I was told she would pass away at birth, so no discussion was had about breast feeding - when she miraculously survived the first few hours, we started with syringes. The ‘standard procedure’ was sucrose drops, but luckily for me my *MCA, in her optimism, brought a syringe of the colostrum I’d collected and, before Nina had her ‘swallow test’ with the SLT, went ahead and tried her with some! By day 1 she’d blasted through all the colostrum I’d collected pre-birth (that I’d intended to donate).

BTW I had a C-Section at 42 + 2 weeks, my milk didn’t come in for 3 days. Day 2 we had the ‘swallow evaluation’ with SLT and she was pronounced as having a ‘safe swallow’ (not true, as it turned out - so an unsafe swallow is not the absolute end of the story, if that’s your diagnosis). Day 2 was a crux moment and I wish I’d tried breast feeding with the SLT checking - would recommend you try that even if it seems impossible. However, we tried a bottle and it worked!

An important moment happened then: a NICU nurse came in and told me Nina wasn’t having enough milk and needed a feeding tube. I was already collapsing from the trauma of the circumstances around her birth, and I could have completely deflated…instead I took a breath and said:

“Okay, you’ve told me my baby won’t survive, that IF she did survive she’d be on glucose drops; Now you are telling me she may survive, she needs milk, she has a quota and I’m already failing to meet it, so you’re giving her a feeding tube?… No, no thank you, you’re going to give me 24 hours to get her up to quota and then we can talk tomorrow.”
It took a lot to make that statement, and it took a lot to get through the next 24 hours, but we did it and she made her quota…and that simple step saved us from a feeding tube that week. I’m not saying an Ng-tube is a bad thing, it’s a life saving intervention…but sometimes it’s worth a pause before we leap to it, because always in a medical reality there are pro’s and con’s, and medical Mammas need to hold them both and then the consequences…we can do that better when health professionals share the facts with us with patience and open mindedness.

Nina made it through those 24 hours, I hand expressed milk into cups as we tried various feeding methods. I highly recommend cup feeding to avoid nipple confusion, this is a great technique and if I’d been more confident, would have been my preference until I could get with the breastfeeding. As it was we focused mainly on finger-feeding, and side-lying paced bottle feeding. IF ONLY I had known to pump every 3 hours as soon as my milk arrived (if not from day 1). Instead I was putting cabbage leaves on my breasts and this I do not advise if you want to build a breastmilk stash and keep up your supply.

I’d sneakily tried Nina on my boob the night she was born, she opened her mouth and seemed interested but didn’t suck at all. I was so scared - I thought she might stop breathing or I’d get in trouble! We kept trying her every feed but she seemed to become more and more upset each time :-(

On the 12th day everything went downhill, my milk suddenly reduced hugely, I went from getting 180 mls per pump session to 50mls at most.

At that point Nina was getting livelier, and she SO CLEARLY wanted to breastfeed, I’d hold her to my breast, but she would get so confused and frustrated and pull and tug at my nips with her little toothless mouth! However when I put my boob in she’d leave her mouth open and flail around while I was like “it’s here! It’s right here!” She had also developed a preference for bottles by that time, the bottle led to nipple confusion, my continued attempts led to breast aversion. We had immediately bottle fed her because (a) everyone assumed she couldn’t breastfeed and (b) everyone wanted to monitor her mls - once again the medical approach to monitoring, while understandable, negated the magic of motherhood and milk.

Even though I tried expressing for a few minutes beforehand, rolling my nipple and various latching positions, nothing replicated the bottle and that first big easy flush of milk they get from a bottle.

Cut to 6 weeks, I’m home from the hospice, she’s still alive, but she’s choking a lot on bottles now - small cerebellum = disco-ordinated swallow, not a safe swallow after all but only intermittently so. I’m finger feeding with my little finger and the screw top syringe with a tiny milk straw attachment that the hospital gave us just in case, the benefit of this is I can do jaw strengthening exercises with her.

It occurs to me that if the syringe of my breastmilk gets her sucking...maybe it will work on my boob???

So we try this:

I fill a 10ml syringe with my breastmilk. Her dad holds it close to my boob. I get my boob on her chin and she opens up. As she does he slips the NG tube into the side of her mouth and very quickly gives her a squirt of milk. The milk acts as a catalyst to get her sucking, by the time she’s got to the end of the syringe she’s started my flow AND we’ve created a neural pathway associating boob with milk and sucking for her.

(It’s a bit like the *SNS system but we take out the syringe when it’s empty so she can properly suck on my nipple, also, I was unable to get the SNS tube into her mouth due to how she latched.)

This technique literally taught my baby how to overcome her breast aversion, and learn to breastfeed. It took from week 6 to 12 to get it established, as her father could only help occasionally (we’d recently separated), so in the day she was still finger feeding while I pumped 8 times a day. Though I offered her boob before every pump session, and if she refused, I did not force anything, this also helped to stop reinforcing the breast aversion.

A SUPER important point - be VERY careful with the syringe and milks straw tube as you slip it in the side of baby’s mouth, so as not to poke her in the mouth or throat at all. Her father would lean his hand on my boob and anchor it so the syringe didn’t go deeper than my nipple, just like with an SNS, and sometimes we’d even tape the milk straw tube attachment to my breast.

A further helpful tip was advice on the ‘Dancer Hold’, especially helpful for babies with low muscle tone.

Ironically the whole reason I had the syringe with the milk straw attachment in the first place was because of her condition. It was a strangely fortunate series of events…including when we went back to the NICU for more, and found a nurse who gave us some without realising we apparently weren’t ‘meant’ to have anymore, after that we were cut off :-( But where there is a will there is a way.

(This was the pumping bra I used) *🙈 A moment to appreciate my gigantic body and how good it feels to be/see the rawness of this post partum reality ✨

Nina still had a weak suck and simply by feeding she lowered my supply, so I had to pump alongside feeding - triple feeding - something to bear in mind. And a word on pumping: removing milk is the only proven way to increase supply. I pumped every 3 hours but at night I also did a ‘Power Pump’. Put simply, you pump for 10 mins, wait for 10mins, pump for 10mins, wait for 10mins, pump for 20mins. And ideally you do it between 2am and 6am because the Gods in their infinite wisdom decided that this is what Prostaglandin is highest. Excellent. Thanks guys 🙄 (Results of my pumping efforts 👇)

A reminder that this whole process took 6 weeks - when her father was around we repeated the milk straw technique up to five times a feed, and she’d still sometimes refuse, so we’d continue with finger feeding until she choked, then bottle feeding until she choked again :-( I had such doubts the whole time…Until Nina started breastfeeding well at 3 months, and breastfeeding exclusively at 4 months ❤

ANYONE watching us would have said “that baby needs a feeding tube”...and in reality, she would have gained weight faster if we’d done that. However, if we had done that, she would also have experienced muscle stagnation and possible atrophy, oral aversion, and that could have led to a Peg surgery, on top of that her (floppy) epiglottis may never have strengthened and her blue episodes would have likely continued longer than they did.

I truly believe that because of the decision I made here, Nina has benefitted, my instinct was right that she would stop choking the moment she started exclusively breastfeeding and that’s exactly what happened - but I also still feel guilty often and worry about the cost of it. So if you’re experiencing these doubts - just know you’re not alone.

This is us at 16 months!

I wanted to share my breastfeeding story because it was a real 360° experience, because I see and hear of so many mothers with poorly babies who are assumed not to breastfeed, and because I think this could genuinely transform some mamma’s (and baby’s) journeys. So please share this with a friend if you think they might find it helpful now or in the future, thank you 🍼🤍

Nina’s been developing UTI’s since 9 months. She’s now had 5, and it seems like a small thing, but they’re recurring and there’s nothing we can do to stop them, there’s also not much doctors can do to help. She’s on antibiotics every month now, which I worry may have obliterated her gut biome, costing her whatever immunity was helping her avoid them up until 9 months. It’s a constant battle between what’s good for her now and what that means for her later. UTI now vs Immuno-suppression later (?) Antibiotics now vs Antibiotic Resistance later (?) The doctors say that if this keeps happening the risk is kidney scarring and honestly, for the first time, I’m too scared to ask what else.

Nina also suffers greatly with acid reflux. It’s bad. And recently she maxed out on her dosage, meaning she’s not allowed any more until she’s MUCH bigger (10mls Omeprazole Suspension ie the powder I mix at home rather than the dispersible tablet). It’s really scary - before she was prescribed this very strong medication she would just cry and cry, for hours. For a number of months the trend has been that her reflux ‘episodes’ would worsen, screaming, bringing up bubbles etc, I’d end up in hospital 3, 4 nights, a consultant would up her dose, she’d get some respite from the pain, and we’d both get some rest for a month or 2, then her weight would max out, and it would all start over again. My fear growing at each milestone. Right now, Nina is screaming nightly, bringing up bubbles of acid out of her nose, I can smell the acid on her breath, she’s in agony...and there’s nothing I can do.

Despite this latest nightmare - we are being discharged by our hospice (which offered us one overnight a month, 5 days respite every 3 months, and a volunteer 2 hours a week) - because Nina is medically doing SO much better than expected. This was a blow and bittersweet. It’s a huge pillar of support about to leave our lives and I’ll be honest, I’m afraid and I’m a bit angry at the irony of it. If I hadn’t been so determined to breastfeed Nina she would have a feeding tube, and likely a Peg, she also would possibly still have a floppy epiglottis and need regular oxygen as a result - the approach I took, the harder one than formula, the harder one than not breastfeeding, the harder one than advocating for her - has resulted in support being removed, than if I had taken what would have been (for me) an easier approach to her intense care needs.

Nina is like a newborn, as in, that ‘awake every few hours FOR a few hours, needs constant monitoring, feels so delicate that you just watch-them-breathing-a-lot-in-case-they-stop newborn phase...that phase where people tell you “It’s okay, you’ll be out of this stage in no time”. That phase where influencers make “spend a night with me and my baby” videos to demonstrate and feel validated about just how soul destroyingly exhausting it is. That phase where you haven’t brushed your teeth, or cooked a meal, or showered, or left the house in days...yep, that one…for fourteen months and counting.

Needless to say - the cracks are beginning to show. A few weeks ago I deliriously backed into a parked car after her sensory group. She was crying, I was exhausted - but determined to get to the class as our Neonatologist had strongly recommended I “prioritise Nina’s stimulatory development (high priority)...whilst Also remembering to “take care of myself”“ (lol), I’d missed yet another call from the carers centre about funding (high priority) and also had a message from the Social Work Team about arranging an evaluation to see if we qualify for a Carer “some” hours a week (high priority). I was trying to call them back (hands free) whilst the Child Development Centre started calling me to discuss when I was bringing Nina on “one of their fun day trips! YAYYY!!!” - I didn’t even hear the car beeping...until it was too late. And that was £450 down the drain right there, and a good chunk of whatever mental calm I still had a handle on, straight out the window.

And there had been little calm left in my tank, so to speak: my newish neighbours had recently disclosed (by way of a professional grade speaker system) that they were part-time DJs and enjoyed incredibly loud rave music anywhere between 10am and 7pm. So, not antisocial hours :-l which is fine for someone who gets anything like a normal night of sleep, non! Moi! I was, am up nightly while my baby screams with reflux, constipation, non-specific pain from 1am til 5am, while I have thoughts like “I am a terrible mother for bringing her into this world” “I’m doing so well to keep going” “she was so happy today, why?” “how does this feel for her?” “aren’t headphones synonymous with DJing?” “I wish her dad, I wish ANYONE were here”. Point being - I REALLY need to nap when she naps.

Anxiety is high, to say the least.

I’m exhausted.

I love celebrating Nina, I find it so easy to be grateful and delighted and to cherish her joys, of which there are so many (she’s started kind of baby babbling wuuurt?!) but these woes need a look in right now. Because it’s also a very challenging existence, and right now, I just can’t see the other side.

This is the cup I was gifted on leaving the NICU, two weeks after Nina was born. We’d moved from the maternity ward to a NICU family room - and though Nina was expected to need an incubator, or simply to stop breathing at any moment, neither eventuallity happened, despite a few terrifying close calls that had me running down the corridor in my PJs.

This cup was a beautiful emblem of her making it to two weeks. I treasured it, I loved it, and then last week, after 16 months, I smashed it. 16 months of coffee in that cup, of caffeine helping me through an era where I have had to quite literally drag myself up from the ground on a daily basis. When it happened, I didn’t even cry - I was too exhausted, too spent, too done. I stood, defeated, in the kitchen, surrounded by dirty pans I’d been rushing to wash in the precious hour before Nina was up again. Surrounded by unpacked boxes despite working tirelessly to settle in to our new home. And it was that, that made me cry. My numbness, my depression, my emptiness. The fact that I have sunk so far into my boots that I can’t even spare the luxury of allowing myself to grieve over a small but important present was, in itself, shattering.

I have no time to cry, I have no space for my own feelings, I have no empathy for my own need to be a human; a flawed, sentimental, slightly spoiled human. I have a history of severe anxiety, I have a diagnosis of PTSD and CPTSD, though I have mixed feelings about the fact that abuse that was done to me has been pathologized as a brokenness within me; it’s true however, that the Trauma broke me, repeatedly. Making me afraid to leave my house, my room, my head. But there have been times I have found healing through life’s challenges and rewards, when coupled with my a choice to be brave.

And so, after a moment of staring down at the broken shards of this beautiful cup...I reminded myself of that fact: that times have been (less but felt more) hard before, that the hard was what was teaching me, breaking me, forging me, shaping me. And I chose to believe this was one of those moments. And I thought to myself “I’m going to mend this cup, not well enough to use but well enough to keep.”

A friend once told me I reminded them of kintsugi. Fault lines are what some mental health professionals call the breaks in our psyche caused by trauma: pre-cracked lines in a brick that, if dropped from too high a height will split apart and bring on a breakdown. I’ll mend this cup, and it will have many fault lines. I can say with certainty that my trauma has made me ‘useless’, after a life of interpreting ‘usefulness’ as security, safety, love, this was an enormous blessing in disguise. Like me, this cup won’t have the liberty to be ‘of use’ any more, it will just have to ‘be’, and be okay with that. It will look beautiful, or maybe interesting, it will tell a story. Maybe it will never fully reform those broken lines, maybe the scars will not fade, maybe they will always in fact be wounds. Or maybe this shattered cup will remind me of my kinstugi nature; that I cannot help but repatch myself in new and unique ways. I’m tired of wishing I was undamaged, I’m long past tired of wearing damage as a badge. Yes I’ve been greatly, gravely hurt, yes I still have gold in my veins. Fault lines can heal, but not with the weapon that made them, and not by pretending they’re not there. I’d like to stop the rushing, the busyness, the trying to be productive, I’d like to put harmful people I’ve been drawn to because they feel familiar...away from me. In a life where I do the impossible every day - I’d like to do less, or perhaps to do more with the less. Less needing to be useful, needed - that is no way to guarantee love and acceptance.

I’d like to tell this cup that water will pour out and it’s okay that you make a mess, I would tell this cup that it’s unwise to teether on edges, that you deserve cushioning, and that you are beautiful, or maybe interesting. In that moment of what truly felt like a black nothingness pulling me in, who knew I would once again prove the hero to my own thoughts and alight upon the redemption of that smash. I am not of (much) use, I have fault lines that have retired me, there is much I cannot do, there is little I can. I continue to (try and) move carefully and gracefully, else I shatter again, but if I do, I’ll gather myself once more, because there is no shame to being in bits, its just a temporary state, fleeting as everything is, because maybe the crash is not the end, but the bell ringing in the next small, fleeting era.