Tag Archives: preemies

This Postpartum Body

18 Wednesday Apr 2018

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I often joke about my uterus deserving a participation trophy: it tried, bless it, but it really wasn’t totally up to the task. My first child, though term, was so small that he was barely on the growth chart (he was, and is, developmentally fine – he was just small for gestational age). My second pregnancy lasted eleven weeks and one day. My third time, I made it to 31 weeksbefore delivering two babies, by dramatic emergency c section, whose combined weight was less than my first child.

I have stretch marks, but because all my children were so small, I don’t have the dramatic diastasis recti or saggy skin on my stomach that is the aftermath of a healthier twin pregnancy. I’ve mostly lost the weight I gained and am at the same weight now as when I first got pregnant. I don’t really have much to complain about, really.

Of course that’s not stopping me. I have recently stopped breastfeeding so the last hope I had of blaming the babies is over and I am coming to final, depressing terms with my body. This is what I’ve got. It works. I can run and jump and swim and dance, and I so grateful for that. But when I do any of those things, I shake and jiggle and flop, and that’s a little harder to appreciate.

I went to get fitted for a bra recently, because my shape has changed in my post-breastfeeding life. The woman assigned to do my fitting told me, with a sour face, that my breast tissue was wide, wrapping around my rib cage more than most women’s. And I wanted to snap ‘yes, I know, they’re pancakes. Now get me a damn bra that fits anyway!’

She brought me a few options, including a hilariously awful old-lady bra in hot pink (so bad I sent a pic to my sister with the caption ‘fml.’) In the end, though, I bought a sports/yoga bra and ran out of the shop; a different woman at the checkout said ‘oh these are brilliant – though of course you can’t wear them during the day’

And I wanted to weep with frustration. Even worse, I have worn it exclusively since – I don’t have a *better* option.

I had thought in the past that I might like to get plastic surgery. Thirty-four is too young to be done feeling happy with your body, and all the cardio in the world isn’t going to change the fact that I breastfed three kids. When I think about it now, I tell myself that as a mother of daughters I need to set an example, but really I’m just too cheap and pain-averse to do it, not to mention too lazy. And my husband thinks I’m being ridiculous, which is…good, I guess? He says ‘You don’t have teenager breasts. You’re not a teenager!’

In the last few days, my son has taken to saying ‘silly old mummy!’ – a phrase he learned from Winnie the Pooh. When I told him I didn’t feel old, he said that I was objectively old and I should get used to it (I paraphrase). Maybe my discomfort with my body is an outgrowth of the fact that I may not be objectively old but I am objectively middle-aged and that, well, sucks. I don’t want to be a teenager, but I don’t love watching my body deteriorate either.

I spent a lot of time wishing that I could have carried my girls longer: every extra day, we clawed back the chance of infant mortality or cognitive impairment. Extra baby weight or diastasis recti was a small price to pay for a diminishing chance of major developmental delays. My medical team was thrilled that we got to 31 weeks, but I still wish I could have done better, even a year later, when everything seems to have turned out fine. It doesn’t keep me up at night anymore, but if I could trade my physical presentation for my daughter’s health, obviously there’d be no choice. Since that is a given, I feel guilty that I have spent so much time in the last few months being frustrated with something I can’t change and wouldn’t want to anyway. If given the opportunity, I’d want exactly the kids I have and I’d want to breastfeed them again, and if pancake breasts are the price, well. That’s that, isn’t it?

BUT SERIOUSLY I wish I could have it both ways. Surely that’s not too much to ask.

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Christmas frickin’ Magic

29 Friday Dec 2017

Posted by in babies, Parenthood, pregnancy, Uncategorized

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The last two Christmases have not been fantastic.

Last year, I finished work on Friday, 23 December, and sat at the kitchen table ready for the holidays. I remember saying ‘I am so excited!’ about an hour before I went to the bathroom and saw blood in my underwear.

For most women, that’s called a menstrual cycle. But I was 23 weeks, 6 days pregnant. I had had an ultrasound earlier that day and it had been positive – it was a high-risk pregnancy but things were generally stable and I left feeling lighter than I had in the past. I was on the cusp of viability! This was HAPPENING!

I was at the hospital less than half an hour later.

The same doctor who had scanned me earlier that day came in, and confirmed that I’d had a bleed but that both girls were still moving. It looked like it might just be a one-off, and then it happened again. And again. And faster and faster.

I chugged water from paper cups in the triage area, running laps between the bathroom and our curtained-off area. A couple hours later, I was transferred to Labour & Delivery – not a positive sign – where I thankfully had a private room with ensuite bath (not all rooms do) and could schlep between the bed and the toilet. I noticed a tiny new stretch mark, running north from my bellybutton, and stared at the blue screensaver on the computer kiosk in a corner of the room, only realising the next morning that I could have turned off the monitor. But by midnight, the bleeding had just…trailed off. The same doctor – bless you, Catherine Aiken – came in to discuss delivery and steroid shots (I got one) and the NICU team came to prep me for the worst. Daphne was 400 grams at that point, and would not have been expected to survive; Fiona, at about 540, stood a fighting chance. Ian went home at about one in the morning and I spent the rest of the night the same way – staring numbly into space, trying to sleep, punctuated with trips to the toilet that confirmed I was mostly not bleeding anymore.

The next morning, a midwife’s assistant brought me tea and toast. I sat on the inclined bed with a Styrofoam cup of tea in my lap and sobbed and sobbed, while my daughters – now an even 24 weeks, and officially Viable as far as the medical establishment was concerned – wiggled and thumped inside me.

I was retrospectively diagnosed with a partial placenta previa, a complication that can be fatal to mum and baby – or can be so minor as to barely register as a complication at all. I left the hospital on Boxing Day, and we had family Christmas two days late. A week later, I had another bleed – a much more minor one – and spent New Year’s in the hospital. And that was last year’s holiday season. Yippee!

That would be enough to feel like I had to bring the Christmas Magic this year, but it turns out there is a theme. Two years ago, I had a miscarriage at 11 weeks pregnant (later diagnosed as having been caused by Graves’ Disease – basically an overactive thyroid), on the 17th of December. It had been an easy, breezy pregnancy to that point – things had gone 100% according to plan with minimal morning sickness, and once we crossed the 9 week mark I thought, ‘well this is fantastic; my chances of miscarriage now are like 2%’

Well, someone has to be in that 2%.

My memories of the miscarriage mostly involve crying: at the ultrasound, when they confirmed there was no heartbeat; in the shower, on the toilet, in my mother’s arms when I found the ‘big brother’ shirt I’d ordered to my parents’ house. Eventually I found a grief anthem: I would sing a chorus from a Ben Folds song and allow myself to feel All the Feels – sometimes I sang it twice – and then I’d pull myself together. All the same, it was a rough few weeks that stretched into months, when we learned that I had to wait until my thyroid was managed to try again.

This year – and every year from now on – I am free from reproductive stress. Our family is complete; this uterus has closed up shop. But as the 23rd of December approached, and I realised that last year would cast a longer shadow than I had anticipated, I felt a lot of self-inflicted pressure to make this holiday special. To start new traditions that would drown out the stress and disappointment of previous Decembers. To celebrate that we had come out of a difficult couple of years with three healthy children. Basically, to create Christmas memories that would drown out the crumminess of the last two years.

Here is the problem: my baby daughters don’t care; my husband doesn’t care (at least not nearly as much as I do); and my son just wants to eat treats and open presents, and will have only the haziest memories of this year if he has any at all. All five of us have colds, except for Theo, who is stuck at home because nursery is closed for the week and is going stir crazy. Holiday perfection has taken a backseat to sleeping and trying not to succumb to our desire to just plop our three year old in front of Paw Patrol and call it a damn day.

Where there has been magic, it has been incidental, which I guess is a good lesson to take from the festive season. Daphne waved at her grandparents and aunts during a Skype call on Christmas, a development that is way ahead of schedule and for which there were many witnesses. In the last four days, Fiona has become an indisputably mobile baby. She doesn’t go fast or far, but she doesn’t stay where you put her, either. Theo’s math skills have taken a step forward – when counting pound coins he received with a piggybank, he got to 8 and said ‘I think I have ten!’ And all three children started playing together for the first time when their new toy, Wobble Bear, was placed between the three of them, which felt like a freaking Christmas Miracle. Some of this stuff was facilitated by Christmas, but its mostly every day stuff that we noticed because we’re all sitting around driving each other a little nuts.

It will take more than one week of bad weather and sick children to erase the scary sadness of the last two Christmases, and an insistence on a CHRISTMAS FAMILY BRUNCH, DAMMIT are probably not going to help. But that’s a lesson in and of itself, and I will take it.

World Prematurity Day 2017: Reflections

28 Tuesday Nov 2017

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Last week was World Prematurity Day, and I took the girls back to the Rosie Hospital & Addenbrookes NICU – the hospital where they were born and the ward where they spent the first two months of their lives – for a reunion with the staff and some of their old roommates.

The event was 100% totally sweet. We paraded through the halls of the hospital with little tea lights, wearing purple (the colour of prematurity and also, I recently learned, of pancreatic cancer), and then convened in a hospital seminar room with a table of cakes and tea and coffee for a reception that lasted about 45 minutes. And then we left. It was perfect.

Many of the NICU staff had provided baked goods and there was a great turnout from consulting doctors and a few of the nurses (many, of course, were working and not able to come). Seeing the staff, the people who literally saved our children’s lives, was fantastic, and while I appreciate it wasn’t at the top of their list of things to do, I wish I’d been able to see more of them. Sarah and Sophie from room 7 or Denise and Ben from room 12…I get a little emotional thinking about it, even now. The NICU staff made it possible for me to go home and sleep every night even when Fiona’s oxygen needs were going up or when Daphne had green goo coming out of her stomach. They took care of my daughters when I couldn’t, and I will never be able to say thank you enough. I hope they know that.

None of the midwives or maternal consultants were there, which is a shame – because as critical as the NICU nurses were, the only people I wanted to see more were Kasha and Catherine, the doctors who watched over my uterus week after week and then ultimately delivered the girls by emergency C-section. Catherine came to debrief me before she left the hospital, as I was coming down off the heroin derivatives you get when you have a c-section, too, which was awfully kind,

There were probably about fifteen families, mostly with children under a year old, including at least two women casually slinging oxygen for their baby and a six-month-old three-month-old who looked like the tiniest old man you’ve ever seen.

A number of our girls’ NICU contemporaries were there. In December of last year, there was a family of quads born at 27 weeks at the Rosie, and the smallest of them ultimately spent over five months there. They were all there and were, naturally, like visiting celebrities. There was another family of twins born two weeks after mine who were our roommates for a couple of weeks and two other single babies whom I hadn’t actually ever seen in person – I’d just seen their mums in the pumping room.

It was a funny thing. I know these women (it was mostly women, because the milk kitchen was where the bonding happened) from one of the most difficult phases of  our lives. Our children spent months occupying the same rooms and our breastmilk sat side-by-side in little purple trays and we passed each other in the halls wearing pyjamas, or swallowing tears en route to the toilets. We chatted through the beige curtains to  background music provided by Medela breast pumps and then swore at the bizarrely hot tap water we used to wash our pump parts, exchanging small talk as we each microwaved our steriliser bags for three minutes.

I liked a lot of the people I met in the NICU. The super-religious family; the family with a silent husband and a wife with more than enough personality for two; the couple with a dad who was always dressed in expensive loungewear; the French woman who showed up two days postpartum with perfect hair and makeup; the ones who always ate tinfoil-wrapped sandwiches in the parents’ room and the American military man who thought my excitement over Teddy Grahams was hilarious (I mean, it was). But when people ask if I made friends, I say ‘well…I made Facebook friends.’

It was so good to see these families again – with parents looking less wan, mums looking slimmer, and babies looking chunky and normal. I’m so pleased I got to go, and to show off the girls a bit too. But it is also funny to think – given all the solidarity I got and gave with these people – that actually, half an hour of shmoozing turned out to be just about right. I walked back through the hospital and packed the girls into the bike, grateful to have seen everyone and even more grateful to be leaving the hospital behind for a while.

Prematurity on TV: Black-ish Season Finale

10 Sunday Sep 2017

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I’ve seen a few episodes of the American sitcom Black-ish, which will be returning for season4 on 3 October (in the US. in the UK, who knows? I saw the finale at 10 am in the morning on ITV. I think.).

Season 3 had centred on the late-in-life pregnancy of the female lead, Rainbow, and the finale gave a mostly-accurate depiction of a sudden, scary turn: she developed pre-eclampsia and delivered the baby two months early (so about 32 weeks gestation).

I wrote about prematurity as depicted by Pampers  a couple months ago – in general, I would say, pop culture doesn’t have much of a track record addressing prematurity. Which makes sense: prematurity is not telegenic. Preemies can be ugly or scary or just a bit too….fetal…to be comfortable to look at. They are tiny and fragile and hooked up to all sorts of crap.

Black-ish did a pretty great job with the maternity stuff; everything they said about pre-eclampsia was correct, and the parents’ fear and panic was pretty on point too. But then the show was stuck with a premature baby that they had to deal with, and that’s where I thought the show went off the rails a bit.

First of all, that baby was gorgeous. Small, but chubby. Not hooked up to any breathing apparatus. No long lines, or lines of any description. No incubator. Just a few monitoring devices so we knew this was Not a Normal Baby.

I mean, I understand. I thought Daphne was gorgeous straight out of the womb. In the first picture ever taken of her, she has one eye just cracked with Not Impressed expression that remains her trademark seven months later. Watching from the operating table, I saw the nurse hold up my tiny 2 lb baby and I knew that things couldn’t be that dire or they wouldn’t be hoisting her up like Simba for photo ops. But really, to the untrained eye, she looked pretty raw. I had that picture printed but my mother suggested I not send it to my grandmother. I look at it and think, ‘damn, my baby is a fighter’ but in retrospect I can see how other people would just react with alarm.

Preemies are alarming. But the show could easily have circumvented the need for a close-up by showing an incubator (also called an isolette), or by simply reporting on his condition. Instead, they made it look like the scary part was over. Anyone watching would see that baby and think ‘oh, that’s not so bad, he looks fine.’

I realise I am complaining about a sitcom, and I shouldn’t hold them to documentary standards, but the experience of having a premature baby doesn’t end a couple days postpartum. The fact that the girls were early is still very much with us seven months later (five months adjusted), and will likely stay with us forever, in the form of soft teeth of poor vision or attention or behavioural disorders. We are very lucky that the biggest thing they faced in the NICU was ‘smallness’ – they were just really, really tiny. Daphne was so small that, for a long time, she kept cutting off her own airway when she moved her head. She just didn’t have the strength/maturity not to.

September is NICU Awareness Month. The show originally aired this spring, but it seems fitting to me to talk about it now, after it ran in the UK. Most NICU babies are, in the grand scheme of things, Just Fine. But they are fine because they have the benefit of an incredible amount of care and support and science: they NEED incubators and long lines and various unpleasant, humming machines, and for a television show to skip that part of it – while demonstrating the very accurate fear and anxiety of the parents – is to do NICU babies, and neonatology in general, a disservice.

The That Stupid Pampers Ad

27 Tuesday Jun 2017

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Still from the exploitative Pampers ad

Maybe you’ve seen it – a Pampers nappies ad full of premature babies looking impossibly tiny and fragile (one looks a lot like Daphne did when she was a few weeks old) with swelling music and captions like ‘when you arrive early, every day is a battle.’ There are packs of Pampers nappies interspersed throughout the ad and a close up of adults hands holding a doll-sized nappy, for scale.

Pampers has unveiled their micro-preemie nappy – until recently, the smallest available (for commercial or hospital use) were for 2-5 lbs (1-2.5 kilos). They have donated three million tiny nappies to hospitals around the UK and have also sponsored a social media campaign, #powerofbabies, where parents are invited to tag pictures of infants with a raised fist. For every hashtag, Pampers will donate £1 to Bliss, a charity that supports families of NICU babies (‘For babies born premature or sick’ is their tagline).

I have a lot of feels about this ad campaign, which was launched on 26 April 2017 (or at least that’s when the HuffPost published an article about it). They are mostly negative feels.

On the one hand, it is amazing that Pampers has found a way to support micro-preemies, who are classified as babies weighing less than 800 g (1.8 lbs). Daphne was 820 g when she was born, so I have a firsthand understanding of just how tiny that is. The partnership with Bliss is great – they were amazing when we were in hospital. And three million nappies is a lot of nappies.

On the other hand, the ad feels exploitative and gross. It has a triumphant narrative – as, thankfully, most NICU journeys do – but it shows actual footage of preemies and parents in the hospital. Its using people’s personal tragedies for commercial gain. Furthermore, those nappies are not commercially available: they don’t need to be. There is no world in which a 1 kilo baby is anywhere but the NICU. And while Pampers may have made a cracking nappy, we used generic micro-preemie nappies for Daphne with no visible advertising before she graduated to Libero premature newborn nappies, so I can confirm that their claim to have revolutionised micro-preemie diapering with their new nappy does not hold up. And the #powerofbabies tag, which as of today has 1,517 posts on Instagram, is another opportunity for Pampers to leverage premature babes’ tragedy for commercial reasons. The one-minute advertisement has 90k views on YouTube.

In the end, it feels exploitative: the advertisement is leveraging people’s tragedies to hawk a product you can’t even buy. The donations with which it is coupled feel mercantile rather than altruistic. And while I am very much a believer in the #powerofbabies, I can’t quite bring myself to start tagging my Instagram posts accordingly.

 

Boobs.

15 Thursday Jun 2017

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[Usual disclaimer about how I am not a medical professional, breast feeding peer supporter or anyone with any official knowledge about breastfeeding]


Its kind of lunacy to think that I can contribute anything much to the world of online breastfeeding resources when a. its extremely well-trod territory and b. my qualification is, I’ve done some breastfeeding. Both times I had a stressful start: with my first, mostly because of incompetence; the second time, there was that whole NICU thing.  But both times I gave birth, my baby had a nasal gastric tube. Theo had low blood sugar and, though he was full term, was tiny; he had a feeding tube put in directly after birth and spent an afternoon in Special Care. He was also born with an infection and was floppy and lethargic for the first 36 hours of his life, even by newborn standards.

Both times I was desperate to breastfeed. The first time I just couldn’t get the damn baby to latch. I ended up exclusively pumping after failing, every three hours, to get a latch, then dumping milk and formula down the NG tube into his stomach. The midwives didn’t believe me, but the whole depressing ritual – fail to latch, feed, pump, sterilise – took about two hours and forty minutes, leaving you with twenty minutes before it was time to start again. I have confirmed with other women: no matter how long the health professionals say it should take, it takes 2 hours, 40 minutes. For the first several days, no one bothered to tell me that you can pump on both sides simultaneously. Our hospital doled out single-breast packs (one bottle, one set of vacuum parts) and everyone on the ward shared a communal pool of hospital grade pumps.

On the third night, I called my husband, who was asleep at home, to act completely insane and accuse him of failing to support me in my attempts to breastfeed. I have no memory of what behaviour  of his set  me off, but I do remember that trying to get Theo on the boob had left me shrieking in frustration. I mean,  in the normal course of things, I’m not much of a shrieker.

Anyway. The thing that I originally wanted to impart is this: I have had three occasions where I have had kids on NG tubes and have had to introduce breastfeeding slowly, instead of doing the normal thing where you have a kid, put the baby on the  boob (or the bottle), call it a day and go home. Even if you do have a lot of success with breastfeeding (in which case, pin a rose on your nose) it can still be painful, time consuming, frustrating….my sister said she was glad she knows, from my experience, that feeding is not an easy and magical experience. And it seems obvious to me now, but three years ago I thought that I would have a baby and they would eat. I thought it was something I could prep for with classes and research. I was wrong.

That said, if you are in a situation similar to mine (especially if you have preemies) there are some things I recommend. First, it is important to be proactive, even if your child will not immediately be taking milk (ie if they are on liquid nutrition to start). You can start hand expressing immediately after birth, and – new in the last couple years – medela, the most common supplier of hospital-grade pumps, has created a ‘preemie initiate’ setting that stimulates the breast before hand expressing.

If you want to breastfeed, the best hing you can do is get after it. Milk yourself every three hours – the way a baby would if they were eating. Only expect a tiny amount at first – colostrum, the milk that comes right after birth, is meticulously collected in il syringes. But if it hurts or you aren’t getting any, ask for help: nurses, midwives and care assistants have experience milking new mums, and they’re probably better at it than you are. If your hospital is stressed for resources, ask for a lesson and have your partner help you collect it. It’s not dignified but…well…you get over it quickly. On my fourth day postpartum, I so get out one of the women who had helped me eke out my first drops and proudly showed her my freshly collected 35 mils. I actually got a little choked up – it was a mix of gratitude, pride, relief and Hormones.

Basically the biggest lesson – which I suspect is a theme – is advocate for yourself. Failing that, prep your partner and have them do it for you. There is no way to physically prepare for breastfeeding, so the best thing you can do if it doesn’t come naturally is ask for help – loudly and repeatedly if needed – and be patient with yourself.

And if, after all that, it doesn’t work out or you decide you actually kind of hate it, buy some formula and move on.

Tips on Surviving the NICU

09 Friday Jun 2017

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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

03 Saturday Jun 2017

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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.

30 Tuesday May 2017

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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.