"Why?"

As a teenager, I grew up swiping my mum's Bridget Jones books and reading them, half hoping they were purely works of fiction (as a somewhat scatty hapless seventeen-or-so year old myself) and half hoping there really would be a woolly jumpered Mark Darcy out there as well as a mildly amusing job and good Urban Singleton friends to while away adulthood with. One of the bits that made me laugh was a scene describing Bridget being 'smug-married' at a party by her goddaughter. "Bridget, why haven't you got a boyfriend?" asks the little girl.

Today, Wriggles and I were having a rather nice time at a third birthday party for a fellow special care friend. I was on my turn child-watching in the thick of soft play, when one of Wriggles' fellow comrades turned to me, frowning. She looked over at the table where her baby brother was napping and the area for small people where very-wobbly littlest people were hanging out.
"Amy," she said. "Why haven't you got another baby?"
Oh dear, I thought.
It is bad enough when adults ask; number one reason is because I haven't got a partner. However, I suspected her parents would not thank me for an early induction into the complexities of life, reality and a sampling of biology classes to come. Wildly, I looked around for back up. Where is your own daughter when you need her?
"Shall we have another go on the slide?" I asked brightly.
Thankfully, she shot up the ramp like shouting at me to follow. So I did. You can't ask too many more awkward questions whilst screaming "wheeeeeeeeeeeeeeeeeeee!". And so that was that.

It did make me think though. Really, it was more funny than anything else. Although Wriggles' language is a little delayed still, her peers we know are at the stage where asking "but WHHHHY?" is their favourite past time and for all of them, it is obvious they are watching the world carefully and piecing together information to form the basis of assumptions, beliefs and security. I know she only asked me, because I was there at the time. Although most of the mums and dads I met when Wriggles was small are adding to their families, we were by no means the only one-child family at the party and certainly not within a social circle. I'm pretty sure I was the only single parent there, but that is a whole other ball game and I am secretly quite glad Wriggles has not yet got the words or inclination to ask why she doesn't have a live-in daddy like her friends do. I have no doubt it will happen, probably far sooner than I want or think, but for now I can pass off playground equipment as distractions and pull silly faces as answers. Damn this development thing.

I remember shortly after Wriggles was born, someone well-meaningly pointing out that by embarking on the ultimately probably terribly fufilling path of single parenthood, I was possibly sacrificing things further down the line, or would at least have a lot more obstacles than I might do otherwise. Of course, I don't regret it. I didn't know then and I don't know now how things might have turned out if I hadn't had a child then. Would I have ever had one? Statistically, it is very possible I would. But maybe I wouldn't; and faced with the reality of a small, wriggling bundle of half my genes I wasn't willing to take that risk. I had that chance now and it was unconventional and far from how I imagined, but who knows how life will really turn out? In many ways it hasn't been easy but I cannot imagine life without a child; my child. I suppose now she is reaching the point where equally things medically are settling down and life is becoming more relaxing (that is, more relaxing from a developmental point of view, not actually relaxing because she is a mad as a box of frogs) and also because this is the age where many people around us are having babies, and whether you are in that position or not, it does make you think about how your life is turning out and what it may do in the future: or not. When Wriggles started preschool back in September, there seemed to be babies everywhere and for a while it really hit home that there were very much just two of us and that that was not changing any time soon.

Quite aside from being a single parent, there is also the small question of her prematurity, the effects that have shaped the last 3 years and how that might come into play even if I was in a position to think about having a different family unit. Talking with friends who are contemplating providing a sibling, they are arguing out finances, bedroom quotas, having the patience for dusting out rattles and teething toys-understandably huge decisions after you get used to having one little whirlwind and all the practicalities and emotions they bring with them. When I think hypothetically, quite aside from all of that, I would want the blessing of a very good obstetrician to hold my hand and promise me I would never have to walk into a neonatal unit again, never have a terrible birth, never swim through the fog of skewed mental health, never have to visit and re-visit children's wards, outpatients and think about disability, however small. 

Also, Mr Darcy has not yet put in a permanent appearance.

I never imagined I would have one child on my own. I never imagined until I had that one child, that loving her so much would make me wish for another. I never imagined, as a teenager back then reading fictitious books that life could get really very complicated and that things that look so simple-finding someone you care for and managing a relationship-could be so fraught.

I'll let Wriggles and her friend discover that in their own time. Preschoolers birthday parties are neither the time nor the place. Particularly when there is a Hello Kitty cake to be eaten.

12 weeks outside

I find it very hard to think "biology textbook" about baby development now. Instead of all the 'your baby is now the size of a small-but-perfectly-formed-semi-ripe-mango business all I can see and think is what I saw in special care. As well as being truly terrifying, it is a privilege to see what would be a foetus, but now a genuine baby, grow.

From 27+6 weeks, I saw my daughter develop. Not entirely naturally: for the first near two weeks she had machines to help her breathe (ventilator then CPAP) and from 31 weeks she started requiring oxygen again so had two enormous sticking plasters on her cheeks to ensure the nasal cannulas stayed on. She also had a feeding tube, right up until the very tail end of week 36, in time for home at 37 weeks (well 36+6 just to be clever). 

At birth she weighed 1090g (2lb 6oz) and at term she weighed 2385kg (5lb 4oz). By full term on her due date, she weighed a very respectable 3.3kg (7lb 5oz). 

I can only remember that period of development in emotion now. In grief, regret, tears and heartbreak. And shock, pure shock like a thick blanket. No precious kicks, no scan photographs, no lingering over first purchases of baby grows. No decorating the nursery, no showing off a growing bump, no excitement of choosing names. All that was done in a very intense and stressful situation instead, in a clinical environment with doctors, nurses, physiotherapists and beeps, always the beeps.

Our milestones were suddenly very different. Ventilators, IV fluids, antibiotics, diuretics, vitamins, caffeine, oxygen, feeding tubes, phototherapy, hot cots. And cuddles and cares. Snatched minutes of the day allowed to touch and interact with your child. The bliss of having them close, of your lips and hot breath tickling their fragile thin skin, breathing them in deeply to remember until the next 23 hours later...
 

Why?

One of the things I find hard when thinking of the short term future is how to deal with questions, especially relating to Wriggles, her health and her past. I am used to dealing with them on an adult-to-adult basis with varying answers and an even more varying success rate but am fairly aware that in time these questions may also come from Wriggles' peers and other children, and ultimately Wriggles herself.

I guess the plus side is that children lack the knowledge, depth of foresight and preconceptions that adults do. They accept people and answers more readily and are in the most part, less malicious or ignorant. On the down side, they are often really blunt. And when you don't have an easy peasy answer, it can sometimes take you aback.

This afternoon, a five year old niece of my a dear friend of mine, was watching Wriggles bumble about whilst holding my hands. Her aunt explained that Wriggles is now 2 and is practising walking.

"Why can't she walk yet?" the child asked incredulously. "My one year old brother can walk."

Why can't she walk indeed? There are SO many answers that as an adult I can only begin to get my head around. But for a five year old? Why can't she walk when others, younger, can?

"All babies do things at different times," her aunt explained. "And Wriggles is very clever. Do you know she can sign things?"

"My baby brother can say things," the child said scornfully.

Of course, she wasn't being really scornful. It was a thing of the moment and she is five, and as an adult I can appreciate she was being a child. Because children always have and always will do the "my X is better than your X" thing. It's touching really, a pride in their own surroundings and familiarity. But in a split second I felt sad. It felt like I was making excuses and belittling my child's progress and the enormity of her journey. It isn't always appropriate to tell it how it is, depending on the audience or situation. I am also increasingly aware that Wriggles is becoming more receptive to what is said about her and to her, both from the point of view of questions but also the answers. 

Once the little girl had heard that Wriggles was born early, she was fascinated. Cobbled between myself and my friend, we tried to explain that Wriggles came too early from her mummy's tummy before she was ready and was very small and very poorly. This seemed to go down satisfyingly and after a few wide-eyed moments, the subject was dropped in favour of walking on the garden wall.

But is the subject ever dropped for a parent? Maybe for the moment, but I know this is likely to be the start of many questions. It is so hard to answer them when you yourself don't have all the answers, or satisfying ones. 

Sunday Lunch

Written retrospectively during our recent hospital stay at the beginning of August 2012.

5th August (day 6 of being in hospital)

15:00, 5 litres of oxygen

I am tired now. Exhausted. Strung out. I can feel my bones heavy with the need to curl up but my eyes will not close and my brain will not cease. After the past week, adrenaline is still coursing through my body making me on hyper alert about everything. It is in this acute state that there are no inbetweens, only huge, looming and dramatic emotions. How did I do this in NICU for two months? How do too many families do this for longer?

Whilst Wriggles finally succumbed to an afternoon nap, I walked to the adjoining wing of the hospital. Primarily to scour the hospital shop for a belated lunch and stretch my legs but also as it holds a pull as being the wing of the NICU where Wriggles "grew up". So many intense moments, thoughts and experiences happened there, so many memories that linger like ghosts in the reception and all-night Costa Coffee franchise. Memories of daytimes buzzing with people and late nights eerie with silence, only the receptionist lonely at her information desk, the sulky coffee baristas staring into space, the odd lost drunk from A&E and smatterings of visitors like me, drifting aimlessly but with a sad purpose. People too late to have been on a happy visit.

This lunchtime, families packed the forecourt, a couple waited with their tiny new baby in a car seat, with a thin tube protruding from it probably fresh from being discharged from NICU upstairs. Finally taking their baby home at last albeit with accessories they probably never contemplated. It takes me back like yesterday. In a flash, I am there. 15th November 2010 with my baby in a car seat and oxygen tank wired up. Adele, neonatal matron and community nurse bending over to say goodbye; after all she knows my baby as well as I. Probably better. I wear a brown dress, green scarf and a cardigan my mother wore as a young woman. I have worn these this past weekend whilst rooming-in, the first nights I have ever spent with my baby. She snuffled noisily all night. I drew her acrylic cot so close to the fold-down bed they touched. I wanted, no, needed, her as close as physically possible. I ached for her to be in my bed with me, close to my skin, but lacked the confidence with her fragility and wires to whip her out close to me. I loved night feeds. Another precious moment with my baby girl. 4 hourly feeds round the clock. Tick tock, tick tock. The nurses would buzz in and out. "Getting on alright?" Better than alright, I'm finally where I belong: with my child.

Today though, is t-shirt weather. I don't feel just two years old; I feel at least 20. No one expects NICU to be an easy ride and indeed compared to many, ours was a relative breeze. But no one predicted the tumultuous years after leaving, the short bursts of horror at dreadful new admissions, the ceaseless worry about what was next: there was always a next.

At the end of the coffee queue, a father has a curly haired toddler on his hip, the child sleepily sprawled on his shoulder nestling in. A lump comes into my throat and tears prick my eyes. I long for my curly haired toddler, who is in the next wing sound asleep and still covered in wires. I had her on my shoulder but ten minutes ago curling into me, but that isn't what the pangs are suddenly for. It is for a life I imagined, seemingly snatched away. For a life free of medical intervention, a childhood of innocence. Of course, this child may have also had a rough ride, I know nothing of their lives or history, but in this split second their cherubic appearance embodies everything my little girl has missed. She bypassed naivety and has already experienced too much, too young. Maybe after this, the admissions will lessen or better still cease. But these years will never be repeated. They are lost to tears, nightmares and terror. Of course we have had blissful, happy moments and memories but they are not the ones that stay so bright. There is no point dwelling or mourning what could have been: we are lucky. I just wish we were luckier.

Back in our cubicle, Wriggles sleeps with her toy hedgehog by her side. Her fair hair fans out on the crisp white pillow, her NG tube sinking into the cotton creases. Sats: 95% on 5 litres of oxygen. Heartrate: 106. She is peaceful for now. My pyjamas hang off the buggy we innocently arrived at the doctor's in. In the little en-suite bathroom, newly washed socks swirled around in the sink with shampoo drip off the hand rails. On my pull-down bed sits a pile of confiscated Mega-Bloks from the playroom. Outside the window is the distant hum of traffic from the A167. People walking by with umbrellas. 

Just another Sunday afternoon.

Proud

Today, Wriggles was seen by our physio to be fitted for her new pink Piedro boots. After being very wary at first and hiding in me crying (I think the poor sausage associates people touching her feet with blood tests; they are rather pricked with tiny scars) she soon warmed up to them and was proudly kicking her feet about. As well as trying to exercises to help her cruising, our lovely physio and myself reflected on the past year that she has been working with us. She looked undoubtedly proud and told us that Wriggles was one of the children she had worked with who had made one of the biggest leaps in development; music to my ears when I know we still have further to go!

When Jemma started working with us after our previous physio went on maternity leave, Wriggles was approaching a year old and couldn't yet sit unsupported or roll over. Her lower limbs intermittently stiffened and then went very floppy, and we knew cerebral palsy (albeit, fairly mild) amongst other neurological diagnoses, was looming in their minds. It's not that this isn't the case anymore; it's just that Wriggles has surpassed the expectations of just how well she has done and now it is beside the point if in the past she has suffered a specific 'injury'. In under a year, she has learnt to sit, crawl, bear weight supported, roll over in both directions and cruise. Although I was told that there was no reason she wouldn't learn any of these things in time, we were also told that there were no promises, no guarantees and we would have to play the waiting game. Yes, it was likely she would eventually walk but by which means or in what time scale, no one knew. She still isn't walking, but she is able to pull to stand and is confident in cruising now and the physiotherapy and orthotics team are satisfied it may take as little as Piedro boots and time to get her to the next level. Everyone who has worked with her, and continues to, takes pride in how far she has come and what a comical little character she now is as opposed to a helpless jerky baby that came home with me, 21 months ago.

a year ago - "I'm really trying, honest!"

So many people think that a premature baby "just" needs to grow to term when they should have been born, leave the hospital and put on some weight and that is that. Job done, prematurity over, scars left behind. And yes, for a few babies that is the case. They can be carried out of NICU and bar a few development checks, never set foot in hospital again. And then there are those who have a very complicated journey to those who have a slightly complicated journey. Those who stay in hospital for months to come moving from NICU to paediatric care before discharge, those who go home with additional support and community care, those who the future looks rosy until something crops up, those that leave but keep coming back...so many variations. For many, prematurity doesn't end when you leave neonatal, the location just changes. The parents live with memories, labels, words, medical jargon they never understood before but do know, living with uncertainty as they wonder if something that cropped up before will rear it's head again in the future. Even as our little babies develop, we wonder like all mums, is she doing that right, is it on time, is that normal? teamed with the added knowledge of prematurity and statistical after effects.

Of course, our journey is far from over; from being resolved. But it is such a boost to hear that my little star has defied what doctors thought she might achieve. I remember the day after her birth, when one of the neonatal doctors came to speak to me. No promises, he said. The next 48 hours are critical for her immediate survival, let alone future. There is no telling what she may be able to do, or not do. And then as she grew older and the admissions started coming thick and fast, her notes tripling in size and the gulf of development inching wider. But then, slowly, she grabbed. She sat (and fell down). Then sat again. She rolled over by accident. Then rolled over on purpose. She started crouching on all fours. She started making 'bunny-hop' movements. Then she toppled over and crawled. Then one day out the blue, she heaved herself up. And I know, one day, whether in weeks or months, she will take wobbly steps. 

Oh baby girl, how far you have come!

Comfort

Wriggles has never been a massively cuddly girl. She has never particularly had a "favourite thing" either above anything else. The plus side of this is that that is one less panic when out and about (HELP I've lost so and so...and they've stopped making it!) but it does make me a little sad. I had a menagerie of stuffed animals when younger and always had one that trailed around with me. Even as a baby, I had favourites whose noses I chewed until they fell off (sorry Piglet).

My favourite of Wriggles' toys is Mouse. Mouse came on day 3 of Wriggles' little life and came as our guardian rodent that sat by her incubator day in, day out when I couldn't be there every waking or sleeping minute. When she moved into a heated cot, Mouse seized the chance and jumped in to, and has also slept in her bed since. She would have moved into the incubator had infection control not frowned on it! Mouse means such a lot to me, having "seen" with her stitched eyes everything I did and more. To me, she is part of the Beginning, which to look at Wriggles now can be easily forgotten about. Partly, I cannot forget it and partly I am desperate not to, as those early days shaped so much and when I brush the tears aside of the grief, trauma and unfairness of it all, I am so proud of how strong and brave my little girl is.

As well as Mouse, Christmas Hedgehog and Eloise-the-Rabbit also still sleep in her cot with her. These have both enjoyed brief dalliances with as being The Chewed Toy of the moment that would get flung about and piqued more interest than anything else. I suspect in time, they will be favourited again. I love the idea of having bedtime friends that are special to fall asleep and wake up with; a little separate world different from the frantic pace of the daytime.

I still have my own comforter; the filthy cat in the picture is mine that sleeps in by my bed. When Wriggles comes in to sleep with me or when she is poorly she often has the cat to chew or wallop. As it is quite old, it's limbs are a bit all over the place so perfect for "flying lessons" or holding onto tightly. It really needs a wash, and has lost all but one whiskers but neither of us seem to care. I love seeing Wriggles with my old toy-it is like it has come full circle in a way. 

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 


There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.


We were the lucky ones.


One minute thirty seconds.


It could have been so much longer.


It could have been so much quicker.


It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.

Warning: Contains Sick

I am sick of all the sick.

I have scrubbed my carpets better than Cinderella ever could and I can still smell it. 

On my fingers, washed a thousand times.

On our clothes, washed again and again and aired in sweet fresh air.

In Wriggles' soft baby hair, washed as many times as she'll let me.

The sickly smell of regurgitated vanilla peptide-milk has seeped into my consciousness and is following me about.

At work or with friends I become paranoid others smell it too.

Every time in public that Wriggles' hiccups, I tense. Is another fountain coming?

Did I pack enough spare clothes?

Have I got a muslin or tea towel?

If not, why an earth not? Stupid mama.

How pissed off is this swanky art gallery going to be? (Actually didn't bat an eyelid.)

Slightly, Wriggles is too over-friendly with the rounds of viruses. Mostly, she has a very sensitive gag reflex and still at 21 months is plagued by reflux.I am pretty sure the gag reflex is strongly linked with reflux, which has besieged her since term.

"Reflux is what happens when your baby's stomach contents come back up into his food pipe (gullet or oesophagus) or even into his mouth. The long name for reflux is gastro-oesophageal reflux disease.

Babies get reflux because the muscular valve at the end of the food pipe, which acts to keep food in the tummy, hasn’t developed properly yet. This means that when your baby’s tummy is full, food and acid can come back up. This can cause him to bring up small amounts of milk (possetting) or even vomit.

During the first year of your baby's life, the muscular valve gradually gets stronger and better at keeping food down, so his chance of having reflux decreases. About half of babies will get some reflux during their first three months, but it’s only a real problem for a small percentage of these. By 10 months only about five per cent of babies have reflux," from Babycentre.

Oh dear. Once again, we sent to have fallen into the small pond of percentages making us ever so slightly different from those all-hallowed baby books. Wriggles has always had the vomiting variation of reflux. Projectile vomiting at that. She can easily aim halfway across a room. One of my strongest memories from her 'newborn' period was when she was term plus a few weeks, one friend who was visiting came in and sat on the end of my bed. She was still wearing her coat. She opened her mouth the speak and bleeeeeeeeeeeugh-Wriggles managed to get her dinner in the coat pocket. We can laugh about it now. To her credit, my friend could laugh about it then, once she had gotten over the first few seconds of being stunned. She even (sort of) continued laughing when she had to wear her coat into work the next morning.

It took a long time to get a GP or HV to take me seriously about the reflux. It even took a while to persuade the neonatal consultant we were under. In fact, it took over seven months and changing doctors surgeries to get anyone to listen, and then it clicked with the consultants. The difficulty feeding, the recurrent chest infections, the coughing... Possibly because she was vomiting large quantities several times a day, and as a result of the irritation was producing large amounts of mucous, which really wasn't helping her already impaired scarred lungs.

The first port of call for most babies trying medication to control reflux, is commonly an antacid such as Infant Gaviscon. They reduce the acidity, so even if they do not decrease to occurance of reflux, they should reduce the pain and discomfort. Infant Gaviscon helps to thicken the stomach contents making it harder to force their way up. Side effects include constipation, which Wriggles already had and was made worse. Gaviscon did not suit her at all, so off we trundled back to our New Favourite Ever GP. Infant Gaviscon does suit a lot of babies though, and for many will control the symptoms. It can be used if you are breastfeeding also, if added to a small amount of water in a bottle.

The second medications we tried were an H2 Blocker (or H2RAs) and prokinetic agents in tandem with each other. These were both weight sensitive so needed reviewing regularly, but finally began to do the trick. Week by week, although the reflux was not eliminated, it was lessened. We were able to go from about 60-70% of feeds coming back up to maybe once or twice a day. It was still far from this posseting I have read about, but my washing machine could at least draw breath!
H2 Blockers, such as ranitidine, act in a similar way to antacids. They reduce production of stomach acid so what comes up should be less and hurt less.
Prokinetic agents, such as domperidone, are used to treat nausea and vomiting in adults. It also helps the stomach contents to move more quickly into the intestines. Prokinetic agents help formula fed babies most and those on solids, and breastmilk is digested quicker anyway.

If none of these make a significant difference, there are PPIs or proton pump inhibitors which we eventually ended up trying when the oral aversion and still-ongoing vomiting was affected her weight and intake of solids (ie. none) and milk, which was unreliable. Omeprazole or lansoprazole are often prescribed and can be in a liquid form which has a very short shelf life and is hideously expensive, or more commonly MUPS-a water-dissoluble tablet. The plus side of MUPS is that the strong medicinal flavour and odour is removed: the downside is that as in many soluble medication, it is never 100% and so you can be there stirring the solution until your arms ache like billy-oh to ensure a correct dosage. It is also easier in tube-fed children to use liquid, although certainly not impossible to use the tablets.

If reflux is ongoing, it could be worth checking that it is reflux and not a Cows Milk Protein allergy, as symptoms can be similar. If you are formula feeding, you can request to try either a lactose free-formula, soya formula or hypoallergenic formula such as Neocate or Nutramigen. If your baby is on solids; try cutting out dairy products making sure to replace them with appropriate foods for a balanced meal plan. Parents should be able to request a meeting with a paediatric dietician if their HV cannot give them full information needed. There is an ever increasing market of dairy and lactose-free items; it just takes that extra five minutes of label reading in supermarkets or some ingenious recipe scouring of which the internet is a goldmine. Soya intolerance or allergy is also not uncommon in babies, so it could be worth considering this. If you are breastfeeding, try cutting things out from your diet to see if it makes a difference and keep a food diary. It will take a few weeks to work, to get all the proteins out of the body's system so if you or your doctor suspect this, you may have to be patient and give it a while. Working with our paediatrician and sanity-saving-dietician, I tried Wriggles on a dairy free diet for three months. It made a very slight difference to her stools, but not to the vomiting, chestiness, feeding ambivalence and her weight gain plateaued then wavered. With the blessing and encouragement of our dietician, Lovely Ruth, we gave this up and switched to a high calorie peptide milk with lansoprazole which we have been on for the last seven months.
And all was well. Most of the time.

The vomiting and chestiness reduced, and with a sigh of relief, we began to think we had seen the back of the big, bad Reflux. The main problem we were left with, was a very sensitive gag palate. Sometimes, all it takes is for something to touch Wriggles' lips and she can be sick. Now she is older, I do think a small amount of this is psychological behaviour, but for the most part, she goes eagerly to complete a feed or try something and it is heartbreaking then to see her enjoyment and hard work come back up all over the pair of us. Watching her retch over and over until there is nothing but bile and mucous is really unpleasant-emotionally as well as physically! My poor bairn. Teething and bugs always make it far worse, and I suspect this current resurgence we are in the middle of is fighting off a plethora of bugs that she is meeting in the temporary nursery she is at for the last week. Roll on the end of June!

Other things you can try include using a wedge or creating a slope for your child to sleep on (think several Argos catalogues and Yellow Pages), frequent winding and little and often feeds. Also buying really nice smelling soap to make bath times more relaxing to give that dreadful sick-y smell a good seeing off-the same applies for investing in pot pourri in the living room. And take a look at Living With Reflux: a fabulous charity dedicated to supporting those people through the difficult time when you appear to have morphed from mother to Mrs Tiggywinkle and is full of supportive similarly-frazzled parents with tips for understandably-frustrated babies and to just soothe your nerves as your HV shrugs it all off. Again. But keep trying with doctors if you believe it really is affecting your child; arm yourself with information and don't give up. You know your child best and know what goes on everyday. Babies need a spokesperson and you need a night's sleep!

My girl?

Plop.

Through the letterbox came the written report of the last appointment at 15 months corrected with the paediatric team which had gone fairly well. They were happy to leave it until around August, just before Wriggles is 2 and seemed content that I was doing all the right things and generally being a Good Mama.

"...at clinic, Wriggles was quite happy playing on the mat and was reluctant to go back to you [me]."

Bang.

Like a dagger to my heart.

Inside I crumpled up again, momentarily back swimming in confusion, hurt and rejection. 

After I got over the initial struggle of NICU coming to terms with my very new, very surprise and very vulnerable little scrap in an incubator, I fell in love. There was never a question over that. The struggle I had was accepting that Wriggles felt anything in return for me. This struggle was a very long one and took many session of counselling, many cuddles and many many months (I would say well over a year) until she started blowing me kisses and hanging onto my leg.

 

Parenting is a very unique relationship that breeds unconditional love from the responsible carer towards their dependents. And it is always assumed that this love, in a different more taken for granted way, is returned by the children. At it's least sentimental, because in most cases, the child knows no other parents and no other love. It is the first relationship, and hopefully most long lasting and simplest yet most complicated they will ever have.


When our minds play with our confidence, cruelly, we question even these most basic facts. Whether she knows what love is, I am Wriggles' constant and the person she is with by far the most. I am there morning, I am there night. I am there in the middle of the night. Just me. Just us. I am there in sickness (either of us) or in health. I am there in good spirits and there in a grump. So knows that. As my friend V pointed out recently while Wriggles was blowing kisses to her, she knows what kisses are and distributes them so freely because we have such an affectionate relationship and to her, kisses are the norm, because she has always got them. What a lovely innocent world.

I know the report was not in any way criticising me or suggesting my daughter is indifferent, or worse, doesn't know who I am. It's my fear shouting over my rationale and that if she didn't know my world of security and comfort, she would be fearful to do any venturing. It's just that my (not so) secret fear is that deep down she doesn't understand who I am, and running on from NICU thinks that the entire world is her family, happy to embrace and be caressed by stranger after stranger taking my place.

When I first discovered the world of blogging, particularly those with a premature baby aspect, one of the most important posts I read was this one by Beadzoid. It very much spoke to me and in my dark moments when I felt very alone, offered a chink of light that someone had had similar worries to me, and if they hadn't been certified then I wouldn't either.  

This week, Wriggles is in temporary childcare; not an ideal situation but a necessary evil as she will only try and eat the printer at work. She has started to cry when I leave and I am told, stand by the stairgate for a while after looking out. It breaks my heart and I smother her with guilty kisses on return. You do care. I'm so sorry I doubted you. I'm not leaving you. I love you. The minute we are home, she scrambles away to explore new worlds and hoot down toilet rolls. Then out of nowhere gives me a big hug or grabs my hand. Then the spell is broken and she is off again, but I am revived.

Oh, to be a parent. You just can't win either way.

Then and Now

Then.

 

I miss looking into your screwed up squished "term" face, seeing glimpses of features yet to come.

I miss your snorting and snuffling through the night: you sounded exactly like a hungry hedgehog in the undergrowth!

I miss being able to be still with you; just watching and waiting for nothing.

I miss your napping, curled up on my chest. Now if you consent or are allowed to sleep on me, you are more lolloping starfish than a little dormouse.

I miss your whole tiny hand being still almost too small to hold just one of my fingers-and I have tiny hands myself.

I miss, in a wierd way, you grabbing my hair and getting tangled up in it. Things I thought I would never say.

I miss putting you down in one place and knowing you will still be there, albeit a bit lopsided in two minutes time!

I miss at least two naps a day.

I miss that utter dependence on me.

Now.

I love it when I carry you around, and you cling on tightly with your fists and wrap your arms around me like a bushbaby.

I love that you have such a personality and a huge range of expressive faces. Even your stuck out bottom lip cracks me up.

I love that you give cuddles back. When you reach out it is The Best. Thing. Ever.

I love it when you try to pull yourself up by pulling on my trouser legs.

I love it when you "bring" me a toy (normally thrusting it up my nose) you want to play with, or better still, want me to play with with you.

I love it when you copy things and do actions. You are so sweet when you hit yourself on the head with a hairbrush ('brushing your hair').

I love seeing you get excited: bet it about the swings, a train, Mr Tumble or coming home after a long day.

I LOVE it when you blow kisses.

I love it when you curl your fingers around mine.

I love that your understanding is growing each day.

I love that you are such a daredevil and scared of nothing (except possibly eating and our friend Leila's hippo torch).

I love it when you are with other little children and I can see you trying to work them out. And then trampling on them-must sort that last bit out.

Highchair

A year ago we got our highchair. Like much else about Wriggles, prematurely! She was being weaned (if you can call it that, not actually eating any solid food) but even with the insert, was very small and her chin was practically resting on the table. She also couldn't sit up by herself and wouldn't for around 6 months more. The only reason I bought it then was that it was reduced at the time and my parents were up visiting to help carry it back from the shop. We duly placed Wriggles in it for a photo opportunity and after that, it stayed rather unused taking up a corner of the kitchen for months to come. She wasn't very impressed at all and it seldom got used as anything further than somewhere for dumping things organising post.

Wriggles was still being (attempted) fed in the bouncy chair and Bumbo, which I cannot praise enough. We were kindly loaned it by the physiotherapy team to help Wriggles' core muscles, but it really came into it's own for so much more. She seemed frightened of the highchair for a very long time, but trusted the Bumbo which she was always more than happy to sit in. I think it made her feel more independent and like she could achieve more. It also freed up her hands rather than trying to balance on the floor trying to support her weight sitting. I did try to use the highchair briefly, not for food but to play in. Partly it was useful if I needed to have both hands free for a short period, and partly I wanted her to relax in it and learn to trust it. She was so swamped in it, there were often about three separate rolled up towels supporting her as well as a booster insert. Slowly, she began to hate it a bit less and discovered the fantastic game of "chuck it over the sides/Mummy pick it up". She was definitely at least one before it got used even semi-regularly for meal times, as other times she was far happier sat in the Bumbo or on my lap. Given that meal times were not her favourite bit of the day, the last thing I wanted to do was make her more fraught by the choice of seat.  


Although progress isn't fast, Wriggles really is making strides with feeding and also accepting more textures and touch. The highchair has now come into it's own, especially as the Bumbo is no longer safe now she is mobile, and the tray is ideal for presenting a buffet of leftovers and finger foods, and if she wants to really get involved and explore the food, then it is wipe-clean (as is she!). Now, we have lunch and dinner in the highchair and she happily will pick through a selection of things like cheese biscuits and Cheerios as well as being spoon-fed. It also makes a good hiding place, standing aide and toy basket when not in use. She still is rather swamped by it...

Happy birthday, highchair.

All in the Mind

The human mind is incredible.

 

It is such a sophisticated thing and the most sophisticated thing is, you can't even see it. You can see the brain yes, and really clever people with whizzy machines might be able to see cells and neurons but what does our mind, our thoughts, our intellect and personality look like? Does it look different if we are ill or sad?

Mostly, the mind is incredibly clever and benevolent.

Sometimes it is also incredibly cruel.

You only have to turn on the news to see what human thinking and consequently actions cause sometimes. It might be one person or a collective. It might be one spark or a long thought out plan. And less newsworthy, people out there every day struggle with mental health when their mind is not 100% their own. It might be fleeting; it might be lifelong.

After my recent wobble, I have been feeling so much better for having some time off work with Wriggles. It really helped me reaffirm myself as Alpha Mama (alright, then: a mama at least) and in that month, I did more mum-friendly and social things than I had in over a year. I returned to work as I knew then that redundancy was imminent in around 6 weeks and figured that I could do that, knowing there was an end. I hadn't given up the idea of continuing working if something else came up and I could find appropriate childcare and I was getting maybe a little cocky thinking I had put the worst behind me. Largely, I think the "worst" is behind, just the tough bit that is easy to forget is that there is no magic moment when your feelings go away in a puff of smoke. Nothing has to happen for them to creep back out again from where they have been lurking, but sometimes they sneak up unexpected and uninvited as if to remind you who was once boss.

I had a silly hour or so today. It wasn't quite a panic attack, but was unsettling to say the least. I had a rare few hours apart from Wriggles; we had a lovely lunch together (eaten: one fromage frais, a dollop of banana & custard, several rice cakes, the corner of my panini and some multigrain hoop-type-snacks) and I dropped her off at the creche. She barely looked up, having befriended one of the staff instantly. I kissed her, once, twice, needily three times and still she didn't flinch. Off I slunk, with my tail between my legs and my metaphorical ears wilting.

She doesn't love you.

The thought hovered in my head. I furiously brushed it aside.

She doesn't care.

She's just independent. And sociable and friendly and a toddler for chrissakes. They all go through mad phases.

You keep telling yourself that. How do you even know she realises you're her mother?

All babies know their mothers. She would have known my voice, my smell. She settled with me and fell asleep in my arms.

She was born early not long after developing those senses and lived in a plastic box for two months.

That didn't stop me loving her and telling her I loved her. And once she came out and came home, I didn't stop holding her and being as mothering as I could.

I'm not talking about what you feel. She wouldn't care if you walked away now. If you went and never came back. She'd be fine. She'd still smile and giggle and laugh. How do you know she would miss you?

How do you know?

Would she?

I wish sometimes there was an off-button to silence minds.

As anxiety and growing hysteria with a growing conviction I was unwanted swept over me, I could feel myself getting light headed and shaky. Walking past a window confirmed I was as white as sheet and looked peaky to say the least. I honestly thought I was going to collapse with the intensity and was terrified that after all the good work of being able to separate mad brain from normal brain that I was falling back fast into a barren and bleak pit of despair whereby I couldn't control my grasp of my little world.  

Thankfully, my more conscious and rational self came back not long after it had left and banished any such thoughts, focussing firmly on what was happening right that second (wandering round IKEA, a task impossible with a small noisebag) and the knowledge that soon I was going to be back with Wriggles and she would be happy with that.

And indeed, she was. I picked her and smothered her with kisses and she happily held my finger on the metro home. We "fed" her toy cat rice cakes on the way back and she squwarked with mirth. I was once more myself and let out a sigh of relief and contentment. Now, surrounded by my things with my daughter sleeping softly in the next room, I know all is well. 

A blip. 

A silly blip. 

Philosophically, you could debate the notion of love, relationships, parenting, nature and nurture but I know one thing: I have a very happy little girl and happy little girls do not stay happy without love. Little girls who do not care are not full of smiles and contentment. They do not blow kisses or offer to share dribbled-on breadstick. They might scream and try to climb in the bin and ignore all authorative "No"s and happily climb on anyone's lap, but that does not mean indifference or dislike.

I've got so many happy memories with her, and I hope she has too. I know memory is far less sophisticated in the very young, but I hope somewhere in there, there are recollections of moments prized. I'm not, in them by default as the only parent there day in, day out I hope but because I have earned my place and my reward of my daughter's affection as I have loved her to the ends of my ability and further every day, and done the best I possibly can by her. I may not be perfect, but I will bloody well try to be for her sake. (Allowing bin-and-toilet-climbing excluded of course. That will stay not permitted, however many tears it produces).

Handbag

Sometimes I wonder how being a mother has changed me day to day. Occasionally I think maybe it hasn't. Obviously I am one, but am I that different? I have always erred on the bumbling and scatty but am I mum-type-bumbling? At work today, my fellow mum-colleague came in and fished in her handbag for a pen. She pulled out several snapped crayons with a puzzled expression and rolled her eyes. I thought about my own attempts to find anything in my bag and there found my answer.

In my handbag this morning I found:

• my wallet (chewed)
• my mobile
• my keys
• my spare keys in case I lost my keys
• my camera
• one either spare or dud battery-must check later
• antibacterial hand gel
• miniature bottle of Burt's Bees lotion
• lipbalm covered in fluff
• assorted crumbs
• crushed packet of Quavers containing approximately two Quavers left
• packet of paracetomal
• Passport; presumably in case it all gets a bit too much
• biro
• spare biro
• spare spare biro (yet can never find a biro at time of need)
• six stacking cups, mercifully still stacked
• one shaky egg
• one board book, cunningly concealed
• a half chewed arm of gingerbread person (chewed by Wriggles, not me)
• hairband
• assortment of expired bus and metro tickets and receipts
• squashed mini packet of wipes
• collection of bangles to distract Wriggles from swiping my keys and spare keys
• dog-eared leaflets I cannot recall picking up
• my friend's address scribbled on the back of a Pizza Express menu
• pair of tiny socks (kicked off by Wriggles)
• Sudocream
• Small bottle of factor 50 sun cream
• sweet wrappers (alas no sweets)
• unposted birthday card for uncle
• exceptionally tatty coffee shop loyalty card

At least rattly frog didn't make it in this time...

Maternity Leave

Tomorrow when the Queen gives her speech, she is expected to address the proposed new changes for maternity and parental leave as put forward by the Coalition government. After reading the proposals, I found them slightly chilling. The new proposal stipulates that mothers would be entitled to just 18 weeks maternity leave with anything further by personal agreement.

Currently, mothers are entitled to 39 weeks of paid maternity leave and 13 weeks of unpaid maternity leave. Mothers can go back to work after just two weeks if they choose to or have little choice in the matter, but are entitled to take up to a year off which would not be paid at the decision of their employer. Fathers are entitled to two weeks of paid paternity leave.

The proposal put forward in the Government's Modern Workplaces consultation, published last year, would give mothers just 18 weeks of maternity leave, and at the employers discretion up to four weeks of reserved paid parental leave, followed by 17 weeks of paid parental leave and 13 weeks of unpaid parental leave, which could be shared between mothers and fathers.

There are some loopholes in the current wording putting parents at the mercy and sympathy of their employers and I personally found that when your working contract is at odds with legal maternal rights, no one, including Citizens Advice Bureau or Welfare Rights knows what to do with you. The new proposal sounds even worse for cases that may differ from the norm or at such stage involve complications often beyond the mother's control. At present, there is no allowance for special circumstances like medical need, including maternal problems pre or post-natally or conditions affecting the baby, such as infections or preterm birth. My own maternity leave, started the day Wriggles was born rather unexpectedly. From what I recall, my working contract did not actually include anything to do with maternity leave or in the event of, as I was a new graduate and at the time of employment, no one including me, knew I was pregnant. This made things even more complicated than they would have otherwise been and I was passed from pillar to post whilst someone tried to work out what I was entitled to, which was then further complicated by Wriggles being discharged on oxygen meaning that formal maternity leave went out the window and I ended up being on parental leave as a carer instead. However, for other parents with more watertight or appropriate work contracts, preterm birth can mean that maternity leave is brought forward drastically (one woman I spent the NICU journey with, started 6 months maternity leave after leaving work at 26 weeks to go on bed rest and then having an emergency Caesarian section at 27 weeks) or if you give birth spontaneously then maternity leave can start from that date.

The difficulty with a complicated labour, birth or neonatal period is that there are no magic answers, no fixed timescales and no promises. A rigid set number of weeks for maternity or indeed paternity or parental leave has no mercy on the world of NICU when things can change rapidly. If your child has been born prematurely and with no other obvious complications, parents are generally told to aim for discharge around the due date. Some get to leave early if things are going well and some stay in days, weeks and occasionally months afterwards. We all wish we had a crystal ball to predict things, but parents live on hope whilst employers and legal systems demand answers. Like, yesterday. 

Even once you have escaped hospital, you have two things staring you in the face: 1) you have just lost a huge chunk of time sat next to an incubator staring blanking and jumping out of your skin every five minutes when the monitor beeps and 2) you have possibly also mislaid a chunk of your mind as you process what your little family has just been through. Some parents seem to be able to walk away with a shudder of the past; many, many others struggle if not immediately afterwards. It is so hard to predict also what problems relating to or independent of prematurity will arise along development and how that will affect your working ambitions and situation.

Looking at the dates laid out, I have looked back over my 'maternity leave' and was horrified that I might have had to return to work when my daughter was only just 6 weeks corrected: an utter newborn.

18 weeks 17th January

At 18 weeks, Wriggles was still on full time oxygen. She was 5 weeks and 6 days corrected. She had no concept of a sleep routine although was slightly less erratic. Although she was a very good weight and lounged comfortably on the 50th centile for corrected age, she was a titch and was still largely in premature baby clothes as all the high street "tiny baby" and newborn sizes hung off her. She could have keep all her toys in the bottom of the sleepsuits! At 18 weeks we were still having visits twice a week from the community neonatal team to do oxygen saturation spot tests and check her weight and feeding. We were seeing the physio team regularly to deal with her torticollis and plagiocephaly and also had regular contact with the nutrition department and respiratory team to have monthly RSV jabs, to ensure she did not catch the virus which could have been extremely debilitating for a premature baby on oxygen. She would wake for small periods in the day (or night) and was largely floppy still. There were signs of her beginning to twitch her facial muscles although a smile was a while off yet, and her cry was very definitely the mewl of a newborn still. Reflux was here with a vengence and she would regularly projectile vomit and be quite unsettled. She fed 4 hourly on the dot and was a bit bemused by life, the universe and the idea of wearing tights (tried once only).

26 weeks 14th March

At 26 weeks (13 weeks and 6 days corrected) Wriggles had been weaned off oxygen in the daytime and was completing a sleep study with a view to removing it at night time too. She had had her first bout of suspected bronchiolitis. She was not yet on solids, although we started weaning the following week. She was sleeping for longer periods at night time and napping still in the morning, lunch and afternoon. She was in a pattern whereby she liked to have a bottle (100ml-125ml), go to sleep and then have some more milk when she woke up. She would drink roughly 20oz in 24 hours on a good day and had started teething, although no teeth would appear for another 6 months! She could hold her head up and smile and was very slowly beginning to tolerate tummy time. When on her tummy, she could raise her head for a few seconds and balance on her forearms and was beginning to learn the basics of cause and effect-.ie. hitting things on the baby gym. She could hold things briefly, like her frog rattle and the thing that made her smile most was our stuffed Very Hungry Caterpillar walking over her head and bopping her nose. I had been diagnosed with PND and was not coping marvellously well. I was sleeping and eating terribly, had lost quite a bit of wake and was struggling with social interactions and jealousy when other people held my baby. I had convinced myself she didn't know I was her mama and wouldn't care less who she was with; I loved her fiercely and this made my thought even sadder. The best bits of the days were cuddles on the sofa and Wriggles dozing on my chest. We still had weekly visits from the community neonatal team and had had the appointment for our 6 month check though.

Actually returning to work-33 weeks Early May

I was due to return to work in April 2010, in what would have been Wriggles' 29th week. However, she had the dreadful bad manners to contract pneumonia and wind up in Intensive Care for three weeks, effectively wiping out most of the month. Towards the end of the month, we ended up back in A&E once if not twice and so it ended up being the first week of May I was back. It ended out working out quite nicely as this gave us time to move and settle in and to also get to grips with our new GP surgery who would come to know us well. We got to know the childminder better and gave Wriggles some proper settling in time and me some piece of mind. By this time I was beginning to fall apart mentally but was determined to return to work with my single mother mantra held high. I started sertaline, a SSRI anti-depressant and was diagnosed with Post Traumatic Stress and was constantly haunted by nightmares and flashbacks. I felt incredibly detached from everything and it felt like difficulty bonding all over again. Gradually this would ease and I would learn (in the snatched healthy moments) to enjoy every millisecond of being with Wriggles and laugh and sing. Wriggles had miraculously put some weight on and despite every other weekend being rushed to hospital, was thriving in between. She was rather excitingly beginning to fit into 3-6 month clothing and could sit supported in the rather fantastic Bumbo which we were lent by the physio community team. She could finally bring hands to midline although refused to roll over. The oral aversion had started by now but at this point, not acknowledged by the medical team.

39 weeks 13th June

Although I would have preferred to have been off until at least 9 months corrected, if I had had to return to work at 39 weeks when Wriggles was 6 months corrected then it wouldn't have been the end of the world. Of course I already was at work and had been for over a month and with honesty was really struggling. I was too afraid to speak up in fear of jeopardising my position and barely had the time or energy to seek any advice which might have helped me. Further to the stress of having returned to work, we were in the thick of admissions and oral aversion meaning feeding was a struggle and we seemed to be at the hospital as much as home. It felt quite a bleak point for me, as it seemed that when Wriggles was well she was being looked after by someone else whilst I fiddled about with highlighters and when we were together it was at the blooming hospital again. I was finding things easier though in terms of mental health and my relationship with Wriggles felt stronger. I was finally accepting that she loved me back, and we were tentatively starting to go to mother and baby groups and socialise a lot more. Had I have been off until this point, I think I would have maybe had more chance to build and strengthen friendships with fellow parents, meaning I would have felt less isolated. I would have also felt more confidence in my mothering skills and certainty that I knew my daughter best.

52 weeks 14th September

At a year old, Wriggles could very-almost-nearly sit up for incredibly brief periods but was determined to master this skill. She did in the end a few weeks later, but was having wobbly periods of trying now. I was having much less wobbly moments although found her birthday harder than I had hoped I would. The oral aversion had been taken a little more seriously although the range of food she would accept if any, was very limited. She relied nearly entirely on milk although was more relaxed touching food. We had regular activities to go to and Wriggles was proving to be quite the party animal meeting other people. She has always been a social and smily baby, but the older she gets the more she seems to charm people! I do think, had I had all this time off then I would have returned to work with maybe a tear in my eye but ultimately well adjusted and ready for a fresh challenge. It would also have really helped as throughout the summer, respiratory infections came so thick and fast and each one was like a kick in the stomach. Things no one can warn you about truly whilst at NICU but something which nonetheless can be part of the package of a premature baby. Juggling this with a work regime is tiring, mentally and physically. Most evenings I would collapse on the sofa and it would be all I could do to try and concentrate on simple TV programmes let alone more adventurous stimulating hobbies.

Charities and parenting groups have already begun to express their concern. A key group of 17 groups wrote to the ministers outlining their concerns and pushing for a minimum standard of 26 weeks maternity leave to be implemented. They highlighted issues such as childcare problems, life with a newborn, parents coping at work and unforeseen complications such as a period of time in hospital for mother or baby or postnatal depression. The letter to ministers was signed by Bliss, Child Poverty Action Group, Citizens Advice, Family Lives, Fawcett Society, Maternity Action, Mothers Union, National Childbirth Trust,  NUJ, Prospect, Twins and Multiple Births Association (TAMBA), TUC, Unite, UNISON, University and College Union, Usdaw, and Working Families. 

You can join the Six Months For New Mums campaign run by Working Families including on Facebook, which is campaigning for all mums to have the right to a minimum of 26 paid weeks of maternity leave.

The more I have thought about it, then more passionately I feel that new mums with whether their first, second of fifth child should be valued and respected enough to have a sensible amount of time off. I know we are in a recession and that employers and the Government do not have bottomless pits of money or are there to act as charitable causes, but to me this proposal is sending out the wrong message to women and parents alike. It looks set to widen the gap between gender, those with and without families and endanger long term pay and working situations for families as well as ambition and motivation both at home and in the workplace. We are supposed to cherish family life: not wish it away.