Dear NICU

Dear NICU,

I am angry. So angry. I know I shouldn't be but there are so many things I want to say to you. Maybe it's not healthy nearly 2 years on but I need to get this off my chest.

You denied me my role of motherhood. You took away my basic rights as a parent. You can SAY I'm still the mum, but how was I really being a mum just sitting? Sitting and staring. Watching and waiting. That's not parenting.

Do you know how demeaning it is to ask for permission to touch my baby? Not even hold, but touch? And when told, albeit gently, no not now, no not today, how you snapped my fragile heart and stamped over it before brushing it aside for dead.

How patronising and sad it is to have cuddles put on a rota, as if it was another chore to tick off. 15 minutes a day; 3pm after cares.

How I felt as small as a gnat, no smaller, as worthless as a flea because I wasn't breastfeeding. I couldn't even do that and you didn't care. You didn't even say, don't worry because it wasn't important as long as my child grew.

You smashed every one of my dreams and preconceptions of my first child, my baby I will never ever recover or now live. My innocence was lost within hours. It doesn't matter if I go on to have another baby; I will never get those hours back with her.

You were rubbish at sharing. All those weeks and I could only visit. Every night I had to leave. Every night I had to leave my baby with someone else. Someone very kind and very skilled but a stranger. Every night I had to accept that someone else would comfort my baby because I couldn't be there to do it, and might get to hold her precious hands while I wasn't allowed.

You had the most important job in the world looking after tiny vulnerable beings that were each the centre of someone's universe and yet you had no compassion. Day in day out some babies would get sick. Worse, some might leave this earth. Why didn't you do something? Something more?

You weren't me. You might have cared for my baby but you will never love her and you took her from me when she needed love the most.

Kind regards,

but maybe not that kind,

Mouse

ps. By the way, thanks for y'know, saving my baby's life and looking after her. Thanks for giving her the chance to live so we could both be happy today. More than happy. Um. Maybe you could just ignore all of the above?

*screws letter up and throws it in the bin*

Sigh.

The Best Worst Place

Recently, I met a fellow neonatal mum face to face. We were introduced by a good mutual friend of ours and had both had daughters on the Tiny Lives unit at the RVI. Our daughters had missed each other by a couple of weeks. Her gorgeous 30-weeker, now 16 months old, was born due to placental abruption. Immediately, it was like we were part of a secret club with a code language. In minutes we swapped procedures, compared stories, established mutual acquaintances on the ward and compared favourite doctors and nurses. 

"It was such a wonderful place."

"So lovely; just incredible."

Our friend, with her term baby, looked at us as if we were mad.

We paused and looked at each other as if we were mad. And quickly looked away, a slight welling of the eye and a lump in the throat.

"A horrible place."

"The worst place to be."

The thing is, both things are true. A good NICU is the best worst place to be. If you're going to be separated from your newborn, you damn well want them to be in the best equipped place with the most high-tech machines and knowledgeable staff yet also with compassion. But of course, even the best NICU, the one with the friendliest nurses and the most intelligent doctors and the newest and sparkliest and beepiest machine is never going to be enough. 

Because it's not with you. 

You can visit, yes. But that is the hitch: you have to leave. Night after night, you have to walk away. Bye bye, baby. Does your child, wired up, know you are leaving? Know the difference between night or day? Know inherently that you should be there, forever and always? That is all debatable. But to you it goes against the very grain of parenthood. It is the strangest thing: you know it is the best place for them. But you also know, that it will always fall short and cheat you both of the most loving and most caring place: being there with you.

Commemorative Quilt

I've talked before about the importance of charities that support neonatal or indeed any hospital unit that can offer vital funds that will enhance the unit beyond the NHS budget and be able to prioritise family support, community care, extra staff training to ensure that knowledge is kept cutting edge and small details that seem insignificant, but to families and in-patients make the difference between a scary stay and bit of a fuzzy glow.

Babies should start their growing up at home with their parent(s) and families. However, for 80,000 babies this isn't the case and they will start their lives in a neonatal unit. Wriggles spent two months there, which although is heart breaking, considering how much longer some children spent, is barely skimming the surface. Too many people think that premature birth or sick children is something that happens to other people. Premature birth counts for 7.8% of the number of live births in the UK and up to 40% of those cases have an undetermined cause. In my city, 6,500 babies are born every year, and 600 from those and from other hospitals around the region and the North of England will pass through the neonatal unit, through intensive care, high dependency and special care. Tiny Lives our charity support the unit, including directly funding breastfeeding support posts raising expressing and breastfeeding to 95% and for two specialist physiotherapists who do vital positioning work which is especially necessary for babies in for extended periods of time. They also focus on family support and allow for items outside of the NHS budget to be purchased. 


To celebrate the marvellous work the unit does and the lives of the babies who have passed through since the unit opened in 1993, a quilt is being made by an events group supporting Tiny Lives. There are 93 squares being personalised by parents and a border of buttons are being sponsored by anyone who wants to support the project and from friends, families and businesses.

 So if you would like to get involved or donate, hop over and have a peek. Including Gift Aid, the total raised currently stands at £1009.18 which can be added to the total monies raised so far from the group which is £11,673.89. Hundreds of other people also raise thousands for Tiny Lives across the North East; having had a experience of special care makes an enormous impact on lives from the babies, parents, friends and family.

No parent ever plans to be on Special Care but when you have no choice, having a first class unit, dedicated team and a supporting charity to ease the financial burden, it makes a hard time much easier.

Text QUIL99 £1 (or any amount you like) to 70070 or visit the Just Giving page and we will sew a button on for you 

 

Born Too Soon

I started blogging as a direct experience of parenting a premature baby. It has become my personal therapy and a way of connecting with other parents who have shakily stepped off the rollercoaster and are beginning to think 'what the hell do we do now!'. Prematurity took over my life as it was overwhelmed and blasted my mental state into what felt like space. I felt so anxious for my child, so guilty for what she had been through and so disconnected from the real world. Born spontaneously at home before the paramedics arrived, Wriggles arrived into the world at 27+6 weighing 1090g (2lbs 5oz) and although took a breath, then crashed. She was rushed to hospital whereby she was resuscitated. They used a new research method of "cooling" keeping the body temperature low to protect the brain. The fact she had cooled naturally in my draughty bathroom whilst waiting for the team and was still attached umbilically is what I have been told saved her life and brain function. She was then taken to the RVI Newcastle upon Tyne and stayed there for ten weeks. A large chunk of my blog is about prematurity and the experience in neonatal and the effects afterwards, so for this fantastic Tommy's campaign I have decided to hand over the reins to Mouse, who came into our lives on day 2 of Wriggles' life and kept watch by the incubator and has slept with her ever since.

My name is Mouse. I popped out of a carrier bag as Wriggles' First Toy bought by her grandparents on Wednesday 15th September, 2010. I was presented to Mama who felt me very tightly and closely. I could hear her heart thudding away as she pressed me to her, desperate to find comfort in the strange new world. Later that day, we traipsed down the corridor hand in paw to meet Wriggles. She was in the Red Area (Neonatal Intensive Care) and there were 4 incubators in the room and two nurses. She didn't have a name yet, just Baby Girl [surname]. By this point she had come off the ventilator and was on CPAP which was attached to her face with a little grey hat. The huge CPAP tube was nearly as big as her face. She wasn't very big; maybe a little bigger than I was and definitely thinner. My little stuffed arms and legs looked so chubby next to her bony limbs. But we looked at each other, beady eyes to beady eyes through the incubator, pressed against it. I'll look after you. I'll be here when your Mama cannot be. She trusted me with the biggest job of all to keep you safe and keep you loved. Because Wriggles was poorly I was not allowed inside the incubator as part of infection control, but I sat on the top or next to it. I kept Mama company during the long hours and hard times and helped her keep a diary. Her memory was so fuzzy I had to help prompt her a lot, and she would cling onto me as if I was her baby, as she couldn't do so with Wriggles. NICU was an odd place. There were always people everywhere and everything was conducted with speed and a sense of urgency whilst trying to maintain a blanket of calm, yet depsite the hustle and bustle it was very lonely.

First day in a cot

We spent a total of ten weeks in the neonatal unit. Other babies and their companions like me came and went. Most of the babies were born at a later gestation and spent far less time in. Some were there for a fortnight, some a little more. In the Green Room we graduated into, we got to know another extreme prem baby girl, E and her guardian toy Bear. Me and Bear got on well; long into the night we would whisper over the tops of the incubators and keep an eye on each others little people. One day, E had a nasty bradycardia and apnoea moment and went purple, needing stimulation. Bear stood poised in shock, willing E to regain breath. She needed some stimulation. Afterwards we were on a high alert, like guards waiting. It was a stark reminder how changeable things are even when they seem to go well.Only a few days later, Wriggles herself had a nasty turn twice in a row and was taken back to HDU to be kept a closer eye on. She had tests taken to see if there was an infection brewing. The HDU was less lively; although there were more doctors and nurses, the atmosphere was more somber than the nursery room which could be quite jovial. I missed Bear, who I could laugh with. Mama was much more worried after relaxing, and would keep vigil until her last metro home some nights. She would sit by the cot, watching Wriggles sleep. I think she wished she could swop places with me, and be cosied up next to Wriggles, touching her fragile skin. I would smooth it with my soft paws and let her clasp her tiny fingers round me. After a few days and an improvement, we were allowed back into the nursery but to our distaste, our 'spot' had been taken over and we were relegated next to the bins. Yuk!

Around 34-35 weeks

Everyone expected Wriggles to kick the oxygen habit she had developed. She had been so clever at coming off the ventilator and CPAP relatively quickly, it was a surprise when her oxygen requirements began to rise. The nurses kept trying, but within minutes the alarms would ring out. Bear gave me a sympathetic look over the room. E's feeding really took off, and she and Bear went home when we had been in around seven weeks. It was quite sad without them. Mama and E's mum used to talk merrily through the day and chat with the nurses. All the babies we knew had gone home, so it was just me, Wriggles and Mama. Wriggles was finally learning to suck and swallow and taking tiny amounts of bottles. Just 10ml at first daily, but we built it up. I was so proud! After the third air challenge failing, it was decided that she would go home on oxygen. Things got very busy with forms to sign, oxygen to order and Mama to calm down. She was taken off to learn resuscitation and first aid and talked through using oxygen. Before we knew it, it was time to room in. Mama looked so proud, wheeling the cot with me and Wriggles in. The three of us settled into our little room. I did some gymnastics while Wriggles napped-it was all just too exciting!

Rooming In

We finally came home on Monday 15th November at midday. Mama's friend R came with us and snapped pictures to put in an album to treasure. It was such a surreal day, walking out. I was tucked up with Wriggles in the carseat. Mama had found me a tiny new knitted hat so I could have something to keep me warm against the brisk November air. It was hard to imagine that when I had come in September it had been warm and still! Mama had brought Wriggles a furry suit with ears so we could match, and it was so big she looked swallowed up! She looked so confused going out. I whispered that it would be alright, that we were going somewhere where Mama would never have to leave us again.

Going Home

Too Exciting

So, settled at home we were in bliss being all together again. Every morning, Mama looked so dazed as though she couldn't believe her luck. I noticed a crushed photograph stuck to the wall by her bed-I guess it was the next best thing to sleep with when Wriggles was far away across the city. Since coming home, we have had lots of highs and some lows. We have had adventures like going to the park and learning to sit up and some scares like dashes to hospital where Mama would unceremoniously shove me in a coat pocket! Although I got a bit squashed, I was glad to come along for the ride. I started out life as being Wriggles' protector and guardian, and I don't intend to give that up easily. Even though she is now FAR bigger than I am and has learnt to stand up, giggle and play peekaboo, I will always look out for her and remember the humid, quiet nights as I watched her grow and develop as if still inside her Mama. She turned into a real little girl, from a scrawny newborn and I feel privileged to watch her fall asleep and wake up every single day.

At home, around 37 weeks

Growing up, 19 months old

Wriggles was one of the lucky ones. Preterm birth (before 37 weeks) is the number one cause of mortality for newborns and is the second leading cause of mortality in the under 5s, second only to pneumonia. Premature birth is one thing that is not specific to poorer countries, although economic and social circumstances do play a part. It is a worldwide problem and one that is one the rise. Every year, 15 million babies are born too early and of these, 1.1 million will sadly die. Many others will have substantial problems relating to prematurity. In the UK, there is a current rate of 7.8% of live births being premature and this is estimated to be increasing at a rate of 1.5%. The UK is ranked 46th out of 184 countries when looking at their premature birth rates. I personally found this surprisingly high, but then considering there are around 60,000 premature births per year maybe I shouldn't have been. All of this is frankly, rubbish and the really rubbish thing?

It could be prevented.

There are a known number of factors which increase premature birth that should be implemented either pre-conception or addressed as early as possible. Women and their carers need to be empowered with the right information to look after themselves and their developing children. No one wants to face the prospect of losing their child, so things need to step up to ensure that all women, across the world have a better chance of carrying to term. 15 million is too many. The Born Too Soon report is the first of it's kind, bringing international figures together and uniting in a new goal to halve the mortality figures by 2025, a goal championed by the UN.

 

 

Join in the Twitter party between 3-4pm today if you are in the UK, using the hashtag #borntoosoon tweeting with @tommys_baby.If you have written a post about premature birth or the Born Too Soon report, then linnk up at Not Even A Bag of Sugar.

Decisions decisions

I have always been rubbish at making decisions. Always. Ever since I was a little girl, I have been terminally hopeless at making any sort of choices and generally happy to tag along with what someone else decides. The only exceptions are things I passionately believe in and very personal things. Most small things, I'll certainly put my tuppence in, but will often get swept up with other things. Partly, I'm quite laid back, and partly I'm hopeless at articulating what I want. I find it doesn't help that I also have a stubborn set of ideals and morals which I often at odds with the real world, and the confusion batters me into submission or delaying everything.

The best decision I have ever made is Wriggles. I had never even vaguely considered being a single parent, and when she was first born and my mind was in a state of complete shock, all I could think of was that she needed and deserved the love, time and materialism of a traditional, secure and loving family. Until the shock subsided and my own mind crept back out into the sunlight, it didn't cross my mind that I could give her the love of two parents and try to make ends meet with everything else. For a while, I was desperately sad but adamant in that I could not and would not be able to provide. I knew people with far less than I had had babies and raised happy, healthy children but for whatever reason, I simply could not see myself in that role. I was determined that someone else would be best for her. I would go home late at night after spending the days by her incubator and read up on success stories of adoption and foster care, and cry at the thought I might not see my girl grow up with my own eyes. Not see her learn to giggle and be an angel in her first Nativity play, or make her birthday cakes and spend hours washing her socks. By this point I had come to terms with my surprise preemie and cautiously began to fall in love, but I was at odds with what I thought I believed in. I could not make a decision and every single day, almost hourly, veered between thinking through the options. Eventually it got to a point where I could not contemplate signing legal papers denying my motherhood; the thought of saying goodbye for good made me feel physically sick and hysterical and I could not even think of the notion without ending up in floods of tears. I remember vividly being told that there was a foster placement if I wanted it, and the fingers of icy dread gripping my heart and freezing my life on the spot. Oh god, what have I done... I had still been spending all my days with tiny Wriggles, doing her cares and holding her close, learning to love her and fight for her with a passion that took me by surprise. I only felt alive when she was with me, the rest of the time I was just existing. Suddenly, the very real contemplation of this being for nothing and loosing what had become most dear to me was too much. I knew in an instant that I would do whatever it took but that I had to leap into the void of complete unknown and pledge my life to this tiny, sick being and battle with every fibre of my being to make this, my little family, work. And so that is what I did. There were no more questions about woulds and coulds and anyone or anything that got in my way or threatened my daughter or me would have errr, me to deal with. Honest: I can be (a little bit) scary when I want to be.

I wish I could say that this experience has changed my indecisiveness for good. Alas it hasn't! I do find things easier now, but will still run back and forth thinking a thousand what-ifs. I can't even begin to say yes or no without looking at every angle, twice, and every outcome. Even if it is as simple as 'tea of coffee'!

Tomorrow I have to meet my boss and hear about the staffing restructure at my work. All I know so far is that we all need to step up and take on more responsibility. I suspect this means as well as more work, more hours, more flexibility and generally less faffing about with paperclips. I am torn-I want to be the provider so my daughter grows up proud, but having had the last few weeks off I feel more alive and calmer. My pace of life has slowed down and though it is tough and drained being locked indoors against a rain lashed outside while the toddler shrieks at getting stuck standing times and needs rescuing approximately 8364543931 times in an afternoon, I would take that hands down over filing invoices. Several mothers I know are now ending maternity leave and returning to work and for some reason, the thought of leaving a job feels selfish. I don't even know for certain what the new job description will hold, how financially stable or otherwise I would be not working so need to do some thinking and listening. I'm trying not to get ahead of myself and to prioritise what is most important. Value baked beans for tea everynight in exchange for endless afternoons on the swings? Or being able to go for lunches out and having to brush my hair three mornings a week?

WHY can I not make a bloody decision!

Neonatal Charities

As well as large and vital charities like Bliss among others, many neonatal units up and down the country have their own smaller charity attached that supports both the unit itself paying for medical equipment ontop of the NHS budget to ensure the units remain cutting edge, contributing to research projects, looking after parent and family welfare, paying for extra staff and providing support for the families be they in for a day or 6 months.

My local neonatal unit is at the Royal Victoria Infirmary, Newcastle-upon-Tyne. Ward 35 houses the intensive care, high dependency and special care rooms that make up the unit. It cares for over 600 babies a year born anywhere in the Northern region and at any one time can take 34 babies. It is one of the bigger units in the UK and last year, won the Big Heart (by Mother & Baby magazine and Bliss) award for Neonatal Unit of the Year; not a prize taken lightly when you think of all the fantastic units that save lives every single day. It is by sheer luck that it is my local unit. After university, I applied for jobs liberally and it just so happened my first offer was in my university town of Newcastle so there I stayed in a city suburb, before my daughter came along very prematurely in a matter of a few months. Because of the size of the unit and the specialist Intensive Care it provides, it meant we did not have to be transferred, potentially many, many miles away like many families.

"Reassurance"

I am always surprised by a common reaction to prematurity and low birth weights. I'm not speaking for all or other premmy parents as they may not hold my views; everyone has their own opinions and anything surrounding personal experiences or children is so intensely intimate that we will all deal with situations and people very differently.

My daughter was born just under 28 weeks weighing 1090g (2lbs 5oz) which roughly is on the fiftieth centile.

"That's a really good weight."

"It's a really good gestation."

"It's really all plain sailing now isn't it?"

"Ah well, these things happen. It's fine now."

Now. Just because Wriggles was born at a good weight for her gestation, I do not count 1090g as a good weight.

"Normal"

Yesterday morning I was idly listening to the...gulp...Archers omnibus, whilst chasing a newly crawling Wriggles around when I heard the storyline about a heart attack. Bloody Archers, first they have the premature baby storyline (reduced me to hysterical tears over the dinner table at Christmas just weeks after Wriggles reached 'term') and now one about hearts! A lump rose to my throat and I was transported back to the Intensive Care waiting rooms of my father and beautiful daughter within seconds, scared and tired in an empty clinical world.

I also fittingly read a discussion on "normality" after trauma and if you ever return to your former state or feel like you fit back in with the world. Can you, and are you, 'normal' again?

Kangaroo Care

One of my biggest regrets about Wriggles' stay in NICU/SCBU was the Kangaroo Care, or rather lack ok it.

Kangaroo Care is essentially skin-to-skin, and consists of popping a baby down your jumper or similar. If you want to fast-track your relationship with a nurse, this is a great way to get them fumbling around your bra as they rescue little limbs and caught up wires. You won't feel shy asking for help after that with them! Depending on the gestation and size of your baby, they may still be very small and likely to potentially get lost inside your clothes. The first time I did it, I lost count of the amount of times that poor Lisa, the nurse, had to rescue Wriggles from inside my dress. She would have been about 30-31 weeks and was still a titch. It very much improved my relationship with Lisa though!

Kangaroo Care has many great benefits for premature babies; the heat from the parent's body means that they do not have to struggle maintaining their temperatures thus saving precious calories, deeper and longer sleep can be established, it is comfort and security for both parties,

Growing Up: Wriggles in Review in SCBU

SCBU felt like a very transitory place. It certainly did not not enhance any feeling of parenthood, and in many ways was quite bleak as no one wanted to be there and being there is something of a dread for any expectant parent. When your baby is born all you want is to hold them, have them with you, go home and start life. You do not want to be stuck in a clinical environment physically separated from your child, having limitations on contact and involvement and holding your breath, waiting to see if the next day holds good or bad news. For newborns, bad news should be that they have been sick for the millionth time and you have officially run out of clean t-shirts. It should not be that they have required resuscitation, have a life-threatening infection or have had a brain bleed which may or may not affect their development and life chances.

We spent nine weeks in total on the unit; one week in NICU (Intensive care) and eight weeks 'feeding and growing'. We were one of the lucky families. Nothing majorly serious happened during our stay which was as straightforward as it can be for a premature baby. Yes, it was one step forward then about six back, yes she still had apnoea's (stopping breathing) and bradycardias (slowing heart rate) meaning she needed varying degrees of stimulation, yes she needed various medication to get her through to the next step, yes she required breathing support, but she was not affected by many of the afflictions which sadly too many premature babies and their parents have to experience. The only blip was, after being in air for a few weeks, she began to tire and had to go back on to low-flow oxygen via a nasal cannula. Unfortunately, rather than wean her back of this her requirement crept up and when she started oral feeds (34 weeks gestation) she needed more and more. After fits and starts, she began to get the hang of bottle feeding and as the magic words "home time" began to be whispered it looked like she was going home on oxygen.

 

Many parents are left reeling from SCBU months and years later. It is such an alien place that is to the be the ground for the some of the best and worst moments of your life as a family.  You have a baby; but you don't have a baby. And few people understand. They try, people really try but again, it is so alien.What do you say to someone who has a baby in a critical condition? What can you do for a friend who is experiencing grief? It is human nature to put a good spin on things, "don't worry, it'll be alright in the end", but sometimes this is not what we need. Personally, I felt desperate that people should acknowledge how hard it was. I mean, can you imagine leaving a tiny, sick baby while you go home? Can you imagine giving birth then existing separately whilst other people care for your baby? Can you imagine asking permission to just touch their hand? On one hand, you are so grateful to the medical staff for saving your baby, ensuring you do have a happy future, but on the other you are almost seething with resentment that it should be you taking care and being a parent.

Everyone deals with the experience very differently. This briefly was mine, and in hindsight my pleas I wish I had had the strength to say out loud to people at the time. They may sound selfish in places, but I cannot convey enough how distressing it can be:

• This is one of the hardest times for me. Don't try and make it better: the only way it is better is either by turning back the clock or turning it forward being at home
• Please don't crowd me. I spend all day, whilst sitting solitary by an incubator, surrounded by people who rightly know all my private business, who record things I might say and who know every movement I make.
• Please let me get to know my baby first. I know everyone is excited by a new baby and wants to take part, meet them and have fun but I am still bonding with my baby. It is hard, really hard. Let us have some space. We will be glad of the company when we are ready, but only then.
• I really don't care if your next door neighbour bar two has a cousin twice removed whom was born 16 weeks early and now is a Nobel prize winning weight lifting millionaire hunk
• Don't keep saying it will be alright in the end. That is one of the worst things about this: there is no way of knowing if it will be. 
• Once we get home, it will be like starting all over again. My baby might be well over a month old, but will likely only be reaching the stage of being effectively newborn. So it might take a lot longer than you think
• This will not go away overnight. I might really need a shoulder to cry on months down the line. Repeatedly. Please don't tell me to pull myself together and be grateful. It still hurts.

Before I even started blogging myself, here are three great posts by other bloggers about life in SCBU and how it feels, how frustrating it can be and how to help a friend or relative who might be experiencing it:

Edspire

Mummy Pink Wellies

Diary of a Premmy Mum

SCBU seems to sum up having a premature baby; it is a physical place where we can attribute blame or sorrow if we need to, rather than a more abstract concept or uncertainty that does not have a name. I treasure my keepsakes for being physical bits of history at a time where I was mentally struggling intensely and was for the best part on another planet just to get through, which means in part I feel robbed of creating special and happy memories. They and SCBU/NICU are the beginning of a journey which can define some peoples parenting experience, as it does not stop when you leave. I found we had follow up appointments, regular development checks, and when it transpired things were going more slowly, began to receive referrals to more specialist teams. These were all down to prematurity and the long-lasting affects. It never ceases to amaze me that being born weeks early can mean years of catching up. You simply don't pick up where you left off once outside the womb. Many are lucky and catch up between 2-5 years of age but equally many are left with long lasting problems, either physically, socially or cognitively. Of course, like anything these can be from mild to severe and can be managed, but it is not something any parent expects to have to contend with. It does not affect the love you have for your child, it just is something that as a parent you learn to accept and let go of some of your dreams of "My Ideal Perfect Family". It is learning that perfect has many forms.

Growing up: Wriggles in Review!

It's that time of year again, spring cleaning my frankly horrific flat. In a delayed New Year state of reminiscing I have also been getting very nostalgic, not least as I've been boxed up grown-out-of baby clothes and coming across things still packed up from the last move, in April 2011. So to start the year off (again. Yes I do realise it's now 7th January not 1st) I am looking back at Wriggles' life so far and how we came to this point where we are.

The past 16 months have been very high and low. It has been a real struggle sometimes, so completely not what I expected with your first baby. I'm pretty sure this is true for every new family, but on top of this I have emerged with a wealth of medical knowledge and can hold my own in a doctors round. My mental "fog" is now much clearer than it has been. I'm not sure whether the past muddle has been PND, Post Traumatic Stress or a mixture of both, flitting smoothly from one to the other, but it has snatched memories I will never get back which makes me very sad. I am proud of where we are now: not least because I got here in the main part on my own.

As I have been clearing and sorting, I've been reflecting on what physically is truly precious to keep. Answer: not much. However there are some special things like any Mummy that I will treasure forever. Favourite tiny outfits; cot sheets that smell of baby, or at least baby scented washing powder... My most treasured possessions of the physical variety stem back from our time in Special Care. I do have things which mean a lot pre-Wriggles and more recent things, but the one thing I would be bereft of is a pink box (above). This was collected whilst in SCBU and the box and yellow diary were gifts from Tiny Lives, the charity attached to our unit that fundraises for life-saving new equipment and provides vital family support. 

In this treasure trove are the following: diary of our stay, Wriggles' hospital band, my hospital band, the information sellotaped to her cot, some prem-baby socks never worn, her blood pressure cuff, the photograph that I slept with all the time she was in (so it was the first thing I saw in the morning and the last thing at night), the probe which conducted her oxygen sats traces, her first dummies and her first (well not literally first; replica of) nappy.

It is so easy to forget how small she was. Born at 1090g (2lbs 5 and a bit oz) at just under 28 weeks gestation, she was not a lot bigger than my hand. Maybe head to toe she was two small hands long, maybe just under. She was, and this is crass to compare, about the size of a handpuppet. I don't know why it is so desperate for me not to forget, and we all know size isn't everything, but these physical reminders bring it back like yesterday. Our journeys make us who we are, and SCBU strongly shaped the early days of our lives and later ones two. Any ongoing issues now are put down directly to prematurity, so these objects from the 'beginning' are very precious for me. They make up for the absence of what I ideally wanted for my newborn. I do have some happy memories of SCBU, first cuddles, brief attempts at kangaroo care, days spent by the incubator, watching her grow and the privilege of seeing what would otherwise be a developing foetus but it is the stark reminders of the reality rather than the New Baby! cards which mean much more to me.

 

Images: 1. first dummy next to standard 0 months + dummy 2. first nappy next to newborn sized babygro, which finally fitted Wriggles somewhere between 4-5 months! 3. Look how far I've come!

My other precious object is not in the box because it is in the photo-album. It is the first picture ever taken of her, in NICU (Neonatal Intensive Care Unit) on the night of her birth shortly after she had arrived at the unit from a&e at a different hospital. She is battered, bruised and bright red. Her skin is see-through and still smeared with blood, only one eye had opened and there is a slight perferation to her chect. There are ECG leads on and a tube attaching her to a ventilator. It is not a pretty picture. But I love it. It gives me back what I wasn't there to see. I couldn't hold her hand but it does give me that piece of history to hold on to.

Ready, Steady.....nearly...almost...get set....hold on a minute....

Wriggles is at the stage of development where she is teetering on the edge of many things. She is on the right track for many things but Not Quite There Yet. I am amazed at babies who seem to develop new things overnight without so much as previously hinting that they ever felt an inclination to bash boxes together or starting clinging on the sofa for dear life. Every milestone of Wriggles' is a proud moment that is the culmination of months and months of frustration and practise. She is ALMOST at the crawling stage, NEARLY using two hands together, GETTING THERE at the idea of being able to sit up from lying down, GEARING UP for speech...ish... Sometimes waiting feels forever as others move on quicker and sometimes it feels as if it all goes so quickly that each day is a bonus as my baby is very quickly turning into a not-so-baby anymore.

She is roughly 16 months old now, nearly 13 months corrected. She can now sit unaided, bash things together, blow raspberries, 'say' "mamammamama" "bababbabba" "gggagguuuu" and "llllllllllllllllalllaallaoooloooo" though none with meaning, wave at her reflection, kiss her reflection, blow kisses/do a fish impersonation (it is questionable), roll over from back to front, get up from front onto all fours and then get stuck and to be able to reach out to all inappropriate objects she cannot have. It is uncanny that babies are willing to go on intrepid adventures to try and nibble to plug cable but will not shift for a Proper Educational Toy.... We're still a bit at the stuck beetle stage of mobility but she is very good with a wooden spoon and a toy xylophone and cardboard box.

Today we had a really positive physiotherapy appointment. When discharged from SCBU, we automatically got physio as Wriggles had bad torticollis (sqwiffy neck) and pronounced plagiocephaly (shorn off head). As she was also born under 28 weeks and had a negligible history, it was also advised to keep up the physio once the torticollis sorted itself out. This turned out to be rather good as it was about then that the Great Hospital Obsession started. Shortly after PICU, Wriggles appeared to have forgotten her left side existed, rather worrying both me and the physio. Typically by the time we saw a paediatrician she had remembered and luckily has kept remembering. We have been very lucky in that the two community physios we have had have been wonderful and a credit to the NHS. They have easily been some of the most supportive and helpful health care professionals I have met and are willing to go above and beyond, and have helped me chase up referrals and access opportunities. Just prior to Christmas we had a developmental assessment with the paediatrics team which was so-so; it was nothing I didn't know, notably that all her skill areas carry a 'lag' (2-3 months behind average age of mastering a skill, but showing signs of getting there), her gross motor skills are 'delayed' (a more noticeable delay that may need attention) but cognitively and socially she is a bright button with brilliant hearing and sight. All in all, considering prematurity, a cardiac arrest and the ten or so admissions over the year, they were pretty pleased. At the next assessment, if her gross motor skills are not looking vastly improved they will arrange an MRI to determine if there is any long-lasting damage in the brain that may have occurred since the last brain scan carried out at 6 weeks actual. And I thought we had kicked the hospital! 

Watching my little girl grapple with a large inflatable toy today, I was astounded again by how much she has come on. Both at birth and after PICU, both the doctors and myself did not know what to expect. "No promises" they said. "We can't tell you she will be fine". Sometimes wait and see seems a horrid deadline of worry and anguish, but on days like today, there is no wait and see, just my baby and me. She seems relatively and miraculously unscathed. Albeit with a 'lag' and some 'delay' but I have no doubt she will catch up in time, just maybe not as fast as hoped. And on her terms-she is certainly a stubborn personality who knows her mind.

I think in the mean time I had better start baby-proofing the flat in earnest!

Jingle Bells, Jingle Bells

.......jingle all the way!

Christmas is nearly upon us and I am so excited for it. I have always really liked Christmas (who doesn't apart from Scrooge?) but since having A Small Person it has got a million times better.  It is like it gives you that extra reason to celebrate and deck the house in fairylights. Wriggles isn't generally that bothered with the whole shebang to date, but she does quite like trying to pull the Christmas tree ontop of her head. She is such a magpie (baubles, other people's watches, my glasses, tin foil, mince pie cases, teaspoons, forks, tin openers, the kettle, god forbid once a lunge for the breadknife........) at present as would quite happily spend all the time rolling in the decoration. I finally remembered I have fairylights today as popped them on the tree and it was a treat to see her little face light up. We have also been into central Newcastle to see the legendary deliciously over the top Fenwicks window display, which rendered her a bit nonplussed, and this morning went to the TinyTalk Christmas Party. I have spent evenings this week making her a Christmas tree fancy dress in the style of a novelty pinafore. It was something refreshing from mindlessly debating about whether to wash up and felt like a bit of an awakening of Old Me. BC (before child) I had completed a BA (Hons) in Fine Art and been part of a craft "mafia" and run an admittedly, mini business selling prints and textile good. I would spend regular Sundays lugging wares around craft fairs and inevitably spending all my profits on the cake stall.

I digress; Wriggles today looked as cute as a (festive) button and I am supposed to be packing to leave Sunday morning to battle the intrepid world of the East Coast mainline to spend Christmas with my parents and younger sister in Kent. I am apprehensive about 5 hours on a train with a busy-handed-and-minded baby who is beginning to discover her own mind, but looking forward to being surrounded by family as to me that is the essence of Christmas. The only thing I very mildly dislike about my life, is that I am quite far geographically from my family and being without a partner, it can get a little lonely at times. Day to day I am very content but it would be lovely to see them more often. I am hopeful that in the next couple of years I will be able to move closer, as I'm pretty certain my parents miss seeing Wriggles grow up week-to-week and I would not turn away some more support! Telephones are a godsend, but there is nothing like a face to face blether over a cup of tea. 

It feels as if this is going to be the first Christmas; last year she was "officially" two weeks old and very much a newborn smidge. She was on oxygen and full of the premature baby snuffle (think woodland animal in the undergrowth) and newborn bleat. She slept through quite a bit of Christmas Day and worried most guests who thought she looked very fragile. I was also in a muddle; partly the fug of being a new mum as she has been home a little over a month so i was in the thick of night feeds and erratic routine fatigue, and partly I was still reeling from the SCBU experience. My mum was very keen to show Wriggles off to all but it was simply to overwhelming for me (not to mention the terror of contracting RSV!). "I don't understand" my mum complained after I had a bit of a freak out after being surrounded by her very extrovert work friends who I did not know, "why aren't you PROUD of her? She's wonderful!" I tried to explain but couldn't make her see and to an extent, still can't. It isn't that at all; I am so proud of her it hurts. She is to me, perfect in every single way and more. Every time I hold her, I fall in love all over again. The simple fact is, that after the shock of the birth and hospital, my mind was the fragile thing not her. Whether it was fallout from the months previous, post-natal depression or post-traumatic stress I do not know and it is really beside the point now, but after the weeks and weeks of having to ask for permission to touch my baby, leaving her every night and breath holding after every step back, I desperately needed both time and space to establish the bond proper. In my last post I wrote about the first time we were alone, rooming in. After that blissful weekend, it was nearly five months before we got some space to ourselves as for various reasons I had to return to a flat-share as I was unable to move in time for discharge. I lived with a well-meaning but very challenging housemate in slightly complicated circumstances. It was a bleak time for me as I struggled to accept my daughter would ever love me and that I was a passable parent. I lived in constant fear she preferred everyone else and felt as if I was swimming underwater as the world went about it's business up above with no concern for me. 

This last year has been challenging, but when I look back we have both come on in leaps and bounds. I really could have done without the constant hospital admissions (Wriggles definitely could have done without them) but if I put those aside, I could be a different person from last year. Although I haven't put all my demons to rest, I now have a gorgeous 15 month old who is growing up fast. I have a clear idea of her wants and needs, and we (I think!) understand each other through the medium of raspberries, moos and quacks and errrrr some guesswork. We have a rough routine; I can tell you her favourite things (books; Christmas Hedgehog, stuffed donkey, making noise, Old Macdonald and Wheels on the Bus, peekaboo and spinning toys around) and pet hates (anything food related, wearing any hats apart from party hats, putting her coat on, wiping noses, the hoover), she knows her name and she knows and importantly trusts me. We are each others constants and I adore on weekends getting her into my bed first thing in the morning so we can sleepily come to nose-to-nose and she can blissfully poke my eye out. I can recognise the difference between a rational and irrational thought (mine) and I can ask for help, even if I don't always get it. I know that a bad day does not equal a bad mum and that I am doing my best, which is all I can do, and so far it seems to be working. I would love to say that anxiety is a thing of the past and I am a social butterfly but it is not true-yet! But it is better, far far better. I have had time now, especially since moving in April. It has meant the world and my personal sanity having a space I can call ours, just ours, and being able to establish a private routine and family and to be able to exercise choice on my part of what we do, when we do and who we see. 

This Christmas is a testament to how far we have come AND an excuse for a party!

Strictly a Strictly fan

I am a Strictly addict.

The first thing I do when I come home from work after taking Wriggles out the pushchair is to pop on BBC2 for a bit of It Takes Two . Not only are there the delights of sequins, Anton’s cardigan collection and oh, the dancing, I have a very soppy reason for feeling the Strictly love.

As I prepared to take Wriggles home from SCBU aged ten weeks, I got the opportunity of “rooming in” as it was confirmed she would be coming home on oxygen. They left the air challenges as late as possible but it was not happening; she just liked her 0.1 of oxygen and that was that. The other option was dealing with a bright purple baby-just so not in season! Saturday 13^th November, two months old exactly, I arrived bright and early (well early for lunchtime! I had bright intentions for being there for 9am ward rounds but had not counted on how long oxygen installation would take and tying up loose ends likes last minute panics of being without an adequate nappy supply, missing a changing mat and the onset of early winter bringing doubt on if I had enough miniature cardigans; nowhere near. She was in cardigans that would fit a 3 year old all winter) with my little suitcase for a weekend mini break at Room 1, overlooking Leazes Park and the ambulance depot. The room was little like a Travelodge but with a hospital-style television and oxygen. I was given a swipe card to whizz in and out and permission to utilise the kettle in the day room of the maternity ward on which the room were located. The only quibble I had was on the ward opposite my room was a poster proclaiming “Baby is better in than out!” and the image of a sick premature baby next to a frankly 6-month looking newborn cuddled up with his mum. It’s a fair point but I am yet to meet a mother of a premature child who delights in the fact their child was born early and did all they could to induce premature labour. Slightly an insensitive place to display such a poster, if you have to display it at all, given that the ward was next to NICU and all the parents from SCBU roomed in there prior to hometime.

Anyway back to rooming in and dear old Strictly! After making the bed and an all important coffee, I got to do the most exciting bit of all. I went through the doors into SCBU and very proudly got to wheel the cot containing my baby round to my room. It felt unbelievably intrepid to go to the great world of about 10m away, if that. But the sense of pride is pushing my baby, proclaiming ownership for one utterly beautiful infant, was amazing. A nurse helped hook her up to the oxygen that mysteriously lives in hospital walls and left us to it. Two long months and this was the first time that the pair of us had been alone together. Would I cope? Would she cope?! It was all too much for her so she had a nap. When she woke I successfully changed her and fed her (on my own!! Just me!!) and we settled down in the big chair to watch Anne Widdecombe pirouette dressed as a Christmas tree fairy. Being alone was a big deal for me. Obviously I knew she was mine, I had given birth to her after all, but with the overwhelming nature of SCBU and the nature of what I had been having to organise quickly in the last two months, it had not seemed real. I had felt like I was in a dream. The initial shock had worn off and I had been able to locate obvious love and some emotions, but I just didn’t feel like a mum, especially not her mum. That weekend I did. I was a parent. And not just any old parent-I was her parent. Her proud and irreplaceable parent, preparing to imminently take her home.

 I don’t think she was overly impressed with Strictly Come Dancing. I couldn’t even say with confidence she was overly impressed with me. But I had located my inner mummy at last and with joy welcomed the first night of many to come of hedgehog-like snuffling and night feeds and disruptions. Bliss!

This year she has slowly warmed to Strictly. Now I swear she lights up when the theme tune starts and she actually got quite excitable last weekend when Harry Judd started the charleston. Result!