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.

This is our BabyBug on drugs. Any questions?

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

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. Last 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.

A family portrait on this momentous day.

Adorable blankie from Barb and Cass!

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!

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

We’re still working on that.

Saddest. Picture. Ever.

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.

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!

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

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.