Saturday, 31 December 2011

New Years Resolutions - Goal Setting for 2012

I am really looking forward to 2012. We have been very blessed in 2011, with good health, and happiness. It's been a wonderful year, with very few lows and lots of highs. I feel ready to take on some big challenges next year and here are my goals/resolutions for 2012.

  • To lose 100lb (from my original weigh in, I think I have lost about 14 Christmas indulgence not included)
  • To raise £1000 for Tommy's
  • To have a fantastic cake bake for Bliss and encourage others to join in!
  • To save £1000 by year end towards Christmas 2013
  • To be a better blogger, not so much my own blog, but a better member of the blog community, comment and support others and get involved in more events.
  • To do more craft projects and make at least one thing per month.
  • To maintain a tidy house, and cut down on clutter!
  • To recycle, remake and reuse as much as I can
What are your resolutions?

Thursday, 29 December 2011

My Resolutions 2011

I didn't make complicated resolutions on New Years Eve last year. My resolutions were simple. The main one was to put the past behind me, to concentrate on Joseph as he is now, and to stop living in the past. I think I have achieved this, and have succeeded in using what happened to us for good, rather than getting upset and dwelling on it.

I also resolved to work hard on my blog and on sharing our story, and I have certainly achieved that. I am so pleased and proud of the reception Not Even A Bag of Sugar has had. I haven't quite worked out what my direction is now, and will be thinking more about this in the coming days. I certainly hope to deepen my relationships with the community of charities, parents and families of premature babies, and to help, in whatever small way I can, raise awareness and provide support.

I didn't make any resolutions about weight last year but will be doing this year. The last time I resolved to lose weight was in 2005, when I lost 30 kilos. I know this time that resolutions are not enough, this needs to be a lifelong commitment, and I hope that I am ready for this challenge.

I wonder, how did you all do with 2011's resolutions? Did you bother making any? Did you keep any?

I wish you all a peaceful time as we commence the New Year full of hope and promise.

Tuesday, 27 December 2011

Nightmare After Christmas

Just to set the scene we are in Germany for Christmas. My husband and I are room sharing with Joseph. We tried various options, a toddler ready bed, a mattress on the floor and bed sharing, however the only thing that Joseph will settle in is a cot. It's a standard cot and he can climb out. It's positioned at the end of our bed so if he does climb out he has a soft landing.

Last night Joseph settled well. We had a nice evening with extended family, eating. For the record I had one glass of wine and a cup of tea. We went to bed at 11.

During the night I had a very vivid dream. This isn't unusual for me, but I don't usually have great recall. This dream was like a movie.

I was pregnant again but with Joseph. I had known him as a little boy, but found myself pregnant again but totally the same pregnancy.

I relived the whole thing from discovering the pre eclampsia to going to theatre. This is where it changed. When we got to theatre there were two other women waiting. An argument was taking place as to who should go first. One woman was at 39 weeks. She had had ten late miscarriages and stillbirths. No live babies. They wanted to deliver as they were concerned that this baby may not survive down the birth canal.

The second mother was also an elective section. She had tokophobia (fear of childbirth) due to previous trauma. This baby had downs syndrome and was to be given up for adoption at birth.

Then there was me. The discussion was taking the direction that these two babies were term and deserved priority over my tiny baby who may not live anyway. Whilst I was poorly death was not imminent and I could wait 90 minutes. The consultants were adamant my baby would be disabled anyway and another hour or so would make no difference.

I was distraught. I explained that Joseph would be small, would need hospital care for a couple of months but would make a full recovery. All the medical staff laughed. They made a complete mockery of me. I then explained I knew this child. He was 2 and a half, walking and talking. He is fine.

They then referred to my notes, and saw depression and anxiety. They said when the baby was delivered, if it survived, they would call social services to have my mental health assessed and decide whether I was a fit mother.

I began to sob. I could feel my toddler in my arms. He was crying out "Mummy,  mummy, mummy". He needed me to fight for him and nothing I could say or do made any difference to these people who had made their minds up that the life of the term babies was more important than the life of my premature baby.

I woke up, looked down, and there was Joseph, frightened, lying in my arms, asking for cuddles and kisses. I'm not sure whether I had been sleep talking, or called out, or whether it was just coincidence.

Most spooky indeed.

Tuesday, 20 December 2011

Homesick at Christmas

I've lived in the UK for nine and a half years, about 3 x longer than I thought I would last, and this is my 9th Christmas in the Northern Hemisphere. I never go home for Christmas. I actually really love Christmas here, and it all makes sense, the lights, the snow, the Christmas songs. I love the traditions, that although adopted in Australia, make much more sense here. How lovely to have all the Christmas lights when its dark by 4pm, to wrap up warm and have mince pies and mulled wine whilst doing your Christmas shopping. I have embraced Christmas here.

However, I miss my family. I miss them all year round, but never so more acutely than at Christmas. I miss my mum and my auntie cooking Christmas dinner. Huge spreads of cold meats, salad, and always two puddings, the obligatory Christmas pud, then something more fitting. An ice cream bombe, a gateaux, a fruit salad perhaps.

And I miss the weather. If I was a mega millionaire (with no care for the environment) I'd have a superfast jet, spend Christmas Day here, then get to Australia in time for Boxing Day!

This is the first year of Joseph's life that he won't get to Australia in the New Year, financially its just not possible, and I have decided I want to work towards spending Christmas in Australia in 2013, so this coming year I am going to save, and try to bring some extra money in towards this goal.

Tasmania has some lovely traditions. The Toy Run, where bikies ride from one end of the state to the other, collecting toys for children less well off. The Giving Tree in the ABC studios in Hobart, where local people buy gifts for people who may have nothing to open on Christmas day. The parades through Hobart and Launceston with floats and people all dressed up, and my favourite, Carols by Candlelight. I used to go to the one in City Park in Launceston every year.

New Year's Eve makes so much more sense in a warm climate, as much as Christmas is best celebrated in a cold one. Barbecues, going to Hobart and walking around Constitution Dock looking at all the yachts that have finished the Sydney to Hobart Yacht Race, watching the fireworks and seeing the New Year come in with people you love. Here, I never go out on New Year's Eve, preferring to have a few quiet ones at home in front of Jools Holland's Hootenanny!

I'm really hoping that I can pull this one off in 2013! Bring on the challenge!

Sunday, 18 December 2011

Facebook and My Premature Baby

Ages ago I read this great post by Mummy Pink Wellies about how Facebook got her through the birth of her daughter, and she got great comfort and support.

I've recently received the new update and have Timelines, which is just amazing, it breaks down your information into months. I watched the video this morning that explains it, and it was amazing, it followed this man from his own beginnings, his courtship, his marriage, the birth of his child, the child being in an incubator, and it just sums it up for me.

Joseph's journey was well documented on Facebook. I will now be able to update his baby book with exact dates things happened as they are all on there.

My first update was at 9:32 am on the 7th May 2009 "Kylie Hodges has been admitted in to hospital, suspected pre eclampsia, prayers and positive thoughts please". Followed at 15.47 "Kylie Hodges has got pre eclampsia. Likely to have c-section tomorrow, scared is an understatement."

My blood runs cold reading this now, but it was just the easiest way. I was in hospital, phone calls are expensive, especially to Australia and Germany and it was a swift way of updating everyone. Reading everyone's messages of support makes me well up in tears. It's clear a lot of people hadn't realised I was only 27 weeks along!

It's funny reading on through his stay, how my every day life, of several buses a day, dealing with the hospital bureacracy, and handling the whole situation of a baby who doesn't live with you is reflected on my updates, and most heartwarming to read the little messages of support.

Moving on to nearing homeward, I can see in my status updates my sense of humour shining through. On our first night rooming in, on the 19th July  "Kylie Hodges too half an hour to work out the tv in her room. Working out the baby is proving somewhat more tricky."

And on discharge day at 14:48  "Kylie Hodges is still waiting for the eye doctor. Any of you practice opthalmology in your spare time?" Obviously getting rather desperate! The staff even suggested we stay another day! Um no, I don't think so!

And finally on the 21st July at 17.42 "Kylie Hodges is on the sofa with her little man".

I am so grateful for Facebook, I felt so supported and cared for. Through Facebook I have met and got to know many parents of premature babies, and have offered and received support. I have met experts, joined groups, and it has strengthened my knowledge of having a premature baby, here and around the world.

I will always be grateful to Facebook and dread to think how my journey would have been without it.

And I'm ever so grateful for this update so I can look back on it all, and give thanks to each and everyone of you who cared for me, cried for me and cheered me up when I felt so lost.










Saturday, 17 December 2011

Give a Truly Precious Gift this Christmas

At this time of year there are so many pressures on us, timewise and financially. It's a busy time of year, and often quite stressful. However to balance that, it's also a time of year where we think of others, maybe even people we have never met.

Think of a gift that will cost you nothing, save maybe an hour of your time, will not cost you any money, but might just help save a life. Blood.

When Joseph was in NICU he, like many other premature babies, needed a number of blood transfusions. The medical team lost count at 8 transfusions. I have to say, I had always thought of blood transfusions for adults, or children with leukemia, but had never even crossed my mind that tiny babies might need one or several.

Bliss are working with the National Blood Service  to ensure lots of people give this lovely precious gift at Christmas time especially.

An amazing fact is that one donation can provide enough blood for four individual doses for a premature or sick baby.

If you are interested in becoming a donor please visit the National Blood Service website or call 0300 123 2323 to find out more.

Even if you have previously been told you can't donate, please ring and check, as the rules do change from time to time.

Friday, 16 December 2011

Christmas Shopping with a Toddler and How to Survive It

With money being tight, I knew I'd have to wait til this Friday to do the last of the Christmas shopping, gifts for my Mother in Law and two nieces. I thought it would be quite straightforward as Joseph was meant to be in pre-school. Unfortunately they decided to close for today, so I had no option but to take Joseph. I would normally resort to on line shopping, but with us leaving for Germany mid week I didn't there'd be time.

I was very much dreading taking Joseph and thought it would be a nightmare, so here are my tips!

1. Plan in advance where you want to go, and have an idea of what you want to buy.
2. Try and pick somewhere not too far from home, we are fortunate that our town has had a huge spurt of regeneration and has some great shops.
3. Explain a few days in advance to your toddler what you are going to do. I find Joseph's understanding is a lot better than his speech. I showed him pictures of Grandma, Ella and Livi, and explained we were going shopping for their presents.
4. Choose a quiet time of day and the best time for your toddler. Like me, Joseph is a morning person, and fortunately the shops are at the quietest.
5. Stay focussed on the task at hand, but prepared for little toddler breaks.
6. Rewards! This morning Joseph was excellent in the first two shops, and we got half the presents done, so we stopped for a gingerbread snowman, Joseph's treat of choice.
7. Review, outline what you have done and what you still have left to do, its helpful for both of you!
8. Have a treat at the end. We went to the quietest coffee shop in town for a coffee and bagel, and an apple juice and sandwich.
9. If you are on public transport try and synch your times, we have only have one bus an hour now, but we managed to get done and dusted in two hours, with a snowman and lunch stop!
10. Work within your child's limits. I know that for 2 hours, I need a pram for Joseph, it's also handy to put stuff in, now is not the time for heroics.
11. Round off the trip with lots and lots of praise, Joseph now loves being told he's done an excellent job and I am proud of him.

And so it is all done, presents bought, now just for the endless wrapping! Now that, I am not attempting with a toddler!

Thursday, 15 December 2011

Joseph - My Year in Review

I find it quite atrocious that my mother seems to forget that this blog really is all about me! So it's only fair I get to tell you about my year!



After Christmas mummy and I chilled out at home getting everything ready for The Big Trip. I don't remember much of January, except it was cold and we didn't get out much. There was all this white stuff on the ground, and mum didn't enjoy pushing the pram in it, and I still hadn't found my feet. Well I had, I knew where they were all along, there just seemed to be much better things to do with them than walk on them.

On Valentine's Day mummy and I gave daddy a fantastic gift, we left for six weeks. We went on a big plane (my finest moment was calling a Catholic priest Daddy, mummy went  very funny colour) and landed in Melbourne. Then we got on a smaller plane and went to Tasmania. I got to play with my Grandma and Grandad, and drive them mad. I tried to learn to walk, I could push Grandma's washing trolley, and even walked with Grandad's walking frame.

I spent some time with my Auntie Penni, and her lovely kids. I was a bit miffed to discover I was no longer the littlest and cutest, that title had been handed down to my little cousin Avery. I got to go to the zoo with my Auntie Laurel, and I ate lots of cake, and discovered watermelon! 

We arrived back in England in late March. I was very busy when I got back. I had to see the physiotherapist, who thought I was really funny. Although I was 22 months and not walking, she wasn't worried, she thought I was too clever. The first thing I did when I got to her room was jump on a tricycle and push myself around to look at all the cool toys. I also had the see the orthoptist, who looked at my eyes. I didn't want to play ball, until the end, when she got the cool stickers out, much more interesting than boring tests. The only one I like is the 3d test, because I pass it, and mummy fails it! Silly mummy!

Then after all that I had to see the orthotist (how silly that the eye person and the foot person nearly have the same title), and she thought I was very clever too, and didn't need fancy shoes, which somewhat miffed mummy as the special shoes are free! My feet grow very fast! Mummy goes a funny colour every time we go to the shoe shop. I don't think she realises money grows on trees!

Finally on Mother's Day I decided to do some steps for mummy, she cried alot. Which was very silly, and as I upset her so much, I decided not to do it again until 2 weeks before my birthday, and then after that I walked nearly all the time! Mummy stopped crying then. We had to go and see my consultant in June, and she decided not to see me anymore, which is good, because I hate going back to the beepy rooms (neonatal unit)

We had a lovely summer holiday in August in Great Yarmouth, with my other Grandma and Grandad, and my three other cousins. I was very cheeky and nicknamed my older cousin Charlie. I called him Lola, everyone found it very funny.

In September mummy got rid of me for a couple of days a week. She took me to this huge room full of strange children and stranger adults and just left me. I hated it at first, and took my mucky every day. I used to cry and clutch to my mummy saying "don't go don't go". Mummy never listened and kept leaving me. She said it was called pre-school and it was to help my development. Hurrumph.

Then she confused me, by putting daddy, me and herself into another plane at the end of September and taking me to place called Rhodes. I loved it there, it had sunshine, and never rained. I ate lots of nice food, played in the pool and got lots of attention.


Then we came back, and mum kept putting me in that horrible building, but after a while, I started to like it, and now I love going to preschool.


We've been to London a couple of times this year, which has been very exciting. I learnt to sleep in a big boy bed whilst staying in a funny hotel in London with mummy. We got to go to a huge building, mummy said it was called Parliament. They had lovely green chairs, but it turns out you are not allowed to colour them in with pen. Mummy cleaned it quickly with a baby wipe, much to the amusement of our local MP, is there nothing those things can't do (baby wipes not politicians, I haven't worked out quite what they do yet)


It has been a very busy year, mummy says the best thing about this year is my talking, that I have got better and better, and am very very very very very clever! 


I am looking forward to Farmer Christmas coming in his very special tractor, that daddy is taking to the car wash. I love going to the car wash, its very exciting. And we are going to a place called Germany for Christmas, and that should be fun. I haven't been there since I was little.

And now I am big!




Wednesday, 14 December 2011

2012 My Blogging Resolutions

The blogging prompt this week on Britmums urges us to make some blogging resolutions for the coming year. Maybe resolutions made in mid-December are more likely to be kept than those made on New Years Eve. Who knows?

Earlier this week I published a round up of the year in review for my blog. It's been a really exciting year, and lots of fun, and I have learnt an incredibly amount about writing, working with the media, with charities and its been a year of personal discovery for me as well.

The first resolution I have is to consolidate, to keep doing what I am doing, but do it better. I tend to blog hard and fast, rather than spending ages over posts, and have to say, that the ones I have written straight from the heart get much better reception that those I have spent a long time over. I do have problems with attention to detail and I need to get better at the "boring" stuff, link checking, typing errors etc.

The second resolution is to work closely with the charities close to my heart - Bliss, PiggyBankKids, and Tommy's. Note these are in alphabetical order! I love sharing the work of these charities, as a lot of people don't know of their existence until they need them, or benefit from them.

The third resolution is somewhat out of my hands, but I would love some more radio and print media exposure in 2012. I love radio, and have really enjoyed going on BBC Radio Manchester and Radio 5 Live, and now that there is more national radio based in Manchester I am hoping for further opportunities in this area.

The fourth resolution is to deepen my writing on other platforms. I plan to do some more in depth pieces for A String of Pearls and also for Think Left.  I am hoping for more opportunities to show case my writing.

I think this year I have realised just how much I enjoy blogging, and I can't wait to see how things evolve for Not Even A Bag of Sugar.

I am hoping to attend Britmums Live, work commitments permitting, and just waiting to see how things pan out in the New Year work wise. I so enjoyed Cybermummy, and I can't wait to meet new bloggers and meet up with new friends too.

Tuesday, 13 December 2011

The Guilt of the Preemie Mum

Motherhood and guilt, it would seem, go hand in hand. If you type "mother guilt" into google as I just have there are reams and reams of articles about the guilt that comes with being the mother of a child.

Having a premature baby, however, can bring us into a whole different relm of guilt, because, in our minds, as mother's we have fundamentally failed the first rule of motherhood. "Keep your baby safe until its time to be born".

I do not think I have met a mother of a premature baby who has not felt, very keenly, this acute sense of guilt. "It is all my fault", "I am responsible for this". It is a very difficult emotion to deal with. Sometimes it can be reinforced by comments from doctors, nurses, midwives, family or passers by! Once you have had a baby you become public property and advice and comments come from all directions.

I recall a fellow mum of a premature baby seeking advice from her GP about her baby's reflux. And he said, somewhat off-hand "well its your fault for not keeping her in long enough". He did apologise, thankfully, and it wasn't until he discussed the issue with his wife, who yelled at him, that he realised quite how hurtful his comment had been. He had merely been matter-of-fact, that the reflux was severe as the baby had been premature, but hadn't realised that the way he said it was accusatory, and very unhelpful.

When I was towards the end of my NICU journey with Joseph I had copped a few comments from different sources, and was feeling very sorry for myself and talked to my favourite nurse about how guilty and how responsible I felt. One of the nurses sat and listened, and she gently said "I've only met one woman who could really say it was her fault. She had had a number of premature babies, and each time she'd pierced her membranes with a knitting needle, so unless you have done that, move on, it is not your fault".

What also helped me was meeting other mothers of premature babies. Would I say to one of my friends "this was your fault?" and the answer is a resounding no I certainly would not. I wouldn't say to a pre eclampsia mum "this was your fault" as it quite clearly is not. Pre eclampsia is a pretty indiscriminate finder of folk, thin, fat, normal weight.... None of us knew when we decided to get pregnant that this was our future, or any of the other complications that can cause prematurity.

On my travels I found this piece about mother guilt . The last point is just perfect, and I want any of you struggling with guilt to read this and change your self-talk.
Change "Guilt" to "Regret"
A simple semantics change could make a big difference. "Try substituting the world 'regret' for the feelings you now label 'guilt,'" Adams says. "Regret requires no expiation--simply the realization that you did the best your could in the situation..........."
 I regret that I had pre eclampsia and that Joseph had such a tough start as a result, but I am no longer guilty.

This wasn't my fault, and it wasn't yours either.

Monday, 12 December 2011

The Year that Was at Not Even A Bag of Sugar

It seems odd to be doing a round up now, as the end of the year seems miles away to me! However, it isn't, and with our trip to Germany looming, I am bound to be busy.

In January I signed up with Bloggymoms Blog Dare and blogged every day in January. I noticed my readership increased and it helped me find my voice, somewhat, as a blogger. I found that I got more comments and readers when I blogged about controversial topics, and found that people were really interested in some of the nitty gritty issues around premature birth and pregnancy complications, which surprised me somewhat.

I then neglected my blog for a couple of months to travel to Australia to see my parents. I decided that it was ridiculous stressing myself out, and things quickly returned to normal once I got home.

The amazing thing that happened in June was attending Cybermummy. I felt like a little sponge sitting and soaking up information, tips and making contacts. My favourite moment was asking at the "blogger activism" workshop "how would I go about blogging for say Tommy's" and a voice saying "they're over here!" I've enjoyed working for Tommy's on a few things this year, their pregnancy plan for a happy and healthy pregnancy and the premature baby guide, and look forward to deepening my association in 2012, and raising £1000 for their important work by running 10k in London in May.

My first notable mention in the press came following Cybermummy, in the Guardian no less. It was a quote from a blog post

"I didn't identify as a mummy blogger initially. I thought a mummy blogger blogged about the school run, or about long lunches with their mummy friends, or activities they do with their children." In fact, she writes: "I was struck by how many mummy bloggers have a similar background to me, mummies with kids with autism, with verbal dyspraxia, other mums with premature babies. Blogging seems to be a legitimate way of dealing with social isolation, with dealing with difference. We are the modern-day storytellers, and blogs tell our stories."

I felt really proud when I saw that had been included, and it made me realise that you just never know who is reading your blog. I always thought it was my sister who was the writer, and it made me feel that my writing deserves an audience too.

In August I was asked to do a guest post from the amazing e-zine A String of Pearls.  I wrote a topical piece based on the riots in England, that shocked us all. I was amazed by the response my piece, The England They Don't Want You to See attracted. I have also written a post on my work for Bliss, and look forward to deepening my association with A String of Pearls next year.

September was one of the highlights of my year, I was asked to be involved in the media launch of Tommy's 5 point pregnancy plan, which was just amazing. I found it such an eye opener. I appeared on ITV's Daybreak. I was somewhat disappointed that I wasn't interviewed longer, and think it's a direct result of my mishandling that Christine and Adrian find themselves removed from this gig! (no not really)

I then took part in radio interviews for the BBC, the best being on the health panel on Radio 5 live with Sheelagh Fogarty. It was just amazing to be in the studio around a desk with well known people, and I felt really pleased with the performance.

The end of September saw the MAD blog awards. Not Even A Bag of Sugar had been nominated, and much to my surprise, was successful in being a finalist. I didn't win, that honour went to Clare from A Boy With Aspergers.  Claire is an amazing blogger, and mum, and if you are going to lose to someone, it may as well be someone fabulous! And I have won two prizes on her blog this year! So thanks Clare!

I've been featured in the Bury Times this year, and also on the Daily Mail website. I rounded off the year talking on BBC Radio Manchester for Bliss about the cuts to neonatal services. Now more than ever I am passionate about this, my best mummy friend recently had to go to Liverpool to have her premature twins delivered as there was no room at the inn at our local hospital. Once it shuts, with the other closures, I think this will become all too common.

The ultimate highlight was our trip to Parliament in November. Never in my life did I think I would enter Westminster, that iconic building, with my little boy in his buggy! A low light was him drawing on an expensive looking green leather chair, however a quickly produced baby wipe removed all evidence.

It's been an amazing year for my blog and I look forward to a bright year ahead, which I will blog about tomorrow.

Sunday, 11 December 2011

Supporting Mums of Poorly and Later Gestation Babies

When Joseph was going through hospital, we were fairly unique within our Special Care Baby Unit. Joseph was the only sub 30 weeker for the most part, and by far the smallest baby. The first mum I befriended had an 8lb baby with complex internal problems. I quickly learnt that in medical terms, sometimes gestation means nothing. Any baby can be in trouble for all sorts of reasons. I saw just as many term babies come through the door as I did premature babies.

One of my favourite moments was when Joseph was in HDU there were three other babies. An extremely important specialist was brought in, his entourage were temporarily delayed at the desk, so he came into the room to determine which baby he had been brought in to see, I watched his eyes scan the room and he came directly to our incubator. Suddenly three junior doctors whooshed up to his side and said "oi, you leave our Joseph alone, he's fine, its this one you have come to see", he looked at this enormous baby and said "oh, well I wouldn't have picked that one". Whilst it was sort of funny, it worried me that even doctors can be guilty of assuming that the littlest is the poorliest.

I have noticed, particularly lately, some conversations that have disturbed me. Mums who have had very small babies in hospital for a long time criticising those who feel traumatised, though their babies were in just a short time. And this worries me. Surely as mothers who have been through difficult times we should be empathetic and understanding?

Length of stay is not always an indication of how poorly a baby is. In my previous job, a large part of my role was managing length of stay (usually of adults) but I learnt that things can delay discharge which whilst are medical in nature, are not severe. So for example Joseph's length of stay was 76 nights, he was critically ill for the first 25 of these. The rest of these days were Joseph learning to breathe, suck, maintain his temperature, all of which are important, but didn't make him poorly, just underdeveloped. Whilst not ready for discharge, he wasn't a "sick" baby.

But contrast this to a baby born at term, who perhaps was in foetal distress, delivered by ventouse, crashed at birth and needed to be resuscitated and then have 5 days in special care to receive treatment. Is that any less a traumatic experience for the mother, just because the stay happened to be 71 nights shorter than ours? Babies who need surgery often are in a much more critical condition than Joseph was, yet their stay is shorter. I think we need to completely get away from this concept of the longer a baby is in the poorlier they are.

Clearly there are babies who are in hospital a very long time, who are indeed, very poorly, and I wouldn't wish to minimise the trauma and stress these mothers go through either.

Often mums who have had a traumatic experience are worried about talking to me. "I feel bad even discussing it because your situation was so much worse." I never feel that way, in fact I felt and still feel very blessed. When I got to hospital that day, and was diagnosed and told Joseph would be born the following day, I knew exactly the path we would tread, before a doctor even came and spoke to me. I knew Joseph would be in at the very least until around his due date and anything else was a bonus. I knew he would be in ITU for about a month, then HDU for a month, then Special Care Nursery to finish him off before he would be ready.

Joseph had his "blip" around day 5, and was critical for a time, and whilst NEC is evil, it's very common and it is not unusual for babies like Joseph to either have NEC or conditions similar. For the rest of his stay his "complications" were very ordinary ones for which there was a clear treatment plan. 

Contrast this to a mother who has reached term, goes into labour and then it all goes pear shaped. You expect to deliver a healthy baby, and get home within a few days. If it all goes wrong, its very distressing for all concerned, and that family are launched into the unknown.

I hate competitive parenting at the best of times, but I think sometimes those of us who have had premature babies can be just as bad as the term mummies comparing how brilliant their babies are!

I strongly believe that many term mums or mums of premature babies of later gestation, fail to get help and support because their experience isn't recognised, or its minimised. I do feel that as mothers, not just as mothers of very early premature babies, we have a responsibility, as much as we are able, to empathise and support all mums, equally, without judgement.

To me, the absolutely most traumatic part of our whole journey was being separated from my baby, not being able to be with him at birth, coupled with the fear that perhaps I may not be bringing a baby home. And surely, that unites all of us whether your baby is in the unit 7 hours, 7 days, 7 weeks or 76 days.


Friday, 9 December 2011

Visitors and the NICU

I wanted to blog about this, as its something I am asked about a lot in various ways, usually something a long the lines of "my friend wants me to visit, but not see the babies". Sometimes this is personal preference sometimes it is unit policy. So let me tell you about our unit.

Our special care baby unit changed its rules halfway through our stay. The first element stayed the same throughout, and that is visiting times were 3pm - 4pm and 7pm-8pm daily, with very little room for flexibility. There was sound reason for this, babies need their rest, and often procedures were taking place, and consultations. In baby units everything takes place "in house", x rays, blood tests, minor surgical procedures take place within the unit, babies do not go out.

Initally you could have 2 visitors + 1 parent by the cotside, and you could "relay", so for example have 2 grandparents, and 2 aunts and then swap.

Under the new rules only one parent and one visitor were allowed with no swapping, so that made it very difficult for people with large families. For us it was no problem. So that's reason one, it may be that the mother and father don't want friends visiting, and to use their visiting slots for relatives.

The second thing is, it can be very difficult to manage visitors expectations and prepare them for the reality. Let me tell you a story about one of Corey's aunts. She really wanted to see Joseph in week 2. I hadn't really prepared her, because she had had a very early premature nephew an earlier gestation than Joseph, so incorrectly assumed she would be ok.

In our unit they used to do Joseph's line change at 3pm, I did warn the unit that we were coming at 3 and to do it at 2 or 4. Now a line change is relatively straight forward, two nurses would go through the notes from ward rounds, check the dosages, refresh and change any of Joseph's IV lines that needed it, and renew all the syringes. It's quite technical as 1ml out can be the difference between a therapeutic dose and a deadly one, so they used to draw all the blinds and have total silence, just their voices.

We walked in this day, and the nurses had just started they drew the blinds in front of us, my heart sank. Then I turned to see tears streaming down the aunties face "they're working on him, they're working on him". I explained it was just normal procedure, and apologised, suggested we go and have a cup of tea and come back. She wailed "they just tell you that, this is serious, he may not make it". And with that she decided to go. And I was stood there. Alone.

After that day I banned visitors. I lied, and said NICU didn't allow any, and that once he had stepped down perhaps they would relax their rules. We invited a few close friends later on, and the beauty is that these people had followed Joseph's journey on Facebook and were prepared somewhat for what they would see.

As a parent its hard dealing with a sick baby, and dealing with other people's emotions is sometimes more than we can bear. For me, Joseph was my normal, the only newborn I'd had a lot to do with, and I didn't have the ability to empathise at that time, I couldn't see beyond my own drama, and I don't apologise for that, it was needs must at the time. There are also very practical fears of cross infection too, the more people coming and going, the higher the likelihood of a baby catching something.

If you are asked to visit, either parents or the NICU I think its fine to take a gift for the baby, perhaps just a small one, saving a bigger one for their homecoming. Little soft teddies or blankets, or even muslin clothes, I used them for everything! Even swaddling blankets. One of my favourite gifts was from Jenni, who bought me lovely blue printed muslins.

A gift for the parents is always welcome, sweets, chocolate, snacks, homemade biscuits, magazines, it doesn't have to be lavish, but if you do want to go a bit lavish, Crabtree and Evelyn handcream, particularly La Source, never goes astray!


Thursday, 8 December 2011

The Day You Were Born

The personal blog prompt over at Britmums this week is all around birth, either telling the story of how we found out we were pregnant, sharing the news with our partner or our birth story. This blog is built on my birth story, and I've shared all this on my blog before.


What I think about often is how I will tell Joseph the story of his birth and his start in life on the NICU. This is one idea of how I might do it.




joseph 142


Dear Joseph,

You were born on a hot Friday on the 8th May. Most babies are in their mummy's tummy for 40 weeks or so, to grow, to learn how to suck and feed, to get ready for life in the outside world. Sometimes, for lots of reasons babies are born early.

I had become poorly, I had an illness called pre eclampsia. We had some tests and the doctor found out that you weren't growing anymore, so you had to be born.

Your daddy was there, and lots of doctors and nurses. They had to cut my tummy open, and pull you out. You were born upside down!

Because you were very small, and hadn't finished growing, you had to go with the doctors and nurses straight away into a special part of the hospital called the Special Care Baby Unit. You had to have tubes and wires to make sure that they could look after you properly. You had to be fed into your tummy with tubes, because you hadn't learnt to suck and swallow yet. You had to live in a plastic box called an incubator, to protect you from infection, to keep you warm, and to provide you with special air with extra oxygen.

Every day you got a little big bigger, and a little bit stronger. We were so proud of you. After a while, you moved into a different part of the unit, and we were allowed to cuddle you whenever we wanted to. My favourite sort of cuddles were "kangaroo care" and you loved these. I would pop you onto my chest and you would go to sleep. Every day we were excited to see you, I would sing to you, and read you stories.

After 10 weeks, you were strong enough, and big enough to come home with us, it was a very special day!

You made lots of special friends, and you are still friends with Max, Izzy, Kate and Emma who were all born too early as well.

Your birth was a little different to lots of other babies, but it was a very special time for your daddy and I, and we are so very proud of you.

Lots of love

Mummy
Birthday boy 104


Wednesday, 7 December 2011

Breastmilk Fortifier - A NICU Mum's Perspective

Like many expectant mothers, I had intended to breastfeed my baby. I thought I'd deliver naturally, baby be put on my chest for skin to skin, it would find my nipple, and we'd work at establishing breastfeeding.

Having a premature baby introduces you into a whole new world of infant feeding. Joseph was fed through his umbilicus to start with, then after a few days a long line was inserted to feed him directly into his stomach. Joseph was fed a special non formula feed, known as Total Parental Nutrition.

All the while, I pumped my breast milk and stored it, I knew at some point he would be weaned off TPN and onto milk. Milk was used for mouth cares, and for comfort.

At 24 days the long line was removed and Joseph moved on to expressed breast milk via nasogastric tube. After a couple of weeks I was approached by a nurse, stating that due to Joseph's poor growth, his milk would be fortified. I burst into tears. It hadn't been explained adequately, I felt they were adding "poison" to my milk. I felt it was a criticism of me personally. Our unit didn't have many very low birthweight babies, so didn't have fact sheets, or the training to explain to me the rationale, and indeed what this stuff actually is.

The nurse kept saying "its just extra calories", but I wanted to know where those extra calories came from, and no one could tell me.

So just what is breast milk fortifier and why is it used? Breast milk fortifiers are also known as HMF or human milk fortifier. But you must be aware, they are not, for the main part, made from human milk. They are usually made from cow's milk. They contain additional proteins, electrolytes and calories, and are added to human milk to increase its strength. A company in the US does make a human derived version but it is astronomically expensive.

Growth isn't just weight + length. Often we forget that when we talk about preemie growth we're talking about internal organs, the brain, they body systems. If there are not sufficient calories then this internal growth can suffer, and the baby can have very severe problems.

It has been proven again and again that breastmilk is best for premature babies, however it has also been proven that in some circumstances, it is not sufficient on its own and a little help is required, through the use of fortification. In our PCT and I think throughout the UK, it is common practice to stop fortification before discharge, although in some circumstances I am sure it continues.

I do think that it should be a choice, and it should be explained, particularly if you have a family history of lactose or dairy intolerance, all avenues should be explored. I do also think that it is not necessary in all cases, however on our NICU I know it was carefully assessed and during our stay Joseph was the only baby who had fortified milk.


Bliss information on fortifiers



Tuesday, 6 December 2011

My Best Posts

This week the Britmums blog prompt is What Are Your Best Posts This Year?

I have to say, blog wise, I've had a stonking year. Although in blog world I may not get the views and publicity that others get, in my own little way I've made a big impact in ways that matter this year. I have beautifully loyal readers who comment, and support me in many ways.

Here are my top 5 posts.

Being Mum to a Premature Baby - This post was written hastily one afternoon, after reading a few things on Facebook. I paused for a minute about how things are different for us that have had early babies and been with them on NICU. This post has received more shares, and feedback than any of my others, and I'm really proud of it.

Raising an Only Child - I've really struggled this year with the decision not to have any more children. This decision was made very early on, when Joseph was still in hospital, with my husband having a vasectomy when Joseph was six months old. Absolutely the right decision for us, but one that I had never had time to come to terms with. This post is regularly found by people searching on Google, and I am so pleased that I've written about this, and hopefully, helped others.

Reasons not to Have Another Baby - It never ceases to amaze me that my miserable posts get the most interaction! This post was another one during my struggles, and was very well received, and I know it helped others too. I am really pleased that I have taken the step to blog about the harder side of my life this year, and I know its helped me. Sometimes I come across as so happy and positive, which I am, but sometimes to my own detriment. Sometimes I need to reach out and ask for help.

From RAGS to Riches - Following some of the other posts where I was struggling, I decided to go and see the GP to ask for counselling, she was awful, and I came home feeling so angry, and resentful. I have since discovered that she wrote on her notes "has asked for counselling, lists too full, will review in three weeks". And she never ever did. So the referral wasn't made. Fortunately I have all of you to look after me and be my therapist!


Having a Premature Baby - It's Not All Bad - This was  a lighthearted post with a lot of contributors, it's one that is still read often, and shared, unfortunately all the feedback and shares were on my personal facebook page not on here!

I hope you've enjoyed this recap, I look forward to doing a further round up of a year at Not Even A Bag of Sugar later in the month.

Monday, 5 December 2011

Enough. Enough is Enough

One of my Facebook friends shared this incredibly powerful video.

Watch it first, please.

Watching this I had tears streaming down my face. I am Jonah. Ok I am not gay, or a teenage boy, but it started when I was 6, my teachers called it teasing.

My nickname? "Spaz" Because I was sent to a special school because I couldn't catch a ball or run like the other kids. It was only for a day a week, but it was enough. I was singled out. I only went for a year. But the damage was done. I was marked.

It was more than name calling. It was physical, I was hit, I was punched. I was ostracised. My school bag was bombed with paint, my lunch was stolen more times than I care to remember. I was left out of games, out of school activities. 

I became bookish. Surely a "spaz" is stupid, so I set about learning, and trying to be the best I could be. That made it worse.

Kids introduced me to new kids as spaz. And you know what, in grade eight it got a whole lot worse.

Boys start being driven by hormones, the bullying took a sexual edge, I was completely ill equipped to deal with it. I retreated further into myself. I was scared.

By the time I got to the end of grade ten, I'd had enough. I was up to the back teeth of being scared, or being intimidated. I found my voice. I found my humour. I stood up to them. I won.

I have concluded that the main reasons I was bullied was because I was small, not just in stature but in personality. I didn't "need" them, I had my close friends, and I had my books, and my inner resources I didn't need those people in my life.

And looking back now, I am grateful for that experience, as it built my character and shaped me.

However, I am one of the lucky ones. I survived. I thrived. Bullying is a horrendous experience. Looking at Jonah I don't think its entirely about his sexual orientation. He is bright, he is resourceful, therefore he is a target.

Bullying now scares me more than ever. At least when I was a teenager I could go home, shut the door and I was in my sanctuary. Now its not like that, bullying can break through into our sanctuary via phones and the internet.

And it has to stop.

Enough is enough.

Sunday, 4 December 2011

I Want A Hippopotamus for Christmas

I missed the blog prompt last week on Britmums, so thought I would do it today for your viewing pleasure. The prompt is "All I Want For Christmas..."

I posted earlier this week about being a bit bah humbug this year. To be honest financially we are still very tight, my work has gone quiet for Christmas, so we are being frugal, which is fine by me. Joseph has plenty to open this year, and that's my main concern. We are not giving gifts to each other this year.

My favourite Christmas song is the title of my post. I love this whimsical song, and it always makes me smile.

So if you happen to see one in your travels, send a hippo my way!

However in all seriousness here are my Christmas wishes.

1. Restraint to eat sensibly and keep up with the exercise. We will be in Germany for Christmas this year, where restrained eating is not easy at the best of times, and with my in laws, who are always generous with the food, and the drink!

2. A great pair of running shoes and some decent tracksuit bottoms.

3. A Richmond Tigers t-shirt, and Dear Santa, if you can help Richmond in the pre-season that would be ace!

4. A return ticket for 3 to Australia.

5. A kiss and a cuddle from my 2 favourite men!

6. And a serious one, for all the mums, dads, grandparents and siblings with babies in special care this Christmas to have a blessed, and calm day with their beautiful babies. 

What do you want down your chimney this year?

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Saturday, 3 December 2011

My Ten Parenting Rules*

1. Do not overthink children's television. Your toddler does not care than Makka Pakka only comes up to Upsy Daisy's knee, that the Ninky Nonk and Pinky Ponk appear to have no driver or pilot, that the Tomliboos door is far too small for the house, so why should you? No good can come of rationalising In The Night Garden.

2. There is a time for chocolate buttons. Whilst I am not advocating bribing toddlers with chocolate on a regular basis, to get one to sit still long enough for a haircut, or to encourage the taking of medicine, sometimes a mama gotta do what a mama gotta do.

3. There is a time for children's television. It's carefully designed, it's on all day, and on a wet, miserable day, there's only so much play dough and drawing a child can do.

4. Indoor play areas are a necessary evil in Britian. Don't go looking for dirt, or worry about the food choices, lighen up!

5. Think really hard before you criticise another parent, who is just doing the best they can.

6. Toddlerhood is incredibly traumatic, that's why people are so judgemental in supermarkets - they have completely forgotten that they once own a toddler terrorist too, Post Toddler Amnesia. They fantasise that "back in their day" their daughters wore crinoline frocks, their sons wore sailor suits, and they were perfectly behaved treasures. They are wrong. Don't take it on board.

7. Nothing is as difficult as you may imagine, I've done long plane trips and train trips, and the thought is always worse than the reality.

8. You can fight the food fads or you can just accept that the only fish you will be getting inside your toddler is in the shape of a finger. And that's ok.

9. A child cannot be ruined by too many cuddles, kisses or stories, its a lack of these things that ruin a child.

10. It's ok to ask for help, to have time out, to admit that sometimes you are not coping. Support is there, sometimes from the unlikeliest of sources.

Friday, 2 December 2011

Health Visitors and My Premature Baby - Might Be a Rant

When Joseph was just a week old a little slip appeared through our letter box, announcing that our Health Visitor would be coming to see myself and Joseph at home the following week. I frowned in confusion. He wouldn't be home. Oh well, I thought, perhaps they mean just me. I thought about it some more and a couple of days before the visit rang to let them know that Joseph was born 13 weeks early and certainly would not be home at 2 weeks old. There was no answer, just a machine so I left a message.

I got a phone call about 30 minutes before the alotted visit, the Health Visitor wanted to know whether she should still visit. "Um yes! I have missed my hospital visit with Joseph to see you". The first thing she said when she arrived was "I know nothing about very early babies", so I asked for someone else, she said no one had much experience at all and I may as well stick with her.

Well, at least I wasn't disappointed. Once Joseph was finally discharged we had another visit, and then that was it. My only input was when I took Joseph to weigh ins. Like most mothers, I had times where I left weigh ins in tears. "What are you doing wrong? Why has Joseph only gained this much and not that much?" etc etc. I learnt to be thick skinned, and to make sure I went at a time when I could have a good moan with other mums afterwards.

Then, at 6 months actual we were asked to take Joseph for his 6 month development check. I rang and asked for it at 6 months corrected. They argued "oh we don't see much difference with premature babies" they said. "I'm sorry Joseph was 13 weeks early, he's going to fail if you do it now", I managed to win that one, he still failed at 9 months old, for not being able to sit.

With weaning, my Health Visitor had no idea, she wanted me to wait til 6 months corrected even though the expert literature advises weaning on actual not corrected age. It was just so confusing. I am actually still waiting for her to visit, she was going to come and help me with weaning and give me advice and support. I guess that ship has sailed!

And now, 2 and a half years on, it's happened again. I requested a 2 year development check, which is pretty standard, they are so busy they didn't do it until 2 and a half, just a few weeks ago. Again, he has failed, this time for walking, the Health Visitor was disappointed with his walking, his gait is not what she would expect in a 2 and a half year old. She said he needed appliances, exercises and basically implied I had been neglectful by not pusing harder earlier.

I just feel like banging my head in frustration. Joseph is not a normal 2 and a half year old. Well, he is a normal 2 and a half year old, he loves the Octonauts, Thomas the Tank Engine and dinosaurs. He loves to eat gingerbread and chicken nuggets and chips and couldn't give a hoot about vegetables. He throws tantrums, the next minute he hugs and kisses you, so yes he is a normal run of the mill toddler.

But Joseph was born at 27 weeks. He will have some delay, it's no surprise to me, and I don't think it should be to a Health Visitor. To put her mind at rest, I agreed to take Joseph for a follow up at orthotics yesterday.

And guess what, Joseph walks funny as he has only been walking 6 months, no action required.

Sigh.

I just feel disappointed. When Joseph came home I was terrified, I had no idea what I was doing, and was looking forward to the input of the Health Visitors, and have been very disappointed. The team want me to go fortnightly for weigh ins so that they can keep an eye on us, and really, I wonder whether I should just be non compliant and see what happens.

I'd love to hear your stories, especially positive ones!

Thursday, 1 December 2011

Christmas is Coming......Bah humbug

I have a giant fit of the scrooges this year! We are travelling to Germany for Christmas so we're not decorating the house, my mother in law is cooking the cakes and puddings so no smells of dried fruit and spices are permeating the house. We're only buying for Joseph, and his presents are bought. Money is tight again this year, I've been clever with Tesco points and nearly new sales to try and maximise our funds.

I've been royally told off for getting song words wrong, by my increasingly stroppy 2 year old. It's not "twinkle twinkle little star" anymore, its "twinkle twinkle Christmas star". Can't believe nursery have changed to Christmas versions of everything already. Not even "5 little monkeys" is safe. Nope, its 5 little snowmen jumping on the sled. Just wrong. The decorations are up and Joseph is excited already. he just can't wait for "Farmer Christmas" to come, on his tractor maybe?

I dunno if its just ageing, but it all seems so.....crass. I'm not a card carrying Evangelical Christian, but where is Jesus in all this? It appears to me that he's disappeared in a see of cynical advertising, tinsel and pressure.

Our first Christmas I felt immense pressure. I was a new mum, I was still poorly with PTSD, I was over anxious about bugs, about Joseph being overhandled, it was all too much. My husband's family hadn't seen Joseph since he was little, all the extended family were there, it was just too much to bear, and all the "dressings" of Christmas were a welcome distraction. Last year we had a lovely, intimate Christmas with good friends, which was just lovely.

I am sure I will get into the spirit of it, and I think the top and bottom of it is, I am a bit homesick. We've been spoiled, every year since Joseph has been born I've been able to get home shortly after Christmas, and it won't happen for a long time now, unless something amazing happens.

Please, help me find soe Christmas spirit!

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.