Crrraaaanky baby

BabyBug was very, very cranky today. We think she’s still really feeling the Mic-Key insertion site, and it’s looking a little bit red. They will continue to monitor it. In the mean time, BabyBug let out some epic wails this evening. We went home for a bit this morning so we stayed at the NICU ’til nearly 10PM. It took us SO LONG to calm her down, at least an hour. She would fuss for a bit, be comforted by one of us singing or petting her head, and then fuss again. Finally we had the nurse give her some Tylenol, and Mandy rocked her in the chair while I read “Alice’s Adventures in Wonderland.” She finally drifted off to the tune of the Cheshire Cat, and we deposited her in the isolette and tiptoed out of the NICU.

If you’re keeping track… Leah is back down to 5 lbs 8 oz, from a high of 5 lbs 13 oz. She’s had a rough couple of days so it’s not surprising to see a loss.

A belated update

Sorry for the belated update!

BabyBug is doing well and recovering quickly from her Mic-Key button placement surgery. She got the breathing tube removed yesterday, and the nasal cannula came off around noon today. She was having some trouble breathing still so they restarted her Lasix early, but other than that she seems to be doing well. They took out the IV in her hand (the boxing glove) but she still has the one in her foot (the snowshoe). Leah is already on full feeds again, and they are no longer fortifying her milk with cow’s milk formula, so she is exclusively on breast milk. Yay! She is still pretty fussy, especially as it gets closer to her feeding time. We’ll see how she does over the next couple of days!

Leah has lost a little bit of weight – she was up to 5 lbs 13 oz but now she’s at 5 lbs and just under 10oz. Hopefully she will gain it back soon!

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BabyBug yesterday, cute as ever. If you look closely at her blanket you might see the ladybugs (although they might not be visible in this pic). LadyBugs for LeahBug!!

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Leah with her cousin Abby! I love this because Leah looks like she is trying to smile for the camera.

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Ready for her close-up

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The Thinker

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This is a photo from Katrin, an Instagram friend in Russia. She and her baby sent this sweet message to Leah while she was still all wired up and recovering from her little surgery. I love that there are people all over the world who care about Leah and follow her progress. Thank you!!!

More details

Thank you all so much for your positive thoughts today! We had an exhausting day – more mentally exhausting than anything else. Leah’s surgery wasn’t until 2PM, but when we arrived at the NICU this morning she was already hooked up to the IVs, and we spent a good part of the late morning and early afternoon trying to soothe her back to sleep because she kept waking up and realizing how very HUNGRY she was. Once it was time for them to take her away, they transferred her into a smaller portable isolette – much like the one in which I first saw her staring up at me. We walked down to the OR area with her and she spent the whole journey so distracted by her new and changing surroundings that she seemed to forget her hunger – until we got downstairs, anyway.

From the time they sent us on our way, it was about two hours before the nurse came out to the waiting room to get us. When we went into the room BabyBug looked so much like she did the day she was born. She has the ventilator, the IVs, the little boxing gloves and snow shoes – everything. On the bright side, this time she is a lot bigger and stronger – and also has more hair and poofier cheeks. She woke up for a little bit and started trying to squirm out of her new gear, so they gave her some more pain meds, which knocked her out again. We left the NICU in the early evening to give her a chance to rest – and as soon as we got back to RMH we both crashed out too, at least for a nap. We just called the NICU to check on Leah and she is still sleeping – and she hasn’t had to have any more pain meds so far. They are slowly starting to wean her off of the ventilator, so we hope by the weekend she will be breathing on her own. The IV nutrition will be in a bit longer as she gets reintroduced to feeding.

And finally, here is the news you have really been waiting for: Yes, they did her contrast study today, and yes, it does appear to be a long gap. They measure the gaps in vertebral bodies rather than cm or inches, and they said her gap spanned about 5 vertebral bodies. It sounded like the pouch on the stomach end was very small – hopefully we will get more details as the days go by, and I am going to ask if we can see the scans. The doctor said 4 or more vertebral bodies would be considered a long gap, so yes, she falls into that category. This means that her surgery will likely be a very complicated ordeal as opposed to a simple repair. We suspected as much, but it was nice to hold out that hope that she might be one of the very few kids with pure EA to have a short gap. Alas. On the bright side, she still has to get to 9-10 lbs, and during that time the gap may or may not shrink – sometimes it does, and sometimes it doesn’t. They will do another contrast study when she gets a bit bigger. But it does sound like we’re looking at a long-gap repair.

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This is our BabyBug on drugs. Any questions?

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The Mic-Key button, with feeding tube attached. When it is detached, the little flap folds over to seal it.

All OK

BabyBug had her surgery today. Mic-Key is in, study is done, and baby is pissed off to be stuck to a zillion tubes again. She is sleeping soundly thanks to drugs. We are exhausted. More later.

News in the nation and news in the NICU

What. A. Day.

I should probably start off by disclosing that I got very, very little sleep last night, so I’m very sorry if this is disjointed. I couldn’t fall asleep until about 2AM, and then I kept waking up every hour or so because I kept dreaming that I was repeatedly checking CNN for the SCOTUS decisions and they weren’t showing up. I woke up at 6:30AM and checked CNN for real, but there was nothing, so I drifted back to sleep. Then, for the second time in two months, I woke up at roughly 7:30AM to Mandy exclaiming, “OMIGOD.”

We were glued to our computers for a couple of hours after that – we had the morning news on briefly, but oddly they seemed not to really be talking much about the decision. It was really about Facebook today. We are, understandably, kind of isolated from the rest of our world right now (physically, at least), so it was really nice to be a part of the online celebration and enjoy the moment with friends who live all over the city, state and country. And world, for that matter.

It’s funny – I commented to Mandy that I’m really happy about these decisions but I didn’t feel the same adrenaline rush that I did the day that the original district court decision came down – we were on a cruise ship celebrating my graduation, and I RAN from our cabin to the lounge to tell Mandy. It was a moment. This… this took most of the day to really hit me. I’m so grateful to the generations before us for what they did – and what they lost – to get us to where we are today. And even with everything that came before us, Mandy and I have seen so much in our relatively short lives. Hawaii and DOMA. CA’s Prop 22. The year 2003 with its groundbreaking SCOTUS and state supreme court decisions (Lawrence and Goodridge) as well as Gavin Newsom’s ground-level activism. Mini-DOMAs being added to state constitutions across the nation – nearly 40 in all. The back-and-forth with the California Supreme Court, followed by Prop 8: Marriage. No marriage. Then marriage. Then no marriage, but some marriage. The bittersweet moment of watching Obama’s acceptance speech on the massive screen at No on 8’s election night headquarters. The afternoon rallies that turned into all-night protests. People pouring out of the subway station to march to City Hall. Then this federal case and all its intricacies and legal maneuvers. And now we’re at today. The enormity of the whole situation is still sinking in. This legal avalanche that started with DOMA has been going on for our entire adult lives and then some. And now DOMA is dead – or at least, a key part of it. Prop 8 is dead. We live in a better country today than we did yesterday. And we could be better still tomorrow.

< / sermon >

As soon as we were ready to head out, we rushed to the NICU to tell Leah the wonderful news. When we got there, she was thoroughly knocked out. She had just been downstairs for her contrast study and was exhausted after what I imagine was a very long period of angry wailing. Poor BabyBug! We waited patiently until she woke up to deliver the wonderful news – but as it happens, she was hungry and needed a diaper change by that time, so she was having none of it. After we resolved these critical matters, we were able to tell her all about the Supreme Court’s rulings. She promptly fell asleep.

On a more serious note, when the surgeon came in to read through the contrast study, he discovered that Leah’s tube had migrated into the second part of her intestine, meaning that instead of delivering food into her stomach (which is supposed to stretch the stomach), it was bypassing her stomach and putting the food directly into her intestines. As a result, her stomach is still very small as it has not stretched with the increased feedings. It’s possible that the tube was misplaced when they put it in two days after her birth. This would mean that she has missed out on 7 weeks’ worth of tummy growth. However, after thinking about it we suspect that it may have happened the day that her g-tube stuck to the gauze and pulled out a bit and the nurse pushed it back in. That would explain why she had been tolerating feeds so well but then suddenly started getting gassy and uncomfortable.

On the other hand, it’s also possible that it’s been migrating gradually as various nurses have been changing the dressing on the insertion site, since apparently this is a bit of an old-fashioned tube and many nurses have not encountered it before. Not that this is an excuse. If you use a certain type of tube, you make sure people are instructed on how to care for it, regardless of how old-skool it is. But it does appear that it has migrated even just in the past week.┬áLast week another surgeon examined Leah and concluded that her tube was in too far, so he pulled it out a bit and put a black mark at the spot where the tube entered Leah’s belly so that the nurses would know where the tube should be. At some point over the week or weekend, the black mark vanished and we were told it had probably washed off. Well, today Leah had an epic tantrum because we noticed that the bandage tape was really close to the insertion site and thought that might be irritating her, so her nurse changed the dressing, which resulted in a totally-justified tantrum on Leah’s part. As Leah screamed and cried she pushed her belly up, and the tube started to slip out a bit, and slip out a bit… and wouldn’t you know it, after maybe an inch and a half or two inches of tube, the black mark emerged out of the insertion site. How about that?

(Later, as she was calming down, I told her, “See, if you had just used your words, we could have helped you sooner! No need to cry! Next time, just tell us, ‘Dear mothers, I do believe my g-tube might be inserted up to 2 inches too deep and it is causing me extraordinary discomfort.’ See? Just use your words, that’s all you have to do!” She squeaked at me.)

Well… to make a long story short (although really I think it’s too late for that), the surgeon who examined this morning’s contrast study said that the study was useless because of the tube placement, and he decided he wanted to just do the study himself next time instead of reviewing it after the fact. He asked what the date was for her Mic-Key button placement. When we told him it wasn’t until July 11, he said we might as well just do it next week – and then said we could just do it tomorrow. She is big enough now and this way she can start stretching out her tummy, which was supposed to have been happening all of this time.

So Leah will be having her Mic-Key button surgery and contrast study at the end of June after all.

We hope you will keep BabyBug in your thoughts tomorrow! It’s just a little surgery but it’s still surgery and it’s still scary! The unnerving thing is that Leah will be back on the machines again. She will have to be intubated and will have the breathing tube until she no longer needs it. She will have to be on IV nutrition while they resume feeds slowly – even more so because we don’t know how much her stomach actually stretched out and it may not be able to hold what she’s been consuming at each feed. It will be rough seeing her like that again. We just have to remember that the NICU can sometimes feel like it’s three steps forward and two steps back, but this particular step is a step toward progress.

And now… pictures.

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A family portrait on this momentous day.

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Adorable blankie from Barb and Cass!

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We love our new hat made by Mandy’s coworker! It is really adorable – she made several hats in different sizes and nested them so that each fits into the next. Leah can grow into each one!

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We haven’t quite mastered the art of thumb-sucking yet.

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We’re still working on that.

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Saddest. Picture. Ever.

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BUZZZZZZED BABY. OMG. She was SO AWAKE she didn’t know what to do with her eyeballs, so she was looking around, crossing her eyes, looking up at Mandy, looking at me, crossing her eyes again, and asking us to please stop slipping Red Bull into her g-tube.

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We stayed late at the NICU to give BabyBug a bath before her big day. She loves bath time! I was very proud of her tonight – she was a little too high up on the mattress so we scooted her down a little bit – and she used the cushion at her feet to scoot herself right back up! Yay for using our muscles!

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This one’s for you, little sister. You’re welcome.

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Now we’re a peaceful bug again.

And now I leave you with this live performance by Vienna Teng. The song has been in my head all day and I think you’ll understand why.

Photo Extravaganza

I totally owe you all tons and tons of pictures, so tons and tons of pictures you shall have!

Quick update first – it’s looking like they may actually just go ahead and do the contrast study this week. They were always talking about doing it in late June, but when they postponed the Mic-Key button procedure to July 11 we assumed they would postpone the contrast study too. Guess not! Keep your fingers and toes crossed for a short gap!!!!

BabyBug has been having some trouble with her suction tube lately and as a result has been coughing up icky stuff that should be going out into her tube. Still trying to figure out what’s causing that. In the meantime Leah has been a bit fussy.

In non-medical news, we finally broke down and let some folks besides the doctors and nurses hold the bitty bug. We chose Mandy’s cousin Erin for the honor of being Numero Uno. Valerie (of Leah Valerie) was Erin’s grandma and a very important person in Mandy’s life. Plus Mandy watched Erin come into the world! So it seemed appropriate. By now BabyBug has also been snuggled by her grandparents and some of her uncles and aunties. FYI, she gets a lot of visitors and it wears her out to be passed around too much, so please don’t be offended if we don’t offer to let you hold her when you come to visit! We are trying to balance snuggle-sharing with keeping the little one well-rested so she can grow and be strong!

Okay, here’s what you were really waiting for: PICTURES!

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Hooooongry baby!

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Sweet kidlet.

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Numero Uno Baby Snuggler

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Auntie Erin is thrilled to be holding a little bug!

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“Oh hey, there’s a bug in my lap!”

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Gran, Mandy and Baby

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We have awesome hair.

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Comfy

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Leah’s friend Barbara, who visited along with her wifey

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Grandpa Bill. Grandma Barbie shunned the Mamarazzi.

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Grandpa Bill and Baby Bug having a serious conversation.

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“Hey, whatchoo lookin’ at?”

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BabyBug is a genius! Look at her starting to sign her name already!

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What are you laughing at, little girl?

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Bitty bitty fingerses

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Knocked out

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Mama Lisa playing with the camera

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Itty bitty fingernails.

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Portrait of a Bug

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Look at our little headband!

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“Uncle Ralph thinks he’s sooooooo funny!”

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Aunti Staci loves her little bug

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“Who is this silly lady holding me? Oh, hi Aunti Staci!”

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Peaceful sweetheart

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My cousin Kim holding the tiny tot. I used to babysit Kim’s kids. Kim used to babysit me. My dad used to babysit Kim. Kim’s mom used to babysit my dad. And now the cycle shall continue.

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“Oh hai, Auntie Kim! What’s up?”

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Little snow pea.

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Your reward for getting to the end of this post. I found it on Facebook. Love. Even though it’s missing the crucial “HELLO!”

Quiiiiick update

Sorry for the tardiness – we were so tired yesterday that we got home-ish (that’s what we’re calling RMH) early and crashed out. Today was our 6-year wedding anniversary so we celebrated by spending the day and evening in the NICU with Leah, though we did have a little dinner date between shifts (about 2 blocks from the hospital – we didn’t stray far!). So we’re exhausted tonight too!

We gave BabyBug another bath tonight and she was just as cute as the last time. She gets so wide awake as she tries to figure out what the heck is happening to her. This time she thought it would be very cute if she waited to pee until we took the diaper off. It was a laugh and a half. What a silly bug!

Leah’s weight is still around 5 lbs 4 oz; she gained a little and then lost a little. The doctor told us this afternoon that they may try to do a mini dye study a little later this week to get a sense of how her stomach is doing (e.g. how large it is) and whether they can see at all what’s going on in the stomach end of the esophagus (if there even is one). More news as we get it!

I sweeaaaarz I will post pictures tomorrow. We have some great photos to share.

A couple of little firsts

We don’t have a new weight tonight since we got early spoilers last night. However, BabyPie had a couple of firsts today. The nurse said it’s time to start giving her some visual stimulation, so she propped up a little box thingie in front of her (mobile style) for entertainment while she ate (and of course by “ate” I mean “sat there like a royal doll while food was pumped into her tummy”). The box had mirrors on some sides and shapes on others. This means our wee Bug saw her own precious face for the first time today!

Leah also continues to be a gassy, gassy baby, so we have been trying to hold her upright a bit as that seems to help. Today we set up the Boppy in her isolette and propped her up for a feeding and nap. She sat like Queen LeahBug on her pillow throne (yes, I’m skipping the obvious Princess Leia reference). We were only missing palm fronds.

We now present you with pictures!

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Sleepy Bug partying like it’s Pesach

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“MAMA! There’s another BabyBug over there!”

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Angry Baby. (When I first called her Angry Baby, Mandy envisioned a new iPhone game app…)

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Sleeping Beauty with blankie by Nicole G.M.  Thank you!!

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Look at that hair! She is too cool for school – and also too tiny.

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Pouty pout.

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Wide awake and fascinated with the New Thing

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Feetses

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“Hey Mamas – now I can see what I look like sleeping! I am so cute when I sleep! How do you stand it?”

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Yawn or angry baby?

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“Oh mee oh myy and heavens to Betsy!”

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Happy Mamas

Bathtime for Baby!

Well, we had a very long day today – we had to stop at home in the morning and I picked a zucchini that was probably bigger than Leah in length and weight. Then I had to go to the Pit of Despair, a.k.a. the DMV. We FINALLY got to see LeahBug this afternoon, and we stayed well past shift change tonight to make up for having been terribly, terribly late. It’s so hard being away even half of the day.

As we were checking in today we could hear a couple of angry little meowls coming from her “pod,” and we just KNEW it was her. Sure enough… she was very mad about her tummy situation. She’s one gassy little baby. I guess when you can’t burp, the air in your belly can only go out one way! On the bright side, our little one was 5 lbs 3.5 oz today! Wow! Go go go little LeahBug! Grow grow grow!

We did have one special treat tonight: We got to give LeahBug a bath for the first time. It’s really more of a sponge bath for the NICU babies – or really a wipe bath if we’re being particular. But we washed her little hair and scrubbed behind her ears all the way to her little toesies. She was soooooo wide awake and was a little squirmy wormie. She was enjoying being out of her diaper, although Mandy and I were a little nervous and told the nurse she was being awfully brave. I don’t even want to ask how many blankets get wrecked during bath time…

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Bathing our pot-bellied BabyBug and holding up strategically-placed wipie so the photo will be blog-appropriate. Gotta leave her with some dignity, especially after posting that cross-eyed photo!

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Sleepie-pie

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I took a picture of this newborn pic while we were at home. What do we think – does she look like me?

You’re halfway there, BabyBug!

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Oh hey, look – it’s a 5 lb baby!

“Did she just say — did I just read — what??”

You read me correctly! BabyBug officially weighs FIVE POUNDS as of last night. To be more precise, she weighs 5 lbs 0.6 oz.

Of course, this afternoon BabyCenter’s “My Pregnancy” app (which we haven’t yet disabled) notified us that our baby is now at 38 weeks, and “has really plumped up. He or she weighs about 6.8 pounds and is over 19 1/2 inches long.” Way to be a wet blanket, BabyCenter! We’re very proud of Leah for fattening up to 5 lbs. Her little chicken legs are starting to turn into baby thighs and her cheeks get more squishy by the day. That’s the best we could ask for right now!