor and the social worker. Aunti Staci came too so she could ask fancy medical questions. I think in terms of Leah’s progress over the next few months we didn’t hear anything really new new – this was mostly explaining in more technical and concrete terms what we already sort of knew vaguely – that we’re waiting to see how long the gap is between Leah’s esophagus and her stomach, what the surgical options are depending on what the gap looks like, and what potential post-surgery outcomes we can expect. The first time we met the surgeons they reviewed this information briefly, but once we heard “five months” come out of their mouths everything pretty much sounded like Charlie Brown grown-ups (“Wa wahh, wah wah wah wahhhh”). It was nice to be able to meet with them again after having had some time to process what we’re going to be facing these next few months.

So here’s the substantive update for now: Later this month they will take the g-tube out and put a “Mic-Key” button, which will allow BabyBug to only be hooked up to the feeding tube during the times when she’s actually feeding. The rest of the time the “button” will be closed. For right now this probably doesn’t mean much to her, although her mamas are SUPER excited about getting to put her in all the adorable onesies we have waiting for her at home. But if she still has to feed by tube when she’s a little older, then it’ll make a bigger difference to her as it allows for more freedom of movement; kids can run around wearing these things. When they do the procedure to put in the Mic-Key button, that’s when they will do the contrast study to visualize the gap and also check on some other issues that could potentially arise with her condition. So hopefully by the end of this month we’ll have a better idea of what the next steps look like. Either way, they’re still planning to wait for surgery until she reaches about 9-10 lbs, for a variety of reasons both general and particular.

Other than that, not too much news to report today. BabyBug went through epic numbers of diapers, and things got really messy a couple of times. She thinks it’s adorable to wait until the diaper’s off and in the process of being changed before she really gets going. And we’re getting to see the fussy side of Sweet Calm BabyBug as she’s finally starting to experience hunger. She was on continuous feeds but slowly they have been shifting her to interval feeding. At this point her feeds are about 40mL over the course of half an hour, with 2.5 hours in between each feed. By the end of that 2.5 hour stretch, BabyGirl is HUNGRY and FUSSY and REALLY PISSED OFF. Then about 20 seconds after they start the milk, she calms down. It’s magic!

In other news… this afternoon I went downstairs to the cafeteria today to heat up Mama Mandy’s lunch for her. When I came back up I sat in the waiting room for a few minutes and then looked around and noticed it was awfully crowded today and some people had rearranged the chairs in the middle. And they had installed new vending machines. A few minutes later I looked up and saw somebody being wheeled out of the double-doors next to the waiting room. I thought to myself, “Why are they wheeling a man out of post-partum???” Then I realized it was the cardiac wing. Wrong floor. Whoops. Baby brain!

We’re still standing!

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Don’t worry, we haven’t fallen off the edge of the earth! We’re still here. Just got a little busy.

Update on the Mamas:

Mama Mandy: SLEEPY but otherwise doing okay, all things considered. She’s still wearing her brace, but the pain from the c-section is decreasing a lot. Mostly she’s dealing with the trials and tribulations of pumping every three hours.

Mama Lisa: Not good these past few days. Just not good at all. Thankfully June 5 is just around the corner.

Update on the BabyBug:

Leah is at 4 lbs 3 oz today. She’s had a little bit of trouble the past couple of days. As you know, she yanked her tube out on Wednesday. Yesterday it was Mandy’s turn to have kangaroo time cut short when she noticed there was blood in Leah’s suction tube. The nurses said sometimes the tube can irritate the lining of the throat, but still they wanted to put her back to monitor her. Today we got a call from the doctor (that’s never good…) letting us know that she hears a bit of a murmur from Leah’s VSD – the little hole in her heart. They are monitoring that as well. I don’t think this is anything particularly new, except that it’s a little bit more on their radar now that it’s causing detectable signs. I guess. The doc is still hoping it will close on its own and not require further intervention, but the possibility is there. They are going to do another ultrasound of her brain soon to check on the choroid plexus cyst.

The good news for today is that the sweet BabyBug got to wear some sweet preemie shirts furnished by her dear Auntie Z. I seriously thought the shirts were going to be too small. These things are TINY. Like, they could lie flat in the palm of your hand and maybe a little bit would poke off the edges, but not enough to droop down over the edge of your hand. I’m talking TINY. Did they fit her? Yes. Were they too small? Uh, no. The preemie shirts are loose on this kid. She’s just that little!

Below are pictures for your enjoyment. Don’t blame me if they’re like, 10 of the same picture. She is uniquely cute in every picture so you must see them all. I’m just saying. (No, you’re not really seeing them all. We passed 15 GB of photos and video at some point this week. For real.)

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A pic from Thursday. Our little elf.

Random useless thoughts
Random thought: Frequently children with Down Syndrome have pinky fingers that look a little different, e.g. bent or hooked. In this case, though, I can’t tell whether Leah’s cute little bent pinky is a product of her Down Syndrome or her genetics – my pinkies are bent too! Go figure.


Another mouseover. “All the single babies, all the single babies…”

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Baby with hand for perspective.

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Snug as a Bug

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LoveBug

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Our little ham

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She looks like a doll!

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Little froggie

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Sweet sleepy baby

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Look at this kid’s hair!

And just for the heck of it,

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Jacarandas in Culver City. Gawgeous.

Exciting day for BabyBug (bearing in mind that excitement is all relative)!

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Leah had a long day full of fun and excitement. She had lots of visitors, and she has some cool things to tell you, the biggest of which is that our BabyBug FINALLY reached 4 lbs! Or 4 lbs, 1 oz to be exact. It doesn’t really mean anything medically; Mandy and I just wanted to see her get out of the 3 lb range. Good girl!

BabyGirl also wore her very first clothes today! It just kind of came out of the blue; she was a little bit cold with her isolette constantly open, so the nurse put her in a little shirt. A very little shirt. And she still swam in it. See the picture below.

Leah also had visits from Aunti Staci (who taught her the art of taking selfies), her Gran (Mandy’s mom), and Mandy’s cousins Beth and Brian along with their daughter, “Auntie Erin,” who is surely already planning a most awesome wardrobe collection for Leah to wear once she gets sprung from this joint.

Leah also spent a longer time outside the isolette than ever before! I kangaroo-held her for over an hour earlier today, and Mandy did the same for nearly an hour this afternoon. Her oxygen level fell below 90% a couple of times, but she self-corrected and even more importantly, she didn’t turn blue once! Good girl! After Leah was weighed tonight and wrapped back into her swaddle, Mandy held her in burrito-form. No, not burrito-style. Just, you know, all wrapped up.

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Sweet peaceful bug

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More sweet peaceful bug

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Smiley peaceful bug

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I so want to kiss the top of that little head, but in the NICU it’s probably a bad idea.

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High five, little girl!

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Leah is either playing Dr. Spock or channeling her inner Kohan. I was imagining her saying “may the force be with you” until I remembered that’s totally the wrong movie. Bad geek! Bad!

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BabyGirl and Aunti Staci. “She looks just like me!”

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NOM NOM NOM

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Aw shucks, you don’t say…

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Tada! It’s… a spa robe? A muu  muu?

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LOOK MA! 4 LBS!

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Baby burrito

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Baby burrito with open eyes

The ShutterBug reports on the LeahBug

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Not too much of an update today. Leah’s weight hasn’t really changed since the last time we posted. It appears she has gained about 5 cm, though. She was 41 cm (16.14 inches) at birth, and now she is 46 cm (18.11 cm). I guess she’s a quick little sprout – either that or she slouched earlier and decided to stand up nice and tall for her measurement this time.

Pictures for you!

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The paci is almost as big as her head!

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Poofy cheeks

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Mama Kangaroo

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Bitty bitty fingers

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She’s so cute she’s pinching her own cheeks!

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“Phhhttttthhhh!”

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“But I’m not tiiiired! I don’t waaaanna go to bed!”

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Waiting for somebody to fan her with palm fronds

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“I R TINY.”

Please share on Twitter too!

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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!

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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!