Growing Up: Wriggles in Review on Home Oxygen

 At first, going home on oxygen seemed very daunting. It was easier than I imagined once I got used to it and more of an inconvenience than something of terrors. Wriggles was on just 0.1 litre-she just couldn't kick the habit and needed that little bit of help to ensure she did not plummet quickly or run into any trouble. We used the canisters rather than the concentrators, and had two large canisters about half my height for the flat, and a portable one for going out and about which neatly fitted into a rucksack for my back. Well; a specially designed rucksack rather than your average one. It did make me look like an astronaut and elicited some intrigued attention when leaving the house. I was once followed around Sainsburys by a man-it turned out his mother was going to be on home oxygen therapy too soon and he was curious to ask questions and was having trouble plucking up the courage!

There were good and bad points to be on home oxygen. Obviously the main one was that it was vital for Wriggles' survival and enabled her to grow and develope as she should. It also meant we could be at home rather than languishing by a cot on a paediatric ward. Other good points were that it meant we hit criteria to recieve some help, as it was an additional need and something that required specialist training.

Not only did potential babysitters need to be proficient in knowing the workings of a canister, the level of dosage, check the said infant was saturating well, what to do if it all went wrong and being able to administer first aid (CPR) they also had to be able to tape cannulas on to small babies who do not want cannulas or anything else taped on. Understandable really. The skills were easy to pick up; the main barrier was that it frightened the living daylights out of many people as it made Wriggles look far more vulnerable than she was. I was in no way ready to leave her for a night down the pub, but even if I wanted to, I would have been hard pushed to find someone willing. I was however helped out with FST, the Family Support Team from the Great North Children's Hospital and also a lovely lady from the Rainbow Trust who would run us to hospital appointments and help get groceries. Although we could have got by without these ladies, they really made a difference especially as I was a single parent, so had no other half to share the duties, the worries or the practicalities with. Or god forbid, the rushes to hospital.

Wriggles was in recipt of DLA (Disability Living Allowance) and we were able to apply for a Blue Badge for our non-existant car.  The former was incredibly helpful especially in getting to appointments, the latter was a nice thought.

The bad points were that annoying (have you tried to bathe a squirmy 'newborn' attached to a metre of plastic tubing? I would only advise it if you really have time on your hands and a penchant for frustration and are a sadist who enjoys torturing themself with the fear of getting bubbles in the cannula).  You need super-organisation for going up and down stairs to swop over from big to travel cylinders. You need a steely soul to prise off the sticky tape that holds the cannula in place on a regular basis to change it over and often have to treat sores on the face, unless you are lucky enough to find a sympathetic professional to prescribe duoderm tape. The other downpoint is the bloody tubing. You grow to be barely aware of it; until you trip over it with a full plate of beans on toast and stub your toe on a bookcase.

It is less of problem when they are very young; it was when Wriggles began to be more aware of the world around her it became more of a pest especially for her. Although we went home at 37 week, effectively 'term', making her a 'newborn' she had slightly less floppiness than a newborn having been undergoing physiotherapy on the neonatal unit for the past month and having built up a little strength. Tummy-time with tubing is no fun. She was a star though and powered through it.

In reality, the worst thing about home oxygen is the increased risk of RSV; Respiratory Syncytial Virus. This is a common virus that most people will get at some time, that is essentially cold-like. However, in the very young (6 weeks and under), premature, immunodeficient, those on oxygen therapy and those with chronic lung disease such as asthma and broncho pulmonary dysplasia, it can be very severe and can lead to stays in intensive care on ventilation and can sadly in some cases, be a primary cause of death.So we were advised to essentially take up hermiting for the winter months. Needless to say, you don't meet many people during hermitting. In fact, you see very few (not including the postman). Although the reasons were impeccable and Wriggles' health was paramount, I feel I missed out on vital mummy connections to make and having missed any antenatal friendships, it ended up being months before we so much as came across another mum and baby, which would have really helped in those early days, just to know I wasn't alone and that everyone finds it tough, oxygen or no.

But, we got through it. Now it seems a long time ago. In reality, it was just a year. And how things have changed. Wriggles still does tire easily and due the fact her lungs are not tip top and much of her energy goes into existing not growing, she is still quite small and i don't expect things to change anytime soon. But it gave her the best possible start and also enabled us to escape the confines of hospital, for which I am ever grateful.

What a difference a year makes

Good Riddance

Hurrah, January is nearly out the way!

I am not wishing life away, but I have no fondness whatsoever for January.

It is long.

It is cold.

It has normally sold out of Christmas selection boxes.

It is normally the season for the binmen to go on holiday meaning the rubbish is overflowing.

It needs at least two pairs of socks, most of which are missing, presumed eaten by the Hoover.

It is stripped of cheering sparkly tinsel, lest it bring you Bad Luck.

It is time to embrace the thermal vest, which could frankly could be anywhere in the flat.

It is very hard to persuade a strong-minded 1 year old to go out of the nice warm living room to the cold outside so that mummy can please buy some milk to have a cup of coffee.

It is full of sneezy noses.

It makes me wish I had shares in Kleenex.

Although actually, so far, Wriggles nor me have had a truly disgusting sniffle. Mild yes. Enough to hide under the blankets and watch CBeebies and read books all day, but nothing too vile (and I would like to keep it that way, please).

January is also slap bang in the middle of RSV season. Respiratory Syncytial Virus, or bronchiolitus as we are more familiar with, is bad news to most parents but strikes a gloom into the hearts of parents of premature, vulnerable and immunodeficient children. The risks are much more potent and the potential for complications is more acute. Every snuffle sets me on High Alert, and I know I am not alone. Because of this, Wriggles receives 'shots' to protect against this, in addition to the flu jab and winter-long antibiotics to see off any nasties. Today we had the last immunisation for the winter, which should be effective until the beginning of March where the blasted virus tails off it's dastardly work. Not only am I relieved to have gotten this over, I am also glad that it is one less trip to Outpatients to contend with, and one less activity involving the pour soul being stabbed with a needle. Hooray!

Long live February (nauseating Valentines Day notwithstanding)!

Smile

Augustus and His Smile by Catherine Rayner is one of my favourite books. I adore Catherine's illustrations which are classic, whimsical and full of character. This is one I will happily read again and again to Wriggles; if she will let me! It is one of the very first books I bought 'for her' when she was a few weeks old and still months away from being classed as 'term'. Once she came home I would show her pictures and read the story to her when I became stuck on what else to say to a newborn. (The books say talking to them is vital, but they are not very conversational!)

Augustus is a happy tiger until one day his smile goes missing. He sets out on an intrepid adventure to find his pesky runaway grin, taking in the treetops, the desert, the sea and the mountains. Rayner's pictures transport me instantly and her colour palette (it's the former art student in me!) is gorgeous. I love then enormous pictures that you feel like you could step into.

Luckily for Augustus, his smile is not far away. As he skips through the rain, he catches a familiar sight in a puddle....you'll never guess..his smile! Have a point and a chocolate biscuit all round if you got that one. 

It is a sweet tale without being nauseatingly twee, and I think the tiger and jungle setting makes it loveable for both boys and girls alike. I like the simplicity of it and the purity. toGranted, I have never met a materialistic tiger hellbent on this season's antelope handbag, but I think it has a really strong message that all you need to be happy is to be yourself and to enjoy life and all the experiences that it throws at you. My baby daughter already seems quite keen on throwing herself into life, and she has the most blissfully gorgeous cheeky smile that I hope will be plastered on her face for eternity. 

This story reminds me of all that I want for her-happiness. I can try to provide as best as I can and doubtless will sometimes fall short. I may not be able to literally bring her the mountains, the desert and the sea (THINK of the carbon footprint, not to mention airport tax... ) but I hope I can show her, or guide her through the richness of life enabling her to sample everything.
I think children become your "puddle" so to speak. We all have moments when we wobble and fall down and feel really, really rubbish or lost. But the magical thing about being being a mummy, is that you have this little mirror trailing around your legs; an infinite reminder about what life and living is all about. When I came home from work today, my daughter didn't want to play with her toys, she wanted me. It was either one of the more explicit times that she demanded unadulterated affection, or one of the first times I've really noticed since starting to shake off the fog of depression. We played on the living room floor, she sat on me as if I was a seaside donkey and we sang, tickled and laughed. As I plonked her into the bath, she would turn to me every few seconds inbetween gleefully splashing (her new trick), offering up a huge toothy grin. It made me feel all wibbley inside. It's such a soppy cliche, but her smile is my smile. 

When she looks at me, nothing else matters. 

When I was really struggling in the past, in the thick of hospital admissions and uncertainity and horrible doubts, I never thought I would be able to think as simply as that. I have always known that was the 'right answer' so to speak, but there always seemed to be a "but". I'm not naive enough to say that's it, the bad is all gone away and shall never return, life is so more complex than that and the human mind is more complex still, but I know what is real and what really matters. 

And that is what I want Wriggles to know most of all out of life: that happiness is more important than perfection. If you can be happy and make other people happy, then you're doing pretty well. As you become an adult, then a parent, it becomes a very intricate balancing act taking all sorts of factors into play to achieve such an end. What I'm learning is that you don't have to have it nailed completely, not all the time. Life evolves, what is important one day is not the next. But that's the great thing about special people. They don't change. My baby will be my baby in 50 years time and will be as cherished then as she is now, just a lot bigger. I don't know how our lives will pan out, I'm pretty sure that there will be hardships and heartache as well as lots of fun. I know realistically I can't keep her grinning the whole way through and that by the time she is grown up, I will be one of many people who are at the core of her life but I was there at the beginning. It's quite awe-inpsiring to think I set her on this journey as she makes her world around her. To go back to the book, that is why stories are so important. They help the smaller people see and equate things in their life with names and experiences. They provide pictures and words to confusion and consolidate rules that surround them, both the spoken and unspoken. And they always have a happy ending! (Or at least the good ones anyway) I think it is equally important for adults to sometimes be reminded of that, and hark back to very clear cut facts. We all know that good isn't always good and bad isn't always bad by the time we've grown up, but sometimes you need to shake off all the heavy 'stuff' and just look back into your puddle or whatever metaphor you want for yourself, and just relish in the better times. to stop thinking and worrying for a moment and just be.

Going Home Outfits

Going Home.

The beginning of the adventure.

There really is nothing like it, the dawning realisation that you are being let loose with a real life human being and no one is going to check up on you. Unless you have a really nosey Health Visitor.

Such an occassion needs a special outfit. It gave me something productive on a frivolous level to think about when sat in Special Care in the time leading up to discharge.

 Wriggles did not actually go home in her official New Home outfit. Although by the time we were ready to leave she was a whopping 5lbs 4oz, she was a titch and all the alleged 'tiny baby' and 'up to 5lb' prem baby clothes hung off her. She must have really heavy toes or something. Her new home outfit was going to be a white babygrow covered in red flowers. As it was, we went home in a plain white babygrow that was donated by SCBU and a little yellow knitted cardigan. As it was November and freezing, she had a furry white sleepsuit with ears on the hood, like a tiny polar bear. It meant something as I had bought it; so silly but with all the presents we had very kindly been given, all I had contributed was some nappies, a changemat and some Infacare. So this felt like I was making my mark. Her toy who had lived by the incubator with her, Mouse, also had a new hat for the occasion, off an Innocent smoothie bottle. Mouse stayed with Wriggles in the car seat to make sure she wasn't scared.

Have a look over at Dear Beautiful Boy for more first outfits as part of the new pretty.little.things linky. (I cannot work out how to add a badge yet!)

Ready for the Off

Special Delivery! Mouse looks quite a large toy, she is actually the size of my hand, legs included.

Too exciting....bether have a nap!

Hydrotherapy

Well, I have dragged out from the abyss that is my Spare Sock Drawer (a drawer full of holey, odd and threadbare socks and baggy tights and unsuitable pants For Emergencies Only-we all have one don't we....don't we????) my swimsuit, untouched for years, and laid it out ready for tomorrow. I have bought a miniature swimsuit from the Wriggly one (actually I've bought two as she is sort of between sizes and I didn't fancy the parade of getting a baby to try on a swimming costume in the changing rooms, that hates getting undressed/dressed at the best of times. Also, I don't think the Newcastle is yet ready for my tuneless rendition of Old MacDonald/Wheels on the Bus mash up, which at present is the only way to soothe said screaming not-so-infant) and even found a spare towel. Because tomorrow starts a round of hydrotherapy.

I am a bit nervous.

I suspect the last time anyone saw my legs outside encasing of jeans or woolly tights was probably slightly under two years ago. The last time someone saw me in a swimming costume, god help them, was errrrr quite a bit before that. I did go swimming* as a student and Wriggles has baths on a regular basis, but we are yet to brave the waters together. I am slightly nervous about dropping a slippy baby. I imagine it will make a very poor impression. Last night we had a "trial run" in a very deep bath. Wriggles was quite skittish at first but didn't hate it which bodes well. I am more nervous about catching the correct bus in the morning as we (well, I. It is definitely my fault) are pathologically late for everything, and also getting on said bus as the bus drivers in my area have a vendetta against pushchairs. 

Apart from that, it should be grand. Hydrotherapy is essentially a very warm swimming pool, around body temperature I think, to do exercises in and help decrease muscle tone and increase muscle strength. (Hydrotherapy is also a bit like colonic irrigation-but that is a different kind and one I definitely hope we will not be subjected too) It is said to help with a vast range of ailments and conditions and help build up physical strength. Hopefully also relax slightly stressed mummies! Wriggles has had regular physio since about 32 weeks gestation, still in an incubator in SCBU for Froggyitus**, a common prem condition, and continues to have it as her development is a bit erratic in areas. 

We are very lucky in that our community physio team is very proactive and the two physios we have seen have been utter sanity savers. Not only patient, but also very informative and willing to spend that extra bit of time explaining things and answering all of my pestering questions and deciphering doctor terminology. I like the more holistic approach they take also, rather than "Oh I'll just transfer you to so-and-so....." and they way they are willing to chase up other people!

It was a surprise, mostly pleasant, to be able to access hydrotherapy. They do a Pre-School Program which at just shy of 18 months Wriggles is now eligible for. She shows signs of high muscle tone as well as Chronic Froggyitus and still is not able to bear weight even with support for more than a millisecond. Neither I nor our physio have doubt she will get there, but given there was a place, it was deemed A Good Idea to go for early intervention and try and kickstart some mobility and increase her physical strength, which is lacking in the lower limbs.  It just feels a bit weird to have to go along to these things. We had such a relatively easy ride in SCBU that the aftermath was a rude shock and I still have a surprise every time I am reminded my baby has some delays and slowness in development that either could or could not be significant in some shape or form. Like many other things, you never expect it to happen to you. It hasn't stopped me worrying about the future, but I am grateful for the present, which I think she is doing very well at!

I may craft some medals out of left-over chocolate money to get into the Olympics vibe...

*this is a bit of an exaggeration. The swimming pool near my friend's house did a "Swim Disco" on Friday nights were they stuck on lights, music and a mirror ball and opened up the Sauna. I would do one or two lengths and then me and my friend would stick in the sauna gossiping until our skin felt fried and we escaped to the pub.
**NOT a genuine medical term, but when said prem splays limbs out like a mad frog. Premature babies lack the ability to work against gravity, meaning that they cannot move between the stretching out and curling up positions. This is why positioning is so important, especially in the early days. It recreates positions in the womb, rather than letting the baby lie in a heap which is not very comfortable and will add to muscle tone problems.

Click! Learning how to take pictures

 

This rather sums up my "photography resolution" for the year ahead. I have been taking more photographs over the last few months, partly as batteries were on a super-save offer so I actually have spares in the house and partly as I am keenly aware my baby is growing up fast and soon I will have a boisterous child rather than gurgly infant, and only a handful of memories of that first year and a bit which is so precious. It's funny how in the newborn period you wander round as a sleep deprived zombie cursing the days for not going fast enough and 6 months later you mourn the fact that your floppy baffled person is far more person and the baffled one is now you. I took few photographs in the early days in hospital and now regret that. It was painful at the time and still hurts to look back on, but it was still her life and to adopt a talk-show-host-ism "our journey".

So, I want evidence of all the time we spend together. 

Also it will be quite funny when her first boyfriend comes round.

1. Locate manual for camera. Failing that, try to deduce what all the fancypants settings actually mean or failing even that (likely) work out when the flash is needed and when it is not. Likewise when to angle the shot so it is not almost entirely consumed my rare moments of sun streaming in (see above)

2. Try to remove immense quantity of mess from shot

3. Don't let baby too near camera: she will attempt to chew it

4. Lure friends round to operate camera and/or work out the 'timer' setting. There are very very few pictures of Wriggles with me which I find sad as I spend every day with her. I want a physical memory of that for both of us to look back on.

Despite the fact the above photograph is technically dreadful, I quite like it.  Apart from the fact you can't tell I have food on my top, haven't quite brushed my hair and Wriggles has a slightly snotty nose, we appear to have seamlessly blended into one. Awwww....

Finding the Perfect Gift

My best friend from university has recently found out she is pregnant and I am delighted for her. Her little bean is due in June 2012 and in the mean time I am trying to find the perfect present. She is cautiously waiting until 24 weeks (viability; Wriggles' premature experience has made her walk on eggshells) before shouting it out to the world who hasn't already guessed, but they are keeping the gender strictly under wraps.

I think this is really quite a nice idea; so many newborn or indeed any baby items are so gender stereotyped that it seems like a special challenge to find a really lovely present for a newborn. No pink! No blue! And we all know that lovely as white is, beautiful and pure, it is the least practical colour for a newborn. I imagine that family members will overdose on teddy bears (it seems to be some divine law) and given that as a shattered new parent you can only muster up so much polite excitement about novelty sloganned bibs, I really want to find a longer-term keepsake. Also, I remember selfishly thinking when Wriggles was born that it would be quite nice to dress my own daughter some days!

I have narrowed it down to a few things and I may well try and "road test" them first as I personally am quite enamoured with them!

• "My Life Journal" by Suck Uk. Essentially a 100 year diary, this is a beautifully bound scrapbook that is split up into year with each year separated by seasons with pockets for photos, keepsakes and special pictures and awards. There is a world map so you can mark everywhere you lived and went on holiday, a body map to chart bumps, bruises, war-wounds and tattoos and many other things to mark off. It sounds a lovely idea to fill up and take over from your parents as you grow older.

• I am a little obsessed with Folksy and saw this amazingly cute Memory Make Stegosaurus , by Molly Moo and Jessica Too. It is simple: you sent them some sentimental fabric, and they craft a cuddly dinosaur from it! Who doesn't like a dinosaur? This may need some consultation with the expectant parents (I imagine nabbing my friend's favourite jumper will not endear me to her..) but there are so many possibilities of making a really personal present.

• Then lastly is this photo book by Sassy, which I must confess has already lured me into clicking "buy"! (Why Amazon, why? Internet shopping just does not feel like real shopping. Dangerous) The 'Look Book' is a photo album for babies, made out of sturdy boards with bright colours and some texture, it has 7 pockets to put your own pictures in. Apparently the handle also doubles up as a teething ring; genius! Well at least it looks genius-we shall soon see!

I carn't cub. I've just bid wodged!

....so begins mine and Wriggles' new favourite program.

Possibly the best ever.

Also it ellicited the first ever proper laugh out loud giggle from my daughter from a television/film/animation sequence. She has always enjoyed being glued to watching CBeebies, but this has gone beyond smiles... "Hahahahahhha". Don't tell anyone, but it was actually quite a relief to see that she a) understand and b) appreciated slapstick. I cannot imagine having a daughter who patronisingly shakes her head as I guffaw at the likes of Rowan Atkison, Miranda Hart and The Young Ones sighing "oh mummy, you're so SAD".

Anyway, I shall not keep you on the edge of your sofa. It is The Pingwings.

I'll be honest, I had never actually heard of it until winter 2010 when Oliver Postgate sadly died. I was far far far too young to see it broadcast, and it appears to have disappeared into the ether until recently, when some Postgate fanatics started harping on about it. Frankly I don't blame them.

When Oliver Postgate and Peter Firmin first set up their company Smallfilms and began making animation in earnest, they experimented with a variety of early forms of animation. The Pingwings was the first puppet animation they filmed and paved the way for favourites such as the later Clangers and Bagpuss. They filmed two series of very short episodes including ones of greatness such as 'The Ice Cream Tree' (my other favourite thing ever is ice cream: a winner from as soon as the credits rolled). Mama, Papa, Penny, Paul and Baby Pingwing live on the Firmin's farm in Kent, which incidentally is near where I grew up. It is charming, whimsical, full of quirky humour and a very very naughty baby Pingwing. I rather nervously noted that Wriggles was taking notes as she watched Baby Pingwing steal the farmers ice cream, "accidentally" run off for a day trip to the seaside and turn her mama's flippers grey.

For the record: "I carn't cub, I've just bid wodged" translates as "I can't come, I've just been washed". Obviously. Papa Pingwing is pegged to the washing line by his beak (ladies with irritating spouses, take note).

I shall leave you with our also Postage and Firmin-inspired favourite song of the moment Row, Row, Row your Boat from Bagpuss, 'The Ballet Shoe'. When grumpface starts getting a bit tired and cross, I have taken to sticking this on and belting it out whilst she giggles herself silly. I am pretty sure the neighbours are sick to their back teeth of me now......ho hum......

My Tuesday Day (scribbled down by Wriggles)*

*as inspired/thieved from Diary of a Premmy Mum and Mummy Pink wellies without the cool pictures.

8am.

Ouch. Something has happened. Something dreadful. My foot hurts. Oh-it's stuck in the cot bars. That must be why. Actually so is my other one. How an earth did they get there? Hang on....I'm sure I went to sleep the other way around. And facing the other way. And my blanket has jumped underneath me. Stupid blanket. MUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUMMMMMMMMMMMMM

8:02am

Rescued. Still in my cot the right way round. Muuuuuuuuuum. I'm still awake even if my feet are somewhere more sensible. Mummmmmm. What do you mean you're tired still?!

8:03am

"The marvellous mechanical Mouse Orchestra! We will find it we wil bind it....." Ooooh it's the singing Bagpuss Mouse toy!!

8:07am

MUUUUUUUUUUUUUUUM

8:07 and a bit am

"The marvellous mechanical Mouse Orchestra! We will find it we wil bind it....." Ooooh it's the singing Bagpuss Mouse toy again!!

8:11am 

MUUUUM. Breakfast! Mummmmmmm! MUM MUM MuM. Oh blast I'm stuck again.

8:12am

Wheeeeeeeeeeeee I'm flying. Oh wait. Hang on, it's you. Well about time Mummy! Is it breakfast now? Right now? Where is breakfast? Where where where? I'm hungry. Oh you're so unfair putting the kettle on for YOU. Oh it's for me and my bottle. Yum yum yum yum yum. Forgiven? What? Who? Just give me the milk. Slurp slurp slurp.

8:34am

No I do not want the toast. That is your stupid breakfast. Unless I can rip it up and put it in the sofa? Ooooh nice hot mug. Can I have that?

8:35am

Hmmmph. 

8:55am

You aren't going to believe it but there are two of me. Look, one is in that shiny thing. Hello! Helllo!!!! Hello!!! Another baby! And Me #2 has got a cheese-and-mouse-you too. Good taste. 

9:20am

I could have sworn I had a mummy but she seems to have disappeared. The bathroom is making a very loud noise. Bored. MUUUUUM. Oh there you are. Are we playing the hairdryer game? Nice noisy hairdryer! Ooooh oohooh it tickles!

9:31am

Just because you want to get dressed I see no reason why that means I should too. Get off get off get off. Ooh hello toes. Can I put them in my nappy, please? You're no fun, mummy. I want to play with my toes. Oh a sock. Hello sock!

9:45am

Maybe clothes aren't so bad after all. Hmm that mug looks like a good game. Look how good I am at reaching over veeerrrrryyyy cunningly.........why am I face down on the carpet? Where is the mug? Can we read books? Mummy is quite strange. And very slow. She reads them very slowly with words. Picture books are called picture books for a reason, mummy. She just doesn't get it.

10:18am
I think it is time for Elevenses and a very small cat nap....of precisely thirteen seconds. I'm awake!!!

10:55am
 Attack! I'm being attacked! Something bright pink has swooped down on me and swallowed up one of my arms. Haahaa fooled you, I've got my arm back. Oh it's trying again. The unfairness! Now it's going for the other one! Well, tough luck 'cos I've just freed my first arm. Again?! Really? stupid coat. Hmpppph.

11:03am
Apparently "we're late". This means we have to walk in the pushchair at break-neck speed along the road. Wheeeee I like racing! Vrrrroooom a car! Eek it's a bit chilly. Maybe I should have let the mittens win after all.

11:18am
Hooray now I remember! Tuesdays are Jo Jingles days. Babies! Hello fellow comrades! Oh hello someone's granny. Yes, I am adorable. Is it time to meet Jo yet? I wonder what is under this here red rug? Oooh hello....

12:01pm
I might let the coat win just this once as I have been allowed to pull all of the contents out of mummy's handbag and I poked a little boy in the eye. He pulled my hair and stole my rattle; I think it might be true love.
Are we going to the coffee shop? I only eat lunch in coffee shops**.

12:06pm
Can I have a coffee too?

12:17pm
And your biscuit?

12:56pm
Mmmmmmmmm full of milk and a little bit of mushed mango and mummy's biscuit crumbs......quite sleepy now......ooh a traffic light!!

13:29pm
Back home. Can I have a top-up slurp and then I might go to - zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.

2:47pm
MUUUUUUUUUUUUUUUUMMMMMMMMMMMMM I'm stuck in the cot bars again!
Is it time for more milk? I think so. Yum yum yum. Oooh the mug is back again. Ouch. I appear to be stuck in the carpet once more. Memo to self: must work on balancing.
Come on mummy, I want to look at this and this and this and this and this and mouse and this and hedgehog and ooooh tasty hedegehog nose and this and this and it makes a sound and this and this and this and look I'm on all fours! Why aren't I moving?

15:31pm
I appear to have become wedged halfway underneath the sofa. Maybe that explains why people move forwards not shuffle backwards. Might adopt change of tack in attempts at movement.

16:01pm
My friend Gemma has come round! I hope all friends don't make you do leg stretches and set you tasks and make you put all your limbs in funny places. It is very tiring. But she does have a really good bag of toys and even better has a set of official looking cards hung around her neck. Now that is a good friend.

16:53pm
I want a cuddle. I'm tired. My legs feel wobbly. I'm tired. Mmmmmm nice mummy cuddles. Can we look at all the pictures of me on the fridge? Thank you mummy. Hello me! That's better. I like looking at my baby pictures. Did you know it is clinically proven to ward off grumpy symptons and appease tantrums?*** It is just about as good as being turned upside down or doing the hokey cokey. Mwhahahah I don't know what mummy is going to do when I am a Big Girl with Stroppy Fits in public. No fridges or room to swing me by ankles then!****

17:33pm
I DO NOT WANT ANY TEA. WE ARE NOT IN A COFFEE SHOP.
GET IT AWAY.
GET IT AWAY.
GET IT AWAY!

Is it time for Abney and Teal?

17:56pm
Get that spoon away from me. I can see you, mummy.

18:02pm
I can still see you. It's not going to work.

18:17pm
Can I have your dinner? But only if it is turned upside down on the carpet. Haha fooled you. We've been over this before, I am NOT eating anything.

19:05pm

Hooray it's bathtime. I have just learnt how to splash and it is actually amazing. If I bring my arm down like this it goes SPLOSH and water goes everywhere. Look look I'll do it again! I really like bath times now. The only bit I dislike is getting out and getting dried off.
It's not FAIR. Luckily I have been learning about the art of practise tantrums from my new friend Elodie and have been showing my mummy how much I intensely dislike being taken out the bath. I don't think she is very impressed.

19:14pm
Mmmmm nice snuggly jimjams. As it is winter in the frozen North I have special fleece sleepsuits to keep me warm as I am an expert at kicking my blankets off. I suspect this is a genetic flaw as when mummy wakes up her bed is half on the floor and half nibbling her up. Nice snuggle bedtime hugs too and kisses. I will do my nice goldfish impersonation now before ny bedtime milk. Guzzle guzzle.

19:38pm
See you in the morni--zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

**this genuinely is true. Alas. Or pubs. Since the middle of December, Wriggles has only eaten solids in public if there is a whizzy coffee machine nearby. Is there a medical condition which generates such symptoms? (other than Impending Toddleritus)

***this is a bit of a fib, but I am not letting on to Wriggles

****this is nowhere near as dangerous as it sounds

Hooray

Hooray, a success!

As you may or may not be able to deduce from this here snapshot of my resident pest, she has eaten some food. This may not seem a particularly news-worthy event for a 16 month old.
It is.
I won't go as far to proclaim it is a miracle, but it is not far off.
For reasons knows best to Wriggles, she does not eat.

At least, apart from a handful of coffee shop based exceptions, nothing solid or even petit filous based has passed her lips since mid-December. 

Not that she was really eating before then either.

At 6 months she weaned as any normal baby (I think. I don't have any other baby experience but she seemed to do what most other baffled infants did ie. glower at spoon, spew out baby mush, repeat process for a few days and then wolf down an entire pureed banana) and then The Trouble started. Namely a trip up to Intensive Care with pneumonia, and when we returned to the outside world things were a bit, well, buggered. Initially she ate like a horse for all of errr 3 days. Then overnight it was as if a switch had been flicked: nada.

She would get distressed at the mere sight of cutlery, refused to even look at food, point blank ignored me when I ate, gag like mad even on bottles and would not put anything at all near her mouth apart from her trusted possessions: a bottle, Christmas Hedgehog's nose, dummy, her favourite rattle and my fingers.

The months that followed were trying. For a start we were backwards and forwards to the wards as respiratory infection followed respiratory infection. Inbetween, I tried to re-establish weaning and wax lyrical about the Joys of Food. Not hard; I love eating. I quite like playing with food. I tried every trick in the book and invented some of my own. Every time I thought I'd cracked it (Yes, she WILL lick the spoon at least if Spot the Dog 'feeds' her while I bellow "The Grand Old Duke of York"!) it was a false alarm and like in snakes and ladders we would be back on square one at the bottle of the pile. Eventually she began to hold a spoon if it was empty and play with a bowl. Then she expanded gradually the things she would put near her face and in her mouth. She would sometimes touch food and warily paint both of us in puree and yoghurt. She began to slowly take minuscule amounts of puree and fromage frais and hold small pieces of finger food like biscuits or rice cakes.

Around 14 months we were on a high at two small portions of a 'stage one' fruit puree or yogurt daily and occasional practise-chewing of crackers and breadsticks. I proudly reported that to the dietician in December and of course the next day she stopped eating again and has not resumed yet until today! Please let this not be another fad...

It is hard to suss out. The combined medical opinion is that it is a muddled up combination of "oral trauma" from repeated nasogasteric tube insertions, intubation (ventilation), multiple breathing support occasions which are all centered around the face be it via mask, cannula or tube, amounting to a juvenile 'phobia' or aversion; combined with terrible reflux which took a very long time to be medicated adequately which has likely damaged her oesophagus even if not severely or long-term; an over sensitive gag reflex and immature stomach valve, meaning that sometimes even brushing her lips result in the entire stomach contents of the day landing on your carpet. Well, my carpet; oral sensory issues; possible other sensory dislikes (won't entertain even holding moist-like textures like steamed carrot, fruit, jelly) and as she has become older, general sheer-bloody-mindedness of approaching toddlerhood. Or as the paed says when he is stuck "Could be a prem thing." My instinct is that what was once a genuine real issue with feeding has now morphed into familial behaviour; even if it no longer hurts or distresses her to taste, she imagines it will so won't even try a large amount of the time. Argh!

Except for lunchtime today!!!

Growing up: Wriggles in Review Rooming in and Going Home

If SCBU was fraught with mixed emotions and sadness, rooming in was sheer elation. It marked a very significant point in our journey: 1. home time and beginning of my true journey of parenthood and 2. the first private moment with Wriggles since the very first moment of birth, (which to be honest was not great as I was trying to speak to emergency services whilst administering CPR whilst holding her in the crook of my arm still attached via umbilical cord in a state on intense shock).

The nurses had tried three times to leave Wriggles in air to test whether she was dependant totally on the oxygen. Unfortunately she was, and her sats would dip to worryingly low levels quickly without it. And this was without energy consuming activities like feeding! So the oxygen tanks were ordered and on Saturday 13th November, exactly two months old, I moved in to the parents flat with my overnight bag and a jittery sense of excitement. It was bizarre but just what I needed. Being on our own was bliss. It was such a relief to be able to cuddle her for as long as she would tolerate, feed her on demand and say whatever I wanted without someone listening it. And best of all, it was how I imagine! I fell in love even further and it confirmed that my deepest wish was to have my baby with me forever. The weekend went smoothly and on Monday we were officially signed out and free to go! I was slightly nervous; being a mum in hospital was one thing but home with no one to ask advice of right away was another. Plus she was on oxygen, increasing SIDS risk and everything had to be super-sterile as the risk of germs to a premature baby are well, risky, and even more wobbly to one on oxygen with Chronic Lung Disease.

I think unstrapping Wriggles out of the carseat in my flat is possibly one of my proudest moments to date. It officially marked the end of SCBU and the beginning of complete Independence. I kept expecting the hospital to ring up and say there had been a mistake, but of course they didn't. Everything felt such a novelty being at home.

Later that day, one of the community nurses came out to check we were settling in fine and to go over any questions about the oxygen cannisters. Someone would visit twice a week to check her sats (to ensure they were 94% and above) and weigh her weekly to make sure that she was still growing at a suitable rate, as having weaker lungs meant that much more energy was diverted into breathing rather than being a baby. Wriggles settled in very well. So well, she rapidly went for a nap. Seeing her in the moses basket, dwarfed, was a lovely moment. It was so homely and cosy, and no-one had wanted to take her temperature and count her respiratory rate for at least 24 hours! Oh dear. That meant it was down to me.....

Eyes

 "She talks with her eyes."

So many people have said this to me. And it is so true. You may not yet be verbal but my goodness you are expressive. Your large and beautiful eyes are like a window to yourself. I could stare into them all day as if I had all the time in the world and not a care.

When I was lost for words when you were in Special Care I would stare endlessly into them, pure and utter jet black, newly opened, trying to decipher your face and thoughts. The premature and new infant can only see 6-8 inches infront of them and may not recognise you instantly if you change your appearance. They see black and white. I held you close and peered practically nose against the incubator doors.

When you first began to smile in the beginning of January 2011 it felt like my world began to glow that little bit more. It seemed like I had passed the test. You recognised me and I knew it, really knew it.

The very worst time was when you were 7 months old in Intensive Care and unconcious. Not being able to look into your eyes and see them dart about and drink everything in made it seem like I had lost my baby. The only thing that reassured me I still had you was the monitering screen which recorded your vital signs. You were passive and still, like a doll. When you regained conciousness and drowsily, confused opened them again there was colour and meaning to my life once more and a happiness I did not think possible. It was the visible sign that recovery was happening. 


Your eyes are like mine, I think. They have the colouring of your Great-Grandma but look like mine and your aunt's. One is always that little bit more open and wider than the other, a slightly sqwiffy glint! Yours are always so eager, so bright and full of energy. They are piercing and make my heart skip a beat everytime I look into them.  

They also often have bags underneath them as you dislike napping in the day, adament not to miss a second of the life you love! But I promise, you won't miss a thing. I'll make sure the best bits are still there waiting for you. 

One of my favourite things is to have you snuggled up with me in my bed on lazy weekend mornings so we can come-to together, nose to nose. There is nothing better than to wake up than a pair of bright, cheeky eyes filling your vision as if to say "Come on! Hurry up! There's a whole new day ahead!" as you poke out my eyes. But I'll forgive you. This time.

My Letter

Dear Me,

It's ok to have a bad day everyone-everyone else does.

It's ok not to be perfect. Who have you met that is? Brilliant, yes. Perfect, no. Your mum was not perfect. Your nanny was not perfect. So why do you have to be?

A good family is not always two parents. It is a loving household.

A good home is not a big house (by the way, you will not live in a council flat forever)

Few people want to go to work.

Everyone has a tough time sometimes.

Tomorrow is a brand new day.

You live in a happy house. 

You have a happy and contented and clever baby.

So you must be doing something right. That means that you can relax.

Love from,

Your more rational brain 

x

A Confused Mummy

Today I am a confused mummy. Well,  most days I am a confused mummy but today I am struggling with some of my feelings.

I wonder what it is like to have an "average" baby.

I wonder if there is such an encompassing thing as an "average" or "normal" baby or experience of having one.

There are daily reminders that I have a premature baby who has had some struggles. She is brilliant and amazing and as feisty as the next temperamental feisty madam but as sole parent and carer I am feeling a bit swamped at times both with all the information I have to take on board and all the running around to appointments I still have to keep. Is this normal?! I frankly have no idea any more. 

Wriggles, or her new temporary nickname Noisebag, is a little over 16 months and 13 corrected. To date we are currently under neonatology, paediatrics, neurology (luckily her consultant paed doubles up as this to reduce clinics!), dieticians, physiotherapy and are awaiting the referral from speech and language. Thankfully we have now been released from community nursing, respiratory and social work, (which we were automatically under as she had spent a certain period of time in hospital so you automatically get a helpful form-filler-er, not because I am incompetent; at least that is the information I was given....). We also have to attend very regular weigh-ins as Wriggles/Noisebag still generally refuses solids or gags about 70% of the time and as I have had a few blip-y moments along the way, I have to report every now and then to the GP and Health visitors to affirm I have no intention of jumping off a cliff or do not wander about Sainsburys wringing my hands and howling for England. My HV has decided that obviously it has all come about because I do not regularly attend infant massage groups. I can tell her that I have no concern about my bond with Wriggles but am just exhausted from weekly hospital visits until I am blue in the face but she still keeps turning up at my front door with a grubby plastic doll and sunflower oil trilling about the benefits.

 At present, excepting the weekend, every day I am not at work, I am attending an outpatient clinic for Wriggles, ferrying around to appointments or pacifying a nude Noisebag in the community scales at the Postnatal Centre. Now time is moving on, we have started receiving invites for groups of "additional needs" children also, which gives me very mixed feelings. I do not see Wriggles as having additional needs. Lags/delays yes, I fully accept that, but additional needs? She doesn't need extra care or specific skills to look after her at present. She might be doing things at her own pace but so far there is nothing I think she won't do and as far as I am aware this view is shared by the doctors. It really is a hard one; obviously I wouldn't give two hoots if she did need extra care and help, as she is my star and I love her unequivocally. I don't want to seem selfish as I am very aware we are lucky to be in 'the system' and in an area where there is a range of activities for children of all stages and have some professionals that go above and beyond their jobs. It is great that there is help to nudge her in the right direction and iron out some bumps as they show up, really it is. Honest. I'm sure if we didn't get these opportunities then I would be on my soapbox grumping about exclusions and worrying frantically that she wouldn't catch up or ever eat more than a bit of mashed banana once a month.

The "problem" if indeed there is one and I am not utterly crackers, is that when we go to a "normal" Mother and Baby group, I still often feel like I am from another planet and when we go to a "special" group I feel a complete fraud. Throughout year one of having a little creature, I spent the first two months in hospital followed by three months as a hermit with a baby on oxygen in the winter months when RSV was rife and my road was closed off due to snowdrifts and ice. There was then a marvellous hiatus of a few weeks when I began to go out and about, had more visits from friends, began to wean her with success and began to address the impending return to work. Then we abruptly wound up in intensive care and spent the next six months being in and out and in and out and in and out and in and you get the picture. Thankfully things have calmed down after birthday numero uno and I have deliberately made two term-long booking at baby groups on my days off to make sure that we get out, socialise and do normal things between the dreaded appointments. We have been for coffee with mums and babies and began to find our feet on days off together and it is a teeny weeny bit scary but marvellous. Tentatively, I have even told the 'story' to fellow mums I see, against my HV's 'advice' that I will scare them off and they will avoid us-so far this has proved to be utter codswallop and no one picks friendships in this way, especially given that whatever has happened, what is happening now is that we all have increasingly chaos-inducing mess-making becoming-independent darlings/monsters/I-could-have-sworn-she-was-a-tiny-baby-only-yesterday's and all feel like a bit of a joke every now and then even with a beautiful house and a Mr Darcy lookalike husband. I just wish there were more days in the week, or that no one had to work, to be able to spend more time doing this and less time sat in the waiting rooms clutching medical notes. I miss the year I lost out on swanning around to groups and gazing into my baby's eyes as it feels like I spent a lot of it sat anxiously at a cot-side in hospital.

I know in my heart of hearts that most people feel like this. So many of us are torn between mummy duties and well, the rest of life. Faced with the media, literature and swathes of advertising portraying Perfection, all parents, all people stumble around trying their best and adjusting their ideas like crazy to find their own corner of reality.

The main thing is I have a very nice baby and generally, life is pretty good.

So my new New Years Resolutions are: 

1. spring-clean brain

2. stop grumbling
3. look forwards not backwards (you WILL trip over or walk into a proverbial lampost)

Cure for a Cold

Wriggles is FULL of snot and quite rightly, grumps. It is rubbish having a cold. Part of my attempts at cheering up are reading lots of stories especially those with silly pictures and one such book is the wonderful Norman the Slug with a Silly Shell by Sue Hendra. I first found this through one of her other titles, Barry the Fish with Fingers which was one of my favourite books to read when I worked at Seven Stories and had to join in the daily storytelling.

Norman is a ridiculous story about a slug who wants to be a snail. They are so colourful and fun and amazing and cool and brilliant and beautiful and....he can't join in. He just isn't the same, and has to just watch as they laugh and make snail-pyramids together. Then, one sad and lonely evening Norman has a great idea. He might not be a real snail but he could find a shell to join in the fun! He experiments with a range of ideas before hitting the jackpot.

And his dreams come true; the snails LOVE Norman and his new silly shell. Now he can join in to his hearts content. Unfortunately, the snails aren't the only one smitten with Norman's new shell. A peckish bird also has his eye on it and swoops down to spoil Norman's fun. Suddenly, being a snail isn't so much fun and Norman has to use his Slug Powers to escape.

This a wonderfully silly tale which is as much about being yourself as it is about slugs, snails and doughnuts with sprinkles on. As much as we may be envious of other people, we all have our own special things which make us who we are and are perfectly suited to us. And of course, the snails realise in the end that Norman is still one cool slug, even when he is just being a slug. This should inspire confidence in young children who can see past the slug-snail storyline and provide plenty of giggles for everyone else inbetween. The bright, colourful graphics are eye catching and simple and provide plenty to talk about.

I introduced this book to my bookworm when she was probably only about five months old (two corrected) and would point out the colours, the shapes and the snails. At 13 months corrected she still does not have the concentration for the whole story but enjoys the pictures and "gets" the visual slapstick. It is a book I think that will grow with her as she gets older and has worries that her 'shell' might not be good enough, when of course it is the bestest in the whole wide world!

Watch

Watch out, there's on one year old about!

I think it is time to admit to myself my scrap of a baby is growing up. I'm not going as far to call her a toddler (there is a distinct lack of toddling for a start) but she is definitely full of mischief and intent to cause said mischief, is hell-bent on trying to find some method of mobility and is learning new things all the time. In the last few weeks she has (I'm so proud, can you tell?):

• bang two objects together
• splash in the bath when she means to, not just accidentally
• splash me when she is in the bath
• today she deliberately dropped an item into a tin (the baking kind, not an empty baked beans one, I do have some standards) and thought the noise was hilarious
• become incredibly keen on finding out what is underneath the rugs

She also has the attention span of a diminutive gnat. Toys get roughly 30 seconds each unless it is the remote control, the wooden spoon (allowed) or my mug of coffee (definitely not allowed) or anything I thought I had successfully hidden. I'm delighted after her prematurity and stints on oxygen that her eyesight is brilliant-but slightly too brilliant for me!

 We did though receive this frankly amazing belated-Christmas present in the post though from my sister, her aunty. It is a cheese-and-mouse puppet. Of COURSE. What else?! There are five finger puppet mice who live in the hollow textiles wedge of cheese. Well, I had barely got it out the package before Wriggles was in peals of laughter. For that afternoon, all I had to do was just show it to her before she was honking away. Then came the miraculous discovery that the mice come out if you pull their tails. She was entranced. I must confess that I am also, and long after she went to bed was rearranging the mice inside...

 Other recent hits include this push along Brio hedgehog. Due to the infamous premature-baby-snorty-snuffle (think small animal waffling in the hedgerows) she had for months after coming home, she has become besieged with all manner of hedgehog items. This one has a wobbly head that bobs up and down and whooshes along the floor which means that it is great from her point of view. The other favourite is a wind-up mouse. It was claiming to be a Christmas decoration from M&S but is far too sinister to adorn a tree-think lonely mouse head in Santa hat. 

Hit number-I've-lost-count are some RSPB Birds that sing genuine birdsong if you press their tummy/go within a foot of them. Wriggles received three (robin has gone AWOL already) and they are excellent, especially at diffusing the beginnings of tantrums, a welcome teething distraction and also for pacifying nappy-changes or coat-putting-on episodes.

I have also dug out my double-sided sticky tape (I was an addict all the way through my fine art degree; there is no way I'd have passed without it) and tried to 'make' some toys as she gets through everything at a frightening ruthless speed and does not have the motor skills or strength to be mobile to explore. So far I have stuck sparkly paper inside a cardboard box and attached rubber bands to make a twanging sound when strictly supervised to avoid surprised baby and THIS (left) is my attempt at what I shall coin 'A rattle-y photo box'. Namely a cardboard box filled with lentils, meticulously masking taped shut as shut can be and covered in photographs. She is very keen on looking at herself (well she is pretty beautiful) and also making a Very Big Noise so this buys me at least two minutes of peace. Maybe I will get to drink that mug of coffee after all......