Wave of Light - sensitive

Last week was International Pregnancy and Infant Loss week, culminating in the International Wave of Light. We light candles to commemorate tiny lives that have been lost .

Until Joseph was born early I was entirely ignorant about baby loss, despite myself having had two miscarriages. My miscarriages were traumatic experiences, true enough, and each of them marked a massive turning point in my life. Following the first, my marriage broke down (not due to the miscarriage itself but events around it) and the second marked the demise of another relationship and my decision to move from Australia to England.

To me, a miscarriage is so hard because its a loss that is hard to quantifiy. Biologically speaking when you have a miscarriage (and really I am talking about common ones before 12 weeks) you have lost a collection of cells not a baby, not a viable human life. Emotionally you have lost a baby. To a woman who has miscarried, that baby was very real, and the loss is raw, and it is so hard to grieve, you did not know the gender, you can't name the baby, and no one in authority acknowleges that that life was real. A candle lit for that baby gives you a focus, if only for an hour. 

Before Joseph was born, I had not knowingly met a mum who had lost a viable baby. Which to me, seems remarkable, and I can only think that perhaps I have friends who have not opened up about their losses. When Joseph was in hospital three babies died. I finally learnt what many others already knew, that human life is incredibly fragile. I have a dear friend who lost her twin baby girl, and her existing baby, although a joy, is a daily reminder of how the other little girl should be. Being the mother of a premature baby, who had been born so early, and so small, it is hard not to feel an element of "survivor guilt". Why did Joseph live, why is he so well? Why was his potentially deadly stomach infection caught so early when so many other babies are not so lucky?

Since coming home, I have been very active online, and have met so many people who have had devastating losses of babies who should be in the arms of their parents. There are so many reasons babies die, but the sad fact is that the rate of stillbirth has been stubbornly stuck for years, and there are no signs of the rate going down.

And its not just stillbirth and miscarriage we think about it that week, we think of any baby who has died before the age of one. It is very common for premature babies not to make it, infection, immature breathing and congenital problems.

We also grieve those that are terminated for medical reasons. I feel this area is largely misunderstood, and is the last taboo in this area. We can speak more freely about other forms of pregnancy and infant loss, but this area is still in the dark.

For the first time, I know a baby who died in this way, her candle was lit on Friday night, and her life remembered. This baby had a heart condition that she would not have survived.

But, you don't need to wait for a "week" to remember a baby who has died. And it doesn't need to be "your" baby. I strongly believe that lighting a candle helps focus our thoughts, and helps facilitate our grief.

In loving memory of Emily, Isla and Angel, and all the other little lives lost and remembered.........

Life online

I use the internet, a lot, more now than at any time in my life. I love Facebook and Twitter, I use forums a lot. I think this increase in my usage coincides with what has been one of the loneliest and most socially isolating periods of my life, as well as one of the happiest.

I do attend baby groups and activities, but most of these are for babies under 1, once babies turn 1 parents tend to return to work, and their children go to nursery. Baby groups only run once a week, and usually only for 90 minutes. The rest of the time, I am with Joseph, and at 17 months, whilst a lot of fun, still sleeps a lot and his conversation leaves a little to be desired at this stage!

I love to spend time talking to other mummies on line, and keeping up with the news. I enjoy hearing about the minutae of other peoples' lives and what people are thinking and getting up to.

But I have been considering of late, how I can better utilise my time. My husband and I have started fostering training and there is a lot of work to do to build our portfolio of evidence to take before the fostering panel. Christmas is coming, and money is tight, which means I will make a lot of presents rather than buy. And then there is the small matter of income generation, could my time be spent making things, offering my services to businesses, or generating an income rather than frittering it away on line?

I miss the hubbub of work. I miss the walks around the Quays at lunchtime with my friends. I miss chats by the coffee machine. My work involved a lot of interaction over the phone, and I find being at home quite lonely in comparison.

Also once we start fostering we need to consider how much information we give about our day to day lives online, and also we need to set a good example which means not spending all my time on line messing about, and lets face it, a lot of it is just messing about rather than a good use of time.

Would I miss it? Would the online world miss me? Or will I be a better person for getting a bit more of a life offline?

I'm always travellin'......

One thing my husband and I have always had in common is a love of travelling. When we discovered we were pregnant, we were very much hoping, that although our budget would be somewhat constrained, we would not have to give up our adventures.

Joseph's first trip abroad, from Manchester UK to Australia, was booked when he was two weeks old, in ITU, strung up to all manner of machines and monitors. I must have been insane! I booked a long layover in Dubai, just in case he was on oxygen or needed assisted feeding via a PEG tube, so that we could renew equipment etc. As the day approached, and Joseph was by then 7 monthos old, it became clear that the layover would just be for fun, Joseph, was to all intents and purposes, normal!

So we travelled downunder and had a fabulous time. We have since done several local trips, including a long one to London to stay with a dear friend and her son also born prematurely.

We have just returned from an enormous driving trip, from Manchester to Germany via Dover and Calais. Joseph is a fantastic traveller, he sleeps well, he loves trying new foods, and he enjoys the process of travelling, meeting people and having new experiences. He is an absolute delight.

It's easier and harder now, at least now I don't have to worry about sterilising bottles, and lugging loads of stuff with us. He can drink with a straw and is the neatest eater I have ever met, so its not the end of the world if I have forgotten a cup and a bib. But now he is increasingly mobile, its ever so hard. He's not content to stay in the sling, or in the car seat, or the pushchair for any length of time, but the world is just not created for crawling toddlers.

Except German service station stops. For some reason the Germans, bless em, have thought of the tiniest travellers, gorgeous, well equipped changing stations, and large indoor play areas usually with ball pools and crawling tunnels.

I can't wait for our next adventure, again to Australia, in February. Just myself on my own with a 20 month old. Piece of cake??? Preferably Bienestick - Joseph's newly discovered favourite!

Babywearing

It never occured to me NOT to baby wear. As soon as I started thinking about how I would take care of my baby I knew I would wear him/her whenever I could. When Joseph was born prematurely, I knew baby wearing would be even more essential to his care and development.

I was dead against wrap around slings to start with. They looked so complicated, how would I ever tie it, get my baby in, sort it all out on the run??? I found a wonderful shop in a tiny Yorkshire village. They spent a long time with me looking at different slings. My first visit was whilst pregnant, and we had a very spooky conversation about the importance of baby wearing premature babies. Little did I know that just three short weeks later, I would have my very own tiny miracle.

Whilst rooming in during Joseph's last two nights in hospital, I took my sling, and practiced taking him around the ward. It felt normal, natural, and I felt whole again, with my tiny baby next to me.

Over the coming months I wore Joseph often, doing housework, going on trips to the shops, whenever I could.

Even now, at 17 months of age, Joseph is still worn, admittedly not as often, but still more than weekly. I have a fancy mei tai sling, its fashionable, comfortable and safe.

I was amazed to read on tweets today, the start of International Babywearing Week that in the US the practice of babywearing is under threat. What I love about  Babywearing is the spirit of independence. All you need is a length of fabric and some knowhow. You don't have to spend hundreds of pounds. Slings are natural, they don't use a lot of carbon to produce them. They take up no room, you can put one in your carry bag.

The U.S. Consumer Product Safety Commission is proposing to regulate the babywearing "industry" potentially this could mean that cottage businesses producing slings could go bust, and that "slings" will now belong to big companies.

It's true that there have been some deaths of babies associated with sling usage. Surely education, providing instruction to users, and setting good examples is the way of the future, not excessive and punitive legislation.

Baby wearing is a traditional, safe practice. Babies die in pushchairs and prams, but they are not legislated against. Babies die in cribs and cots.. Baby deaths in accidents are tragic, and sometimes preventable, and education is the key, not banning practices that have been around since time immemoriam.

Goin on up to the Spirit in the Sky

When I first found out I was going to be the mother to a premature baby, the first thing I did was go to the chapel at the hospital. Our chapel is very simple, but a quiet refuge in a busy hospital. It is also extremely thoughtfully placed right near special care!

I became well known, padding down at all hours, to write in the prayer book, or leave a little note for the chaplains. Funnily enough I didn't call for a chaplain to come to see me the night I was so frightened awaiting my c-section, because, this wasn't an emergency! Not in my head, I was just having a small early baby and to would be fine! Fine!

Anyway, having lurked around the chaplaincy service for 3 months, I have now been asked to do a talk at their conference. "Spirituality and the Patient Experience" is the topic, and its such a hard thing to speak about. The age old questions of "what is spirit" and what differentiates spirituality from religiousness float around in my head.

To me, the song that means the most to me in terms of my spiritual journey is "I Still Haven't Found What I'm Looking For" by U2, which U2 have always maintained is a gospel song. 

But I guess what we are really getting at is what do people in crisis need in terms of spiritual support. To me spirituality is wholeness, its supporting that part of the person that doctors, midwives and nurses can't reach. To me spirituality and hopefullness were tied in together. It's also the power to deal with the great unknown. To leap with faith, knowing that there is a cushion to fall on.


And that's what I found within the walls of our tiny hospital chapel, and most importantly, the people within it.

Ill-prepared - Life with a Toddler

toddler

Etymology: ME, toteren, to walk unsteadily

a child between 12 and 36 months of age. During this period of development the child acquires a sense of autonomy and independence through the mastery of various specialized tasks such as control of body functions, refinement of motor and language skills, and acquisition of socially acceptable behavior, especially toleration of delayed gratification and acceptance of separation from the mother or parents. The period is characterized by exploration of the environment and rapid cognitive development as the child strives for self-assertion and personal interaction with others while struggling with parental discipline and sibling rivalry. Of primary importance for the nurse is an understanding of the dynamics of the growth and development of the toddler to help parents deal effectively with appropriate nutrition, toilet training, temper tantrums, prevention of accidental injury (primarily from falls, poisoning, and burns), and childhood fears, especially anxiety as a result of separation from the parents. 

 

http://medical-dictionary.thefreedictionary.com/toddler

I am a reader, a researcher, I like to know my subject. When I was pregnant I devoured pregnancy books, magazines and articles. I started to read baby books. I was so excited about being mother to a baby. Now I am not sure whether this is a premmie mum thing, or just a general thing, or specific to me, but I am so not prepared for life with a small.......person.

Like most parents of premature babies, we found Joseph's beginning scary. We were given the worst case scenario, home on oxygen, PEG fed through a tube in the stomach - probably for life, and our first years in and out of hospital with chest infections. I spent the whole of last year with my heart in my mouth waiting for the hammer to fall. I felt so confused when this baby, who I expected to be weak and poorly, was just small. We've only darkened the door of the hospital for routine visits and a minor operation on a hernia.

Now my major concerns are things like coping with teething, dealing with separation anxiety, helping Joseph to explore his environment without a) serious injury b) giving me a heart attack.

Joseph is headstrong, charming, funny, frustrating, infuriating, gorgeous, lovable and kind. He is a person, with a strong personality. I don't know what I expected.....I was not prepared. I feel like I wasted all those delightful baby days being in a state of high anxiety, and now, I have a toddler! 

Properly One

I was really excited when I found out I was due on the 7th August 2009 with my first baby. My husband has a lovely niece, who was turning 8 on the 7th August, and she asked me if I could please please try and have my baby on her birthday! I suggested that closer to the time we arrange for her to come over so we could clean the skirting boards, eat curry and pineapple, and try to bring the baby out!

Unfortuantely, that was never going to happen, and Joseph was born 3 months early. It's only this year that I have really learnt just how long 3 months is! Joseph's "other" first birthday seems an age ago, since then we have travelled to London twice, gone to many birthday parties for friends, and generally been very busy!

And in these last 3 months, Joseph has changed immeasurably. In 3 months he has learnt to commando crawl, proper crawl, eat corn on the cob and chicken drumsticks, pull to stand, wave and dance! He has developed a very funny sense of humour, he is slowly learning words, and he has come on a treat since his first birthday, oh and grown a lot of hair!

I am so very proud of him, my husband and myself. It feels like now we can really put his beginnings behind us, there are no concerns about Joseph's health and development (well, we know for sure after his check up next week at the hospital), and everything is looking very bright indeed.