Wednesday, 30 November 2011

Jake's Story Part 2

Mandy's story continues from yesterday....


Jake at 1 week old
At LGI the following morning we both felt sick as we waited for the consultant to see us. Finally we were called in to the room and I was in tears before I’d even got onto the bed to be scanned. We explained what we had been told and then the scan began. Amazingly the fluid levels had risen slightly. Afterwards we were told that there was now a very small but significant chance that we could have a healthy baby. Dean mentioned 50% but the consultant immediately said no it was much lower than that but there was a small chance. On hearing this our decision was made. We would continue with the pregnancy, I would be on bed rest for the remainder of the time and we would return to Pontefract the following day to put a care plan in place.

We left Leeds feeling slightly more positive although we knew we had a testing time ahead of us. At Pontefract the following day it was decided that I would attend the day unit twice weekly for blood tests and swabs to screen for infection. I would also have fortnightly scans and consultant appointments.

The next several weeks were one huge long scare. A week after making all these decisions I began to bleed and was admitted to hospital. We were shown around SCBU, given steroids and survival rates for a 24 week baby. After 4 days with no contractions I returned home only to be readmitted several times in the following weeks. By now I was losing fluid almost as fast as it was being produced and it was nearly always mixed with blood. I was on a constant countdown to 28 weeks as this is the stage that our SCBU accepts premmies.  Before this time and I would need to be transferred.

Once I reached 28 weeks I relaxed a little but when I was 29+2 I woke in the middle of the night with regular contractions. I rang labour ward and was told to get there immediately with my bag as SCBU was full and I would need to be transferred if I was in labour. On examination they found my cervix was long still and not dilated. The contractions continued though for a couple of days so I was kept in as a precautionary measure.

On the Saturday I was allowed home. I was very uncomfortable and finding it difficult to walk properly. I put this down to the fact that there was no fluid protecting the baby and that meant it would be bumping against me. The contractions continued and became even more regular the following day. We were going to have dinner with my Mum and Dad at their house. It was a treat to be going to lie on a different sofa for a change! When there the contractions were 10 minutes apart but as the hospital hadn’t been worried the day before I decided not to worry either. Whilst eating dinner they became more regular to the stage where they were every 3 minutes. At this stage my Mum insisted we went straight back to hospital.

On arriving in labour ward I was given a speculum examination. This is the only type of examination they will do if your waters have gone to avoid infection. The doctor said I was in labour and at least 2-3 cm dilated although he couldn’t see fully. We were both terrified. We were sure it would be another false alarm ? it was much too early for our baby to be born. The next bit of bad news was that SCBU was still full and they would need to find a cot and transfer us ASAP. This couldn’t be done immediately though as I was contracting too much and had to be given drugs to slow the labour down. I was also given antibiotics in case an infection had set in. Dean was rushing around phoning people. We didn’t even have my bag with us as we’d come straight from my parent’s house. My Mum and Dad arrived with my bag at roughly the same time as the ambulance. We were relieved to hear there was a cot at St. James only 20 miles away. We were transferred with flashing lights and sirens in an impressive 19 minutes!

I was devastated that we’d had to be transferred. After spending several weeks in our local hospital I felt like I knew the midwives and was confident that I would be well looked after. Arriving in a strange hospital when you’re in premature labour is an extremely frightening experience. The first midwife looking after us did little to ease this. She just kept asking why I wasn’t asleep and gave me 2 co-codamol for the pain! I explained that I was in a lot of pain and it was only much later that I got an injection of morphine. Although this helped she was still insistent that I should be asleep. I kept saying the pains were worse and more regular but she didn’t examine me or do much to ease my worries. I wasn’t even offered gas and air!

At 7.30 am the nurses handed over and the new midwife came in to see me. I told her I was in a lot of pain now and felt that I needed to be examined. She said the doctors would do this when they did their rounds at 9am. At 7.50 am I said I could wait no longer and needed to push so she gave in and finally examined me. On doing so she said the head was right there and the baby would be born very quickly. However, I still couldn’t push as she hadn’t set up and she needed to call the paediatric crash team. This all happened very quickly and with 3 pushes our beautiful son was born at 8.06am.
First cuddle
 It was only when he was born that the fear closed in on me. What if our baby had no lung tissue as we had been warned? What if he didn’t live? Then we heard a cry. I know everyone says that is the best sound in the world but it really was for us. After all this worry our baby was here and alive! The paediatricians quickly showed us Jacob Lewis before whisking him away to NICU.

He was in hospital for 52 days and is now 4 years old and is at school. The only ongoing issue with his health is asthma. He really is a miracle ... I hope someone gets some inspiration from our story.


Tuesday, 29 November 2011

Jake's Story - Part 1


My friend Mandy submitted this story to me for World Prematurity Day. The response I had was over- whelming so I decided I would post this story at the end of November to mark the end of Prematurity Month. Here Mandy tells the story of her pregnancy, and the birth of her son will be in part 2 tomorrow

Our story of prematurity is all down to PROM (premature rupture of membranes)  I have chosen to focus on the pregnancy rather than our journey through NICU.

We don't know when Prom happened to us - I have guessed at 17 weeks as that is the time the doctors presumed it happened. It could have been much earlier however we just know it was between 12 and 18 weeks. I hope this story helps someone going through this horrendous time. Please feel free to contact me. Apologies for the length of the story but I know from reading others that details are important when you are in this position ...

On December 13th 2006 I found out I was pregnant. After several months of trying to conceive we were absolutely delighted. The first few months of my pregnancy were uneventful, just the normal morning sickness and tiredness. When I reached 18 weeks I received a phone call which was the start of the most terrifying time of our lives. It was a nurse to say our triple test results indicated that our baby could have spina bifida and we would need a scan later that week to find out. That Friday we went to Pontefract for the scan and after about 20 minutes of scanning the radiologist went out the room. When she came back she said that we needed to go and see a midwife downstairs in the day unit. I was now beside myself with emotion although when we got downstairs the news was fairly inconclusive. The midwife said that the scan showed the baby had hardly any amniotic fluid surrounding it and they could not see clearly so we needed to be referred to a specialist in Leeds. The next appointment was the following Tuesday. After a very sleepless weekend spent reading up about low amniotic fluid we went to Leeds feeling very pessimistic. All the internet sites we looked at gave a very poor prognosis for a baby in low levels of amniotic fluid so early in pregnancy. I read that a way to help raise these levels was to drink as much water as possible. In our mind this was the only way I could help this unborn baby we already loved so much survive. So for the remainder of the pregnancy I drank between 3 and 5 litres of water a day.


Jake at 12 weeks



At LGI the consultant scanned me and the news was not as bad as we were expecting. Our baby looked perfectly fine to her (no spina bifida) but she could still not see very clearly as the fluid levels were still low. She was not worried about this, however, and said they would keep a close eye on me but they thought the outlook was not too bad. We left feeling quite positive with our appointment booked in two weeks. In these two weeks we got back to some normality and, as a teacher, I returned to work. I had taken the few days off between the last two scans as I didn’t feel emotionally able to cope with work.

When the day arrived for the next scan we were quite relaxed and we decided that my husband didn’t need to attend this scan as he was using up his holiday allowance extremely quickly! Accompanied by my Mother in Law I went to Leeds on the train and back to LGI. As soon as the consultant began the scan I knew something wasn’t right, the doctors mumbled between themselves before finally telling me there was hardly any fluid again around the baby and this was very bad news. We were told that there were three possible causes of low fluid levels and they needed to find out which one it was. We were told that the first thing they needed to do was a chorionic virus sampling (CVS) test to rule out a genetic problem with the baby. Earlier in the pregnancy I had been opposed to any such testing but now it seemed like a necessity. I rang Dean (my husband) in tears and we decided I would have the CVS test done there and then. I was terrified that our baby would be harmed and we were very lucky that the procedure was uneventful and the following day the results came back showing there were no genetic problems. Another cause of low AFI (fluid levels) could be lack of kidney function or bladder problems but again the scan had shown this not to be the case.

Jake at 18 weeks

We now had a two week wait until we saw a consultant. In this time we were both confused as to how I could have low fluid levels as the only remaining possible cause was premature rupture of membranes (PROM). We were sure this wasn’t the case as I would have known wouldn’t I? The day finally arrived for the consultant appointment at Pontefract. We naively presumed that this would be a very quick appointment as he had never scanned me and did not really know our history. We guessed (wrongly) that he would just say the consultant in Leeds at the next day’s appointment would give us details and put a care plan in place. So considering this we decided Dean should go to work that day and have the next day off for the important appointment. This was a bad decision, which we both regret now. The consultant that day absolutely devastated me when he told me the chances of us having a healthy baby were very slim and the best option may be a termination. At this stage I was 23 weeks pregnant and our baby was moving around. He also said that I was now given the diagnosis of PROM and as such I was at a high risk of contracting a serious virus, which could harm the baby and make me infertile. I asked as many questions as I could think of through my tears and my Mum was a fantastic support. The consultant said I could go home to ring Dean and make my decision but they would get me into labour ward that day to deliver if I decided upon a termination. I was adamant that I would never terminate this precious baby but the prognosis for our baby was so bleak. We were told that he would definitely be premature and probably within the next week or two, he would probably have pulmonary hypoplasia and he would probably have many limb abnormalities due to being so squashed.

Devastated at the news I went home. I rang Dean straight away. All I could say was “they want us to terminate but I’m not, they have said the baby will probably die.” Dean came straight home, equally distraught. When he got home my Mum explained everything that had been said. At this stage our opinions began to differ for the first time. Dean said he had to think of me and if I was at risk of contracting a virus, which would not only make me infertile but could threaten my life he had to prioritise me. These factors never crossed my mind. This baby was my priority and there was no chance that I was having a termination. Dean was very opposed to terminating the pregnancy but felt like he was stuck in the middle and did not know what to do. We spent a long afternoon and evening discussing our options, crying and researching on the internet. In the end we decided we would wait to see what happened at the scan the next day and get a second opinion, thank goodness we did. 


Jake at 19 weeks


Mandy's story continues tomorrow.....

Monday, 28 November 2011

Weekends on NICU

I got involved in a bit of a discussion about this article today on the BBC news website. In a nutshell it says statistics show that there is a spike in death rates at the weekend in NHS hospitals. I would love to know if such figures are available for NICU but doubt there are. The main reason for this is that there continues to be a culture of "normal hours of work" for senior consultants, Monday - Friday 9-5.

I find this baffling and somewhat infuriating, that younger, newly qualified doctors, are supposed to do all the difficult hours, with little experience, and often little sleep, and few opportunities for quality supervision, whilst the consultant who has "done their time" can work "normal hours", medicine just isn't like that.

I remember always feeling nervous on Friday afternoons, when the unit was slightly less staffed, and there were less experienced doctors around. I always hated it when blood tests would come back on a Friday and Joseph would need a transfusion, or new antibiotics, I could just see things going pear shaped when there wasn't anyone experienced around to sort it out.

And indeed, I recall a weekend where things were dreadful (and the consultant came in immediately I might add) but there weren't the additional support staff around and some facilities were closed, and I could see the registrar becoming more and more stressed. On this weekend it was all hands on deck, helping one another out.

And one of the doctors on Twitter suggested that consolidating services in large hospitals is the answer, instead of having lots of small units dotted about, and that the problem is that "we the public" see closures of units and consolidation as "cuts" rather than improvements.

I do accept consolidation and modernisation is necessary to a degree, and our local hospital has been a victim of this, and the unit where Joseph was born and raised will be closed. His (@DrGrumble) feeling is that in larger units this will change, and there will be more experienced staff on duty at unsociable times, which I truly hope is the case. However I have some serious concerns about this "bigger is better" philosophy and wonder if its truly what will happen. I guess for our area we will only know once it starts unfolding.

However, weekends in NICU wasn't all bad. Often times I'd be given more freedom to get Joseph in and out of his incubator on my own. I would get "forgotten" about and Joseph would have longer kangaroo cuddles. An obvious benefit of weekends was that my husband was around, and we could tend to Joseph's needs together, and have time out together, I wouldn't have to sit on the Kylie Hodges memorial bench, outside the nurses quarters!

Every weekend I still spend a minute or so reminiscing about our time on the unit, and the excitement of driving up together to see "our magic boy". 


Sunday, 27 November 2011

My Pet Peeve - Oh I Couldn't Do That

My entry into care work was at 15 years of age. A friend was intending to go into nursing and wanted to do some volunteer work at a nursing home. It was summer holidays, so I thought "why not?" And I went with her. At first our main roles were to run bingo, help with craft and gardening activities and reading. However this was in the days before CRB checks and risk assessments and broadscale suing of care providers, and we did some personal care as well, such as assisted mealtimes (back in those days it was called "feeding").

One day I was reading to one of my old ladies. She was embarrassed, she'd soiled her pad and wanted changing. I knew that this was beyond our remit and went to fetch a staff member. This nurse looked down on me like I was piece of dog poo on the floor and said "What? You wipe your own arse don't you? Go and do it". So I did. I got her all sorted out nicely, put clean knickers on her, washed my hands then did her hair and we went out for a walk. I honestly thought nothing of it.

I rather inadvisedly did a Bachelor of Business at University (I have one subject left that I failed over and over again, Business flipping Statistics, my achilles heel), but always was jealous of my friends doing nursing (except when they were doing cadaver work, I like my bodies talking  back thanks). All through university and my one year period of unemployment, I kept my hand in. Not always physical caring but I did advocacy work, occupational therapy with people with head injuries, work with young people. I loved it.

Eventually I got a job working in a "group home" with people with disabilities. I have had other jobs, working in a bank, and working for a health insurance company, and I do like that sort of work too. But my heart is in care work.

But I hate the patronising attitudes I get. And I feel lucky. I get paid for this. There are millions of unpaid carers, doing this for love, looking after parents, relatives, children, little help and no recognition. My heart goes out to kids that don't have a childhood due to the care responsibilities, to grown up kids who give up their homes and their jobs to take care of elderly parents.

I feel priveleged. I do really, it's not just lip service. I get involved in people's lives, I get far more reward than just pay. I said goodbye to a client yesterday, and I do need to be careful here about confidentiality but I want to share this. He's 25. He has Batten's disease.  It's been a delight to transition this young man from hospital into a lovely place where he will be now. He used to say "I can't see the sky", he didn't mean physically as he hasn't been able to see for a long time, but he meant figuratively. His room has massive windows overlooking a beautiful garden. He has the sky back . He put his head into my hand and stroked my other one, whilst I said goodbye and wished him the best. I had a little tear.

He gave me far more than I gave him.. And those of you scared of a little poo, a little wee, and a bit of hard yakka are missing out.

And you know that nurse, fed up, with no time for a spotty faced school girl had a point. You wipe your own arse. Another person's poo is very much like your own. We all have responsibility to care and look after one another. And some of us wear a uniform and get paid for it.


Saturday, 26 November 2011

How Not to Talk to a Pregnant Woman about Weight

I got pregnant rather by surprise. I had come off depo provera with the expectation that I would lose weight before having a baby. We weren't using contraception, however, and decided to take our chances. 6 weeks after returning from honeymoon we discovered we were pregnant.

I remember seeing my midwife in a panic and worrying about my weight, she told me not to worry and we'd deal with it, that loads of large women have pregnancies and are fine, and there was no reason to believe that things wouldn't be different for me.

However, they were different, and I knew there was trouble brewing. At 18 weeks I went to the hospital to see the consultant to check all was ok and discuss a management plan. Unfortunately I saw a junior doctor. I was unprepared for the way the consultation was to go. He shouted at me, made me feel like I was a kid. "You are an irresponsible fat person. You will get gestational diabetes. You won't be able to have pain relief as you are so fat. You will have a 10lb baby." He then went on to ask if I'd had a 12 week scan, and said "well it's a wonder they could see anything". And he said "well normally I would listen to the baby's heartbeat but you are so fat, it won't be possible". I managed to stare at him and say "it's alright my midwife heard it yesterday".

He was dismissive of my concerns that I might get pre eclampsia, and basically laughed me out of the room. I came home on the bus, tears coursing down my cheeks. Once I got home I took a deep breath and remembered the old saying "no one can make you feel inferior without your consent" and I rang our Patient Advisory Liaison Service (PALS) and made a complaint. The woman who listened to me was shocked. I then rang my midwife and she made an appointment for me to see the head consultant who put a fantastic plan together, which I believe, played a huge part in the safe delivery of Joseph.

I do feel for doctors, midwives and nurses. I think to address and discuss weight is a very difficult thing, and I don't envy them for the discussions they need to have. However, the basic fact is that increased weight does complicate a pregnancy. Increased weight can be implicated in pre eclampsia, still birth, miscarriage and gestational diabetes. It is important to note that these things can happen to normal weight and underweight women too.

I, you have no doubt noticed, am up front about my weight issues, and happy to talk about it. But, we need to do this with respect and positive regard. The vilification of fat people doesn't help anyone.

As for my doctor, he was called in the be on the crash team for my caesarian section. He was very kind, and very apologetic. And, importantly, he has learnt a lesson about how to not to speak to a pregnant woman about weight.

Friday, 25 November 2011

The Plan - Weight Week

I have a very large amount of weight to lose to be in the healthy weight range. I am currently 113 kilos. (almost 18 stone). According to some charts I should be around 55 kilos, but for now I want to aim for 63, which according to BMI tables is a healthy weight, I think that's more realistic, and then we can worry about the rest when we get there!

I'm going to weigh in once a fortnight and will post my progress here. I think I will probably use "my fitness pal" and share my details through facebook and twitter, but I will wait untiil the New Year to do this. I'm not going to stress over Christmas about everything I eat, but I will be mindful. We'll be in Germany, and we're always active there.

My big focus is on fitness, and preparing for the Bupa London 10k. Initially my focus is going to be on covering the distance and not bothering about time. I plan to walk 5-10k in one go three days a week, when Joseph is in nursery, rather than sitting on here blogging, tweeting and wasting time. My computer time will be in the afternoon as my reward for sticking to the plan!

On non walking/running days during the week, Joseph and I will do an active activity, park or soft play, or another walk. At nap times I will do stretching and strength work.

On weekends I will walk to work, and keep as active as I can.

Food is less of an issue, because when I am active I crave healthy food. I plan to aim for a range of fruit and vegetables and low GI carbohydrates and good sources of lean protein, and keep snacking down to healthy snacks in moderate amounts. I found last time having a "treat" day one day a week was great. I didn't go mad, either kept all my meals healthy and allowed myself one nice treat, a piece of cake etc, or didn't have the treat and had one treat meal. Then onece a month had a "treat week" where I had two of these days. That worked really well for me.

My huge challenge is comfort eating. 80% of the time I eat fine, but when I am depressed or anxious I eat loads of the wrong foods and often when anxious I don't leave the house, thus compounding the problem. I am hoping that by eating well and exercising regularly I can avoid these times, however, I realise that this is going to be an ongoing issue and plan to have a consultation with my GP to go over my plan, and see if there is any help available. I am still on a waiting list for counselling, and I would like to see if I can see a dietician. After all the NHS are saving a considerable amount of money not paying for a gastric band or bypass!

I'm actually really looking forward to this challenge, and completing the run in a better time that last time. I'll be happy to just complete but if I can do it in less than 1:30:00 I will be really happy.

Any support, or anyone wanting to do this with me, I'd love to hear from you. Also, suggestions of motiviating running songs, recipes and walking/running routes around North Manchester!

Thursday, 24 November 2011

Why I Won't Have Weightloss Surgery

My BMI is 44. This is classed as morbidly obese. When people find out that I am morbidly obese they are suprised. I eat reasonably healthily, I excercise, I am not the sort of person featured on reality TV who lies in bed and eats chips and cake all day. There are reasons why I am overweight, which boil down to eating too much of the wrong thing and not exercising enough, and I'll go into them tomorrow.

I am being open about obesity as we need, as a community, to get a better grasp of what obesity is and how to help those who are obese, like me. We need to get away from these ridiculous images of obese people being out of control, stupid people, who do not care about themselves. This is not reality.

As someone with a BMI of 44 and high blood pressure, in some Primary Care Trusts I would be eligible for surgery (not in Bury though, funding has ceased in light of the NHS cuts). This rather sobering. I am fat enough to go under the knife.

At times, I have thought about it, especially when my BMI was even higher. But there are several reasons why I wouldn't go down this route.

Firstly, I am an anaesthetic risk, being obese and asthmatic, and I wouldn't want to go under a general anaesthetic unless it was essential surgery.

Secondly, although its hard I know I can lose weight. I know through mindful eating and planned exercise, I can and I will lose weight.

Thirdly, I am concerned, because of the main reasons I am overweight, which I will go into tomorrow, that I would have to have the most drastic surgery, a gastric bypass. I am convinced I would breach the lap band rules and potentially cause myself damage.

I think weight loss surgery is unavoidable and necessary for some people. Especially if you have an imminently life threatening condition that your weight is affecting, or have seriously low mobility and can't exercise. It does annoy me that there seems to be little NHS help for those who want to lose weight the "old fashioned way" but will pay a serious amount of money for surgery.

I truly hope, and will work hard, to ensure I never have to go down this route.


Wednesday, 23 November 2011

Why Tommy's - Weight Week

I know for me, the key to losing weight is not so much my diet (although that is important) it's exercise. Last time when I lost a lot of weight, I exercised and set constant goals. So this time I've decided to set my goal to run the Bupa London 10k.

I have chosen Tommy's for many reasons. One is, appearing on Daybreak was my first little wake up call. I felt frumpy and out of shape, and I was embarrassed that Adrian Chiles (who it has to be said, is no Twiggy either) asked in the pre-production meeting "well what I don't understand is, why hasn't this woman lost the weight?" I felt embarrassed, and ashamed.

Secondly, I have been talking a lot about weight in pregnancy, and it's time to put my money where my mouth is, as it were, and do something proactive about it. It is not going to lose itself overnight, I have to do it. And if I can do it, anyone can!

Thirdly, I very much credit Tommy's pre eclampsia research for saving my life. My hospital weren't sure what to do and I know that they used Tommy's to get guidance. And I am so grateful that they are here, not only researching and sharing that information, but providing practical help for women, like me.

Fourthly I have been involved as a volunteer with their premature baby support guide, and I'd like to think that the money I raise will help with production and distribution of this.

I'd love to support more charitable works, and clearly Bliss are very close to my heart, so we'll see how this goes!

I am really looking forward to it! I know I can do it, because I have done it before, and I have so much support around me and I know you will all get me through!

Tuesday, 22 November 2011

Fat Girl Running - Weight Week

So my wake up call, being turned down for life insurance, got me thinking about what I need to do to lose weight. As mentioned yesterday in 2004 I started on my healthy living journey and got down from 120 kilos to 90. Unfortunately I got way laid and put most of this back on. I am now 113 kilos.

What worked for me last time was goal setting, and focussing on exercise and eating for energy, so that is what I am planning this time. I decided I really needed an exercise goal, so I am planning to do the Bupa London 10k in May 2012. To keep me focussed and honest, I am not running for myself but for Tommy's The Baby Charity.

I have pledged to raise £350, however my goal is £1000. I think that is achievable, with over 700 Facebook friends and 1900 Twitter followers, this should be achievable, even if everyone gave £1, I'd be there.

So now the hard work commences, training for a run. I have done a 10k before, I think it was 2006, the Bupa Capital 10k. I loved it and had a fab day. My time was 1:39 so my aim this time is to better that time. I ran and walked, and can see that I will be doing that again, with my weight pure running for 10k is going to be hard. However last time, my goal was just not to come last, so definitely the same goal this time!

My plan is to build up my walking, and start interval running. I firstly need to sort some good running trainers and a fabulously supportive sports bra. If anyone wants to recommend brands or companies, or better still if someone wants me to trial products in return for blog posts, that would be great!

So please join me as I set out to do this, and keep tabs on my progress. Any tips for a fat girl starting out running again would be welcome.

And please visit my Virgin Money Giving Page and give what you can, even if its £1, as they say, every little helps.




Monday, 21 November 2011

Weight Week - A Wake Up Call

I've decided to blog about weight this week. When Joseph was born prematurely, the doctors were at great pains not to blame my weight. Pre eclampsia can happen to anyone, and my consultant did say my body type was a factor rather than my actual weight, and should I lose the weight, I would still be at risk for pre eclampsia. But I live with the fact that my excess weight probably played a part in Joseph's arrival. What's done is done, however, and there is no mileage in beating myself up over it.

My husband and I recently wrote our wills, and as part of the process looked at our life insurance provision, and we decided to go ahead and apply for life insurance for myself. We approached two companies, and I had a medical. I have been knocked back by both of them on the grounds of my BMI and my blood pressure, which though normal, is medicated, and is on the high side of normal.

So, the wake up call. The insurance companies have refused to cover me as they feel I am at a risk of premature death. And yes, in these very sensitive economic times they are probably being a little over the top, however, I can't keep running away from this. I am seriously overweight and it is putting my health at risk. I need to do something about it, and I need to start doing it now.

With being overweight comes a sense of shame. I am ashamed that I have let things slide. My biggest sense of shame comes from the fact that in 2004 I started a healthy eating and exercise plan and lost 30 kilos over two years. I just ran out of steam. I got half way and conked out. The slightly good side is that I've managed to only put on 23 of the kilos I lost, and didn't return to all my bad habits.

I have some fun and interesting posts planned for this week, and I invite you to join me in talking about this tough topic, and to follow me as I address this issue in my own life.

Sunday, 20 November 2011

The Mummy Quiz

I have been "tagged" sort of, by the lovely Cafe Bebe. Well I am sure she would have tagged me if she does that sort of thing, like me she hates tagging people in memes!

Arising out of the Britmums blog prompt for this week, Cafe Bebe poses the following questions.

Before my child can fall asleep I have to..... read three stories. Joseph has a suprising amount of concentration for books. I usually read a long Julia Donaldson, another long book and then one short one. We have a few books that are a song in a book like "Over In The Meadow", and I often read one of these. I am impressed by Joseph's memory for words and stories and his love for books. Occasionally I will read four!

One thing I do that makes my child laugh is..... our house is regularly filled with Joseph's laughter, he has a very ready sense of humour. But the one thing guaranteed to make him laugh is "robot kitchen walking". If I'm fixing food and drink for him if I start doing stilted robot walking from the bench to the fridge then to the table, this sends him into fits of giggles!

One thing my child does that makes me laugh is..... every week (and sometimes more often as our council is very hot on this) Joseph sees the "rockstars" the bin men. He adores the bin men, and their big truck with flashing lights. It's hero worship on a grand scale, and so cute to see, and it really makes me laugh. The bin men often do a special flash of their lights, or wave at Joseph, and he just swoons. Hilarious.

I'm more lenient than I thought I would be about..... everything. When Joseph was born prematurely all my preconceptions about parenting flew out of the window and into the carpark. I hadn't thought a lot about how I would parent, to be honest, and always thought I would just go with my instincts, but I think I have done this even more. I didn't bother reading any parenting books until Joseph was a bit older, and I have used some of the Baby Whisperer techniques, but that was more because that's how they worked in hospital and I thought it was a good idea to give Josph what he was used to.

One of the most ridiculous things I've said as a parent is..... I said lots of ridiculous thing when expecting, and I think some people would say I said some ridiculous things when Joseph was in hospital, and I know occasionally I have said something and though "geez glad we don't have hidden cameras in this house" but I am not sure I have consistently said anything ridiculous. My husband would possibly beg to differ....

The best rule in our house is..... we all sit together to eat at tea time. We have had this rule from the early stages of weaning, and I love that protected family time, tv off, sat together, chatting and eating. Well we all chat and some of us eat! Joseph is still very fussy and sometimes doesn't bother with evening meal.

Sometimes I wish I could snap my fingers and make my child..... catch up to his peers. I don't overly stress about it, and put it to the back of my mind, but people make comments about Joseph, particularly his walking, and sometimes I wish I could just click my fingers and he be like everyone else. I may blog about it further, but our Health Visitor is very concerned that Joseph walks like a much younger child. Which is clearly fine, as he only started walking at 2.

I have to say being a Mummy is nothing like I thought it would be. It's so much more fun than I ever expected, and I feel like its one thing I've done in my life successfully. At first I was absolutely overwhelmed and terrified, and really resentful of the start we had, but to be honest, it's been the making of me, as a mum, and as a person.

Feel free to join in!



Saturday, 19 November 2011

My Honeybee Girl - A Story of Premature Birth in Africa

This was submitted to me for World Prematurity Awareness Day. I was so moved I sent it to Beverly at March of Dimes, who organised this inaugral day. She agreed with me that it was amazing and she shared it on Thursday. I wanted to share it here for those who may have missed it, in its entirety.



My girl needed me 6 times during the long night. Seizures, spasms, pain, breathing problems. Today we drive some distance to a hospital big enough to handle her complexities and instability for what in other children would be fairly minor surgery. For my girl any intervention is fraught with fear and trepidation – from family, friends and professionals alike. Our local hospital could not accept her admission onto the regular children’s wards, because they were too far along the corridor from HDU, which she can need at a moment’s notice. Surgeries are carried out in major hospitals with access to ITU care.

My girl was born in Africa at 26 weeks. We don’t know what she weighed, nobody bothered to check. We do know she had a 1 minute APGA of 8. Then she was put outside on a table to die. After 6 hours they realised she was still breathing and ventilated her. In a shared crib. After 5 weeks she was sent home to die, in order not to clutter up the hospital. Shocking? Yes, but not so very far adrift from many preemies’ arrival all round the world. Including ‘western’ preemies. We gild over the treatment perhaps by not actually putting them outside, or ‘allowing’ their parents to hold them during their un-necessarily last minutes. But is it so different?

My girl’s determination, strength and character shine through all of this. 6 years later she has a list of diagnoses that scare many medical professionals. She attends mainstream school, and speaks or understands several languages. She defies the odds at every turn. And yet our frequent blue-light rides in her ‘special van’ terrify us every time. When she’s lying blue-grey on the floor and I can’t find her pulse – again – I am at my most distraught. When she recovers I am angry angry angry. A note for the medics - don’t cross me on those days.

When she’s lying in resus or HDU with a GCS scoring in single figures and I whisper songs in her ear, cradling her in my arms to hold any part of her I can - as if my touch will somehow reach her wherever she is and anchor her to me - while the medical team work over her, sometimes as many as 6 at a time, I feel as if my own heart is skipping beats along with hers. One time when the furore was over, I whispered to her ‘thankyou my honeybee for coming back to me’. Her beautiful eyes flickered open and she whispered back ‘welcome mumum’ and slipped back to her ‘altered state of consciousness’.

My girl wants to be a dancer. A chef. A paramedic. She wants to build houses and paint. She wants to walk like her friends. She wants her body to work properly. She wants to be able to feed herself. To have a wash by herself. And a thousand other little-huge dreams. She roars with frustration and anger, then reaches deep and finds the strength to try again and again and again. I learn from her. I learn most of all to share a love of life lived in the moment, all the while holding onto dreams of the future. Dream big and aim high. Meanwhile do what you can today. My girl has taught me this.

This blog has taken on a direction of its own. I was going to write about the poignancy of driving miles to a hospital that hopes it can cope with her needs, on world preemie day. I was going to stop harping on about the history and the past. But while our babies are still demanding to come early into the world, their stories need to be told. Over and over again, until the unaffected world leaders begin to listen and hear their (silent) shouts for equity. For the care and attention that should be their birthright, their due. For the tables and waiting places to be taken away for ever. For their ongoing needs to be addressed and supported. For proper research, at the point of prematurity and on and on into the future lives of the ‘unlucky’ ones. Because yes, some come away unscathed. The few and far between ones. The lucky ones. Their terror journey has ended. For so many of us, the rollercoaster will continue to an unthinkable ending.

Honeybee Mum


Friday, 18 November 2011

Coughs, Colds and Antibiotics

This is very much written from a patient and parent perspective. I have linked to a number of sources if you have specific queries, and ever, do not fail to contact your GP with any health concerns. 

I have been meaning to do a post about antibiotics and the problems of antibiotic resistance for quite some time. I have recently discovered SepsisUK on Twitter and discovered through their tweets that today is European Antibiotic Awareness Day .

See this picture? My little boy was just a few days old. Under that fragile skin his body is having the fight of its life. Sepsis. Joseph had numerous episodes of this evil condition. The pre eclampsia tried to kill him, but failed, and then sepsis took hold. I personally know of a few babies who have died due to sepsis.

Antibiotics are vital in the war against sepsis. Joseph had a range of antibiotics. One of the problems doctors face with sepsis is that to find out the exact bacteria causing the problem, blood cultures have to be taken, and it can take several days for the cultures to grow and the exact bacteria to be identified, so in the mean time they have to do a "scattergun" approach and fire the big boys at whatever is causing it. Joseph worked through an impressive array of antibiotics, and thankfully the sepsis, each time, was arrested, and I now have a fit and healthy young man.

I first became aware of the problem of microbial resistance at the age of 15. This website explains more in much better detail than I can. When I was a child and teenager I was quite poorly. I had asthma and recurrent infections. I had quite a bit of time off school, and could get scarily ill very quickly. Asthma management has come a long way since then, but back in the seventies and eighties I was on antibiotics a lot. I recall at 15 my GP suggesting prophylactic antibiotics in winter. I was unsure of whether this was right.

I attended an asthma management course run by the Australian equivalent of Asthma UK, the Asthma Foundation, and through this I learnt the difference between virus and bacteria, and that most of my illnesses were most likely viral, so therefore the antibiotics I had been taken were useless.

There is a major problem with taking antibiotics if they are not needed. Microbes can become resistant. So if we overuse antibiotics (anti-microbials), these microbes mutate and then are resistant to the drugs that are designed to kill them. This can cause a huge problem, the antibiotics we rely on can become useless and we then see the rise of so-called superbugs, that are difficult to treat as they keep mutating.

The vast majority of coughs and colds are viral. Viruses are not killed by antibiotics, you can't treat flu with antibiotics. There are no cure for viruses. I think its important when our children, or ourselves, are ill that we go to the doctor but we have to be aware, and willing to accept that sometimes the only things that can be done are symptom management. It's not that the doctor is uncaring or useless, its that viruses have no cure.

The only treatment for viruses is time, and along with this symptom management. Antibiotics are useless, and can cause more problems than you bargained for.

Next time you go to the doctor, consider what you want out of the appointment, and make yourself antibiotic aware. If you are prescribed antibiotics it is absolutely essential you take the whole course, don't stop once you start feeling better.

I will do a further post on sepsis and the work Sepsis UK are doing, but in the meant time, please read and sign this petition.

Thursday, 17 November 2011

Reasons to Be Cheerful

I've never joined in this linky started by the lovely Michelle. Mainly because I am the fat Aussie Pollyanna and never have to look hard to find something to be cheerful about.

But today I am particularly cheered. I was looking forward to blogging for World Prematurity Awareness Day, and I've had a number of lovely submissions that have been well received. The fact so many people have read and commented, tweeted and shared has made me cheerful.

And overall, what has made me cheerful is that I am part of a huge, diverse community of parents who have had a premature baby. I felt so alone when Joseph was born, so frightened, and now I can help others, which is just amazing, and makes me so happy.

I've just come back from a meal out with my premmie mum friends, and that cheers me too, that we have a lovely group of mums, with lovely babies, who have bonded over our time in special care. I am so grateful for these 4 women.

And above all I am grateful for my blog, my little place to talk and to share my thoughts, and my pictures.

And of course, I am grateful for my magic boy, who brings me such joy and happiness.

Reasons to be cheerful indeed.








Kieron's Story

Kieron's mum Victoria is a fellow Bliss campaigner, and I met her, all too briefly, at Westminster last week. Here is Kieron's amazing story.

Kieron’s journey began on the 27th November last year. That night, a Saturday, I really felt drained, achy and in pain so I decided that first thing in the morning, I would phone maternity day care and get them to give me a check over as I’m a type 1 diabetic as well. I wasn’t “overly” worried as id had a split pelvis while pregnant with my daughter and this felt pretty similar. I took some paracetamol and went to bed at 9.30.

At 2.30am, I woke up with severe stomach cramps and the feeling that I had wet myself. I tired to sit up and only then did I realise, it was blood. What happened next is a blur. I remember my husband calling an ambulance and me phoning my mum. I can never truly explain the empty feeling that I had. My “bump” felt heavy and no amount of prodding and poking made him move. I kept whispering that he’s died.  My mum got to me just before the ambulance did and came with me to the hospital. My husband, Matt, stayed at home with our daughter, at my request. During the 5 minute dash to the hospital, id lost even more blood and I was now convinced that Kieron was no longer with us.

We was taken to the maternity emergency ward, where I was assessed and scanned. To my amazement, there was Kieron kicking away. I cried and I cried hard. Next, the doctors needed a urine sample. Still grinning like a Cheshire cat, off I went to the toilet with the doctor. He did a dip stick test and that showed that I had a raging water infection. I cant explain how I felt at that moment. All this because of a water infection !! I came out the toilet laughing and telling  my mum that it was just a water infection and how I was going to get some antibiotics and be discharged. In the back of my mind a voice was screaming, what about all that blood ? There’s something else here ! As soon as I got back to the side room, the doctor said that he would do a very quick internal and then they would start some medication. Still smiling, I agreed and laid down.

 What happened next will stay with  me forever. The doctor just said “err, right, ok. We need to move you, your 3cm dilated, your in labour”. I remember throwing my hands over my face and thinking, no, how is this happening, I cant be. There is where my emotions shut down. I was given the first of two steroid injections and now they had to work out if I could hold on 12 hours for the next one. I had another scan that showed Kieron was laying transverse, so I would need a C-section, then another scan showed him laying breech so I could deliver normally. Delivery normally, was I hearing them right !!!??

I was taken to delivery suite and given another internal, bearing in mind the first one was only done half hour earlier. This time, I was the full 10cm, Kieron was coming !!!

I phoned my husband who then arranged for a good friend to have our daughter. He was with me within 15 minutes of me telling him. I was still losing a lot of blood and now the contractions were getting stronger. I think my named midwife was starting to panic as she hit the emergency call button in my room after Id  lost even more blood. Another doctor came into my room and said in an uncaring way, that babies born under 28 weeks tended to suffer all sorts of complications and generally didn’t survive. He said that Kieron being born at 24 weeks didn’t have much chance of survival and told me about him being born with brain damage and would be deaf or even blind.  Just as quick as he came into my room, he was gone again and I never saw him again.

I was convinced that although Kieron was fighting from inside the womb, being born would kill him. A crash trolley, incubator and other things were wheeled into my room. This was it. My son, was now ready to enter the world. He was eventually born on 28th November 2010 at 11.50am, weighing 740grams, 1lb 10oz. He was also born in the sack which was to give him every vital chance that he needed to survive. Then panic set in, I could see the doctors and nurses rushing about, shouting for this that and the other. And then he was taken from my room into NICU. As soon as Kieron was taken from me, it was like it had happened to somebody else or like I was watching the latest episode of Holby City. Id only seen him for about 20 seconds.

After the placenta was passed, doctors told me that it was full of blood clots. Id had a placental abruption. We was lucky to be alive because if a clot had of broke free and travelled in the body, it could of killed me or Kieron. I looked at it that Kieron had saved me.

I was kept in over night and given 2 blood transfusions but I discharged myself the next day because I needed to see Kieron. My husband had travelled to The Royal London Hospital in the neonatal ambulance with Kieron and was able to meet the team of specialist doctors and nurses who were going to do everything possible for him. Matt sent me a picture of Kieron but because I hadn’t seen him properly yet and was in complete denial still, I couldn’t look at him as mine. I first saw him on the Monday and was completely unprepared for what I was going to see. Matt had told me what he looked like and warned me about the bleeps, tubes and wires that he was hooked up to. I took a deep breath and in I went. There in an incubator, laying under a plastic sheet and surrounded by tubes and wires was Kieron. What I wasn’t expecting was how he looked. His skin was blister red and see through, he had no ear lobes, just holes in the side of his head and he was only 9 inches long. The nurses said that I could touch him and even doing that took me 10 minutes of building up courage.

That is where our long journey started and where most of my memory is short. I can remember travelling to see him, I can remember endless talks with the consultants and nurses. But as soon as I entered NICU and sat next to him, my memory is poor. He was diagnosed with neonatal heart failure, a PDA and chronic lung disease, within the first week. He also had a small bleed on the brain and also ROP stage 2 diagnosed at a later date. Kieron spent a total of 15 weeks in hospital, 7 in NICU at The Royal London and 8 in SCBU at Newham General Hospital. The PDA was closed, thankfully without the need for surgery, the ROP had reverted back itself without medical intervention and his brain bleed was very minor. His lungs however are still somewhat damaged now and he has 2 inhalers to help.

Kieron  will be 1 on the 28th November and I still look at him with a tear in my eye sometimes. He has come so far and with each milestone that he reaches, I shout it from the rooftops. I am immensely proud of him and for all that he went through, still smiles and laughs ! To look at him now, he is the picture of health and gives so much love, although he is still small and wears clothes for 3-6 months old. With his cheeky grin and big blue eyes, people are in complete awe of him. The closer it gets to his birthday, the more I’m starting to remember from our journey. I think only then will I be able to deal with the emotions that I shut out. 




Charlie's Story

Gemma is a friend that I met on line when she announced her pregnancy. Little did we know then that Gemma would be treading a similar path to the one I had followed with Joseph. It's been a delight to know Gemma and Charlie and to have been there from the beginning. Here she shares Charlie's Story

Sunday 1st May

I woke up 9am to finish off Junior's nursery and I had severe pain in my pelvis, I had put this down to my SPD and walking round Ikea on Friday for the wardrobes. I started the day by cleaning the skirting boards and hoovering the nursery. 
Nice easy day sat on the floor giving my partner instructions on how to build all the furniture.

I started getting twinges by lunch time and thought they were just BH's as I'd over done it all weekend. 4pm we had gone to the in-laws for our Sunday lunch and to pick the cot up and clean it. The pains were a little stronger but nothing to make me think I was in labour.

About 6pm they were becoming a bit more noticeable, my partner by this point made me phone the mw, she suggested a nice hot bath and a couple of paracetamol and to phone back at 8:30pm if no better or they're getting worse. By 8:30 they had got quite painful so rang the mw back and was told they are more than likely BH's but to go to RSH for monitoring and I'll be kept in over night.

We finally arrived at 9:40 at ward 20 (labour ward) and were shown to a tiny room which was boiling hot!!! We were left here until 10:30pm with no pain relief as they thought I had a water infection after giving them a sample  

The consultant finally decided to examine me (with those plastic things they use for a smear??) whilst I was having a contraction and no pain relief I seriously wanted to kick him as it was so painful and uncomfortable, he then pulls out and decides to examine me AGAIN and I was 5-6cms, so they give me my first steroid injection and told me I'll be there for the next. They scanned to see which way baby is facing and he was fully engaged! No wonder I had severe pain in my pelvis. 10:45pm we were wheeled down to a delivery room and I asked for pethedine as the G&A wasn't doing anything.

11:40pm they come with my pethedine, which didn't get a chance to kick in as by midnight I wanted to push, and with the 2nd push at 00:13 Charles James Douglass was born. We heard him cry and he was placed on my chest for about 5 seconds then taken away to neo natal. We were told that we could see him in an hour, but it was 7:30 by the time we got to see him. We later found out it was because they were closed as they were full and they had to jiggle the unit about to fit our lil man in otherwise we'd have been en route to Bristol from Mid Wales!! His weight was 3lb 5oz

Our stay in neo natal was for 7 weeks exactly, and what a long journey that was.
Charlie was resuscitated at birth, then ventilated for 24hours. He was on CPAP until 2days old, in air for a few days then back on O2 prongs, he had to have a topup transfusion at 3 weeks old due to constant jaundice and meningitis, he was back on CPAP at 3 weeks old due to Meningitis for 2 days, then back in air for 3 days and then back on O2 prongs between 20cc and a leak. He was finally taken off O2 at 35 weeks. 

Charlie came home exactly 7 weeks old, but when he was 16 weeks old he had an apnoea and was blue lighted to hospital. His O2 levels dropped to 72 which was unbelievably the scariest thing to happen to us outside of the hospital. He had to have his 5th lumbar puncture to make sure it wasn’t meningitis again. But it was a UTI, we were in hospital for 4 days and got sent home on oral antibiotics, but we had a phone call a day later to say that the hospital hadn’t chased his blood results and it turned out the UTI had spread to his blood too. So we had to go in daily for IV antibiotics.

We’re having a number of tests done because of this UTI and his has to stay on his antibiotics until they’re all complete. Which will be when he’s 1.

Charlie also suffers from reflux, but he is only on Gaviscon for this, and not as bad as when he was born.

He is 6 and a half months old now (4 months corrected) and we are just started to look at BLW (Baby Lead Weaning), we’ve chosen this route because if we go with purees we need to give him his gaviscon for his reflux, but with BLW the food is lumpier so will be easier to settle in the stomach because the smoother the food the easier it will come up. So we know when we introduce things like soup or yogurt it will come back up.

We’ve not had any rolling yet, but he can go from his back to his side and he is constantly doing this, so it won’t be long before he’s there. He can sit unaided for a few seconds, I know it may seem long for some, but it’s a milestone for us.

He is such a happy baby and weighed a whopping 14lb 4oz and 5 and a half months old. Charlie was breast fed until he was 11 weeks old when he chose he no longer wanted the breast, it was the hardest decision we ever made, but we had to put him on formula. He had the best start he could, and he is thriving on formula.

Time in HDU: 1st week, then back in at 3 weeks old due to meningitis for 1 week
Tme in NICU: 3 weeks
Time in SCBU: 2 weeks before going home
Gestational age when started BFing/Bottle Feeding: 34weeks to try, then properly from 36 weeks
Weight on discharge: 4lb 13oz


Link Your Post - World Prematurity Awareness Day

Whilst there is an offical link up here, I'd love to collate all the UK and my friends posts here.

Please feel free to link up!

Luca's Story

Abby is an inspirational young mum, that I have written about before. Her story of Luca's birth is an amazing one, and serves as a timely reminder that it is important for all pregnant women to have the flu vaccination, now that we are aware of the devastating implications of flu in pregnancy.



17 days. The age my Luca was when I set my eyes on him. Born at 27+6 weeks gestation he was left for over 2 weeks without a mummy, alone in this scary world.

On Christmas day 2009, I was feeling very ill and weak. Late in the evening I collapsed and had to call an ambulance. I was taken to the delivery suite as baby wasn't moving very much. What happened that night is still quite blurry but I remember having a drip in each hand and the doctors being worried my oxygen saturation was edging to the 70's. By early morning boxing day a doctor came round and put me onto a portable cpap/bipap machine. I was told I would be transferred to HDU or ICU. The last memory I have is a mask being put over my face and being told that baby might have to be delivered.

The doctors tried to keep Luca inside me but 2 days later on 28th December I deteriorated and he had to be born by crash caesarian in main theatre. He was ventilated and transferred to the nicu. I was put on the critical list and given 6 hours to improve or there was nothing they could do. Tests came back and showed I was positive for swine flu. This in turn caused double pneumonia and lung failure. The ICU team contacted Glenfeild in Leicester who run a specialist ECMO unit. A bed was found out of the 14 ECMO beds the UK has and I was transferred to The Royal Brompton in London.

ECMO (extra corporal membrane oxygenation) is a heart/lung bypass machine used as a last ditch attempt when conventional ventilation isn't working. It is a very specialist treatment and the outcomes are still quite low. After 8 days I was taken off the ECMO and after a further 6 days I was taken off sedation and transferred back to my local hospital where Luca was. 2 days later I was transferred from ICU to Maternity where I FINALLY got to meet my baby boy.

Whilst I was absent Luca went from strength to strength. He was off ventilation and onto cpap which he spent a further 6 weeks on. He was then put onto lo-flow oxygen until 6 days prior to discharge.
He had a very smooth ride in comparison to some of our fellow NICU families and was in for 71 days.

It will be 2 years this Christmas since all this happened and Luca is a happy and loving little boy. He has had a few re admissions and suffers with asthma now but doesn't let it stop him.

I am forever grateful to the doctors and the nurses in NICU who looked after Luca and to all the doctors and nurses who looked after me in ICU.

Wear purple today and take a few minutes out of your day to think about the families affected by prematurity.

 

Wednesday, 16 November 2011

Why Am I Still Here? - Prematurity Awareness

Tomorrow, as my readers will be well aware, is World Prematurity Awareness Day. Awareness is an odd concept, what does it mean to be aware?

The simple fact is that premature birth can happen to anyone, absolutely anyone. And in most cases you cannot predict it. Just because you personally may have never experienced a premature birth, does not mean you are untouched by it.

Prematurity, it is clear, can have a devastating impact on the baby, and the family. What is truly vital, in my eyes, is the care that we give these babies AND the families.

We've got our happy ending. But it may not have been that way. Joseph had care that was exemplary. The way his NEC (necrolitising enterocolitis) was picked up and treated was just amazing, in a level 2 hospital. The way in which his other complications were managed was very timely.

We are very fortunate that Joseph has no effects of his premature arrival.

And that, my friends, is why I'm still here. I recall, in an argument, my husband being angry about my "premature baby crusade" and shouting "you are not the only person to have a premature baby you know".

And that is why I am still here. I am not the only one. I want to write, I want to campaign, I want to tell our story, a story of hope, resilience and courage and ultimately, a story of triumph.

I don't think there is a parent out there who would say any different, having a premature baby is a very isolating experience. Your experience is so different to what you have expected during your pregnancy, and different to your friends and family members experience of childbirth. Perhaps this is why the premature baby community is so strong. I've never seen anything like it!

It's a tough road, when your baby is born premature, and its a different road, one that is rarely straightforward.

But you are never alone. Help is all around, you just have to know where to look.

Tuesday, 15 November 2011

World Prematurity Day - November 17th - Blog for Preemies


In two days time, its the first ever World Prematurity Awareness Day. I'd like to invite you to blog on Thursday about premature babies.
Don't know what to blog about? Here are some ideas

Research famous premature babies, you might be surprised who you find!
Have a look at some premature baby blogs and promote them
The charities that support premature babies, you might have an amazing local one
A baby or mummy who has inspired you
A television programme about premature babies that has touched you

If you feel you don't know much about the 1 in 9 babies born prematurely every year, use this as an opportunity to find out, to learn more and to be inspired. 

On Thursday I will attempt to host a linky so you can all join up with me!

Monday, 14 November 2011

I Am Grateful

Opposite Buckingham Palace
This week marks Thanksgiving over the pond in America, and the lovely Karin at Britmums has prompted us to take stock of what we are grateful for.

As someone who has been blessed beyond measure, I try to take time to give thanks regularly, because it is right and important not to take anything for granted. So here are my ten things right now that I am grateful for.

1. My child's health - I never take for granted the fact that my son is well and healthy. I am so grateful for the doctors, the nurses and the allied staff who have helped him.

2. The NHS - it is too easy to take for granted that whenever we need a doctor, a medical treatment, a medication that we can get it, free or at low cost, and so many people of the world do not have this.

3. The changing seasons - I love the change of the seasons, it would not suit me to live in a climate where it is the same all year round. I get such joy seeing the falling leaves, and watching Joseph "swishy swishy" through them, as I get him more used to working.

4. The internet - I am old enough to remember life before the internet, and I am grateful that I can keep in touch with people, learn things and share experiences easily and quickly.

5. My premmie mums - as we get closer to November 17th World Prematurity Day they will deserve their own post!

6. My house - It wasn't until the age of 38 I finally entered the world of home ownership. I am so grateful for our little house, its warm, cosy, and just big enough for the three of us.

7. My husband - he's funny, annoying, caring, selfish and wonderful! I love him to bits, and am so proud of him (but don't tell him)

8. Transportation - Having come from Tasmania where it is not so easy to get around, I am so grateful for transport, for trains, buses, trams and taxis. It seems like such a little thing, but to me, to be able to get to London in two hours, and to get around with relative ease, is amazing!

9. My cats. We now have two, Atticus Woo who has been with us for a long time, and Niow Niow to whom I normally refer to as the stray. However, after 12 months of feeding her and looking after her, we need to accept she is not a stray, but ours! They give our home warmth and character, I love our cats.

10. God. Last but not least, my relationship with God hasn't been an easy one, and fortunately She/He is big enough and great enough to deal with that. But with God all things are possible, and I am learning that more every day.

Sunday, 13 November 2011

Why I Remember

A Garden of Poppies, Westminster Abbey
I have always, for as long as I can remember, observed the 2 minute silence for Rememberance Day, and now I live in England, we observe both the 11th hour of the 11th day of the 11th month, as well as Remeberance Sunday. I also observe ANZAC day, and encourage Joseph to do the same.

I've heard it said that remembering glorifies war, but only those who think this can never have truly been touched by war.

My father fought in World War II though he speaks little of it. Back in the late 40s there was no treatment for PTSD, no counselling, you got on with your life, put it behind you. But it doesn't work that way. Like many ex-servicemen, medication has been found in a bottle.

I remember one of my great uncles telling me about his experiences in Changi, and feeling shocked to the core about man's inhumanity to man. I was 16. I could barely believe my ears, and could see the ravages of his imprisonment in his tired body. Due to the abuse he suffered he had life long intestinal problems.

The recent wars in Iraq and Afghanistan, as well as action in Libya, make us more aware that these servicemen and women need our care, our respect, and our support. We need to care for them, not just now, but forever.

If this message has touched you, please support our servicemen and women. Simon is running 100 marathons in 100 weeks to raise money for Help for Heroes. Simon also works to raise awareness of Post Traumatic Stress Disorder. I personally think he's amazing, and selfless and urge you to give what you can to help.

Saturday, 12 November 2011

Sleeping - another milestone


Since Joseph was about 7 months old, we've been very fortunate that he's slept well. Initally in a crib, since he was 12 months old he's been in a cot bed, with the side firmly on. I've not been in a hurry to take it off. We did have a bit of a wobble about six months ago, he decided to add sleep climbing to his night-time activity repertoire. I did think it might be safer to remove it, but held off, and fortunately the sleep climbing stopped as abruptly as it started. 
I've been waiting for a sign, and this week I got it. We booked into the Ivy House Hotel in London, and were given a triple room (much to my surprise as I'd only booked a double expecting Joseph to bed down with me). I thought it was a long shot, but I put him in the single bed. Much to my surprise, that is where he stayed, both nights. 

So I decided it was time to take the side of his bed. My main rationales are that he will ideally be in a bed at Christmas at Grandma and Grandad's house, and that some time soon we will need to start potty training, and I'd like to get the settling in bed out of the way.

We had a good start tonight, stories in bed and he settled well, he's since got out 4 times, but has gone back to bed without a problem. We'll just have to see how we get on! I might be a bit bleary eyed tomorrow!

Friday, 11 November 2011

Scary Dark and Other Fears

Joseph has always been a cheerful, bold little character. I remember, when he was almost one, taking him for a blood test. He lay on a bed whilst 2 nurses put the cannula in, I was showing him a Dumbo elephant with flappy ears. He stopped playing for a minute, turned his head, and watched them draw the blood. Had a smile, turned his head back, and kept on playing and laughing. The nurses were amazed.

So I haven't really been prepared for this new, completely normal phase, of fears. And it shouldn't be, but its kind of cute. His main fear is scary dark. He's fine in his room if I turn the light off, that's ok, and I hope this continues. He has a gorgeous night light in reserve should we need it (I haven't got a surface near a power point which is why its in reserve!)

But if he's walking in the hall way and wants to go into a dark room he stands at the door way, clinging on to the frame saying "dark dark, scary dark" until he's rescued! Our light switches are all too high for him to reach!

On our London trip this week, we went to the aquarium.  He was stood by a tank which was right at his level, and a few stingrays came flopping towards him, and he hid behind my legs! I said to him "it's ok to be frightened but it's important we face our fears and deal with them" so out he popped, laughing and smiling at these funny creatures.

We moved on and came across this little bloke (now I say bloke but sexing crocodiles isn't my specialty)

Joseph hid again, shaking. I smiled and said "Joseph remember what I said?" So he popped out, looked at it intently and said in a loud cheery voice "well good morning Mr Crocodile!" So very cute!

I'm finding this age Joseph has reached endlessly fascinating, its so amazing to see what he recalls and what he finds important. I love it.

Thursday, 10 November 2011

The House of Commons

I am very proud to be a campaigner for Bliss, the charity for babies born too soon, too small, too sick. Bliss has two main functions, the first is to provide family support for those with a baby in special care. This support is given primarily by phone, by paid staff and my volunteers. The second important function of Bliss is to campaign for better funding and for improvements in special care for these fragile babies.

Bliss, I think are fantastic, in that they encourage us as parents (and grandparents and other family members too) to carry out a lot of this vital work, and nothing is more effective than a parent who has been there, and seen the reality of neonatal care.

I was invited, along with many other parents, to attend the House of Commons and to ask my local member to attend. I was delighted that my local MP, David Nuttall came along, and listened to the message and collected the report, which I hope he has a chance to look at, alongside his many other responsibilities. I am very fortunate to have a caring, approachable MP and any nerves I had were quickly dismissed when he started chatting to Joseph about the dubious scaling of his various plastic animals. Joseph quickly turned the topic around to dinosaurs.

Bliss have several areas of concern. In these tough economic times, neonatal care is suffering, alongside other areas of the NHS. Nurses are being made redundant, or leaving and not being replaced. Bliss have concerns that many nurses working in neonatal care are not specialists, and this is essential. Just because you can canulate a 12 year old does not mean you can do so with a patient who is 12 weeks early.

Bliss also have concerns about the closures of units and how hospitals are going to cope. This is very real in our area, and given that, unfortunately, it appears the Fairfield Hospital will close, that we need to focus on how we help families in David's constituency cope with this change, and take this opportunity to make sure our fragile babies get the best possible care given the circumstances.

If you share my concerns, write to your MP. Bliss has made this incredible easy, just a matter of filling in the boxes and their clever system does the work.

What I loved about the House of Commons meeting was although there were suits, and important people, and all housed in a grandiose buidling, the day was all about the kids, running around, playing with the lifts, and the MPs who attended made it very clear that Westminster is about the people not the politicians, and made us feel so welcome.

I feel so proud and humbled that I have been to this amazing place.

And thank you David Nuttall for attending and I look forward to working with you on these important issues.


Wednesday, 9 November 2011

Blogging and Blagging - My Take

The blogging world is abuzz following this post from the lovely Sian at Mummy Tips, and lots of other bloggers are posting about this too. One of the best I have read is from Salt & Caramel.

So for those who aren't in the know, let me give a quick run down. When I started blogging I thought a blog was an on line diary and a place for me to have a voice. I had hope that people would read it, mainly my friends and those who have had a premature baby. I thought nothing more about it.

However, many Public Relations (PR) people use blogs to help promote the businesses they work for the products that they sell. They often use bloggers to write reviews of products. In return the blogger can usually (but not always) retain the product for their own use.

I have done a couple of reviews but not many. Partly because I haven't been asked, which is fair enough. Because my blog is reasonably bespoke, most reviews are not relevant. I am about to do a review of toothpaste and products around dental hygeine, but this is directly relevant to my blog as far as I'm concerned, and I was lucky to be chosen to review a toy set for the Wooden Toy Shop.

I am not against reviews but don't generally seek them out, I am usually approached. I am up front about my subject matter and am not afraid to say when something is just not relevant.

There has been criticism of bloggers who seek out product for review. I can understand that PR may find this annoying, but they can filter and delete. You don't have to read a "blagging" letter if you don't want to, just the same way I can delete an approach I am not comfortable with.

Equally as bloggers, we're not paid. We do this for fun, for interest, to keep ourselves active, and to have a voice. Why should I host advertising or write posts for nothing?

But funnily enough, when the question was asked at Salt & Caramel I do actually use blog reviews in my decision to purchase. For example, with toys, I know for a fact that The Boy and Me does very honest toy reviews, and she has helped me in the past decide whether something is worth buying. And an added bonus is that "The Boy" is a similar age to my boy!

Another review I trust is Lou over at Bloggomy  whose recent review of these pyjamas  sent Father Christmas into an excited frenzy.

So in short I do think reviews have value if they are honest and well written, and I do think its ok for bloggers to accept the products they are given to review.

I don't think its ok to use your blog primarily to get product, I think that's an abuse of the system, and the best blogs, to my mind, are ones that have fantastic content with the odd review in the mix.