Sunday, 28 July 2013

And Now What? Life With a New Baby

Our own little prince fresh out of hospital at 10 weeks of age
I thought it was premmie thing. When we took Joseph home, through the door, showed him around the flat, sat down and said "right well, now what?" We had no idea what to do with this tiny creature, now finally at home.  Until this week on Twitter watching Twitter watching the Prince and Princess taking the newest little Prince home I seriously thought it was a premmie thing. Many people said the same thing "wonder if they're sitting in their posh abode thinking "now what do we do" "

Dr Ranj Watching Twitter and Telly Simultaneously!

It isn't a premmie thing at all, all new parents have that sense of wonderment with a heavy tinge of bewilderment. It's normal. And its great, our experiences, whilst vastly different in some senses, are very similar in others.

This week I've been volunteering in units, getting to know parents and "new" babies. Many of these are much smaller than new baby Prince George but are already 3 months old. It never ceases to amaze me the diversity of parents walking these corridors, sitting by incubators, wondering what is to come, waiting for that "open the door, walk in the house, and then have that wonder what on earth we're meant to do now?" moment.

For a long time I felt so "other" from healthy baby parents, and isolated. I felt so very different, and sometimes a failure or guilty that I was so rubbish at motherhood. Of course I wasn't rubbish at all, just unlucky. In most cases preterm birth is extraordinarily bad luck, as are other pregnancy complications. It's not personal failure.

Today I spent sometime at an event at a baby store talking to parents about my charity and the work we do. I felt two things. A bit like the voice of doom on the edge of a cliff, fortunately Joseph was running around so I could say "here's one I prepared earlier" and lighten the message. I also felt a deep sense of loss. And for once, my husband shared that too.

We both felt sad we never did that, walked around baby shops together gazing, musing, wondering what to buy. We never went to a baby store together, and mused about prams, and cots, clothes and sleeping bags. We missed those moments of wondering, hoping, dreaming, pleasant expectation.

And so do a lot of parents. Sad fact is very few of us get the posh blackboard, town crier, photos on the steps of the hospital moment, beaming with pride, for lots of reasons.

And thats ok. Hooray to Princess Kate for having a lovely birth a brief hospital stay and most of all a happy and healthy baby.

But hooray to all of the rest of us too. Parents are amazing, whatever our journey. 

Saturday, 20 July 2013

Because a Baby Died #MMSkyDive

This morning 8 amazing women and one amazing bloke are going to throw themselves out of planes to raise funds for The Lullaby Trust. Why are they doing this?

Because a baby died.

Precious Matilda Mae daughter of Jennie at Edspire passed away inexplicably in her cot. She died.

For Matilda Mae, a special blog baby, was loved in a very special way. People have felt inspired that her life was so precious, so meaningful, she brought so much love that they will do anything for her.

If only Team Matilda Mae could fly right up to heaven and bring her back.

But they can't.

Today they are sky diving to raise money so that no mother has to go through this excrutiating pain. I know Jennie, I have hugged her, and I can't imagine living this nightmare.

And a thought this morning goes to those babies whose lives are lost and noone jumps out of a plane for them. Whose passing is a fleeting newspaper story, and who are rarely thought of, rarely remembered.

Matilda Mae is remembered and spoken about everyday.

If you want to remember Matilda Mae please make a donation, you can do so here

Please help us get this special day and special baby trending #MMSkydive is the hashtag and #MatildaMae

And send your love to Jennie today.

Because her baby died.

Friday, 19 July 2013

Funky Feet for Kids

I don't know about you but this weather has taken me completely by very welcome surprise! I've been digging through all our wardrobes and drawers unearthing seldom seen, much less worn, clothes. I have discovered in the footwear stakes we are sadly deficient, I don't seem to own much in the way of sandals, and thoughts have turned to Joseph too. Sandals for kids come in so much more of a range now than when I was a child, when it seemed to be brown Jesus sandals or thongs (ok ok flip flops if you insist!)

For the beach
For kids I think crocs are so practical, they can get wet, they can stomp in fountains or summer puddles, or wear them paddling. One of our favourite things to do is go into Manchester and play in the fountains, so splashing shoes are really handy!

For going out 
With summer comes parties and weddings, and there are sandals for every occasion.
For everyday
I always said I wouldn't buy branded items, and then I had a spiderman mad 4 year old! 
With the good weather set to continue this is a great time to invest in some summer sandals for kids (and grown ups too!)

This is a partnership post with Littlewoods.

Monday, 15 July 2013

The Underwear Rule

As a mother, keeping my son safe is my number one priority. After I wrote Jimmy Savile is Dead I started thinking more about how to keep Joseph safe. He had his talk on Stranger Danger at school not long ago, and alarm bells rang in my head. We are still not doing enough.

On Twitter recently I saw that NSPCC had started a new campaign called The Underwear Rule. I really want you all to know about it, to read up on it and use it with your children.

Talking about child abuse is scary, talking about body safety doesn't have to be. Some of PANTS I have been doing since Joseph was a baby, talking about who can touch him, why and when.

It's really important. We are good at talking about Stranger Danger but the fact is that 90% of children who have been sexually abused were abused by someone known to them, not a stranger.

The other startling fact is 1 in 3 children who were abused never told anyone at the time. Abusers are powerful, they are frightening, they tell the most awful lies. Mine told me my parents already knew and didn't care. He told me if I said anything he would hurt my sister. He told me I was worthless and noone would care and noone would do anything.

Building trust with your child, letting them know they can talk to you anytime about anything without judgement is really important. Vitally important.

The NSPCC site has some amazing resources, but perhaps the most useful is the question and answer page.

Do it today, have that first conversation, and let me know how it goes.

Sunday, 14 July 2013

My Journey with PTSD

I had always known about my traumatic childhood and had had bits of counselling over the years. I hadn't really acknowledged the truth of the abuse or the impact it had on me. I sailed along in life, from relationship to relationship, job to job, country to country with it under pinning my life but never really dealing with it.

When Joseph was born I was a muddle. Past and present were merging and I spent a lot of the time feeling very confused. The one day the past and the present collided together.

Joseph was 3 weeks old. He was still in intensive care. I walked into the room and he was naked, prone, with F one of my favourite nurses doing a bowel manipulation as Joseph's bowels weren't working properly. My head started to bang, vomit rose in my throat and I fell into a chair. I couldn't breathe. My baby was being abused, just like I had been, and I had failed him. That was the voice in my head.  I had allowed my baby to be abused.

From that point on my brain started to fracture. I had the most graphic, distubing nightmares, my brain was completely messed up. I was abused all over again, Joseph was abused, I was abusing him, it was relentless. I had flashbacks, I was scared of strangers, people I knew, everything was a threat.  I sought help and had a bit of phone counselling, but I still hadn't really told anyone what the actual issue was.

When Joseph came home it got worse, not better. The voices were relentless in pursuing me. making me feel like Joseph hadn't been treated for prematurity, he had been abused, and it was my fault that I didn't keep him safe. That was at the heart of the PTSD. I was at baby massage one day and completely broke down in front of everyone. I felt ashamed and embarrassed but it prompted me to go to the GP. I had to be referred privately and I saw a psychiatrist who prescribed medication but also therapy as a day case.

I didn't have time for therapy, I didn't have time to really think about anything. I had no one to look after my baby and he wasn't permitted to attend with me. So I put it all aside again.

It was only in October 2012 that the Savile revelations forced the issue and I've set about really tackling it once and for all.

PTSD is horrible. It happens to women more than men. It's more prevelant in the general population than the forces. It's misunderstood.

It's not self indulgence, or the inability to process information and trauma. Its an illness and it can be treated.

And I am getting better. 

Room 101

Stickers, Stars and Smiles
I discovered this meme on Stickers, Stars and Smiles so I thought I'd join in!

Room 101 is one of those weird typically British tv programmes where you choose 3 things that annoy you and lock them away in a room never to be seen again. It's difficult to choose only 3 but here I go.

1. Breast pumps
Horrible evil machines. Yes necessary, yes they helped me get the milk that saved my baby's life when he could only tolerate breast milk, but honestly if I never ever see one again it will be too soon. My life was ruled by that damned contraption, looking like something out of a sci fi movie not a nursery. Bye bye breast pump!

2, Buses
Specifically buses with heating on in July. I catch a lot of buses. When I have hospital visits its not unusual for me to use 8 in a day. Invariably half of these have their heating on. And apparently drivers cannot turn this off, has to be done at the depot. I've heard varying explanations such as having the heating on keeps the engine cooler and prevents over heating, but I am sorry, hot buses make me stabby. Off you go.

3.Mushy peas

Mushy peas are the work of the devil. I don't understand them at all. The texture is like lumpy vomit and the taste not much better. Anything that comes from something called "marrowfat" is just wrong. I know they are a northern delicacy but you are all insane. Mushy beas should be banished to the pit of hell not just Room 101.

What would you put in Room 101?

Saturday, 13 July 2013

A Mother's Journey

As every baby's journey is different, so too is every mother's. But some of what a parent of a baby in special care feels is, to some extent universal.

Admission and inpatient stay 
In the beginning I felt a million emotions. Relief, joy, elation, fear. The emotions were completely jumbled, and I was up and down like the proverbial yo yo. This is pretty normal, you have all the normal pregnancy and birth hormonal stuff going on, plus you are in a traumatic situation that is often changing, no one can tell you what is right or wrong in those early days, all you can do is go with it. We had amazing nurses who worked hard to empower us as parents and to involve us in our baby's care. I did have problems with midwives, many of whom weren't experienced in pre term birth and were out of their depth. I also found my notes were very patchy and handover poor at times. None of this helped me feel better emotionally.

Intensive Care
Joseph was very poorly at times, and was in intensive care for 4 weeks. This was actually for me, emotionally, somewhat the easiest part of our journey, which seems strange now. But things were happening, doctors and nurses were doing things. Joseph had, for the most part, one to one nurses and they had time for me. I got my support from them, especially B, F and A.  It was clear that Joseph had to be in hospital, every day brought new challenges, setbacks certainly but also elating highs. Yes it was immensely stressful having a sick baby, but my brain knew how to deal with that. I went into work mode, and wrote lists of questions, kept notes, and kept my focus.

High Dependency Initially the move into high dependency was wonderful, progress was being made, and Joseph was doing well. I started to get access for kangaroo care occasionally, depending on who was on, and I started to feel a little more like a mother. I learnt how to position him, often knowing more than the nurses about what he liked and didn't like.

However as our HDU stay dragged on, this is where emotionally things got tough, and this is pretty normal from what I gather talking to other mums. Joseph was no longer "sick" the reasons for him being in hospital were less clear in my head. We started to get more inexperienced staff and lost our close knit team of intensive care nurses who were looking after sicker babies.

Babies came and went, so many babies were admitted for a week or two, I'd just start to get to know the mums and they'd leave. It was pretty soul destroying. I always stayed happy because it wasn't their fault they had later gestation babies, it just made me feel more a failure, and more separate and alone. I really began to resent the unit, the nurses and myself for being so utterly useless.

Special Care
For me the step down to nursery was frustrating. Joseph was moved due to bed pressure, he wasn't quite ready and still on continuous monitoring. I  felt the least empowered in special care. Rules weren't made clear and the inconsistencies in HDU were further amplified in special care. I felt very much that I was in the way, I really had had enough by this stage and was just fed up. By this stage too I was utterly exhausted. I no longer had adrenaline getting me through, my milk had dried up, and I just felt a total failure. It was here that I needed emotional support the most, and didn't really have any. I think my Pollyanna persona was detrimental at this stage. When one of our favourite doctors came to me with the date and discharge plan I burst into tears. When she asked what was wrong I explained "its relief, I hate this place and I just want to go home". She was really shocked and started asking lots of questions about how they could make it better for parents, and I couldn't even answer, was just so angry with only a few days to go that now they wanted to know how they could help me.

Often when the baby is no longer "poorly" its then that parents need support. When the baby is clearly well, but still not ready for home, and the journey has exhausted the parent, its often then they need emotional and practical help.

Rooming in
Everyone I know views rooming in differently. For me I loved it. It was just the most perfect two days. I had Joseph with me on the bed whenever I could. I just held him and gazed at him. As he slept I did something I hadn't done for 10 weeks. I watched television. I read. I was "me" and most of all, I slept. My night time sleep was amazing. Our unit only had single beds so my husband couldn't stay. Our first night he kept the phone by the bed, but I didn't ring him. I slept. Joseph woke at 3 for his feed and then we both went back to sleep. I woke to shouting at 7.30 am "Kylie Kylie I am here are you ok?" It was my husband popping in before work. For the first time in 10 and a half weeks, I had slept.

First days at home
I felt scared and unsettled at first. Joseph took a while to get used to being in a different environment, and this is totally normal. His sleeping and feeding went a bit all over the place. I felt totally shell shocked. I wasn't prepared for the grief. I was grieving the loss of normality, I even grieved losing the unit. That unit I had grown to resent had been my lifeline and now they were gone. I was alone. I felt incredibly isolated at home, and was scared to go to baby groups. I am normally a confident person but having Joseph prematurely and really my own close call with a life threatening illness stripped me bare, it took everything away, but gave me so much in return.

It took a long time for me to gain confidence as a parent. It was only when I took Joseph to Australia when he was 6 months old that I realised that actually I was doing a good job, and we were a team. Sadly, it is only now looking at this picture I realise something else. Joseph, as a baby loved me. Just because I couldn't take care of all his needs didn't affect our bond, and this picture really says it all.

Friday, 12 July 2013

A Baby's Journey

Every baby is an individual, and every baby has a different journey. However, for a baby born prematurely there is a pathway they generally follow but hitting their milestones at different times.

A baby born extremely prematurely like Joseph starts life in a NICU - neonatal intensive care unit.

At this stage Joseph was a few days old, he had started off on ventilation but moved to the less invasive CPAP. Here he is having a bit of a rest from it. He has a long line giving him food, and an oral tube, but wasn't feeding orally at that stage. The lines on his chest are to monitor his vital signs. The nappy he is wearing is the absolute smallest available and only available to hospitals. He weighs less than his birth weight of 1lb 7oz in this picture.

The next step is the High Dependency Unit. Babies may still be receiving some breathing support. Here Joseph is 5 weeks old and now breathing on his own most of the time, but when he was tired received CPAP therapy still. He now has a nasal tube for feeding, the long line has gone. He still has the monitoring wires. He is not allowed in full clothes yet, but wears a vest.

Whilst in HDU still Joseph finally moved to a cot. This is the last picture taken of him in his incubator, just after his first bath, his hair all fluffy.

One of the final steps is the special care nursery. At first their cot is heated for them to get used to being in room air, this is actually a water filled mattress, very cosy. In the special care nursery they are just feeding and growing, they've sorted the breathing thing out and just getting ready to go home. Sometimes at any one of these stages, babies can have setbacks and go back to an earlier level of care. Whilst soul destroying when it happens, its fairly normal.

Before the final step to home, most parents will room in, test driving their baby and learning the ropes to make sure they are confident to go home.

The final step is that long awaited journey home. Given that its mid July in this picture I think I went a tad over the top with the wrapping, but he seems content enough.

And whilst it may seem a lifetime, before too long those hospital days are just a memory.

You have a baby.

Thursday, 11 July 2013

Going Back - Visiting NICU

In January I commenced work for Bliss, and in the past six months, I have learnt so much, grown a lt as a person, and am really enjoying the challenge. My role is to recruit volunteers, embed them into hospitals and the community, and support parents who have or have had a baby in special care.

One of the important parts of my job is visiting neonatal units. As a parent, it's never completely easy. It's very easy to identify and empathise with parents. Seeing parents on edge, stressed, elated, terrified often simultaneously, is very hard. It's inspiring too, to see teams working together, to help these tiny babies thrive.

The unit Joseph was on, where I spent almost 3 months of my life, has gone, and lies empty. I visited a neighbouring unit yesterday and to my delight many of the nurses who shared our fear, joy, frustrations and setbacks were there, and delighted to see photos of Joseph.

Its funny because when I visit units I am in "work mode" there to speak to the manager and staff, assess their needs and wants. I often mention my experience, as it gives me some credibility, but I don't go into detail. Yesterday was odd as I felt a flood of emotion for these amazing nurses. And there were hugs, which I have to say doesn't normally happen at work!

I have come to accept now that there are certain things that will never leave me. Obviously, the beeps. They won't ever be a neutral sound. I will never be able to hear a "brady beep" without my heart racing and anxiety rising. I will never be able to hear "I'm just finishing a blood transfusion be right with you" without wanting to put my arm around the frightened mum and whisper that this won't be forever.

I will never be able to see a dad walking proudly into the unit with a car seat and not want to cheer, throw streamers and hug everyone in sight. I don't, I might add, but inside I am.

And what never ceases to inspire are my amazing volunteers, wanting to give their time to help parents and their babies.

Tuesday, 9 July 2013

Money is Too Tight to Mention - Having a Baby in Special Care

Having a baby in hospital is expensive. Today I am sharing our experience, and a new survey from Bliss about this important issue. 

I kept lists when I was expecting Joseph. We had a little savings account which was just recovering after our wedding. I made lists of all the things we would need to buy - pram, cot, bedding, clothes, bouncy chair, bath....

Suddenly my pregnancy ended at 27 weeks. And so did my salary. The additional 10 weeks of savings I thought we would accumulate did not happen.

When a baby is born so prematurely you are very grateful, to your care providers, the doctors, the nurses, and you do what it takes to get through. But make no mistake, having a baby in special care is not only frightening, challenging and stressful, it is also expensive.

I had to pay £5.60 a day in bus fares, and this was for my nearest local unit. If we had been transferred to a level 3 it would have been dearer again, as I would have needed a tram.  Drinks were an additional £2-6 daily, with meals another £5-10. We had no access to a parent fridge and this was the height of summer. With the travel and the expressing I just didn't have the time or energy to prepare drinks and pack lunches.

After Joseph left intensive care, we had 6 weeks of nappy buying. I found this very frustrating. I was overjoyed to be buying him nappies, but dismayed that the micro nappies were dearer than newborn nappies. They never were included on the 3 for 2 offers. A pack of micro nappies varies between £3.75 and £5.81 depending on where you shop. When you are short of time, you haven't got the energy or resources to shop around.

If you are driving additional fuel costs and car parking in hospitals can be crippling. Some hospitals offer help with car parking but by no means all. For many mothers, having a caesarean means that they are unable to drive anyway.

Bliss are committed to campaigning on this issue but we need your help.

Please fill out this survey, it will take around 20 minutes of your time, and will help Bliss collate information to further illustrate the costs to families.

Thank you for your help.

If you are a blogger we would love your help in highlighting this issue. Please contact me to find out how you can help.

Monday, 1 July 2013

#Pbloggers Guide to Kred and Klout

I joined in a discusstion on Twitter the other day with some parent bloggers who were saying they needed to improve their Kred and Klout for their Tots100 score. Now I'm no expert but I thought I'd share what I do know.

I've been blogging a while now, and now don't blog nearly as often as I used to, because I just don't have the time I once had. However my Tots100 score is still pretty solid, and that's largely down to Kred and Klout.

Kred and Klout are measures of your effectiveness on social media. They are not perfect and they are just numbers, I don't take numbers too seriously but this is what I've learned.

People with good Klout and Kred scores are just that people. You know who they are, what their personality is like, and have a feel for their interests. To have a good score, you need your personality to shine through. 

To have decent Klout and Kred you need to chat. You need to talk to a variety of people, stick to the same folk all the time and your Klout and Kred will stay static. Reach out to interesting people and talk to them. But don't be needy. What I love about Klout in particular as that was the first one I used, is that it made me be less shy, and to reach out to others. I enjoy social media and the numbers are just fun for me.

Share interesting stuff but with a comment on it. Just an article is ok but saying something about it either alongside or a tweet afterwards will help boost your profile, and also get your personality across.

Ask questions on your networks, serious ones, silly ones, people love giving advice too, and it gets people talking.

Join in things like Twitter parties are a great way to meet new people, get your content shared and have fun.

Observe other folk and see how they are doing on Klout and Kred and emulate them, but don't copy. See what sort of things they do, but be selective. Some who have strong Klout and Kred post controversial stuff all day long, and if that's not your style, it wouldn't make sense to emulate that.

Choose the networks that work for you. My Klout and Kred were slightly higher last year because I was working across a few social networks, now I have Facebook very much in the background, and Twitter is my main source of social media fun. There's huge amounts of networks out there, Google +, Linked In etc, but it doesnt make sense to use them all, it ends up diluting what you do, you can't do everything.

Remember blogging and social media is fun. The numbers game should be fun, if your self worth is getting tied up into the numbers game, step back from it.