Fiona

In the last few days I have had a letter from my old paediatric social worker Fiona, telling me that our file is due to be officially closed. She has said she will always be happy to reopen the file and will always be happy to give advice off the record but as we have been without complex medical needs for over six months, for now that is us done and let loose into the big wide world. Although we have not been reliant on her for a long time, it still feels a bit like taking the stabilisers off.

I was first assigned Fiona when Wriggles was less than 24 hours old. In my NICU unit, all parents with children under a certain gestation or those that for one reason or another were clearly going to have an extended hospital stay, automatically were given a health-based social worker. This aggravated many already fragile parents at first, assuming that the referral was a comment on their parent skills or social status, but as it was stressed by the kindly team it was actually to support us and make the neonatal ride easier. I don't know if this is uniform across neonatal units or if it is a service that everyone would welcome, but personally I found it a lifeline. Fiona became a confidant, friend, financial adviser, fundraiser, housing officer, counsellor, advocater, personal organiser and voice of reason at very low times.

"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.

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

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.