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Tag Archives: NICU

The Tiny Baby Blues

26 Tuesday Dec 2017

Posted by frannyritchie in babies, Delivery, Early Days, Parenthood, pregnancy, Uncategorized

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complicated pregnancy, early days of parenthood, Family, iugr, multiples, NCT, NICU, NICU aftermath, Parenthood, premmies, sIUGR, twins

I met a family last week who had an extremely premature baby. I had two extremely premature babies, but this baby was so premature that I was reduced to saying, essentially, ‘oh, shit, that’s an early baby.’

I have been thinking about that family a lot since. They arrived at the NICU – our NICU – a couple months after we left and stayed for a long time, though they are home now. But I keep feeling regret for them – not that they spent four months with a baby in the hospital, though that sure sucks a lot – but that they left the hospital without the resources that they would have had if things had gone more smoothly. Its hard to make friends with other parents when your experience diverged so sharply from everyone else’s so early, and its hard to settle into a rhythm as a new parent when you feel alienated from everyone else and their robust, healthy, oxygen-free newborns.

When I was pregnant with my first child, my husband and I did a birth-prep class. We had been warned that the content was not especially useful (it wasn’t), but that there was a lot of value in meeting your classmates – classes are organised by neighbourhood, and we live in an extremely fertile area, so our classmates lived around the corner, down the road, up the street – we were extremely geographically concentrated. When one of the babies was born early, the father sent an email to all of us saying how nice it was to meet everyone and he hoped to see us again soon sometime.

We had a good laugh about that at our fourth annual birth-prep group holiday in October. We saw each other almost every day all summer, and are still in regular contact with virtually everyone in the group, which has swelled (with second and, in our case, third children) to 32 people.

My group are outliers; most people don’t end up taking regular vacations with their parenting classmates. But most people do leave the hospital with a roughly shared experience of birth and new parenthood. Plus a baby. Most people leave the hospital and take their child with them.

For NICU families, it isn’t like that. I found it relatively easy to leave my daughters behind, not because I’m a callous witch, but because they were clearly…not finished. They were in incubators and they clearly needed to be. I found it harder at the end, when we were in sight of a finish line that never seemed to get any closer, and the girls looked and acted like babies instead of fetuses.

Still, from the moment they were born, I thought they were perfect. I wanted to tell people about my gorgeous twin daughters as much as any other new parent. When I was two weeks postpartum, I took my son to a birthday party and people asked how I was. It was only as I watched their eyes widen that I realised I had to adjust my rhetoric a little. ‘I just gave birth to tiny, perfect, extremely premature babies!’ isn’t exactly cocktail fodder. No one knew what to say. I skipped the next preschool party.

Of course there are families in the NICU who are going through something similar to what you’re experiencing. When people ask if I made friends in the NICU, I say ‘well – Facebook friends.’ I did meet people whose acquaintance I value, but none of them live within a twenty mile radius. Catchment areas for Category III (most intensive) NICUs can be huge; there are only a few in the UK. There are always families coming and going, and there is a hierarchy. One woman took weeks to warm up to me, presumably because her kid was having a rough go and she didn’t want to deal with another baby having an easier time than hers.

So I’ve been thinking a lot about this family I met recently, who had four crummy months in the hospital only to find themselves starting from a different place than everyone else who has a baby the same age (actual or adjusted) after they got discharged. I’ve wondered what could be done to make it easier for them, and I’ve wondered what I could do without coming across as an overzealous weirdo. I haven’t come up with much so far.

 

 

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World Prematurity Day 2017: Reflections

28 Tuesday Nov 2017

Posted by frannyritchie in babies, Early Days, Parenthood, Uncategorized

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Addenbrookes Hospital, babies, NICU, preemies, premature babies, prematurity, Rosie Hospital, World Prematurity Day, WPD

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.

The That Stupid Pampers Ad

27 Tuesday Jun 2017

Posted by frannyritchie in babies, Early Days

≈ 1 Comment

Tags

advertising, bliss, blisscharity, NICU, pampers, preemies, prematurebabies, prematurity

pampers

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

Posted by frannyritchie in babies, Delivery, Early Days

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Tags

Addenbrookes Hospital, breastfeeding, breastmilk, breastpumping, breastpumps, breasts, Delivery, Early Days, labour, Lady Mary Ward, NICU, preemies, premature, premature babies, pumping

[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

Posted by frannyritchie in Uncategorized

≈ 6 Comments

Tags

babies, breastfeeding, high risk pregnancy, hospital, NICU, parents, preemies, pregnancy, premature, premature babies, self-care

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

Posted by frannyritchie in pregnancy

≈ 1 Comment

Tags

Family, high risk pregnancy, managing expectations, NICU, preemies, pregnancy, premature, premature babies, rough starts, supporting families

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.

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