Not too much else to update. We had a nice quiet day in the NICU today, just Mama Lisa, Mama Mandy and a tiny, tiny BabyBug.
Now for some more pics!
Toeses
Babygirl was having a rough hair day. So emo.
BabyBug and her awesome hair post-costume-change.
Sweet peaceful bug. I tried to comb out her hair and this is as good as I could get it. It must have dried sticking straight up after her last bath. This, I can forgive… but I’m going to be very suspicious if we walk in there tomorrow and find her with a faux-hawk. Aunti Staci, are you sneaking in at midnight to do Baby’s hair?
“Oooh! Oooh! Mr. Kotter!”
“Let me just tell you about my day, Mama…”
Thumb wrestling. Somehow I think Mama Mandy still has the upper hand.
Baby Blintz
The Little Mermaid. Something about this swaddle just isn’t right. Mama Lisa needs practice.
“Live long and prosper!” (Did I get it right that time?)
“Same thing we do every night, Pinky! Try to take over the world!”
Well, not too many updates for you today. We went home for a couple of hours this morning, just to make sure the house is in one piece. Our roomies have been taking care of the kitties and watering the garden and picking the squash before they turn into blunt weapons. Each time I go home, I bring a bag of huge zucchinis and patty pans back to the RM House and put most of it out for other residents to take. I love seeing the squash grow, but for me the big treat when I go home is the berry harvest. The strawberries are sort of floundering from the lack of attention, but I picked a nice container full of blueberries and blackberries today, and I can see that the raspberry plant is starting to flower. I hope to get a bigger harvest than I did last year (all of about three raspberries). We may also start getting to pick some bell peppers soon; I see lots of green ones growing in but most of mine are red varieties so they still have some time before harvest. Here’s hoping I can eat them by the time they’re ready for picking!
And now back to what you’re really here for: Baby report! Leah is just a smidge over 4 lbs 5 oz as of yesterday (Sunday), meaning she’s gained about an ounce per day since she hit the 4 lb mark. We put her in another newborn shirt today while the preemie clothes were in the wash, and once again it looked like a nightgown (see below). Her feeding remains on three hour cycles, but they are easing her into interval feeding (can’t remember if I mentioned that) and at this point they’re giving her the entire feed over an hour, followed by a two-hour break. I think the goal is to get her down to a half-hour feed to make it more closely resemble a typical infant’s feeding pattern.
A good 40% of Leah’s Sunday visitors were celebrating a birthday (that sounds a lot more impressive than “two out of five”). Leah’s Gran came with Mandy’s brother, Ralph, who turned 48 on Sunday. Happy birthday bro! Grandma Barbie (my mom) and Aunti Staci brought Leah’s Great-Grandpa Mannie to visit for his 94th birthday. Happy birthday Grandpa! In case we haven’t already explained, Leah is named after my grandmother – this grandpa’s wife – who passed away when I was in high school. Leah’s middle name, Valerie, is for Mandy’s aunt, who has been gone almost 4 years now. It is an Ashkenazi Jewish custom to name babies after beloved relatives who are no longer with us.
And on that note… pictures!
Stop the Mamarazzi!
Freedoooom! Freedoooooom!
Mainly added this picture so you can see that we’re finally starting to see the whites of her little eyes!
Peekaboo!
Scruuuuuunchyface
Sometimes you just need to skip the fingers and nomnomnom your arm.
Hula baby
ComfyBug
Family portrait
Almost thumb-sucking, but not quite.
“Let me tell you, Mama – you don’t even know the half of it. There are crying babies in this room!”
I haz a dolly!
High five for Mama Lisa!
Pinky swearz!
She’s just shooooo kyuuuuute. It keeeeelz me.
Lounging in a newborn shirt, a.k.a. a preemie nightgown.
Newborn shirt. This sleeve is folded nearly to the elbow.
Just to give you some perspective on the lamby lamb preemie shirt from the other day…
Not a whole lot of time today so I’ll just post a quick update and then do a longer one tomorrow with pics and hopefully more video. I’m typing on my phone so I apologize if there are any typos. Leah seems to have gained about an ounce per day since she hit 4 lbs. Today she was 4 lbs 4 oz. What a good girl! Her hair also looked particularly red today. I’m just saying.
Mama Lisa spent the better part of the day in the ER again, making three trips in thirty days. Soooo hoping my June 5 procedure brings some relief, even if it is a temporary fix.
We went to Mandy’s choir’s performance tonight – she took the season off because of the pregnancy but since the show was literally next door to the hospital we took the opportunity to go be entertained for a couple of hours. It was a great show, and it was so nice to see everybody. One thing that really struck me was how many people mentioned that they have been following the blog and checking on Leah’s progress. I know I’ve said this before but it makes me so happy and hopeful to know that Leah has so many cheerleaders who care about how she is doing and send out positive thoughts and energy and prayers. So I offer a giant THANK YOU to everybody who checks the blog to see how LeahBug is doing. We appreciate it more than you know.
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.)
A pic from Thursday. Our little elf.
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…”
We didn’t spend a full day at the hospital today; both of us had doctor appointments in Culver City, so we spent the first half of the day out there. After the appointments, we made a quick run to Menchie’s to fulfill Mandy’s 7-month-old craving. We were advised to avoid soft-serve machines during pregnancy because of the risk for listeria, and that was a huge sacrifice for Mandy (and therefore me) because we LOOOOVE frozen yogurt. It’s like a THING. So we went today. I managed to tolerate a wee bitty serving of chocolate brownie and cinnamon bun with a few sprinkles of Cinnamon Toast Crunch (they’re kinda like crackers, right?), and Mandy filled up her bowl with blackberry, raspberry sorbet, and vanilla, with raspberry sauce. We know you wanted to know.
After Menchie’s we stopped by my BFF Z’s house to pick up some breast-pumpy-type supplies she had for us. We got to see our little buddy Ry Ry, who, at 9 months old, looks like a monster truck baby now that we’ve been staring at LeahBug for three weeks. Seriously. Leah has thrown off all sense of baby proportion we might have had. And also we hadn’t seen Ry Ry in about a month so I’m sure he has grown, too. At first he was a little bleary-eyed from being woken up, but his face broke into a big adorable smile when he saw his aunties. Too sweet.
Once we were at the hospital, we took BabyBug out for some kangaroo cuddlage. Mandy finally got to use one of the blankets she made, so our baby bug became a baby Bruin. (See photo below).
When it was my turn to hold her, Little Miss LeahBug decided to cause some trouble. I had held her for about 9 seconds (maybe) and she was still squirming and trying to decide which way she wanted to face, when suddenly she tried to rear her head back (luckily I was holding her head like a good Mama should, so it didn’t go too far), and threw her arm forward at the same time, and somehow managed to dislodge her suction tube. Kangaroo time fail! She had to go right back into her isolette so the nurse could prep her for a new tube. Naughty Leah! So alas – no more kangaroo time for Mama Lisa today. Instead the nurse replaced her tube with a new one and then wrapped her up. She was WIDE awake and eventually managed to break out of her swaddle, so the nurse came back and bundled her up like a proper burrito, at which point I was able to lull her to sleep with the paci and a hand on her head. Yay for sleepy baby. I hope that trick still works when she’s 3.
NOM.
“These crazy ladies…”
Baby Ry Ry loves his aunties
Baby Bruin (those are light yellow stripes)
Scrunchy face
Tubeless Baby! “Hmmmm, how else can I get into trouble?”
Shayneh punim, sans tube
“It’s exhausting to be this cute.”
Peekaboo!
Busting outta the swaddle
A proper mini-burrito
Cozy bug
AAAAAAND we have videos! If they don’t load for you, try back in 20 minutes – the last one is still uploading!
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.
Sweet peaceful bug
More sweet peaceful bug
Smiley peaceful bug
I so want to kiss the top of that little head, but in the NICU it’s probably a bad idea.
High five, little girl!
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!
BabyGirl and Aunti Staci. “She looks just like me!”
Baby’s big news of the day is that the nurses started leaving her isolette open to see if she is able to continue regulating her own temperature. They also started easing her into interval feedings. We’ll report back tomorrow as to how she is tolerating these changes.
Leah is still just shy of 4 lbs. 3 lbs 15.1 oz. SOOOOO close.
In mama news… Mama Lisa went home for a couple of hours today to tend to the garden and hug the kitties. Three out of four cats agreed that it was nice to see me. A certain little someone gave me the cold shoulder for a good part of my visit. The rundown: Lobo is not pleased about this abandonment situation, but I think I bought an ounce of forgiveness by playing with him with his little birdie toy. Jeepers was thrilled to see me and wound around my legs the whole time I was there. Jasper asked where I had been, but that’s about it. And although it took S’mores about 20 minutes to show up, she too was very pleased to see Mama Lisa return to the farm. So the first half of Mama Lisa’s day was good. The second half was good re: visitors, and very very bad re: keeping food down. And that is all I will say.
Mama Mandy had a nice day in the NICU, and this afternoon she held LeahBug for over an hour!
As noted above, Leah had lots of visitors today – her Gran and Uncle Ralph, Grandpa Bill and Grandma Barbie, great-auntish Nancy (I hereby coin this term. Auntish. Noun. Meaning: Basically an aunt, but not. Offspring to be referred to as uncousins), and friends Jess and Toni. For the third time in a row, LeahBug opened her eyes as soon as Grandma Barbie walked in the room. She really put on a show for her Grandma. Not only did she open her eyes AND need a diaper change, but she cried. Not a little Lambchop bleat, but full-on scrunchy-faced waaaaaaaa-ing. She seems to have figured out she has this new talent and has been taking advantage of it since yesterday. This should be fun. 🙂
Once we were back at the house, we had what appeared to be a fire drill or false fire alarm. Really it was in the other house but I guess when one goes off the other one gets triggered too. They might be auto-tied to the fire department too, because two big fire trucks showed up with sirens as we all stood outside. And let me tell you, there were some little boys out there who were very, very excited to see big shiny red fire engines.
And now, what you’ve all been waiting for… pictures!
Freshly-picked kumquats, rosemary, and about half of my squash harvest (some picked during the week by roommate). We put all of the kumquats and most of the squash out for others in the house to take.
Blackberries and blueberries from the garden. Those, we keep. 🙂
Peaceful Bug
BabyBug and Mama Mandy
Call off the Paparazzi Mamas! (The Mamarazzi?)
Baby with her open isolette
And lest you think every photo is peace and calm… here is a video that proves that I am a terrible, terrible person – and also easily amused.
Dramatic gestures add effect, don’t they? If you’d like to sing along, here are some alternate lyrics: “CHANGE MY DIAPER! CHANGE MY DIAPER! CHANGE MY DIAPER THIS MOMENT!”
I was so busy giving you technical status updates that I forgot to tell you all about Leah’s day! Leah had lots of visitors today. She saw her Gran (Mandy’s mom), and then her great-great-aunt and uncle (Glenda and Roy), and her cousins Lisa and Ciara. Later on Aunti Staci and Grandma Barbie (teehee – her name is Barbara but I’m pulling for Grandma Barbie) came to say hello. In a little while Uncle Ralph will be here. Big day for family!
Leah is still having some desats (where her oxygen saturation level goes down) and bradycardia (low heart rate) episodes. Mandy and Leah had a nice length of kangaroo time earlier today, but a few minutes into our time she started having issues. We decided to put her back, and later on I held her in baby burrito form instead. We had lots of fun together. I even got some eyeballs. The nurses are helping us learn how to balance the huge benefits of kangaroo time with the stresses of transition for preemies who are still learning how to breathe evenly. Kangaroo time itself is actually one way the babies learn how to regulate their breathing, since they match their breathing up to their mama’s (or mamas’ in this case). They also learn how to regulate their temperatures through skin-to-skin contact. But the transition from any one place to another can be stressful, so we’re going to try each holding her at different times of the day instead of switching her back and forth between us in a single sitting. She’ll get more kangaroo time this way, too! I’ll be so happy when her breathing is stronger and we can just snuggle with her and not have to watch her monitors and listen for alarms! Then again, that’s why it’s so important for us to do this kangaroo time now, to help her get to that point! And she really is pretty hilarious when Mandy holds her. I don’t know if it’s because she smells like milk or what, but Leah’s favorite position is face down right in the center of Mandy’s chest. It’s the funniest thing ever.
Oh – and Sarah Ferguson, the Duchess of York, tweeted for Leah. NBD.
(Srsly though. That is pretty freaking awesome. Thank you Duchess!!!)
And here are some more pictures for you!
Smiley-pie
*wink*
Rock-a-bye baby burrito!
This is actually what we walked in on this morning. She was trying to hide under her tortilla cover.
This is from yesterday but I thought it was cute because Leah is tucked into Mandy’s shirt!
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.
Baby’s uniform for today.
Baby Burrito
SmileyBug
Tiny tongue
Smiling Burrito
Calm down, babygirl!
Mama Mandy Kangaroo – May 18
Beautiful BabyBug – May 18
Talk to the hand – May 18
Baby’s favorite position: face down on Mama’s chest – May 18
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!
