Home Alone

And, so today is the First Real Day of being home alone, with a new tube. Although not that different from an NG, it feels a huge step. You see, the NG felt familiar. Yes it was horrid to be re-passed so often and we got a fair few stares when out and about, but it was what I knew. From NICU and from time and time again during periods of hospitalised illness and the failed plan A, I was fairly good at working and caring for the NG. I knew the pump and gravity feeds, I knew about aspirating and pHs. I knew what number it was passed down to (28) and that there was no point putting a silk (longer term, can be left longer before replacement) one in because they never lasted longer than 3 days against Wriggles' reflux. With the PEG, or G-Tube, we still have the pump, the same feed, the same volume, aspiring to the same pump rate, the same medication, the same port on the tubing line to give medicines, the same routine...but one big difference. It was applied during a surgical procedure, meaning there is a wound; the stoma site. Caring for a surgical wound is not quite the same as taping Hypafix (breathable adhesive) to a cheek. On a scale of hardness to do, it is hardly up there, just takes a bit more time in the day and extra care in keeping things sterile and clean. An infection broke out before we had made it out of hospital so she needs antibiotics twice daily and gauze over it to keeping it (and her clothes!) protected. Still, barely rocket science.

But my goodness it feels draining.

It is because it is the more intrusive physical evidence yet that a) there has been a rocky road and b) that is not going to go away any time soon? (The tube that is and rocky road)

I'm not going to sit here and amateur psycho-analyse my feelings towards tube feeding or anything else. It would be nothing short of dull and do no good at all. Let's just leave it at yes I am mighty glad for possibly the first time since leaving NICU she is receiving a sufficient intake of both fluid, calories and vitamins and minerals, yes I am really relieved that part of the battle is quits now and yes I am over the moon that the risk of aspiration pneumonia is reduced  but also yes, I hate it. It sticks out, it causes my daughter some pain right now and frustrates her because she can't understand why she is too sore to crawl or sit for too long by herself.

Presumably because anything using the core muscles disturbs the g-tube placement and niggles at the site, for the moment Wriggles cannot crawl or sit for long by herself. She can pull to stand and cruise for small periods of time and climb on my sofa, but as she is still weak needs watching like a hawk (3 accidents in half an hour this morning....) and frequently, help. Not that she will ask for it or thank you! I know this is a teething hiccup while her body gets used to everything and stops treating it as a foreign object, and whilst the stomach lining stops trying to pull back away. Still, it is sad to see my happy nutcase loose some independence and confidence literally overnight. Because of the increased vomiting, her feeds are a lot slower than normal so in some ways, it makes things easier, but in others there are not really words to describe seeing your tearaway attached to a feeding pump for right now, anything from 15 hours a day. We have read a lot of books.

By bedtime, Wriggles was finally able to muster some strength through gritted teeth to crawl a bit. Whilst attached to the feeding pump. Understandably she screamed, though as much in reply to me saying "Wriggles, please sit down" to it pulling. Thankfully today, all feeds have stayed down so I am hopeful to slightly increase the timings tomorrow as today there wasn't much longer than an hour between each feed. I'm hoping the antibiotics kick in soon and am looking forward to being able to catch a community nurse on Monday as the stoma is very much oozing and the tape used for the dressing seems to leave Wriggles with angry red marks. Would it be too much to ask for one thing to be straight forward?!

Still, I now feel a bit more confident than I thought I would. I started writing this at lunchtime, feeling like I was being put through a mangle (and a tiny one at that) and only a few hours on feel far more like a human being. Thanks to the fantastic Feeding Tube Awareness and their wealth on information and on-line tutorials and trouble shooting, I have worked out a better way of 'venting' the tube (removing painful trapped wind; minor bonus of having a tube) which causes more frequent vomiting and pain. Some friends dropped by around tea time, and when asked the inevitable "how long is it for?" I managed to neither snap nor cry when I said I didn't know: it could be a year, it could potentially be forever or at least the bulk of childhood. The short answer: however long it needs to be there for. Now we have gone and got it, I am not compromising my child's health or trivialising what may be a "minor" procedure but is rather an major adjustment. I know fully well that neither Wriggles not me will successfully adapt overnight and that because apart from no fluids by mouth, her dietary needs are fluid so will hopefully change as she grows, matures and becomes less aversive.

Who knows, I may even venture out for an adventure tomorrow...  Maybe!

Rain rain go away

I cannot begin to tell you how fed up I am with this rain. Except that if you live in the UK too, chances are you share my feelings and are busy with the same sentiment. The trouble I have is a simple equation:

Heavy rain + cooped up toddler = Not Very Good

Toddlers, need entertaining. Toddlers like variety. Toddlers like destruction and space to roam. Mummies do not like getting wet. Thus, being stuck inside the house is a nightmare that will often result in two people climbing the walls by 4:45pm. After a while, you run out of producing tricks, your voice goes hoarse from singing Wind the Bobbin Up a little too enthusiastically at first not anticipating how many times it would have to be repeated, there is nothing actually left in a drawer or cupboard, all the crayons have gone missed (lobbed God knows where) and every new and exciting (really!!) activity is met me snarls of defiance and lunging for the remote/telephone/bread knife/plug sockets/bin.

"Helping" address a card

Bookworm at home ravaging the shelves

In good weather, I have tricks up my sleeve. Namely ducks, pigs, the seaside, the playground, picnics outside, drawing on the path with chalk...I know, I do have ENORMOUS sleeves. In torrential floods, I must admit I am stumped. There is only so many times you can haunt soft play before you either go bankrupt or mad, and the great problem is getting anywhere in lashing monsoons. Yesterday we braved it and dashed out to toddler group which is all of five minutes walk away. Today, after miserably watching the drizzle we seized the moment and decided to go and bother the quiet literary types at the City Library. Luckily everyone else had the same idea and there wasn't a single literary type in sight. Instead there were some small children full of beans, what looked suspiciously like a great thong of the Unwashed talking earnestly about dragons and dungeons and taking up all the tables with their special tablecloths and lanky anaemic looking limbs, and several elderly ladies asking about Fifty Shades of Grey.

Our City Library is now huge. It has six floors including a nursery and creche, exhibition space, gigantic paper mache tiger, permanently shut job seekers advice (how fitting in this climate!) and a severe lack of books. It is very clean and modern, but does bear a minor resemblance more to a shopping centre or empty airport lounge as opposed to a centre of learning. Luckily it does contain children's books and a small area to amuse said small children. There is a rather exciting pretend tree and a huge print covering both a wall and curtains of clouds in the sky, so you can pretend you are outdoors. A bonus for us today, was there were some wide steps leading up to this. At the weekend, my friend decided her honorary aunt duty was to teach Wriggles how to climb up stairs. In just under an hour, Wriggles went from clumsily scrambling over legs to being able to shimmy up a lengthy and steep flight of stairs without a second glance. So being able to practise this new skill was a winner as far as she was concerned!

Mastering the stairs

Wriggles by name, Wriggles by nature

 As it was in the same building, we were able to call by the nursery Wriggles had temporarily been in whilst I finished work after our poor childminder had had to bring her retirement forward drastically. Due to our recent hospital admission, Wriggles had missed her last day so it was a lovely opportunity to say thank you and pick up anything she had left. Although she hadn't been there long, she had been assigned a key worker and had a folder full of 'drawings', observations, photographs of what she had been up to and descriptions of how her days there were filled. It is not just a lovely record to keep, but was also somewhat of a relief reading through the notes especially those in reference to the EYFS framework and child development. Although we know she has delays, and has been officially marked down now as globally delayed, the observations were glowing with her skills and it was clear that those partaking in her care were every bit as chuffed as I was every time she did something new. She may seem young for her age, but she is very much getting there and it was with both pride and pleasure that I noticed she is ticking many of the boxes for 8-20 month old development in social, cognitive, personal care, language and gross/fine motor skills. The speech and walking may be missing, but she is quite adept at communicating her needs, charming the pants off making relationships on her own terms and getting around to her wishes. I knew at home she was beginning to grasp the concept that things have uses but this made me laugh:

"....Wriggles was exploring the (toy!) mop, turning it upside down. Earlier in the day, she found the sweeping brush and proceeded to attempt to try and manipulate it to 'clean' the floor and also then to brush her hair."

I must admit, the idea of my Wriggles, who if she didn't look less baby-like by the day could easily pass for 10-11 month old, wrestling with a full-sized sweeping brush and attempting to comb her hair with it made me snort out loud. 

That aside though, the report was full of positivity and it will certainly be accompanying us to our next development review. It backs up what I have always thought and said, in many areas she is going at full steam ahead and what some areas may lack in, others such as social skills and confidence, she more than makes up in. One horrible review now months ago, it was implied that by being from a single parent background, she wouldn't be able to be brought on as much as a child from a more traditional background. I was told that unless she went quite substantially to nursery among lots of children, she would flounder. Yes, these recent observations have been made in a nursery setting now (albeit a very small indeed one), but she has clearly managed perfectly well to get this far with so much character by either being with me, or the childminder who only had one other little person one day a week. There might only be two of us, but since that stinging remark I have been determined to make sure we socialise and go to lots of activities in groups and see lots of friends to widen her circle. And it looks like it is working! She is not even 2 yet, so even on a purely hypothetical level as finances would not allow any nursery, I am not comfortable with having her away from me unnecessarily. She is a bright button and unless we become hermits, I refuse to believe her development will be harmed in any way by not rigidly following guidelines in a large group of peers.

Now if that rain can just stop for one minute to be able to get out and socialise....

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!

Inspired: Room for a Wriggles

This weekend, I've been having a super clear and sort out of the flat. Until now, I have shacked up with Wriggles in her bedroom. When we first moved, she was only just 5 months corrected and had just had a major infection, so I slept in the same room to adhere to SIDS advice and for my peace of mind. As she was frequently ill, I stayed and by the time we emerged into the healthier period we are in now, with the worst behind us, I have stayed out of convenience. One of the most annoying things about being a singleton is that you need to wait for kindly friends to pop over to give a hand with moving heavy furniture or DIY jobs!

But. Moving time is here. We both now have our own bedrooms and to celebrate, I would like to jazz the neutral walls up a touch (neutral is an understatement. They are generic cheap-as-chips magnolia with sandpapery cheap sludge colour carpet, as can be found in most inexpensively kitted out places by landlords trying to cut corners!) and give our rooms some personality. I love the Inspired linky that Dear Beautiful Boy has been running, so joining in, here are some of the items that I am coveting and drawing inspiration from to give Wriggles a room fit for a queen.

I love this bold tree print; it is a fabric from Swedish favourites Ikea. Not only is it affordable at £4.99 a metre but it is thicker than many cottons, so I have been thinking about attempting to whizz up some curtains. Note; "attempting" is key here. In theory, I know how to run up curtains having watched Kirsty Allsopp's 'Handmade Home' programme and internet tutorials, how I would actually fare is another matter. Oh and that time thing to. But I would like to!

The room has a short but very wide window so any curtain will be quite a feature. I do not want a super girly room brimming  over with fairies and pink, so would like to keep with more green and blue palette.

And while I'm looking at birds, I have utterly fallen in love with this owl in a teacup print by illustrator Heather Scott. Heather sells on Etsy and Folksy under Sparklehen. Her prints are vibrant and whimsical and I already have several bought over time. The teacup reminds me slightly of Alice in Wonderland, and the colours are perfect. Who wouldn't want to share a tea party with a stray owl?! Loons. And it's not strictly a room accessory but I'm sure Wriggles could make room for this crochet owl in her cot!

 Being in a rented flat, it is too much faff to start painting and wallpapering, so these new-fangled wall stickers sound a good plan of transforming a wall and adding some colour. Keeping with an emerging woodland vibe, I saw these designs on Not On The Highstreet which caught my eye.

Whilst I was also browsing there, I saw this rabbit lamp by Little Ella James. Wriggles is not scared of the dark and has rarely slept in anything lighter than pitch black, so for the moment I doubt a nightlight would be needed, but it is so sweet. Maybe I could "borrow" it for the time being! I saw these fabric Love Birds which look adorable perched on a branch (surely attaching a branch to a wall must be easy?)

 

So all I need to do now is win the lottery and channel my inner Laurence Llewelyn Bowen. Easy! Hop over to Lucy's blog and see what anyone else has been looking at this week.

A New Start

I love this picture; to me this speaks of a new start. It is not obvious to anyone but me, but this was taken in my new flat (aka, my home). The only furniture is Wriggles' bouncy chair and a wooden crate pretending to be a coffee table; there are not yet any appliances like a cooker or washing machine, the walls are bare and I think this was taken before the official removal van and moving in day.

When Wriggles was born prematurely, I had not yet had time to sort out moving from a professional flat share into a more family friendly private space, as she came so quickly. I would have had 3 months further to play with if she had stayed inside but it was not to be. Unfortunately things became complicated as she came home on oxygen and so it was with trepidation, that I took her back to what resembled a student flat that I had to share. During the few months I was there, I became very desperate. More than anything, I ached for some precious privacy with my baby.

Finally, somewhere came up. Before moving in came around, we had the Intensive Care shenanigans which brought everything very clearly to me. Once we were out of the danger zone, the hospital felt safe. Although there were people in and out, it was more private and comfortable than my flat. It was bliss being able to shut a door and I dreaded returning home. Thankfully, when I did go back, it was merely days before I could move.  My mum had come up while Wriggles was in hospital and stayed to help us move. She felt closed in on too, and we were so eager to leave to pastures new, that the day before the removal van was booked, we packed large rucksacks and laundry baskets of essentials like the kettle, biscuits, Wriggles' chair and milk, the sterilizer, toys for Wriggles, and an airbed, and got the metro over to the new flat and spent the day in a barren place. We must have looked like lunatics on the platform with binbags of belongings shoved under the pram and on our backs, like refugees. There were ladles sticking out of coat pockets, cushions stuffed in coats and teatowels worn like scarves. It was a cold and drab April morning, but we practically skipped up the road and ran into the bare and empty building. It was bliss. It was so quiet and secret, I felt like I could breathe again. It felt like playing house, proudly organising the few belongings in the bare rooms. We stayed for hours until the sun set and night began to creep in. Reluctantly, we left to put Wriggles to bed, spurred on the the thought of being there the next day. When we moved, it felt as if finally, seven months on from the birth, our life as a family was starting.

That first weekend there, my aunt, uncle and cousin came to help organise the flat. We still had no cooker, washing machine, sofa or chairs, so spent the weekend sat around on the floor, microwaving vats of soup my aunt brought over from her home in Cumbria to eat, inbetween putting up curtain rails and unpacking boxes. We pegged and sellotaped duvets and bin bags as curtains and sat on crates, got lost trying to find Homebase, lived off cups of tea and instant soup-in-a-packet and biscuits, and played and played with Wriggles who adapted marvellously quickly to her new palace. When appliances arrived, they sat in the middle of the floor for weeks like large traffic islands, waiting to the installed. I didn't care one jot. The disorganisation was laughable but yet heavenly.

Having my own space meant the world to me, it meant that finally I could establish a routine, do things as I intended to as a mummy, speak when I wanted to, and deal with everything in my own way. I could ask for help to deal with the depression that had engulfed me, safe in the knowledge that I was allowed to have bad days and that I wasn't under the watchful eyes of people, who had the best of intentions but would never look away. And so I began to find myself as a mummy. With furniture at last.