Tips on Surviving the NICU

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Daphne getting moved into special care!


So first of all, my post on do’s and don’ts for supporting families in the NICU has resulted in a few really sweet but totally unnecessary apologies. People took amazing care of us, and when missteps were made, it was always with the best of intentions. It was not at all my intention to make anyone feel guilty because my overriding sentiment is that people were amazingly kind and generous with us during the ten weeks we spent in the NICU. Which is particularly worth mentioning because that sort of emotional support is hard to sustain for months on end.

Which brings me here. I asked my husband for tips on the NICU and he said ‘Don’t.’

Spot on advice, I have to say.

I was lucky (as these things go) in that I knew I was facing a long time with babies in the hospital. When they were born, they were pretty fetal. I found it relatively easy to leave because it was so obvious that they couldn’t come home. It was later, when they looked and acted like regular babies and we had been in the home stretch for weeks that I began to really ache to have them home.

I prepped for the NICU by reading Alexa Stevenson, who wrote the book ‘Half Baked‘ and also gave a useful interview at Alphamom.com (I actually read the book twice – once while pregnant and once while in the NICU). I also listened to a really lovely interview with Rob Huebel on Longest Shortest Time, a parenting podcast that has hit some really high highs in the course of its five year (?) run.

Forty percent of NICU parents have some sort of PTSD (my coping strategy is…well, this). Here are the things that helped me (worth noting: I’m an urban planner, not a medical professional, so all the medical stuff in here I either picked up in NICU or googled. I’m pretty sure its accurate, but…).

  1. SLEEP. This one is pretty obvious, but it bears repeating, because if you have just given birth you have Hormones, and you might be expressing, and you might still be staying in the hospital or a place that isn’t home, and you are going through something that is just ridiculously stressful – but sleep (and self-care in general) is pretty critical.
  2. Express breastmilk (this one is for the birthing parent, obviously). Fed is best – I’m not hating on formula per se – but babies that receive milk in the NICU are less likely to develop infections. Infections are the worst. They can set your baby back weeks, and in the worst case scenario they can be fatal. Furthermore, breast milk is medicine. Some parents won’t even be able to hold their babies, but this is something you can do that is concrete and incredibly useful to your child. Its also good for women: it reduces the incidence of post partum depression; it burns calories and helps shrink your uterus; breastfeeding (if/when you get there) releases oxytocin and helps with bonding. There’s another weird thing about pumping, though, that I didn’t expect: most of the socialising I did with other parents, I did in the expressing room. I didn’t make any lifelong friends, but I did make some Facebook friends, and I was grateful for the interaction with people who knew what I was going through. Our hospital had a small room with three little cubicles separated by sheets, and while I often listened to podcasts or watched shows on my phone, I would occasionally chat with other women through the curtains. I suspect American hospitals don’t have pumping rooms (because babies have rooms rather than bays), so this may not be relevant to you.  But my point is, there is value in NICU solidarity, and there will always be ‘long termers’ both ahead and behind you. Its not a community anyone wants to be part of, but knowing other parents on the ward is certainly useful.
  3. Don’t be afraid to advocate for your baby, or to ask questions of the staff. My girls were on high-flow oxygen forever. FOREVER. They kept taking Fiona off high-flow, only for her oxygenation to dip into marginal territory. Her monitors would alarm on and off for an hour and then they would hook her back up. Finally, one day, as they prepared to turn her machine back on, I said ‘could we try low flow?’ (low flow is what you think of when you hear someone is on oxygen – tiny little nasal prongs that hook over the ears). Low flow is better because its easier on their lungs, it makes them much easier to handle (better for parent cuddles) and, on our NICU, it meant they could be moved into Special Care, which was quieter and calmer and less stressful for everyone. Anyway. Fiona killed it on low-flow. And then, a couple weeks later, almost the exact same thing happened with Daphne, except this time I spoke up earlier. The staff know what they’re doing, but you know your child best.
  4. If you live far away, or are unable to spend time at the hospital, ask if there are ‘cuddle clubs.’ Babies benefit from being held – they gain weight more quickly; their blood oxygenation goes up; and their breathing rate can slow too. A cuddle club is a program where volunteers hang out with a baby for a couple hours – the same way a parent would. The nurses will hold babies when they can, but it never hurts to ask for more.
  5. You can always call the NICU. I tried to call when I was pumping, or before I went to bed at night. The reports got less detailed as the girls got bigger and healthier – after Fiona moved into Special Care, I called and the nurse was like ‘…yeah, she’s fine. She’s settled and sleeping.’ and that’s when I realised we had entered a new phase of the NICU journey. But it meant that I never went to sleep worrying that I was missing something, and it also meant that I knew who the nurses were, and they recognised me as well. Once they started breastfeeding, I called to let the nurses know I was coming, and that was really helpful for the staff. Its also THE WORST when you show up to breastfeed your kid, only to realise you’re a little late and they’ve just been given a feed by the staff. The staff hate it too.
  6. Please please please take care of yourself (see: SLEEP). Eat real food, seek help if you need it (most hospitals offer grief counseling and/or have counselors on the NICU, which you may as well use, since its there and you’re clearly going through some stuff)(even if you don’t, make allies in the NICU. I was so grateful for a lot of the staff, but particularly the breastfeeding consultant and speech and language therapist, both of whom had more flexible schedules than the rest of the staff and were more available to answer questions and help  me chart a path through the NICU).
  7. Get some fresh air. NICUs are hermetically sealed so if its gorgeous outside, take a walk. In fact, unless its a torrential downpour or subzero degrees (Fahrenheit), I would suggest spending some time outside.
  8. Accept help when it is offered, and remember life is long, and you can reciprocate later. People want to help, so let them.

It turns out I had to really curb my instinct to write a LOT about boobs, so I think I’ll write more about that next time…? Lucky you.

Shit you shouldn’t ask NICU parents

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Sniff you later, NICU!

My twin daughters Fiona and Daphne were born at 31 weeks this February and were teeny tiny perfect little peanuts. We’d known from early on in the pregnancy that the girls would be facing a long NICU stay, and I think the advance warning was 100% key to my (relatively) stable emotional and mental state throughout the ten weeks we spent on the NICU.

But prepping the people around me was hard. I kept telling my dad we expected the girls to be about three lbs (1.5 kilos) and he would make a choking noise on the phone which, frankly, was not helpful.

In one memorable conversation, I said ‘we don’t know when they will come home even after we have a c section date’

He said ‘oh yeah, because they’ll be in the NICU for a few days.’

‘No, Dad. We’re hoping for 4-6 weeks in the best case scenario.’

‘WHAT?!’

I mean, how would he know? He was just worried, as of course we were too. But managing other people’s expectations gets exhausting really damn fast, especially when you’re working so hard to manage your own. So here is a list of NICU do’s and don’ts for family and friends.

1. For the love of god, don’t ask when the baby/babies are coming home. Do not do this. DO NOT. I know it seems like a totally innocuous question but a. everyone asks and b. as with many long-term hospital stays, the kids are in there until they get discharged. Something can go wrong up until the moment you walk out the door, and I spent most of the ten weeks holding my breath. In Fiona’s case, she had a final, pre-discharge blood test – at which we discovered she was anaemic. She spent another week in the hospital while they monitored her haemoglobin levels.

The best analogy I have come up with, for those of you with friends in academia, is that it’s like asking a PhD student when they are going to graduate. The answer is ‘as soon as possible.’

2. Don’t expect photos. Even the relatively healthy babies are often hooked up to a lot of crap – oxygen, breathing, heart rate and apnea monitors are pretty standard. Really, really early babies are often a non-skin colour – blue or translucent – and breathing apparatus obscures their faces anyway.

3. Hopefully this goes without saying, but do your best not to express alarm at a baby’s weight or age at birth.  Daphne was under two lbs. I know that’s tiny. I dislike telling people because they look so startled. But of course, not all NICU babies are early; some have a rough start for other reason. A friend recently spent nearly three weeks in the NICU with a past-term baby, and the most alarming thing I witnessed in the NICU was a 37 weeker rushed in from labour & delivery (thankfully, that baby was home in under a week).

4. Do all the things you would normally do for parent of a newborn – bring food, send cards, keep in touch via text messages (I personally loved texting – you can’t speak on the phone in the NICU, but texting was allowed. When I was spending hours in a hermetically sealed room, with alarms beeping around me, I was beyond grateful for the friends who sent me chatty texts, especially when they kept texting over a period of hours or days). Basically cultivate the same ‘it takes a village’ approach that you would if the baby was at home. Virtual support is still support, and it’s something you can offer even if you are far away or pressed for time.

5. Don’t assume the mum is getting sleep because the baby isn’t home. You are strongly encouraged to pump breastmilk for NICU babes, and for first time mums especially, it can be stressful and time consuming. And it has to happen on a regular schedule – so even if the kid is in the hospital, there is a good chance the mum is getting up every four hours to milk herself.

6. Do send media recommendations. I found most books to be a little too much for me, and I didn’t like to bring books into the sterile environment anyway – when I read them, I read them on my phone (sterilised daily with a Clinell wipe)(my husband brought gross dusty paperbacks in all the time, though, so – personal preference). But I read longform journalism, listened to podcasts, and while I was expressing I watched Netflix shows that I’d cached on my phone.

7. Don’t send pics of your healthy baby, if you have one. A friend sent a pic of her healthy, smiling newborn with the caption ‘forgot how great these smiles are!’ And I wasn’t angry, exactly, but I had two kids hooked up to machines in incubators at the time and I had a hard time mustering enthusiasm for her sweet healthy baby. I’m not proud of myself – I wish I had been more generous of spirit – but I don’t think I’m alone among NICU parents. Stupid healthy babies and their stupid clueless parents.

One in ten babies are born early or unwell, so hopefully this advice will never be pertinent to you, but odds are it will. That said – to avoid ending on a dour note – most NICU babes are just fine. A rough start doesn’t necessarily dictate what happens when a baby goes home, but it sure does suck while it’s happening, and having the right kind of support can be a huge help.

So let me tell you about this horrific pregnancy I just had.

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It turns out I have a lot more to say about parenting in the abstract – having branded myself, officially, as a Mummy Blogger (ugh) I’m all of a sudden at a loss for words.

You guys, I am never at a loss for words.

So I decided to go for it. 


The girls at about three weeks old (34 weeks gestation)

I’m writing this because even three months removed from the actual pregnancy, it looms over me, as I imagine it does for other women (and men, and people) who have dealt with a scary or high-risk pregnancy. I would have loved to read my story six months ago and I would love for it to be a source of strength for families at a different stage of their own experience.

Lucky you, though, I decided to save miscarriage and the NICU for another day.

In February I gave birth to two extremely tiny identical twin girls, Fiona (at 1.3 kilos or 2.9 lbs) and Daphne, who weighed in at 820 g (1.8 lbs). They were 31 weeks gestation and had suffered from selective intrauterine growth restriction, or sIUGR. Both were small for 31 weeks, but Daphne was barely on the charts – she was somewhere near the 0.1 percentile, whereas Fiona was somewhere around the 9th or 10th percentile. That is also small enough to be considered growth-restricted, and the NICU consultants told me she was probably also somewhat compromised in utero.

We were diagnosed with sIUGR at about 16 weeks and had weekly ultrasounds to monitor growth and, more importantly, blood flow in the umbilical arteries. The gist of sIUGR is that one baby has a larger share of the placenta than the other, but it is also common for the smaller baby to have a narrower umbilical artery and/or a bad connection between the artery and the placenta. In Daphne’s case, she had a cocktail. She had All The Things. It wasn’t a great situation. Once diagnosed, we had a target C section date of 32 weeks, though I held out hope that we could make it to 34 if we were lucky.

Every week, we would watch the blood flow in the umbilical artery to make sure, essentially, that blood wasn’t backwashing into the artery between heartbeats. When that happens, intervention often follows fairly swiftly.

Things were going pretty well, actually, until the 23rd of December, when I had a bleed. I was 23+6. As my legs shook and the midwife put in an IV, the doctor stood above my bed and said ‘I don’t think we will deliver these babies tonight, but that is just a feeling.’

They never figured out what it was, but after about three hours the bleeding just….slowed, and eventually stopped. I spent the night in Labour & Delivery drinking water, staring at the blue computer monitor, and schlepping back and forth to the toilet. When a nurse in green scrubs brought me tea and toast the following morning, I sat with the tray in front of me and sobbed.

The following week, there was backwash in the umbilical artery and it was time to consider laser ablation surgery. The procedure was effectively a selective reduction. While in rare cases, the smaller twin thrives after connections to the bigger twin are severed, in most cases, the little one doesn’t make it; instead, the larger one gets more time in utero and a substantially mitigated chance of profound disability. Our little one – already named Daphne – was so little that we had to assess her chances of survival at about three weeks behind her gestational date. So when she was 28 weeks, we looked at statistics for 25 weekers.

At 25+4, we went to London to meet with a specialist. The procedure is not performed past 26 weeks so it was absolutely our last chance. We knew the moment might come but it was an agonizing weekend. There was a very real possibility that, without intervention, neither girl would make it. But there was an equally real possibility that both girls would be just fine. There was no right answer, but we went to London having decided that the procedure was the best thing for our family. I was so sure we were going to do it that I had already contacted grief counseling services at our local hospital.

And then, magically, everything looked fine.

My husband had by this point taken to carrying around a thick stack of scholarly articles covered in pink highlighter, and I had taken a case-study approach – I had scoured the internet for similar stories. So it was both alarming and gratifying to see a team of six medical professionals from around the world clustered around the ultrasound machine, all trying to figure out what the fuck was happening in my uterus. Spoiler alert: they decided that 32 weeks was still a reasonable goal, and that 33 was not unimaginable, and sent us on our way. We got Japanese food and almost missed our train.

I’ve tried to be succinct here, so I will skip the part about how I had another bleed, spent another weekend in hospital, got put on monitoring, and then ultimately delivered due to complications entirely unrelated to sIUGR (high blood pressure and reduced foetal movement).

We delivered at 31 weeks via emergency c section, and our girls spent 9 and 10 weeks in the NICU respectively. Despite the fact that that is a helluva long time, they had relatively straightforward experiences, or at least it could have been much worse.

Today the girls are 15 weeks old, or 6 weeks and 2 days, adjusted. Both have begun to smile but prefer to look quizzical, gifting me infrequent but radiant open-mouthed grins. They have largely held their growth curves but I am optimistic that they will nudge up a few percentiles in the next few months. In short: it all sucked but we appear to be coming out the other side. At this point, my day-to-day experience of these babies is like any other woman with six week twins, and the most amazing thing is how quickly the NICU has faded behind us.

If you are a stranger on the internet in the throes of a scary pregnancy, and I can be of use, please let me know.

I’m back!

hello friends.


Its been about four years since I’ve been here. And life has gone on. Since I last blogged I had a son, and them, more recently, twin girls. And while sitting on my couch working my way through ALL OF NETFLIX with babies on my boobs, it occurred to me: ‘Snacks and Adventure’ is a really great title for a mummy blog.

I told a friend that I was thinking of becoming a (womp womp) mummy blogger and she told me she wasn’t surprised. I said ‘GOOD BURN! damn!’

And yet here I am, staking my claim. I’m a mummy blogger now, you guys.

Media Review: Stornoway, ‘Tales from Terra Firma’

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Stornoway is a remote part of Scotland.  It is also a hipster band from Oxford who released an upbeat, indie, vaguely Vampire Weekend-ish album called Beachcomber’s Windowsill in 2010.  I had kind of forgotten about them, but in early March they released a sophomore album, ‘Tales from Terra Firma.’  At first I was disappointed. It had many of the same things I liked about the first album; the lead singer has a quirky voice and the band still has their string-based pop sound, but it seemed to lack the clarity and brightness of the first album, which had melancholy songs that were still uplifting, like ‘We are the Battery Human.’

The sophomore album is a little more driving and a little muddier, although like the first album, its a record that is worth getting to know.  Highlights include ‘You Take Me As I Am,’ which is a little shmaltzy but an absolute delight to listen to.  ‘The Great Procrastinator’ captures the deceptive simplicity of their first album, and I found myself singing ‘The Bigger Picture’ the other day without knowing what album it came from, which is both a compliment to the second album and an indictment of it.  The best stuff is just like the old stuff, and some of it isn’t as good.

On balance, I like ‘Tales from Terra Firma,’ and I remain a pretty devoted Stornoway fan.  I’m very disappointed I won’t be able to see them at Wilton’s Music Hall in London this Friday (Wilton’s is on my to-do list) but they are touring some of my favourite venues in the US (Schubas in Chicago, TT the Bear’s in Cambridge, and Horseshoe Tavern (where I think I went once) in Toronto. Plus some other places, of course. You should check them out and report back.

The Sapphires: A Movie Review

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The Sapphires came out ages ago in Australia, and ages ago in the UK, and is just now arriving in the US.  I saw it on the plane from Vancouver to Auckland and have been mainlining the soundtrack for a couple weeks, as well as becoming an unironic Jessica Mauboy fan (she won Australian Idol and then starred in The Sapphires, which has led reviewers to call it an Aussie Dreamgirls…and that’s pretty on the nose).

The movie is based on the true story of a girl group made of Aboriginal (Yorta Yorta, to be specific) sisters and cousins who toured Vietnam entertaining soldiers in 1968.  It focuses on the self-identity of the members of the group, who find parallels between their lives and that of the African American soldiers they meet in Vietnam. The story is about the triumph of the individual women in the group, who are thrust into a world they could not possibly have been prepared for and who gain, over the course of the movie, a new perspective on their identity. Plus they learn fairly conventional things about love and friendship.

The movie is delightful.  While predictable in places, and understandably reminiscent of Dreamgirls, the film is prevented from total saccharine-ness by the backdrop of the Vietnam War and the very real persecution that these women faced well into the 1970s.  And the fact that its a true(ish) story makes the whole thing pretty easy to get behind.

And since the movie is set in the 1960s, the whole thing is thread through with Jessica Mauboy singing the lead on 60s classics, like the Jackson 5’s ‘Who’s Loving You’ and ‘What a Man.’  I was sold from the first lines, when three of the sisters sing Merle Haggard’s ‘Today I Started Loving You Again.’ Afterward, the man who subsequently becomes their manager, played by Chris O’Dowd upbraids them for singing country and not soul.  O’Dowd is as adorable, and maybe even more so, than in Bridesmaids and would be reason enough to see the movie.  But the rest of it is great too.

As I said, I saw it on a plane.  But I would happily pay $10 to see it in theatres and I encourage you to do the same. I’m sure the period costumes will look fantastic on the big screen.

Bumper Bars at Home (+ breakfast miscellany)

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Ian and I went to New Zealand for two weeks in February, and one of the most delicious discoveries was Bumper Bars, a quasi-granola bar/candy bar thing that we pretended was healthy because we were On Holiday.

The apricot-chocolate one was the best, and I’ve been wanting to recreate it since.  So I scoured the internet, found a Real Simple recipe, and made some improvements – i.e. added more chocolate and more apricots.

I made them with the idea that I would take them to work for breakfast, but Ian and I scarfed a third of the pan before they were even cool.  We’re calmed down, sliced them up and put the rest away, but its clear that my vision of a healthy granola breakfast bar hasn’t panned out – they are a victim of their own success.

I’ve been using Smitten Kitchen’s breakfast crumble recipe for a few months now – so much so that the guy at the Turkish International Supermerkert has commented on my plum consumption (he also asked me if I’d been swimming yesterday.  I hadn’t, I was just that sweaty after zumba class). I keep upping the size of the recipe and we keep eating it, and its a really easy way to prepare a week’s worth of breakfasts in one go.

Finally, I got into cacao nibs a few months ago, when I made cacao-banana-coffee muffins, which are delicious.  But the enduring success from the cacao experiment was refrigerator oatmeal, which I have been making several times a week since November – you soak oats overnight with milk, sugar, cacao and fruit.  Since I am less of a dirty hippie than I used to be, I use milk and processed sugar.  I eat it on the train while glaring at people doing their make-up (I mean seriously. I wish women would stop wearing makeup in general, but barring that, I wish they would stop putting it on while sitting next to me on the train).  I’m really sensitive to the smell of it, which makes me sneeze, and watching a woman with an eyelash curler in a public place just grosses me out).

Breakfast!

Big Night in the Big City

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On Friday, I went to see Paper Tiger Poetry in Vauxhall, a neighbourhood of London I’d never been to before. It was an open mic night with two anchor poets, Donall Dempsey and Hollie McNish.  You may have heard of Hollie; I’ve written about her before on this blog and was even present at the genesis of her most recent hit, a commentary on Flo Rida’s ‘Blow My Whistle.’ I’m taking credit for having inspired the bit about zumba, as well as the last line that I don’t want to spoil.

Anyway. I invited My Friend Kamilla to Hollie’s gig.  The two anchor poets were great, and there were some notable successes who gave open mike presentations, and the whole night finished with a group singalong in honour of St. Patrick that I thought was absolutely fantastic. Also, the venue was the Tea House Theatre, which was a delightful spot.

However, there were some notable failures – enough that, when we adjourned to The Black Dog hipster pub down the road, Kamilla and Hollie and I kicked off a round of ‘which open mic poet would be your secret boyfriend?’ (it was almost all dudes) that lasted more or less until the bar closed.

Media Review: Josh Ritter, ‘the Beast in its Tracks’

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Josh Ritter is amazing.  I have thought so for years, so you can probably tell from that what sort of album review I’m about to write.

‘the beast in its tracks’ is a beautiful album, full of Ritter’s signature elegance and clever lyrics, though his amazing allegorical ballads are conspicuously absent from this release. He married fellow singer/songwriter Dawn Landes in 2009 and split with her….just before he started writing this album.

Instead of the storytelling songs like ‘the curse’ and ‘the temptation of adam’ (my personal favourite Ritter song, about a couple who live in a bunker safeguarding a nuclear weapon), these songs are straightforward.  This is A Breakup Album and Ritter is telling it pretty straight, including the pathetic and sad bits. Furthermore, the album is more or less chronological (or could be), starting sad, becoming in turn vindictive and pathetic, and finally finishing on a note of acceptance with ‘Joy to You Baby,’ an absolutely lovely song that people took far too long to post guitar chords for.

The raw honesty of the album is most clearly revealed on ‘New Lover,’ with the lyrics:

I hope you’ve got a lover now, hope you’ve got somebody who 
Can give you what you need like I couldn’t seem to do. 
But if you’re sad and you are lonesome and you’ve got nobody true, 
I’d be lying if I said that didn’t make me happy too.

In typical Josh Ritter fashion, these lyrics are delivered alongside a driving beat and a catchy melody, such that I didn’t notice until the third or fourth time just how…brutal…the lyrics were, and when I did, it was enough for me to say, out loud, ‘holy crap!’

Fortunately I was working from home so my coworkers didn’t have to share in this little revelation.  In the videoclip below, the giant smile on his face obscures the punch of the lyrics, too;

[http://www.youtube.com/watch?v=GnJfnaQAjXs]

The album has been out in the US, UK and Canada for about ten days, so I’m a little slow on the uptake; if you want more info, I recommend checking out NPR’s concert link from World Cafe; if you’re on the fence about the album – just go buy it. It’s wonderful.

 

Django FanGirls

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django

Battersea High Street is a train, tube and bus ride away from my home. But its a place I’d been wanting to go for a while – not because the street is that great, but because if you turn off it, and walk down some nondescript residential streets for about five minutes, you will find yourself at Le QueCumBar, one of the most famous gypsy jazz venues in the world, decorated with portraits of Django Reinhardt, with tasseled lamps and surly-cute waiters with piano braces/suspenders (the poor bastards, I’d be surly too).

My friends Mary and Kamilla and I went to Le QueCumBar on a Tuesday in February, on a jam night (I have since learned that its called a Djam). the night we went, there were about ten people who rotated in and out all night – all ages and many instruments, but only one woman, who kicked off the night.  After the first few songs, Mary said ‘how do they just do that?’ And Kamilla, who is a professional musician, looked at Mary like she was nuts and said ‘practice.’

In addition to a night of amazing music in a very idiosyncratic venue, it was a night where everyone was nerdy in their own way: Kamilla talked about music; Mary talked about literature; I talked about birds (Kamilla got psyched about birds with me, which I appreciated more than she could have known.  We had a whole talk about the wingspan of albatrosses.  Seriously, these people are friends to hold onto.)