This Little Light of Mine.....

Today is International Pregnancy and Infant Loss Awareness Day. It's a day I hold close to my heart, and commemorated last year.

This year I'd like to share with you three blogs that cover the loss of a baby, in different ways and at different stages. These three parents are in different stages in their journey.

Finding My New Normal is a beautiful blog, written anonymously, it tells the story of a mother who loses her baby at term, a still birth. She is open about her grief and experiences, and she is now officially in her two week wait to give her darling angel boy a sibling. Her journey with infertility and baby loss is inspiring and a real eye opener to people who have not walked this path.


Patch of Puddles I have had the great pleasure of meeting the author, Merrily, at Cybermummy and she was a fellow finalist in the Inspirational category of the MAD blog awards. Merrily lost her son Freddie at 11 days old, he was born at term. Merrily shares a lot of what they have been through as a family, and still go through now. Happily Merrily is expecting again, but nothing will ever diminish the loss of Freddie. And like me, Merrily is a supporter of Tommy's 5 Point Pregnancy Plan.

The Anderson Bump and Baby Isla I think nearly all my readers have visited, supported and commented on the Anderson's Blog, and I had truly hoped, during their journey, that we would not be talking about Isla today. If for no other baby, you light your candle for Isla, and for her parents, to show support, and to share our grief for her. It's no secret that baby Isla's passing has hit me hard, so much water, so close to home. It's very hard when any baby passes away, but when a 27 weeker passes away, after fighting so hard. I hold Joseph a little closer, kiss him a little more and I give thanks every day. I don't understand why this happens and never will.

No parent deserves to lose a baby, and it's still something that is taboo to talk about, I just hope that these days of awareness are helpful to those who grieve, and truly do help raise awareness. 

I Watched Jeremy Kyle Today

Now I know my husband and perhaps others think that all I do is sit around in my nightie watching Jeremy Kyle on a regular basis, but it isn't so. Jeremy Kyle annoys me. The people he has on are often, well, undesirable. The DNA tests, the lie detectors, the screeching, it's not something I want to watch. If I want to see such things I only need stand in my street on a Saturday night.

However today one of my friends put the following on Twitter today.

Crying over @itvjeremykyle this poor couple need a @kykaree to talk too x (kykaree being my twitter name, long story)

So I switched on ITV + 1 and watched. This lovely young mum was being grilled by our Jeremy, glib and annoying as ever. She was clearly devastated and traumatised. Her 11 month old was in the studio, they panned to him a couple of times, the oxygen tube clearly visible below his nose.

They showed a picture of a tiny baby in an incubator, this little lad was born at just 25 weeks weighing 1lb 10 oz. There were tears in the mum's eyes. "Why are you crying?" asked Jeremy. Choking back tears she tried to explain.

Jeremy, she was crying because she was back there, by his side, watching, waiting, willing him to live another day, hoping that she would have a "take home baby" at the end of it. That at times, she cannot see this baby as an eleven month old who is doing well, to her, he is still tiny, fragile and vulnerable. I know, because I have been there. I recall for months and months I could not see a baby in an incubator without being in floods of tears.

This couple had come on to the show because their relationship had taken a battering following the birth and hospital stay of their son. It was clear that the father was struggling too, he had tears pouring down his face. He admitted he had been violent towards the mum.

My heart just went out to her and to him. I wanted to just give her a huge hug, make her a hot chocolate and a cupcake and let her just sit and pour her heart out to me for as long as she needed. Forget Jeremy and his promise of doctors and counsellors, just sit down with someone who can relate, and get it all out.

What upset me about this, is that this couple felt they had no where to go. There isn't enough support or enough education out there about dealing with a traumatic birth and with a poorly baby. Jeremy kept saying "but he's fine now". So I guess he's been the father of a premature baby has he? He's been there agonising over oxygen sats, waiting for the next download, administering medication, worrying about RSV? No Jeremy, I don't think you have. Or you wouldn't say "he's fine now".

Having a baby is isolating, especially if you are young and your friends are all out having fun. Added to that that your experience is so very different to those of your friends, and that 11 months on it still isn't over. People are ignorant about babies on oxygen. and I know its just curiosity and a desire to know more, but for a mum, its confronting. You just want to be like every other mum, with their baby. You don't want to have to explain things every 5 minutes.

And with winter coming up, its more isolating than ever. Babies on oxygen are more susceptible to infection. Baby groups and the like are not recommended in winter for babies on oxygen. There's a constant risk of infection that can land a susceptible baby in hospital. As a mum you live with that fear everyday, that your baby might become desperately ill, and again you are back in hospital sitting by your baby's cot willing them to pull through.

There is support for people who have had small babies, start with Bliss who offer face to face counselling, phone counselling, support groups and other forms of support too. Bliss have a message board, with a special locked section for young people who have had premature babies. There are people who have walked in these shoes that are happy to help.

You are not alone.

Where There's A Will

A couple of months I went to The Baby Show in Manchester. I won tickets with the lovely T-J, and went for a good old nosy. I wasn't really looking at prams or toys, I was looking at businesses and blogging ideas. Whilst there I saw a man with two enormous teddy bears, and I played at guessing the name. Surprisingly the big girl bear was not, sadly, called Noreen, but never mind.

He was offering a free will service. I felt very sorry for him. At a baby show you might want to look at the latest travel system or play mats, or even buy a nursing bra, but wills? It's not what we want to be thinking of when we are expecting a baby.

But, having had the experiences we've had over the last few years, we decided that the time had come, and we decided to take up the offer of a free will. I went through the questions with the solicitor the other day on the phone, and tonight a nice lady came to get us to do the paperwork.

The questions you have to think of are hard ones. What would happen to Joseph if we both died? And to our assets if we were in a "wipe out scenario" (the solicitor's words). They are difficult things to have to consider, and not questions that you take lightly.

I've really agonised over this. The reality of our situation is that we are older parents, I am only just hanging onto my 30's and that ship has sailed for my husband. Our parents wouldn't be in the position to raise Joseph. Neither of our siblings live in the United Kingdom, so whatever happens, it would be a huge upheaval for Joseph, he would not lose his parents, but also his country of residence.

We have chosen that Joseph will live with my sister in law and her husband and children, should we both die, they live in Luxembourg. It's the best option but a sad one. Practically speaking its close to the UK, and also to Joseph's paternal grandparents who live in Germany.

We've also had to think of our funerals, which I thought was a much more jolly concept! Now you've all been warned, no black! And no flowers! Although if you want to pick a bunch from your own garden, I suppose that would be ok.

It's a fact of life that we don't know what is around the corner, and its something we don't often talk about. I am curious to know whether you have written a will? Any funeral requests? I'm really glad its done now and we don't need to revisit it again for a long time.

Rainy Day = Messy Play

Our brief Indian summer has disappeared and the rains have come! Every day has been miserable this week. I was looking for some inspiration for things to do and remembered the Imagination Tree blog. I love craft blogs, and this one is brilliant, full of easy, accessible activities for toddlers.

I chose to do a combination of activities, we did potato printing and spaghetti printing. I am afraid that Joseph is not the sort to make neat little piles of spaghetti in different colours, he went wild, mixing his colours, plonking spaghetti everywhere, and had great fun.

I am completely not averse to mess, I love it, and Joseph is quite good at the tidy up afterwards, something that has come from pre school, apparently he does it unprompted there, and cleans up after the other kids!

I found a great trick for cutting potato printing shapes. I have some small cookie cutters, if you embed them into your potato then trim around you get some lovely, crisp shapes! It was really enjoyable to do as well.


I can't wait to try some more activities, and am inspired to make some fresh playdough this weekend!

Mess is good!

Our Angel Isla

Isla Niamh Anderson 
23/08/2011 - 10/10/2011

Sometimes a baby comes along
And touches your heart.
You pray, your heart goes out to the family
You sit by your computer and wait
Wait for hope, for news, for light
You share with others
You search for ways to help them
And you have been here before
You have prayed, you have hoped
You have seen babies
Who have become angels
And its hard, to still have hope
When you can see the baby is walking the path
Of angels before her
But still you hope, and you pray.
Then the news came yesterday
And still it hasn't processed
That this amazingly brave little baby girl
is not here.
She has gone, there is no more sedation,
no more procedures, no more pain
She is at peace with our Lord and Heavenly Father
And we need to hang on to that
And we need to put our arms around her parents
For Lauren and Matt have a long road to travel
And we will be there
As we have in this journey

Matt and Lauren have asked that if you wish to, a balloon can be released on Friday the 21st October to celebrate Isla's life.

Monday Musical Meme Time Again - Guilty Pleasures

I'm on a bit of a downer today, so I thought what better way to chase the blues away than to indulge in some calorie free, totally legal guilty pleasures for Oh Mammy's Monday Musical Meme.

So first up is killing two birds with one stone. When my friends were lusting after Simon le Bon and George Michael when we were in high school, my crush was Mark Seymour from Hunters and Collectors. I loved him, and you know what, I think I picked well, because some *ahem* 25 years later, he's still got it. Now the other stone is my love for cover versions, and this version of Psycho Killer, with the usually unintelligible James Reyne is pretty ace

Now my next choice really is a guilty pleasure. I can't tell you why I like this song, my brain tells me its crap. I hate Girls Aloud, crap name, crap concept, arising out of a long forgotten TV pop show, but I can't help it. I can only apologise.

If you are still with me at this point, you probably deserve some kind of medal! Now here is my last one. I bought this album over 10 years ago, when going through one of my "angry" stages. Insurge are very political, sometimes, a little misguided, but I love this song, even if it is misguided and a bit naive. So here it is, Political Prisoners.

What's the Difference - Post Traumatic Stress Disorder v Post Natal Depression

As ever, this article is informed by my own experience and reading and is not a substitute for medical advice, if you have any concerns about your own mental health and experience please consult your GP.

I always knew I was at high risk of post natal depression. I have a history of depression, and it runs in my family. I was fully expecting that this might be an issue, and I was open and honest about my history on my antenatal notes. During my pregnancy it was suspected I had ante natal depression, and I had counselling for this, although it was never diagnosed.

When Joseph was born I was elated, absolutely bouncing and happy, apart from my crash on day 5, I was singing on the inside. Partly, I felt completely vindicated and relieved that I wasn't going crazy, there was something wrong with my pregnancy, and overjoyed that all had turned out ok, my baby was alive. My midwife was exceedingly concerned that I had the beginnings of severe post natal depression, and possibly psychosis. I was confused, and upset. Surely being happy was a good thing.

As time went on during our NICU stay I felt on an even keel emotionally. Yes, at times I was stressed, frustrated and occasionally angry, however for the most part I faced each day with a smile and got through it. My GP and my consultant kept an eye on me, but I never felt depressed. Once discharge was imminent, my caregivers relaxed. I was out of the immediate post natal period so surely everthing now would be ok. Wouldn't it?

When Joseph came home, over time, I started to deteriorate. And I felt totally confused. I wasn't depressed. I didn't feel sad, I didn't feel disconnected to my baby, or just "going through the motions". It didn't "feel" like post natal depression. I was totally and completely in love and bonded with my baby. What could it be?

I couldn't sleep. I was on high alert all the time, nervous, anxious, terrified that something would go wrong. When I did sleep I was plagued by stark, realistic nightmares. These had started when Joseph was in hospital. In one, Joseph had had an MRI scan, I had the films in my hand and I could see a break between T3 and T4 in his thoracic spine. I was so so scared about the ramifications of this. When I awoke I had no idea whether it was dream or real, so I called the unit who reassured me, and in the morning one of the neonatologists talked to me at length about Joseph's neurological state and the health of his spine.

The second one that sticks in my mind was my husband getting out of bed, running down the hallway with a brick in his hand to smash my skull with, so angry at my inability to sleep, and to be a proper wife and mother. I couldn't breathe, it took me ages to realise it was a dream, but still in my head that dream is processed as a memory. Horrific. However these nightmares only got worse when Joseph came home. I found if I slept in the day it was better. I was practically nocturnal.

Coupled with the nightmares were flashbacks, or as I called them, daymares. I had to seek alternative hand sanitiser as the one I had initially bought reminded me so much of hospital I would clutch Joseph to my chest and sob. The supermarket was horrendous. The beeping of the scanning machines sounded like a saturation monitor. The lights were so similar, and if I looked up, I would hyperventilate.

I used to panic when people wanted to touch Joseph. I'd worry at baby group if someone else held him, or if a baby was sneezing or coughing or had a rash. I used to go to weigh in at the clinic as soon as it opened and run away before anyone go there.

And the conversations from Joseph's time in hospital would play over and over in my mind. Things I should have said, should have done. I tortured myself for not trying harder with breastfeeding. Everytime I made a bottle I felt guilty, angry and upset with myself.  It was so tiring. If being a new mum isn't exhausting enough, my self punishment, my nightmares, my high anxiety was making everything worse.

What the hell was wrong with me? Finally I went to the GP. She took one look at me and said the magic words "oh your not depressed, your traumatised, lets' see what we can do to help".

And that was it. I had PTSD Post Traumatic Stress Disorder. Some mums (and lets not forget dads) get this either apart from, or with, post natal depression. PTSD is treatable, with therapy and/or medication and its important to get help. I was fortunate to have a GP who was very much aware of the difference, but not all are. And its important that the distinction is made as the treatment can be quite different. Also significant is that there is now research that shows mothers who have suffered from pre eclampsia are at high risk of PTSD. In addition, and this is very interesting and significant for those planning a second baby is that there is new research to suggest having PTSD in itself increases your risk of a premature baby.  Logic would suggest if you have untreated PTSD and are pregnant again, then this in itself may increase your risk of PTSD, highlighting the need for recongition and prompt treatment.

And now, it all seems a memory. I look on Joseph's time in hospital with fondness in a way, I am amazed at not only his inner strength and determination, but mine too. And the brain's abilty to heal.  However, I wish that I had been warned of this much earlier, as I would not have suffered for so long. I knew to look out for depression but not this. I hope that the existence of PTSD in mothers like me becomes a lot better documented, so that we all get the treatment that we need to be happy, content mums.

This article is a great one, and handy for showing a GP, although it is Amercian.