Monday, 14 April 2014

You Will Never Breastfeed That Baby

Rather impossibly I've been around the neonatal world for almost 5 years now. I never really chose this journey, it chose me. And I am one of the around 10% of parents who I estimate, cannot walk away, and choose, in some way to remain involved.

Over the course of the 5 years I have seen a number of changes, on the whole, improvements, to neonatal care and specifically family centred care. I know Bliss are a massive factor in this and I am so proud of the Bliss Baby Charter.

The biggest change I have observed is in breast feeding. When Joseph was born I was encouraged from the outset to express. I think the nurses, from what I remember, were very gentle in encouraging this, however my midwife and one of the consultants (I think actually an SHO, were much stronger).

I had told my night midwife, who took care of me antenataly and postnataly for 3 nights, that I was determined to breastfeed. She ensured that I expressed within 3 hours of birth, the recommendation is six hours and this often isn't done for a number of reasons, I believe its usually because staff aren't sure how to broach it with the mum, who is often distressed and confused. I had taken control from the outset and knew that getting expressing established early was key.

When I went to see Joseph for the second time a lovely young (male) doctor said "what are you going to feed your baby?" I replied "my breast milk", he then beamed, grabbed a chair and gave me loads of advice. He advised me what to eat, how to think, how to cope with expressing. He told me I could go on to breastfeed. Then I didn't see him again.

As Joseph progressed I wanted to feed him myself. The unit didn't have much experience of tiny babies, and in our area there were low breastfeeding take up rates generally, let alone in special care. I couldn't get any quality advice. I tried phone La Leche Leage and NCT, but noone had any experience of tiny babies. I ended up locating the Trust breastfeeding advisor who came to see me. She looked at Joseph and shook her head. "You will never breastfeed that baby, he's too small".

And I believed her. She was the professional, I was just an inexperienced first time mum with a very different baby. My milk started to wane, and I lost all confidence in myself. My usual reaction when someone tells me never is to fight, but I had lost all my fight. I needed someone to fight for me, and for Joseph but there was no one.

How heartening now is it for me to walk around units and see that the general expectation is that mothers will breastfeed. There is increasingly more support and help. I believe there needs to be more, but compared to 5 years ago we are far ahead of where we were.

However, never forget, as a professional, as a fellow parent, as a friend or a partner the words you say are powerful. Use them wisely. 

A Reluctant Adventure on the Manchester Wheel

It was a quiet Sunday and Joseph and I decided on going to the "dinosaur museum" the Manchester Museum adjacent to the University of Manchester. However something happened. As we were on the tram towards St Peter's Square, Joseph spotted the Art Gallery. He decided he really wanted to go there. I was impressed as he had never been, doesn't frequent Manchester so must have read it. We had an enjoyable couple of hours wandering around. Then we left.

Manchester's very own instrument of terror

"Oh Mummy, look we can go on the big wheel!" exclaims Joseph. 
"No Joseph we can't, we don't have enough money, we don't have enough time, we are not going on the big wheel", I quickly counter.
"Mummy, I know you are scared, but I'll look after you", he says, patting my hand reassuringly. And before we know it we are queued up to pay.
The attendant looks at Joseph critically "Are you sure he will be ok?", she says the concern clear in her voice.
Joseph sighs and rolls his eyes "I will be fine, mummy is frightened, but I've promised if she's a good, brave mummy I will get her an ice cream when we are down". Howls of laughter from the atendants, security guards and throngs also queued up for this terror ride.

An apprehensive and worried Joseph
 Our booth turns up and we are shown inside. How I didn't throw up as we started moving I don't know. Joseph was so excited and began running around the booth. "Sit down!" I yelled. Joseph laughed at me "Sorry mummy, do you need me to hold your hand?" I barked "yes!".

Joseph admiring the view
 I kept taking photos, to keep my mind off the motion sickness. I really don't do heights, especially moving heights, it just scares me and makes me feel sick.

View of Moseley Street

View over Manchester I think towards Piccadilly Station
 I do love looking at the big wheel but have to say I appreciate it much more from terra firma.

For the record I was taken for a 99 with flake and strawberry sauce following the ordeal, for being a good, brave mummy! 

I am glad I did it, but I don't feel the need to ever. do. that. again.

Sunday, 13 April 2014

The Story Behind the Picture

It was afternoon, handover time at 1pm. We were told that that we were to have a cuddle with Joseph. I seem to think it was a Sunday, day 3 after his birth, but I could be wrong. I wish I'd dated the pics, but hey, my brain wasn't in that space to do so. I'm still in patient, as that's my pyjamas, and I'm still bruised from the anaesthetic.

F and B were the nurses in charge of Joseph for his first weeks. They were so amazingly calm and unflappable. They treated me as part of the team, with utter respect. They made sure I was fully informed. If something was going on they weren't happy with they would whisper in my ear and tell me how to challenge. I loved them and still do.

I gather they fought for this moment, and very calmly made sure NICU was quiet. F was in charge of taking Joseph out and placing him in my arms then we swapped so daddy could have a cuddle too. It was the most amazing moment of my life, this baby I had reluctantly delivered 3 months too soon was actually mine.

When the cuddle was over, it was about 15 minutes, we went to the family area and I just howled and howled. I couldn't believe that I finally had a hold of my baby. But also it hit me how bloody long this road was going to be. He was so small, so fragile. I couldn't envisage the future. So I just only ever concentrated on the next milestone. You can eat an elephant, I'd recite to myself, just one bite at a time. And that's how I viewed his journey, just focus on the immediacy and don't look too far ahead.

The next time I howled like that was week 9. There was a flurry of excitement on the Monday I came down to the ward. One of the nurses whispered "you have date! A date! Joseph is going home next week, but look surprised when the consultant tells you." I froze. I didn't feel excited. I felt terror. A whole week for something to go wrong.

Because in NICU you can never dare to hope too hard. Every day has trouble and challenges of its own. 7 days. A lot can happen in 7 days.

The consultant came on her round and told me, all things being well Joseph would be coming home on Tuesday 21st July having been born on the 8th May. I cried. And cried. She was shocked. I revealed how hard the last 9 weeks had been, how I'd struggled, how lonely I'd felt, and she was so shocked and surprised as I'd kept so positive. Now I'd wished I had made more of a fuss and asked for help.

The last week was utterly dreadful. Mostly it was ok, but he had to have his vaccinations (they'd forgotten at 8 weeks and did it at 10) and of course his CRP was raised. One of the doctors hadn't twigged he'd had his vaccinations decided he was ill, put him on his invasive monitoring again and threatened to delay discharge. Let's just say mummy lion when into full on protective eat the predator mode and the monitoring machine was quickly banished to the storage cupboard.

Then at the very last minute the opthalmologist due to do the last ROP check was late. Joseph was awaiting this before going home. Then he arrived and the opthalmologist nurse had left. He talked about returning in a few days to do the test. Mummy lion growled, I will hold the baby and you will do the test. So I did. And it was done, and home we went.

So long since that picture had been taken. But finally I got to take my baby home and have cuddles whenever we wanted.

The School Project I was Dreading

Through Bliss I met a wonderful family Sarah, Mark and their little girl, a couple of years older than Joseph. Sarah was explaining that her daughter had been asked to take a birth picture in to school. They had a discussion about which picture to send. I often wondered how I would feel when the time came.

My husband pulled this out of Joseph's schoolbag last night:
"Please could you complete the attached worksheet with photographs of your child from birth to most recent. We will be looking at changes over the next half term and this would be really helpful for their learnig. Please insert the photgraphs inside the leaves and the middle of the flower."

At present my PTSD is flaring up, which it does every 12-18 months or so. Cue opening of the floodgates and tears flowing. My husband sees Joseph's beginning so differently to me, I guess because in a sense he's detached from it, he didn't fail Joseph, I did. For him Joseph was always his Action Man, too small, but growing every day. To me he was a tiny, fragile little human, forced to do so much on his own because my body failed him.

And here I am again. I thought I'd dealt with the guilt and feelings of failure, but nope, they are still there. Take off the band aid and the wound is still raw. I am annoyed I still feel like this. And I need to accept that on some level I will always feel like this.

Joseph and I have had a chat this morning and he chose the next picture as his birth picture. Joseph hates the idea he was in a plastic box all alone, and has chosen his first cuddle at 3 days old.

He was very insistet that everyone be able to see his face. Nothing illustrates change better than that picture really does it? You can see his size, but its a positive picture. He was insistent any picture include at least mummy.

Joseph's story is a positive one, and a powerful one. He is resilient, strong, funny and happy.

 If these pictures amaze me, just how much will they amaze the kids and teachers in his class?

Friday, 21 March 2014

Dear Sugar

Dear Not Even A Bag of Sugar

When I first met you I was lost and alone in "premmie land". I had a healthy baby at home but I was deeply traumatised by our experiences.

When we first started out, you and I, we were alone. I wrote, you sat there patiently and the odd person would come and say hi or "that resonated with me". And I loved it.

Then things changed. We got nominated for a the MAD Blog Awards, people really started finding us, I found my feet as a blogger and you grew and grew.

You've been there for me in my happy times and darkest times, but most of all you have been there for others, the number of times I have had emails of thanks, messages of support, and received lovely things is quite amazing, and it's because of you, and me.

You see, when I got my job at Bliss I stopped you. I still blog sometimes but I'm not a "blogger" anymore. And I miss it dearly. I tried to start my other blog, but I miss "premmie land" and all who dwell in her.

I want to blog again. I hope you will welcome me back, and guide me. Let me know how to make this fit in with work and not conflict, but I can't cope without you in my life anymore. I miss you too much.

Right now, I am stuck in the this time 5 years ago game and its torture. I am getting help though counselling, reaching out to some amazing people for help and I will get through this and be stronger for it, because that's what I do.

Thank you for always being here for me.

Kylie, mum, regional volunteer coordinator and blogger

Friday, 14 March 2014

Attachment and Parenting your Premature Baby

I had the pleasure of attending an amazing conference today talking about Attachment in Early Years. The most inspiring talk was given by Suzanne Zeedyk. It's really made me think even more about attachment and parenting.

Suzanne is a research scientist fascinated by babies' innate capacity to communicate, something which has always fascinated me. As Suzanne states on her website "babies are born already connected".

I'm not a psychologist and have but the briefest understandings of attachment theory. What I loved today was Suzanne's explanation of attachment. "It's having an internal teddy bear whom you can call on when you need comfort no matter what your age".

My first teddy bear given to me by my grandmother

But what about our babies? The ones that are taken at birth and put in plastic boxes? The ones that in their first hours, days and weeks aren't snuggled up with their mummies and daddies, but subjected to medical procedures and the care of strangers?

Suzanne talked about the work of the Robertsons who in 1952 produced a film "A 2 year old goes to hospital" which highlighted the practice of admitting children into hospital care and allowing their parents to visit only once a week for 2 hours. The film highlighted this practice and it was changed. Now when children are admitted into hospital it is expected their parents will be integral to their care.

It made me think very much about our sick and premature babies, being taken from their parents and care for by strangers. 

What can we do as parents to give babies that first feeling of the "internal teddy bear", to protect them against sabre tooth tigers? And what can we do as parent supporters to help parents find their inner teddy bear and take care of themselves too?

For me I gave baby massage, to counteract the heel pricks and other negative procedures Joseph was experiencing. In the early days this was just his feet. I sang to him and read to him, despite opposition from some of the medical team. I swapped muslins, so he had my scent and I had his.I learnt containment holding.  I fought for kangaroo care. When we finally got home we spent lots of time cuddling, and him being baby worn.

One of the things about today that was very powerful is that it's never too late. Attachment is important throughout one's life not just in the early years. When I was caring for an elderly lady with dementia I would do containment holding when she was frightened. Attachment is relevant regardless of your age.

I think for parents too, that if they've had issues with attachment in their early years that the special care experience can be even harder and more damaging. How can we as concerned parents help others through this experience?

I know for me, that I was so worried Joseph would come out of hospital not knowing who I was, being scared and feeling unattached. When this photo was taken I was deeply traumatised, and my beautiful friend Jen spent time with me helping me to realise that actually, Joseph was mine and I could get better.

I don't think you can say for a moment, on the strength of this photo that Joseph had any issue identifying me as his mummy.

Thursday, 13 March 2014

Fundraising with Beautiful Blue for Harrison's Fund

Supporting charity is something that is very close to my heart. Before Joseph was born I always felt charity was a nice thing to do. Charities, in my opinion then, did work to help enrich communities and provide additional services to people. Since having Joseph my whole view on charity has changed. I know now there are things that would not happen without charities. Specialist support services, research into medical conditions, practical help for families, protection of the environment and a myriad of other things would not happen without the passion and drive of people who establish and work within charities.

I was invited by Beautiful Blue  to look at their new t-shirts which are being sold to help Harrison's Fund . £5 from each shirt sold will go to the fund.

Charities often start from the heart. Families see a need and go for it, putting their hearts and souls into a vision to make things better. Harrison was diagnosed with Duchenne Muscular Dystrophy in January 2011. Harrison's parents established the fund, because what Harrison really needs is a cure, as do all people diagnosed with this condition, and their families and friends. Readers of this blog will know that my best friend Daniel has Duchenne Muscular Dystrophy.

The facts about Duchenne are this. That boys (and there are some girls too) start out healthy and as they grow the dystrophin in their muscles, the protein that makes mucles work begins to deplete. The use of a wheelchair becomes necessary, every muscle is affected including the diaphragm so people with Duchenne Muscular Dystrophy will need assistance with their breathing.

I don't dwell on this, but the simple fact is that Duchenne Muscular Dystrophy takes the lives of these boys, life expectancy is increasing but only because of advances like ventilation. The condition hasn't changed, and I am sure that Daniel would agree, the life with advanced Duchenne, although can be enriching and wonderful, isn't an easy one.

The only treatment available at present are steroids which can help buy some time in terms of walking, but that is the only treatment available. Harrison's Fund exists to raise money for research, because what we need is a cure, or at the very least viable treatments other than just steroids. There is hope and we know more about Duchenne Muscular Dystrophy than ever before, we need more research, more money to ensure that this can happen. 

The t-shirts arebeautiful, the cotton is soft, the prints are so delicate, feathers forming a heart. It doesn't contain a logo or any information about the charity, so it's something you can wear for any occasion, choosing to tell the story of the charity if you wish. The one I was sent would look lovely with dress jeans and heels and a nice jacket, or equally good for the gym, being pure cotton its comfortable to wear and breathes nicely.

There is also a range of jewellery and I intend to treat myself to a bracelet.

With Mother's Day coming up this would be a lovely gift, and it gives twice, to the recipient and also helps Harrison's Fund.