Thursday 30 June 2011

Pregnancy - Dealing with the NHS

So my last post was about my Toxic Pregnancy and was inspired by Karin at Cafe Bebe and the problems she is currently experiencing. I want to run through a few points might help others in similar situations.

I'm not a nurse or a doctor, but I have worked in advocacy and in allied health roles on and off for 20 years. 

Trust your instincts - I strongly believe that with all health matters, you should follow your instincts. If you think something isn't right, act on it. To be perfectly honest at 26+6 when I got my husband to drive me to delivery at 3am, I though I was being a complete idiot and that I was so worried  about the potential for pre eclampsia, I had created this headache in my mind. But I wanted to be certain. I am so glad I trusted that instinct to get checked out, and my baby was born the following day. If I'd waited longer, we both could have died, and that's fact, and was told to me by my final consultant who delivered Joseph.

Be resourceful, but try not to Google - with medical matters I don't believe Google is always your friend. If you do have to Google, try and stick to reputable health websites. Patient UK is endorsed by the NHS, and Bupa have a fantastic free to use website on medical matters that is well researched and reliable. Tommy's the baby charity have endless resouces and a free midwife service.

Keep notes - I would suggest having a piece of paper inside your pregnancy notes (which stay with you until delivery) to make a note of any symptoms your concerned about, and reflections on your appointments, and anything your concerned about. We all know how it is, you get to your appointment, you do a wee in a cup, have a listen to the baby's heartbeat, leave and think "oh you know I forgot to ask about my swollen ankles etc". If you have it written down, your less lightly to forget.

Don't delay in raising a complaint - I hate the word complaint and much prefer concern. I have heard so many people say "when this is over (pregnancy or NICU stay) we'll make a complaint". I think this is misguided, because although its good, for learning and correction, in terms of your own care, its important that action is taken when things start going wrong, because everyone still has a chance to pull things back.

Utilise PALS - As far as I am aware PALS is only in England, if you are in one of the countries in the UK you will have a different process. PALS usually have two arms, one is based in the hospital, and also one to cover community. Midwives usually fall under the hospital even if they are working in the community, so I would start with you local hospital and they can direct you accordingly.

By contacting PALS you are not necessarily making a complaint. In my case I rang and said "I'm not sure if I am right or wrong to feel upset can I run this past you" they then gave me a range of options. PALS are great because they often know the consultants personally and can take action without having to go down formal channels. You won't get a "bad name" or poorer service as a result. Medicine is based on informed opinion and sometimes opinions are incorrect. Also the NHS is a learning environment and sometimes people get things wrong. That's why PALS are there, use them.

Keep your GP in the loop - A suprising number of GPs are very well trained in managing pregnancy. My own GP was an obstetrician and gynaecologist as well as a GP though he doesn't practice in this. He was a lot more available than my midwife, and would link in with her and the hospital as appropriate. It was great to have him on board. As it turns out, he is the father of three premature babies, and I am not sure what I would have done without him!

I'm very grateful that I'd had experience challenging doctors and consultants, and in advocacy. Being an advocate for someone else is much easier than being an advocate for oneself, however. But, I am glad I am an empowered patient, and a pain in the behind. I strongly believe it saved my life and that of my baby.

My Toxic Pregnancy - and How I Survived It

I was reading well watching this post by the very lovely Karin at Cafe Bebe. And was moved by her obvious distress at how she is being managed, or otherwise, in her pregnancy. I have contacted her and offered some of my "wisdom" following my bitter experience.

Just to explain, in our area your pregnancy is managed by a community midwife based in your GP surgery.  Then you go to hospital for your 12 week and 20 week scan. Some lucky people, like me, have to have "shared care" where you are consultant led, but you still see the community midwife for regular appointments.

I kind of fell pregnant by accident. Sort of. I had previously been on depo provera shots, but had gained a lot  of weight and was having problems with maintaining a healthy blood pressure. I decided to stop the injections aobut six months before our wedding in September 2008. We decided that we would just go with the flow, and not prevent pregnancy but not actively try either. To our joint astonishment, we found out we were pregnant in the November.

Now throughout my pregnancy I felt "wrong". I had been pregnant twice before, but sadly miscarried, this was my first pregnancy that had gone longer than 8 weeks. With every passing week, it felt more "wrong". At every appointment my blood pressure was a little higher. By 16 weeks I was incredibly concerned, because I started feeling awful. Not just "morning sickness" but crushingly tired, and just generally "not myself", little things really rattled me, I felt highly anxious and worried all the time.

At the end of my 15th week of pregnancy I was signed off with complications of pregnancy. My GP thought I might have ante natal depression. It was suggested I take antidepressants, but I didn't feel that was appropriate, and I felt my baby was at risk as it was with my blood pressure and didn't want to add to the problem by taking medication for depression. I also didn't feel clinically anxious. I felt like something was wrong.

I saw my midwife just into my 18th week and she referred me to the hospital, although I had been marked for consultant led care due to my high BMI I had never seen one. So I toddled off to see the consultant at 18 weeks.

What followed still upsets and shocks me. I was seen by a very junior doctor, not a consultant. He was nasty. He told me I was incredibly fat and irresponsible (now I am fat, I'll admit it, but I was/am a size 20-22 and had not gained a gramme in pregnancy) and that I would get gestational diabetes and have a 12lb baby. He told me I was ridiculous to be worried about pre eclampsia, it was clear I had essential hypertension (which I had never been diagnosed with). He refused to listen to the heartbeat or refer me for scan on the grounds that I was so fat he wouldn't be able to hear me, and the sonographer would be unable to perform a scan.

Um, I'd had no problems at my 12 week scan, and the trainee midwife had heard the heartbeat at my appointment the previous day. He went on to book me for a diabetes test at 28 weeks (I was horrified to hear that I'd have to buy my own Lucozade!!!) He left me by saying that I was to avoid all stress, but not to avoid work (um I worked in a call centre managing complex spinal surgeries, in patient admissions and ITU stays as well as complex chemo requests) and to basically stop wasting everyone's time.

So I did what anyone would do. I howled all the way home. I was so upset. I felt like a child being told off. Once the tears died down, I got mad. I rang my hospital's PALS (Patient Advisory Liaison Service) and made a complaint. The kind lady was absolutely horrified at my treatment and promised that something would be done. I rang my community midwife and went to see her the next week.

My community midwife was also horrified as was my GP, they both felt I needed regular monitoring from the consultant team at the hospital, which is standard practice for expectant mothers with high blood pressure. So the midwife rang the chief midwife, who must have, by that time, heard about my complaint and arranged me to see the "head honcho" the following day.

It was a Friday, the beginning of my 19th week of pregnancy. The consultant was lovely, and in complete contrast, reassured me, but looked at me and shook her head. She said "you might be at risk of pre eclampsia and I want to monitor you closely" I could have kissed her. I was booked for an anaesthetic review and growth scan the same day as my diabetes check, at 28 weeks pregnant.

At 24 weeks I went again, but the consultant wasn't available, but I saw a different junior doctor this time, who was just adorable. She checked everything carefully, put me on medication, and then explained to me exactly what to look for in terms of pre eclampsia. She was just amazingly kind, but also thorough.

From that point on, my monitoring became daily. I had to attend either the walk in centre or midwife every day for blood pressure checks. My last check was on the 6th May. I missed my appointment on the 7th May, I still feel guilty as I had forgotten to call the surgery, I was in hospital by this time. On the 8th May my baby had been delivered.

I felt so sorry for my community midwife. She'd popped into the hospital on the Friday just to go through all her notes and cases and saw "Mrs Hodges......delivered" she nearly fainted, on the Wednesday morning I was ok, by the Thursday I was critically ill. That's how quick pre eclampsia is. One minute your pregnant, the next minute your not.

I am very grateful to the NHS, when it mattered, they were brilliant, but it could have been so very different had I not queried that first doctor and in my next post I want to explain more about what do when things go wrong.

Wednesday 29 June 2011

Food and Your Hospital Bag

Yesterday, when asking on Facebook and Twitter for suggestions for inclusions into a hospital bag for delivering a baby, most people said "food". In hospital food is, suprisingly, hard to come by. If you need food outside mealtimes, you need to bring it in yourself, or drag yourself down to the cafeteria, which in our case, is not in the main hospital building.

For centres of wellness, hospital cafeterias are suprisingly dire. We could get some good stuff in ours, but a small tub of fruit salad, containing mainly bits of cut up orange, was over £2! No wonder people would buy crisps, a chocolate bar and a coke, that cost the same amount!.

I was in hospital for eight days and could not have survived without the care packages my husband brought in. One quiet night one of the midwives came to chat about expressing and said I needed to eat much more nutritious food than they could provide, I opened my drawer and showed her my stash of nuts, dried fruit and good quality chocolate, she was impressed.

I can't really advise on good snacks for labour, on my facebook discussion opinions were mixed between labour making them feel ravenous, and labour making them feel sick and everything in between. Your birth partner will probably need snacks, and you will certainly need them in the mist of days ahead, whether your baby is term or premature, by your side, or in NICU.

  • Cereal bars. My bars of choice are Geo. I don't really like the crumbly ones, but there are loads of different ones out there, with varying degrees of nutritional value. 
  • Flapjack. I have tried, on several occasions, to make this, and I can't make one as good as what you can buy commercially. They are not cheap to buy, but one flapjack is very filling, and although high in fat and sugar, oats are great for breastfeeding mums, and they are a slow release energy food.
  • Chocolate. When Joseph was in hospital one of the neonatologists (specialist paediatricians) gave me a very informative talk about what to eat when breastfeeding. He recommended I aim for around 3 000 calories a day, 2000 - 2500 from healthy food then make up the difference with chocolate, just whilst Joseph was pre term. He said it enriches the milk, and who am I to argue. I tried to eat the good stuff 70% cocoa solids like Green & Blacks, but at times a Snickers bar or Mars bar just had to do.
  •  Baby yoghurt. I didnt know of this until weaning, but this is a great product to have in your bag. Baby yoghurt is often mixed with cereal, its in jars ready to eat, and because its in a jar it does not require refrigeration, it's in the baby aisle.
  • Dried fruit. My preferred dried fruit are apricots, but I always try and buy the ones that are a spooky brown colour, the very orange ones are preserved in sulphur which I am sensitive to. I also like apples, raisins, dates and prunes. On this topic of dried fruit, a lot of women find themselves constipated after having a baby, and indeed after surgery, in the case of caesarean sections.
  • Fresh fruit. It may be a cliche but baskets of grapes and other fruit are a lovely gift and very practical! My husband used to bring in pre prepared fruit as well as whole fruit. It's a good energy boost and some fruits give slow release energy, others give a quick boost, like bananas and grapes.
  • Nuts. I love nuts and they are a great source of slow release energy, and a good source of minerals and vitamins that may be lacking in hospital food. I especially like brazil nuts and macademia nuts. 
  • Biscuits. Maybe not the greatest of choices, but biscuits are great if you have visitors, or need a quick snack. And lets face it, the NHS selection could do with some supplementation! If someone can bring in homemade shortbread or ANZAs then all the better!
  • Cereal. A lot of us can eat this dry, or if you have some UHT milk in your hospital drawer and a little bowl, this makes a good snack, particularly if your expressing during the night, or up at strange hours feeling a bit disoriented.
  • Sandwiches. If you have some notice of impending labour, I think making a "cut lunch" for both you and your birthing partner is a good idea. Or better still, get them to do it. If you don't have a cooler box, I'd suggest making peanut butter, honey or vegemite (marmite if you must) rather than something that requires refrigeration.
  • Rice cakes. I love rice cakes and you can get all different flavours. Some of the ones in the baby aisle are great, there's a tomato flavoured one, I think its Organix, that is salt free and really delicious. Rice cakes are also a slower energy release food and a good source of carbohydrates.
I hope you find this list helpful, it's not exhaustive and if you have any ideas of things that are great, I can edit this list and add them.

In the coming days I'll do a guide to meals that are easy when you are discharged and your baby is still in hospital, or you have come home with your baby and are busy!

Tuesday 28 June 2011

Hospital Bag for Childbirth

I'm a member of a few parenting forums and this question is often asked. Instincitvely I had a very strong feeling that I wasn't going to get to my Expected Due Date of the 7th August. What I thought would happen is that I would be admitted during my pregnancy for monitoring, and I commenced packing my hospital bag at 24 weeks. Spooky!

I know people get superstitious about these things but I truly think its a good idea to pack a "desert island" bag at 24 weeks, and then add to it as you progress in your pregnancy. Afterall you are going to need this stuff eventually aren't you?

I've asked this question on Twitter and Facebook and some of the answers have come from experienced mums. What has been a recurring theme is food! Packing food for labour and in the recover period and I think this is worthy of a seperate post.

These are ideas of inclusions, you may or may not find you need all these things, but these are suggestions that have come from a number of women (no men, sadly)

To pack for mum, you can do this from 24 weeks ish
I wouldn't necessarily pack this all at once, but keep a little list on the top of the bag and write down an item as it goes in, so you know what you've packed, and also so your birth partner knows what is in there. No point digging for the toothpaste if its not there! 
  • Anything you normally require to exist happily and safely - for example for me its Ventolin, for others it might be contact lense solution or a specific prescription item. The last thing you want to be doing is running around panicking about essential items.
  • Moisturiser, lip balm and hand cream - you can get sample sizes of these just to pop into your bag. Hospitals are very drying, and especially if you have a NICU stay in front of you, your hands will thank you for packing hand cream. I'd even go as far as to say an alcohol free sanitising hand gel is a good idea. The hospital ones are extremely harsh, I don't have very sensitive skin and my hands were a mess. If you've had cannulas in the alcohol based ones will bring a tear to your eye.
  • Big knickers - it could be the paper knickers (I couldn't find any big enough) for me I went and got the cheapest Evans knickers I could find 2 sizes bigger than I normally wear and I bought these at 24 weeks. They were invaluable and the best thing I purchased. They sat over my section scar and just made me feel more comfortable.
  • Toileteries - Becky on my Facebook page made a fabulous suggestion about buying a shower gel on a hook! Bending over either pregnant, newly delivered or following a section is hard. Toothpaste and toothbrush is essential to pack early.
  • Comfy pyjamas with a top suitable for breastfeeding. I didn't buy maternity pyjamas. Marks and Spencer sell the most wonderful black pyjama pants. They are stretchy jersey and accommodate your changing shape, but are ok when your not pregnant. I got a couple of tops there to match. I bought these at 24 weeks and popped them in my bag. I wore them after Joseph was born, and I could get away with them as trousers down on the unit!
  • If your a couple, a photo of the two of you, or a photo of yourself if your a single mum. I strongly believe that having a photo in an incubator is a wonderful thing, it makes you feel a bit like you are watching over your baby, and it also ensures everyone knows who you are. I packed one in my hospital bag and I am very glad I did.
  • A little cuddly toy. I wouldn't pack anything baby specific at 24 weeks, unless you really want to, but a toy, just in case of early arrival, is nice. We had a stripey zebra that stayed with Joseph through out his stay.
  • Paper and pen. You might want to keep a diary, but as a bare minimum a little spiral notebook is fabulous. You may want to take notes of pertinent points you are being told, you might want to make notes of questions to ask or concerns you have, or just to keep a record.
  • Maternity pads and breast pads - I didn't have these packed, and I wish I had. I was going to wait til a bit later on, but they're something your going to need at some point, so why not? Boots, Mothercare and supermarkets stock these and they are handy to have. You can also get washable breast pads, which is what I would have bought.
  • Something to read, or play, or listen to. I packed my iPod, some books, and my DSLite, but I thought I was getting six weeks bed rest. Sigh. 
  • One decent post birth outfit. I believe its a good idea to pack something respectable, in a maternity or a bit larger than your pre birth size. If your baby goes into NICU you might have to speak to doctors and other staff, and its a lot nicer for you if your not doing it in your pyjamas, and gives you a bit more credibility. It's not essential, but I'm glad I had something respectable packed.
  • Socks and or slippers. Wards can be quite chilly at night.
  • A decent cardigan that can double as a dressing gown.
  • Bra - I wouldn't suggest you go and buy an expensive nursing bra, but a friend on twitter suggested a sports crop top which is a great idea. They stretch to accommodate growing breasticles, and are comfortable.
  • Camera, memory cards and batteries - I'd keep this handy not necessarilly packed. We used our camera right from the beginning and I'm not normally a camera person!
To pack later, say from 34 weeks  
  • Baby clothes - there's a couple of ways of doing this. Personally if I had the resources I would buy a packet of vests and 3 sleepsuits/babygros in early, tiny, newborn and 0-3 size. If you don't need the small ones, they can be sold on eBay or donated to your local Special Care Baby Unit. If you don't have the right size it isn't the end of the world, as you can make do, but I think its less stress inducing if you have your bases covered. For very early babies the unit will be able to provide you essentials in the early days. 
  • Nappies - similarly I would buy a packet of micro, and then some newborn nappies. There are variations in the sizes of nappies, but the Pampers micro are, to my knowledge, the smallest commercially available nappies. Pampers do make a special teeny size that are only available to units. In our unit, once mother was an outpatient, we were required to bring our own in, once the baby was out of the specialist ones, and for some mothers, that meant immediately.
  • Snacks - I am going to do a seperate post on food, but I would pack these now rather than earlier. 
  • My good friend Jax recommends a large jar of vaseline, socks make a poor weapon to throw at annoying medical staff! (a tongue in cheek suggestion I hope!)
  • Nursing bra - Getting fitted is recommended in late pregnancy, I really loved the Bravado range and recommend them to everyone. What I liked about these is that they are stretchy but supportive so if your size changes a bit, these will accomodate you. They also make a crop top which is fabulous for kangaroo care.
 I hope this list has proven helpful, and please let me know if there is anything I have missed

Monday 27 June 2011

Joseph's dad - fathering a premature baby

My husband is a brilliant dad. MOTH (man of the house) loves kids, although until Joseph came into our lives wasn't all that sure about how they worked. His knowledge of pregnancy and childbirth is far greater than mine, or certainly was in the early days. He knew I was pregnant before I did. He knew far more about pregnancy symptoms that I did. He did panic at times, particularly when my morning sickness was at its worse, that our child was going to come out resembling a cornflake. Which, maybe he did, at 1lb 7oz when he got jaundice, he did sort of look like a very large cornflake. But I'm sure that wasn't my fault.

When Joseph was born, I couldn't be there. Joseph was lifted out the sunroof and taken to special care. My husband saw Joseph in theatre, he went to see him in NICU as soon as he was able. He took a photo so I could see my baby. MOTH differed from me. I saw a baby who was poorly, with potential complications, who might have long term disabilities. MOTH saw things coompletely differently to me. He called Joseph either Magic Boy, or Action Man, he only ever saw him as being a bit small. He refused to listen to anything the doctors said, or indeed I said, to him, his little boy was perfect and would be fine.

In the early days, I would visit Joseph in hospital in the morning, and Corey would go in the evening. He knew a lot of the nurses personally, as his mother had trained to be a neo natal midwife in that unit a long time ago. Often Corey would get what I called "free cuddles" a nurse would be on who knew him well and would sneak Joseph out for a snuggle! 

At times my husband's attitude infuriated me.  It made me so angry that all he could see was a perfect but very small baby, and he couldn't support me in discussions with doctors and nurses, and has never been with me to follow up appointments. I remember one day being so upset as Joseph had had to have screening for ROP (retinopathy of prematurity) and my husband said on the phone "I don't want to know, none of them are any good those doctors, they're looking at bones, looking at bones, Joseph is fine". I slammed the phone down, or would have done. With all these fancy phones why hasn't someone invented the "slam" button.

But looking at it now, MOTH was the perfect balance to me. Yes, I was always positive, but I was realistic, but having someone who was, in effect, Joseph's cheerleader and believed in him 100%, was wonderful.

Joseph has always adored his dad. He sits by the window watching him leave in the morning, and sits by the window waiting for him to come back at night. All day I get "daddy gone" and "daddy soon". And its MOTH who perhaps understands Joseph best. MOTH lets me get on with my parenting, however at time he seems to instinctively know what to do. For example, he seemed to know when Joseph was ready for stories to be introduced into his routine, he's known when to go to the doctor if I've been in a flap, and he knows when to just leave me to it.

Parenthood is still a journey for us, and like all parents we don't always get it right. We're often tired, and sometimes too busy to sit and talk and plan things out.

This weekend I went to London for Cybermummy and Joseph spent two days and nights with his dad. They had a ball, steam trains, parties, a lot of bad food. Joseph is completely exhausted.

And hasn't asked for his daddy once!  I think they tired each other out!

Sunday 26 June 2011

Surpised by Cybermummy

I have just attended what I hope to be a life changing, or at the very least, blog changing event! This was my first ever blogging event, and what a way to start. The event was held in the centre of London, in The Brewery. It had all the glitz and glamour of an awards night.

Initially, I didn’t think Cybermummy was for me. 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. I thought they courted businesses, and wrote sponsored posts. I had a very narrow minded view of what a “mummy blogger” is.

I was delighted to fine at Cybermummy that essentially we are all the same. We are the modern day story tellers, and blogs tell our stories. Sad stories, happy stories, sponsored stories, stories for fun, stories just because, stories to impart an important message. I am much happier with my new perspective – the blogger as modern day story teller.

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.

The day was divided into sections. We all sat together for the initial talks and then divide into groups to look at different issues around blogging, and I found this extremely hard, because so many of the talks were worthwhile, and I can’t split myself into three. I look forward to checking out the other talks on line.
My favourite talk included my favourite personal moment. The talk was about “blogger activism” and was extremely moving, speaking about UNICEF and Save the Children’s partnerships with bloggers. I was very brave and asked a question. My question was what about those bloggers who are wanting to form partnerships with charities, how do we go about it? I mentioned about Bliss and Tommy’s and a voice piped up “this lady is here from Tommy’s!” It was very funny! I did then go on to ask for a lottery win, watch this space....

It was great to get tips about marketing, about how to raise the profile of our blogs.  I did a very in depth workshop about how to migrate from Blogger to Wordpress, which made my head hurt. I listened intently to everything and made copious notes!

But what I’ve really taken away from Cybermummy are the stories. Stories from famous people, like Sarah Brown, the wife of the former Prime Minister, and stories from people who are considered ordinary, people like you, people like me. Stories that are funny, that are sad, that are moving beyond measure. I will never forget crying during one of these moving stories, and hugging another fellow blogger also in tears.
I have so much floating in my head, and things I want to achieve now, and partnerships to build. I can’t wait to go through my piles of business cards and forge new friendships, to reach out to charities, and to improve and continue my story telling. 

But first I just want to get home to my little boy, Joseph, who inspires me, and I've spent all weekend thinking and talking about!

Friday 24 June 2011

Cybermummy 2011 - it's tomorrow!!!

How weird is it when you have had something booked for six months, and suddenly, its just around the corner!!! I leave this afternoon on a lovely Virgin train and head to London, the Big Smoke, for 2 days.

Cybermummy is a blogging conference for parent bloggers. It's going to be quite an amazing event for me, as when I started this blog, I had no idea about "mummy blogging", or that there was a big community out there. I can't wait to meet some of the bloggers that I "visit" regularly. It's exciting.

I am hoping that rather than networking, although that's cool too, I will learn things at Cybermummy. I am not very technical, and not great at making things look good. I think I can write, but I don't think I'm particularly great at the whole blogging package, and this is what I want to learn about this weekend.

I've never really worked with brands, and this kind of intrigues me, although I am not sure where to go with this, so maybe Cybermummy will help me with this, even if its to reinforce the decision not to work with brands.

Personally its also a big step, because I am leaving my little man for two nights. My husband will do a stirling job I'm sure, and Joseph will enjoy having his company for the weekend, without mum around. But I will miss him dreadfully.

There's a lot of exciting changes coming up for us in the next few months, so it's great that this is the beginning, and hopefully a lot of the exciting things that are happening will be reflected here.

Watch this space!!!

Thursday 23 June 2011

Game Set Match

Yesterday I took my little man for a follow up consultation with his paediatrician. Since Joseph was discharged on the 21st July we have been back to the paediatricians 5 times for follow ups. Most have been uneventful, until the penultimate one when she started to discuss Joseph not walking.

So yesterday I was hopeful that we might be discharged. We are so very lucky. When we were leaving the unit the consultants and registrars made sure I was prepared for the stark reality of life with a premature baby. Regular admissions for cold, coughs and flu. Numerous follow ups for developmental problems. Potential treatments for disabilities as a result of prematurity. Having worked in the disability field for many years, I was ready.

I found adjusting to life outside the unit very difficult. One of the big problems was that life wasn't what I expected. Joseph got colds. He snuffled, he sneezed, he got better. That wasn't supposed to happen. He took ages to learn to do stuff, sitting, holding food etc. But he did it. He started talking by one. Actual. 9 months corrected. That wasn't supposed to happen.

Our follow up consultations were 6 months apart. That wasn't supposed to happen either. I felt unsupported and scared, alone. It took me a long time to get into my thick, concrete reinforced skull that, actually, against all odds, my form 27 weeker dinky dot was absolutely fine. I wasn't prepared at all for the fact that some very small, sick babies, manage to escape life long problems.

So yesterday it happened. "We won't bother you any more, we'll leave you alone". Discharged. Of course the consultant had a bit of a whinge about Joseph's odd walking style. I reassured her that both orthoptics and physio were fine with this, and that it would settle down, and if not I would ensure he is re referred to physio.

It does feel strange. This last consultation was held on the unit where he was born. This time last year my dinky dot was in HDU, he was still tube fed. He was still on CPAP. I was still travelling every day to see him, worrying every day about what might happen. Walking on the unit yesterday was very emotional. Through the doors I could see worried parents, incubators, and hear the scary monitors. I don't ever have to go on that unit now ever again. It's weird. I do feel, in a sense, that our safety net has disappeared. But all the consultant ever did anyway was undermine my confidence and make me feel panicked and worried all over again. 

The funniest thing was, she said yesterday that Joseph would never be a tennis player. He would have coordination problems as a result of his prematurity. I found it hilarious. No child of mine is going to be a nancy boy tennis player, its either cricket or Aussie Rules, or as a very reluctant compromise he can play Rugby League. (I am joking of course, my humour doesn't always come across on my blog!)

But part of me wants to sign him up to Greenmount Tennis Club this morning, just to prove her wrong. He's done a pretty good job so far of proving her wrong.

Wednesday 22 June 2011

To The Ends of the Earth

When the evening shadows and stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love

To Make You Feel My Love- Bob Dylan

The other day, Joseph and I went on a mission to visit a friend of mine and her little lad. Her little boy had broken his leg and was in hospital on bed rest. This hospital really isn't that far, in the grand scheme of things, about 14 miles. But it was a mission. We had to get to our bus station, about a 15 minute walk, catch two trams, and then a bus, which took another half an hour. With a fair wind behind us it took us just over an hour and a half. Each way.

When Joseph was in hospital, about six weeks old, another baby was admitted, also a 27 weeker, unfortunately she didn't do as well and had to be transferred to this very hospital that Joseph and I visited. It would have taken her at least two hours in peak hour, and cost about £7 a day. I often wondered how she coped, I never saw her again, and doing this journey really made me think.

Last night a documentary was shown on ITV1. Called Baby Hospital, it follows families whose babies are in a special care unit at the Liverpool Women's Hospital, only 30 miles or so from here. Unlike other documentaries I have seen, this is very gritty and doesn't sugar coat it. Last night's episode was about single parent families.

All over Twitter and Facebook there were comments about one particular mum. Only 21, her baby had been born at 28 weeks gestation, and she had two other children, aged 1 and 2 at home. Home was a temporary accomodation facility 14 miles from the hospital. When they showed the baby, the voiceover said the mother hadn't been in to see the baby for 15 days. She then attended when he needed surgery, but then didn't come again for at least another 8 days. The baby was then transferred to a hospital closer to home.

The mother appeared on camera from her home with the other two children, and explained that she hadn't bonded with the baby, her other two children needed her more, she had been poorly herself, and it was too difiicult to get to the hospital.

It was heart wrenching to see this baby, who had started noticing his surroundings more, just lying there, no one to cuddle him, to have kangaroo care, to provide breast milk, just lying and waiting. It broke my heart.

But I can see how it happens. I don't care what anyone says, or what anyone does to make it better, but Neonatal Units are horrible. Yes, they are essential, and the way they are set up is necessary, but they are not nice places to be. They can be scary, and confronting, and just plain uncomfortable. You can't take children in there, not all the time, usually there are only a couple of hours a day kids are allowed in, and its not a place for toddlers. I did feel for this mum, because it looked, from the outside, that her life was quite chaotic. I only managed to visit as much as I did because I was structured, organised, had people to help, and had money. I saw comments last night that people would have walked the 14 miles, with their toddlers, to see the baby. But would you really? If a baby is hospital for months and months, its very difficult when you have other children at home. In some countries, like the US, many mothers return to work when their babies are in NICU, as there are not the same maternity leave provisions as here.

The thing about special care baby units is that they are not full of middle class families with money in the bank, and nice ordered home lives. All sorts of families find themselves in these places, and I am glad the documentary hasn't edited those people out. It's important to show the different walks of life and outlooks of the mothers who find themselves there.

As much as it saddens me that this little boy was lying there with no one to love and care for him, I'm not sure I can judge this mum too harshly. I haven't been in her shoes. Who knows what trauma she has suffered in her 21 years, and what has brought her to have 3 children under 3 before she has had a chance to grow up herself. Who knows how alone she is, or what influences and troubles she has to deal with. Drugs maybe? Crushing debt? Certainly poverty and social isolation.

My baby was my first born, I had no other commitments at home. I had no one else sharing that heart space. I had nowhere else to be, but my baby's cot side, reading and singing, hoping and praying, and most of all, loving. As hard as it was, I could afford the bus fare, meals at hospital, tiny nappies and premature baby clothes, as much as it was hard to budget, and annoying to having to be paying for these things instead of buying nursery furniture and pretty things for him to grow up with, I could do it.

I had my husband, who loves me, and adores Joseph, and always stood by us and believed in us as a family.

I just hope, that as he grows up, this little baby has someone who will love him, and care for him, and go to the ends of the earth for him.

Thursday 16 June 2011

Insensitive Comments

Just a quick post tonight. This article appeared on my timeline today on Facebook from a number of sources. I found it heartening that this issue is being addressed in the mainstream media, that having a premature baby is tough, its full of unexpected twists and turns, and it can be a very isolating and frightening time. And then on top, you get the comments.

To be honest, most comments from well meaning relatives and family didn't bother me. A few were upsetting "when will they know how disabled he'll be" etc, were tough, but usually could be rectified with some straight talking giving the facts.

The hardest were the randoms. I don't know if Lancashire people are just more straight forward than most, but I had some awful comments, and they made me scared to leave the house when my PTSD (post traumatic stress disorder) was at its worst.

The worst was the supermarket. Joseph hated supermarkets because of the lights, I hated them because of the beeps and slidey doors and then randoms would come and ask intrusive questions. I didn't mind the ones that started with "isn't he beautiful" but the "what's wrong with him", "oh he's really small" and the worst "is he disabled" or my absolute number one please never say this to anyone comment "oh he could have died" were just horrendous.

A couple of times we went for family outings, just the three of us, and on a couple of occasions we joked about putting a hat on the floor to collect donations, we had that many people  stop and talk to us. And you know, a lot of it was lovely, it was really nice that people cared enough to stop and talk, but sometimes it became really intrusive.

And just how many 6ft 4 inch, rugby playing, pole vaulting, complex calculus solving, violin virtuoso former premature babies are out there anyway?

Tuesday 14 June 2011

Reasons Not to Have Another Baby

As most of you know, or maybe you don’t, I’m struggling at the moment. The world and his wife appears to be pregnant, and I really long to have another pregnancy again, as you can tell by this post. There’s a bit of a query that I might have depression....again. 

I’m not one to minimise feelings, but I felt I needed to write more about it, and explore it a bit further so here goes.
1.       I might die. It sounds dramatic doesn’t it? But even now, in the modern western world, women still die of pre eclampsia. It’s the second biggest killer of pregnant women. Chances are I would be so closely monitored and looked after that this wouldn’t happen, but the simple fact of the matter is, I could die. A family member died of pre eclampsia a few years ago, and left three children behind.

2.       The baby could die. I have had two miscarriages. Joseph was born in difficult circumstances, and nearly died on day 5. I could have another miscarriage, or I could have another premature baby who is not able to win the fight. I believe in counting blessings.

3.       Cost. I hate money, and even talking about it in the context of babies sounds crass, but it’s true. I no longer work so wouldn’t get maternity leave, and our already tight budget would find it a stretch and a cause of stress. I would have to find a job before I fell pregnant, which would mean Joseph in childcare. Which is not what I want to do.  And last time, I had to stop work at 16 weeks, which when you have given 5 years to a company with only a handful of sick days is one thing, but as a new employee it’s a totally different ball game.

4.       Travel. Having an only child makes travel so much easier. We have family all over the place, and a source of joy to us is to travel, see new places, and do new things. It’s great. With a baby this becomes hard, when you have a toddler as well. We have more freedom just having Joseph. And, there’s the money again, it is more affordable.

5.       High risk pregnancy. Pregnancy after pre eclampsia is not fun. One of the main reasons for not wanting another pregnancy (apart from points one and two) is that I want the sort of pregnancy I didn’t have last time. A long one, for a start, a pregnancy in two trimesters is not good. I want to be able to have birth choices, bump pictures, bump painting, and a happy run up to the birth. A problem pregnancy isn’t like that. I’d have to have continual monitoring, medication, scans, and probably another section, and, in the opinion of my consultant, another premature baby, she felt around 30 weeks or so. It’s not what I want. And I don’t think it’s right that I knowingly put another baby through that. That’s not to say I criticise anyone else for their decision to try again, every situation is different. Sometimes pre eclampsia is just a purely random thing, sometimes, it isn’t, and I have a lot of risk factors.

 6.       Night feeds. I loved night feeds. I really really miss them, that special time late at night/early in the morning, feeding my baby, albeit by bottle which was not part of the plan. But I really loved night feeds. When Joseph was in hospital I woke at night all the time, to express, and when he came home, I just loved the fact I was awake, he was with me, I loved it so much! However, one huge difference. I didn’t have a toddler. I slept when he slept, with the high anxiety from the Post Traumatic Stress Disorder I was virtually nocturnal anyway. With a toddler night feeds would not be fun. Well the feeds might be but the ramifications the next day, not so much.

7.       Family support. One of the biggest sources of sadness to us is parents, is our lack of extended family. Both Corey and myself grew up with cousins, aunties and grandparents, seeing them regularly. Joseph does not have this, he does have some darling elderly great aunts, but it isn’t the same. And I don’t think I could manage a new born and a toddler without family support. It’s hard enough as it is. I can’t see me moving back to Australia, and even if I did, this doesn’t really solve the problem, as half of our extended family is in Europe.

8.       Joseph can be my favourite. I’m sure it’s true that the love you have extends to the number of children you have, but I think Joseph would always be my favourite. The journey we have been on together is extra special, and I just think he’s fabulous.  Don’t get me wrong, he can have a tantrum as good as the next toddler, and he’s no angel, not all the time. But he’s my special angel!

9.   Another NICU stay. As mentioned previously my consultant feels I'd probably get to 30 weeks next time. That's another 6-10 week NICU stay, if things go smoothly. I could not see another baby go through what Joseph went through to be here. If you haven't had a premature baby, just think how you feel on days you take your baby for jabs, and imagine seeing that every single day, often multiple times a day. Its heartwrenching. I couldn't knowingly put another baby through that.

10.  Social cost. I'm a socialist, not fashionable, but I have a strong social conscience. Even a relatively short neonatal stay can cost as much as a car. Some neo natal stays can cost as much as a house, a very substantial one. We are so so fortunate in the UK that we never see a bill, but I know the cost, not only through research, but through my work in private health insurance. Whilst I do not judge others at all, not everyone is a throwback to 70s flower power socialism, personally I feel its something that I need to consider.

I think it helps having listed some of the reasons, and hopefully in the dark times that I think are ahead, I can look back on this and perhaps it will help.

I can only hope.

Monday 13 June 2011

Pay it Forward

Ghostwritermummy tagged me in Good Bloggers Pay it Forward, because we are both nominated, along with three other amazing bloggers in the Mad Awards If you haven't voted yet, please consider voting for me, or indeed any of the fab blogs in any of the categories.

I thought I would tag the five finalists for The Best Baby Blog. This award is very close to my heart because two of my special mummy friends are nominated. So here are my five bloggers tagged for this meme.

1. Leon at
2. Jennie at
3. Bloggomy at
4. Tom at
5. Molly at

Leon (well his mummy) has been a friend of mine for long time, and we've made the leap into "realdom". Jennie is a wonderful friend too, her twins were born at 27 weeks and we have lots of shared experiences, she's also made it possible for me to go to Cybermummy.

I wish all five of them well

Where There's Smoke....

I come from a family of smokers. My mum smoked, even in her pregnancy with me. She reports that her Obstetrician smoked during consultations regarding her pregnancy. He's dead now. Lung cancer. My father was a smoker right through my childhood and adolescence, giving up in his 70s. He now has emphysema. My sister was a smoker too. Me, I never fancied it. Being a severe asthmatic I figured my lungs had quite enough to deal with.

I have to say, I am kind of, a wee bit, understanding about smoking in pregnancy. Smoking is an addiction. Pregnancy is stressful. Yes, I think that as soon as you find out your are pregnant you should throw your cigs in the bin and not look back, but life isn't always quite as simple as that. And look at me, my mum smoked in pregnancy, I was term, and 7lb 6oz, didn't do me any harm. Am I asthmatic because mum smoked? Who knows. I don't have the statistics, but I know asthma rates are rising, and I assume smoking in pregnancy is either static or decreasing since the 70s.

However when Joseph was in special care, my understanding flew out the window. I have seen labouring women smoking outside the delivery suite, whilst in early labour. I have seen heavily pregnant women smoking straight after antenatal appointments. I have seen mums with babies on the unit smoking outside the unit doors. It made me angry, and it still does.

I wonder what the answer is? Recently I was watching "Misbehaving Mums to Be" on BBC3 and there was a mother who was smoking harder who said, and I paraphrase "smoking is good for my baby, because it makes its heart stronger". Surely this isn't a common view, surely this is an aberration and one person's misguided belief. Because if it isn't, then surely, theres a massive gap somewhere in education. Surely everyone knows, in the 21st century, that smoking is dangerous. Choosing to expose yourself to this is one thing, but your unborn is another matter.

What really needs addressing is smoking in hospitals. Our hospital where Joseph lived for 10 weeks was "smokefree" as are all hospitals in the UK, however it's not regulated. People smoke at our main entrance, to the delivery suite entrance, outside the cafeteria, everywhere. What is the point of haivng rules if no one cares enough to administer some sort of punishment?

Do we need to educate mother's further? Do we need to provide more support for expectant mums quitting? I'd love to know the answer to this.

Saturday 11 June 2011

Breast is Best

This is a rant. It's informed by my experience and some other mothers that I know, but it is, essentially, a rant. And actually its not about breast milk being better than formula, so don't worry if you formula fed your baby either out of choice or necessity, I'm not slating you at all, and in fact my own baby was predominately formula fed, apart from his first weeks of life.

In January I ran a "controversy week" and on my facebook page I asked for some topic suggestions, and one of them was the "lip service" paid by special care baby units to breast feeding. I didn't know where to start with this, so didn't run with it. But something happened last night that made my blood boil. And brought back a lot of painful memories. A friend of mine with a baby in a special care baby unit is not being supported in breast feeding her baby. Just like I wasn't either, nearly 2 years ago. It is a completely different hospital in another part of the country, but the practice seems the same.

I don't think anyone, no doctor or nurse or midwife, would debate that breast milk is best for premature babies. Usually from the outset you are asked to express for your baby, and are given a pump. This is confronting for many women, but it is essential to commence pumping quickly, to maximise the window of opportunity so that your body knows it has to do this, and also to ensure there is a supply of milk from early on. Expressing, as well as being pretty tough physically, is emotionally draining for many mothers of premature babies. You are told to look at pictures. Well, what if the picture of your baby is distressing, as mine was? He didn't look like a baby. He was covered in wires and machines. It hurt.

As time went on and I wanted to feed directly, that's where the opposition started, suprisingly (or perhaps not so) from Joseph's consultant. They claimed he was too frail and small (he was six weeks old by this point with no major problems apart from the usual prematurity issues). I perservered, and Joseph was getting the hang of it.

However, once in step down care, the "nursery" section of the ward, the attitude changed. It was bottle feeding all the way. I was prevented from demand feeding or even picking Joseph up except to change his nappy. I was actively encouraged to introduce bottles and formula. My milk supply rapidly dwindling (medication or stress I will never fully know) I caved.

After discharge, the neonatal outreach midwife (who was also a sister on the ward) asked me why I hadn't continued breastfeeding. When I ran through the above with her she was horrified. She had no idea that the practice of the staff in this bottom room was so different than her practice, and she said if I had only come to her and the nurse unit manager, they would have come up with a strategy, possibly lengthy rooming in, and they would have supported me. That made me feel even worse. They had both been on two weeks leave at the time this occurred.

Our unit had a really poor track record of breastfeeding. When I was battling the nurses about bottle introduction one of the consultants said "all our babies are mixed fed, its fine". I could have grabbed her by the throat and shaken her. None of them were "mixed fed" the ones who were scared lied about the breastfeeding. I only know two babies out of the twenty or so who came out fully breastfeeding their babies, and their babies were a lot later gestation than my baby, and their stays were shorter. Now whether the low numbers indicated a lack of will on behalf of the mothers, or lack of support, who knows, but surely with good support, women would be more keen to breastfeed.

I am of the opinion in that some areas of the country in some units, breastfeeding is seen as a pain in the neck, by some special care nurses and staff. It disrupts routine, its difficult to manage. And ultimately, and I know this is controversial, but it delays discharge. And I think really, this is at the heart of it. Far easier to get baby on a bottle, whether that be expressed breast milk (EBM) or formula, than on the breast. And I honestly feel that in some units they are under so much pressure to free up bed space, that they do not support mothers who want to breast feed their premature babies.

And this has got to change.

What no one tells you is that formula for premature babies is on prescription. Yep. It's free. We got free formula til Joseph was one. So that was around 9 months at £20 a tin and a tin lasted a week and a half. Do the maths. Governments are paying companies like Cow & Gate to provide formula for premature babies rather than paying for mothers and babies to stay together in units for a week or two to get breastfeeding established. And I am not sure this is right.

Wednesday 8 June 2011

Chitter Chatter

I really wanted to post about words. Joseph has got loads at the moment and more coming every day. I did suspect, like his crawling and walking that he'd be a bit behind, but Joseph has always been much closer to his actual age from the neck up.

In a previous life, I was a carer for adults and children with severe disabilities and during my time as a carer spent a lot of time with speech therapists, and helping kids and adults with their exercises. A lot of what I learnt has become an integral part of my parenting. I like to think some of what I did and continue to do with Joseph has helped his speech and wanted to share some of these things. I am no expert at all, and if you have any concerns about your child's speech, I would urge you to contact your GP, consultant or health visitor.

Singing - I'm not about to enter X-Factor any time soon, however I can sort of hold a tune, and I know a song (usually a bad country and western one) for any occasion. Singing is great for kids to learn pattern and rhythm, and repetition. Nursery rhymes are great especially ones with actions, and you will find that children can often do the actions before they can utter words. Joseph has been doing all the actions for "Wind the Bobbin Up" and "Twinkle Twinkle" since he was one. Later on a fun game is to leave a word out. Joseph started by saying "knee" for the end of "Wind the Bobbin Up" and then learning what his knees were. We play this game a lot and its amazing how many words he can say.

Commentary - I have always provided a gentle running commentary to our day, since Joseph was in NICU. Just a little briefing "today we are going to do this, and then this". I keep it short and simple. As patterns start developing you can ask little questions. "Ok we've had breakfast now what do we do?" I usually get the little reply "teeth!" It's a great way of acquiring language, words that pertain to every day life. Now Joseph actively says "teeth brush" he's a lot more willing to do the task.

Cooking and preparing food - food words are so helpful, especially if you have a reluctant eater. Joseph has been able to say apple and banana for a long time, and recently acquired blueberry. He learnt the sign for toast at about 1, and the word came much later. I tend to have him with me when I prepare breakfast and lunch (if not using anything hot!) and get him to say the words with me. Sometimes he does, sometimes he doesn't and I don't worry if he doesn't.

Book sharing - I think this is the key one. I don't think it always helps to introduce too much too soon. I made the mistake of trying to introduce complicated stories too early, and then went out and acquired a lot of board books. I think board books are best bought. You can get them out of the library but I always worry a bit that they'll be trashed. Also, the other thing about book sharing is that favourites and repetition are so important. Joseph can "read" his favourite "Where is The Green Sheep" almost from cover to cover. Of course he's not reading it, its memory. I would, however, like a pound, for every time I have read that book! When I read it I do actions and make sounds, this helps reinforce the words.

Even if you aren't a fantastic reader, you can share books just by looking at the pictures, and pointing things out, even making up your own story. Or use books that have pictures at all, or make your own with cut outs from magazines or stickers. Joseph likes looking at grown up books with pictures, and he spends quite a bit of time reading my recipe books, which is very cute! But I also get to pick out recipes, and he gets very excitied when what we have produced looks like the picture!

Signing - signing is controversial, and some parents feel that signing delays speech development. I disagree, and its well documented that gesturing occurs a long time before speech, and signing is just a form of gesturing. I do think it always needs to accompanied by the word, and needs to be repeated regularly. Joseph could sign "toast" long before he could say it. He also learnt the sign "thank you". He now, at two years old, says "thank you" rather than "ta", and I believe this is down to signing. I've never wanted him to acquire loads of signs, just enough to help him bridge that gap between understanding and speaking, and its worked well for us.

Word games and patterns - We play a lot of games. Toy cars are good for this. Ready....Steady and the Go is provided by Joseph. A couple of weeks ago we were walking up the stairs to bed, and counting them like we always do, but I only counted the odd numbers, Joseph provided the even ones. Pretty soon he was counting to ten. It's not real counting its sequencing, using the memory of how the words fit together, but its a start! I did have to restrain my husband from calling Mensa, he was quite certain Joseph was a genius!

TV - I do limit television, or try to, especially when the weather is good, but I am sure that television has helped his speech. Whilst waiting to go out today the signing programme "Something Special" was on, and Joseph was joining in with the words as Justin signed them. It was amazing to hear just how many animals he knew. Then when we got to the supermarket he was saying "elephant", I looked down and I had parked his pram near a magazine rack, and lo and behold there was an elephant! He also called a Golden Retriever that we spotted on the field on the way home a "kangaroo" so cleary we still have some work to do in animal recognition.

I think its really important to remember that all children have their strengths and weaknesses, and there is so much variance in term children with language acquisition, putting aside prematurity for the moment, and its important to let children develop at their own rates. I certainly wouldn't advocate sitting babies down with flashcards, or worrying too much about what little Johnny next door is saying. However, I do think there are things we can do, as parents, to help our children acquire and use language.

Tomorrow I'll share about some of our favourite books....."now where IS that Green Sheep....."

Monday 6 June 2011

The Pathway to Home

I have a few friends at the moment who have babies in special care units in different parts of the UK. It's so heartwarming to see the progress these babies are making, but heart-wrenching too, knowing, that two years ago, that was us. The endless trips to hospital. The soaring highs and crushing lows. Milestones reached, and then setbacks encountered. Frustrating too, dealing with that question "when is your baby coming home?" or glib statements "oh he'll be home soon".

This time last year we had completed over 4 weeks. Joseph had been released from the Intensive Care room, and was in the High Dependency Unit. Although we did not know it at the time, we had 6 and a half weeks to go at this point.

The common misconception is that babies have to be a certain weight for them to come home, and this is not true. I am not sure if it was ever so, maybe it was at one time. Perhaps back thirty or forty years ago there were less indicators that doctors and nurses could use and weight paid more of a part in determining wellness.

The big milestones for a baby to reach appear, to those who have been there, obvious, but for those who haven't had experience of premature babies, its worth going through them.

Breathing - breathing is obviously a biggie. Premature babies have to learn to breathe on the outside, and be able to breathe on their own without assistance. Some premature babies have damaged lungs, chronic lung disease, and for a time will come home on oxygen, sometimes they only need oxygen at night, or when they are poorly, for example, have a cold.

Temperature regulation - in the last trimester, babies lay down fat stores ready for life in the outside world. These fat stores help sustain them particularly in the first few days whilst they sort out this feeding malarky. However, premature babies have not had this opportunity to lay down these reserves, and once on the outside have to burn a lot of calories learning stuff, like breathing. Babies are placed in incubators, and the temperature is slowly, over days and weeks, turned down. Once they are placed in cots, they are usually on a bed warmer (which looks ever so comfy, filled with a fluid pocket, and then covered in a quilt) This too is turned down. Different babies respond in different ways and for some it can take a while to learn to regulate their temperature.

Feeding - this is one of the biggest issues for the premature baby to sort out so that they can go home. In the womb babies learn to swallow, they practice by swallowing amniotic fluid (yuck, doesn't really bear thinking about too much, fluid they have weed and pooed in - no wonder Joseph is quite at home drinking the bath water) but of course, if they are born premature, they have not had much experience doing this. Sucking, swallowing and breathing in the right order is not an easy task, and it can take a long time for the baby to work this out. Added to this, breast feeding can be difficult too, because the mother may not be physically able to spend time on the ward, and many wards do not have the capacity to house mothers wanting to breastfeed, and babies may be offered bottles.

Whilst there isn't a "magic" weight, weight gain is obviously important. More fat stores means better temperature regulation, and it also indicates that feeding is successful. Weight is one of the specific indicators of wellness and that the body is operating well.

In our case, it took a long time for Joseph to feed well. He was very good at temperature regulation, and even now "runs hot" rather than cold. Like me, he would wear a t-shirt 10 months of the year! We were very fortunate with his breathing. Joseph was taken off the ventilator 15 hours after birth and never went back on. However he had CPAP (continuous positive airway pressure) for a long time, and it took him a while to kick the CPAP habit completely, a lot longer than many other 27 weekers I know, but I think that extra time stood him well, as he never needed oxygen once he'd gone off CPAP.

Joseph never managed breastfeeding, his mouth was so tiny and getting sufficient latch, and then Joseph remembering to do all the other things was a huge issue. He managed a lot better with bottles, and once he'd started bottle feeding it took another 3 weeks for him to get home.

I'll never forget the day we were told that discharge planning was in place, and he would be discharged the following Tuesday. I was told on the Monday morning, so we had just over a week. I howled and howled. I had never really let myself think about home, I always just thought to the next step, and never looked at the bigger picture, and it was such a relief to know our journey was coming to an end.

Friday 3 June 2011

First Touch - St Georges Neo Natal Unit

Many of my friends that I have met during this journey have had their babies accommodated at St Georges in London. I have asked Sarah from St George's First Touch Charity to share about their chaity and what they do. Perhaps you, dear reader, can help in some small way.

First Touch is the charity attached to the neonatal unit at St George’s Hospital in Tooting, south west London. The charity was set up in 1998 as a way for supporters to donate money that they knew would go directly to the neonatal unit and help the babies, families and nurses. St George’s neonatal unit is the level 3 centre for south west London, and we take the sickest and most premature babies from Kingston, Mayday, Epsom and St Helier Hospitals. St George’s is also a surgical centre for babies from the south east of England.

I became involved with the charity initially as a volunteer until I was asked to take over the management of the charity in 2004. My eldest daughter, Isabel, was born 3 months prematurely in 2001. It was a total shock. She was desperately unwell, sustained a grade 4 IVH, the most severe type of infant brain haemorrhage, on her second day, and wasn’t expected to survive the night. Miraculously Izzy did survive. We endured the traditional roller coaster of neonatal ups and downs. She had brain surgery after 2 months. She came home from St George’s after a three and a half month stay at the nnu. My gratitude to the clinical staff at the unit is infinite.

First Touch spends the majority of money from donations on medical equipment, but also funds specialist nurse training and family welfare. Our purchases in 2010-11 include 2 incubators, a ventilator, a cerebral function monitor, specialist cots and heated mattresses, noise monitors, apnoea monitors and laparoscopy equipment. We have funded a £60,000 simulation training programme and nurse post thanks to a very generous donation from the Rbaby Foundation in New York City. Our commitment to training nurses and helping parents continues this year as we embark on a groundbreaking partnership with Bliss to jointly fund a Family Centred Care Practitioner for 3 years. (We have a long standing relationship with Bliss; one of our trustees and I went to meet the Health Minister to back Bliss’s 1-1 campaign for intensive care nurses, and I have taken part both in the Radio 4 documentary ‘A Moment Too Soon’ and a large scale feature on prematurity organised by Bliss and featured in The Daily Telegraph).

I feel truly honoured to work for a charity supporting a cause I feel so passionately about, and for a unit that I owe my daughter’s life to. Our supporters include local businesses and a wide range of parents wanting to ‘give something back’ to the neonatal unit. The most humbling of our supporters are bereaved parents. An amazing family have just handed over a cheque for over £25,000 to fund a ventilator in memory of their precious son. This is the result of three years of dedicated fundraising. We have a policy of putting plaques on equipment funded by donors, and this is particularly important when families have enabled us to purchase something in memory of a baby - it serves as a lasting memorial to the baby’s treasured but short life.

We have only two part-time members of staff, and very few overheads beyond salaries. We ensure that money is spent wisely and benefits our tiny patients.

Our website  gives a wider overview of our work, and the work of our fantastic neonatal unit. We have some wonderful patrons, including Sophie Raworth, Ortis Deley, Chris Jarvis and Martine McCutcheon who have actively supported our work. Ortis Deley recently appeared on Celebrity Mastermind with First Touch as his chosen charity, and Sophie Raworth ran The Great North Run for us.

We are small charity with a massive cause - tiny patients! We are grateful to all our supporters, and proud to work to support such an incredible neonatal unit.

Thursday 2 June 2011

The Tremendous Twos

I'll let you in on a little secret. I love toddlers! I always have! I have some memories of my toddler years, and all of them are very fond ones....playing with toys, painting at my easel, endless days at the beach, or on my grandparents farm.

I do kind of remember moments where I felt confused or abandoned, like being left at a baby sitters house, that confusion of not knowing where my mummy had gone. Not realising that she had to work or study. As a baby sitter and a Sunday school teacher, I loved the toddlers - their imagination, their ability to play, their communication with each other and with adults.

I find that I can emapthise with Joseph now. What he's going through now reminds me of how I felt when I moved from Australia to England. Things I did that worked in Australia were out of place in England. Things that I would say in England were taken as sarcasm or even as being rude, but in Australia would just be considered "straight talking", and, in fact, not even noticed at all. At times I felt that no one really understood me at all, and felt completely out of place.

For a toddler it's the same. That transition from living in baby land to living in grown up land is really difficult. Having some words "want drink" for example, but not  enough words to truly articulate want, and that clash between what toddler wants and what is safe, and what is acceptable. The behaviour that was cute and adorable in a baby, is not so acceptable in a two year old.

I hate the term "terrible twos". Who are they terrible for? I think sometimes they are terrible for us as parents because we lose that empathy. All we see is the tantrum, and work to hide our embarrassment and just make it all go away. We forget that we were once toddlers, confused about our place in the world, and desperately wanting something that we weren't "allowed" to have.

But put yourself in a toddler's shoes and the toddler years can be terrible, or they can be terrific! I think these two years that they are somewhat free of formal education are really precious. The ability to be messy, to shout, to learn, to love is really amazing, and should be cherished.

I feel sad when people scowl at me at the bus station when Joseph is a little tired and just ready for home, or in the supermarket when he just wants an apple and a drink. If we want to eat, we have to shop! It's not always possible to do it online, or with my husband, who has a car. We have to get out and interact with the world. Sometimes I wonder what the scowling people want me to do. When I talk softly and quietly to Joseph, the scowls get harsher, do they want me to shout? To smack? Do they think those things will help?

I try to have a gentle day with Joseph, time for play, time for sleep, time for food, and then time to do the things we have to do that he may not want to do.

I don't want to spend Joseph's toddler years in fear of the next tantrum. And I want him to start attaining some lovely memories of time spent enjoying and discovering his own unique view of the world.

Wednesday 1 June 2011


So Joseph's birthday was a while ago now, and this year it seems to have been better for me in terms of not dwelling on the past, and avoiding playing "the game" - this time two years ago.... Last year every day I was plagued by replaying key dates in hospital.

However, at the moment I am plagued by something else, related but not the same. I long to be pregnant again. There, I said it. Even sex seems pointless because I can't get pregnant. And its making me miserable.

We made the decision early on after Joseph's arrival that we wouldn't try for more babies. My husband decided to have a vasectomy, he didn't want me to have to go through any more upheaval in terms of hormones, having had a rough time after Joseph was born.

I've been reminiscing, almost without being conscious of it, about how it felt to pregnant. I felt my first outside movements at 24 weeks, lying on a mattress at my sister in laws house, early one morning, and felt my baby kick my hand. On that same holiday we went swimming at Bali Thermes in Germany, and I could feel the baby swirl and duck and dive as I swum. We called it "the flippy turny thing".

Early in the 26th week I bought a linen maternity dress, I never did find the strength to send it back. It sits in my wardrobe still, virtually unworn. A reminder I guess, that once, briefly, I was pregnant.

I feel guilty because I really hated being pregnant, in a way. I really wanted to enjoy it, but every day I felt frightened. I was sure there was something wrong. It felt perilous, I never felt that the baby was safe. And I so wish I had been wrong, but I was dead on. My baby, and myself, were in danger.

But it wasn't all bad. By around 23 weeks I started to enjoy it a bit more, and we had our two week holiday to Luxemburg and Germany, visiting family, swimming and eating icecream!

Even if we had decided to try again, chances are I would have had pre eclampsia again, and even if not, I would have had very rigorous monitoring, I'd be on methyldopa from the outset of pregnancy, and I would be on aspirin. It wouldn't be enjoyable, and it wouldn't be fair on Joseph, or myself or my poor husband who found the whole thing enormously stressful.

But I long for it, a deep psychological, even physiological longing.

And I can't stop crying. Which feels terribly self indulgent, because I have my baby, I am very very blessed and very lucky, but I still can't help the feelings. And does it feel better having written it down?

No. Not really. I just wish I knew how to feel better. How to stop it.