Saturday, 31 March 2012

Preventing Pregnancy Complications - I Need Your Help

I've recently been nominated for a MAD Blog Award in the baby category, which amuses me, seeing as I don't have one anymore (Joseph says he's not a baby he's a big boy) and I'm not having anymore. But then I got to thinking maybe it is appropriate. I blog about babies often, but before they are even here.

In the coming weeks, after the Easter fun, I will be blogging for a week specifically about pregnancy complications and what we can do to help. I will be talking about incompetent cervix, stitches, pre eclampsia, placenta issues, all sorts of things, but importantly the latest research and what you can do personally to help not only yourself but other women.

To save babies lives there are many things we need. We need ongoing research such as that funded by Tommy's, we need empowered, educated parents to be, we need a responsive NHS who uses this research to change practice and improve outcomes. And most importantly, we need to talk about it.

The rates of stillbirth in this country of ours are a disgrace. Getting this down should be an absolute priority for the NHS, in my eyes, as well as the prematurity rate.

Yes, for a lot of women pregnancy and child birth is a normal life experience and not an illness, but for a lot of women, the path to motherhood is very difficult indeed. We can't keep sweeping this under the carpet. Other countries have much lower rates than us, and we need to work on this, all of us. Nothing will change if we, the mums and dads of Britain don't start demanding it.

This where you come in. There are three things I want you to do.

1. Sponsor me in the Bupa London 10k to raise money for Tommy's.
2. Share your story. Have you had treatment for incompetent cervix? Do you want to share what has helped you following previous pregnancy loss or problems? Email me! notevenabagofsugar@gmail.com
3. Consider your own fundraising event. If you are a runner there is a great opportunity that I will be blogging about later in the week

Some of what I write about is going to be hard to read, it's going to be sad. No one wants to talk about babies that pass away, but its reality and we're not helping those that it has happened to by sweeping it away.

When Joseph was born I was struck by the number of older women, ladies in their 70s and 80s who poured their hearts out to me about their babies born too soon or born still. They had never talked about it.

It shouldn't be this way. We should be loving and caring for all mothers.

Please help me put this right. 

Friday, 30 March 2012

A Mother's Work Meme

I was tagged a few weeks ago by A Working Mum in the Mother's Work Meme created by Mother Wife Me.

So here are the rules etc.

A Mother’s Work Meme
Rules:
Please post the rules
Answer the questions in as much or as little detail as suits you
Leave a comment on mother.wife.me so we can keep track of the meme
Tag 3 people and link to them on your blog
Let them know you tagged them
Tweet loudly about taking part (well ok, that isn’t a rule, but how about if we start a hashtag – #amothersworkmeme)

Questions:
1.  Did you work before becoming a mum?
2.  What is your current situation?
3.  Freestyle – got your own point you’d like to get across on this issue? Here’s your chance

1. Did you work before becoming a mum?
I was a case manager for a health insurance company and I loved my job. I had had a few roles in the company and really enjoyed the work I did. I knew when I became pregnant we'd have to make some tough decisions, as the cost of childcare and transport would have left me with very little take home pay. Then I ended up going off on sick at 16 weeks pregnant as I felt "weird". The stress was getting to me, and I wasn't coping at work. Turns out, I was developing pre eclampsia, and had my baby at 27 weeks gestation. I never went back.

2. What is your current situation?
When Joseph was born I was adamant I wanted to raise him myself at home. I was advised to keep out of nursery until he was 2 by our medical team, as he was immune compromised. So I accepted voluntary redundancy and stayed home. After he turned two I was approached to join a home care company. I hadn't worked in care for a number of years but thought it would be suitable work for me to balance child rearing and bring in some much needed cash, as things are incredibly tight on one income.

So now I work variable hours, around 20 per week, and at the moment I am working nightshift. I am knackered, but happy. I love the work, the hours are great, my bosses are understanding.

3. Freestyle - My Bugbear - Flexibility and Ridiculous demands for no money
I applied for several jobs before finding this one. I found that no one wanted me as I couldn't be flexible. I am willing to work evenings nights and weekends, but can't work in the day so easily (for the next reason coming up), so you would think that in many roles this would be ideal. No. At every turn I got knocked back. It also peeves me that work training etc is all done Monday - Friday 9-5. Support work is not Monday - Friday 9-5 so why don't these companies that offer training offer unsociable hours? Childcare is NOT flexible. We have no family at all in the UK, no one who can take Joseph for a day or whatever. You can't easily book childcare for one off days. It's virtually impossible. And I wouldn't really want to dump Joseph just anywhere. It just annoys me that there's this buzz word of "flexibility" but it's a dead end, one way street.

The next thing that really sticks in my throat that certainly up here in the North, its very difficult to find anything above minimum wage that has any degree of flexibility. Childcare is so expensive, its a real discincentive to work. My husband works and whilst he doesn't earn a fortune the government has now decided we don't need tax credits or help with childcare. It's stupid and its unfair. I have really struggled with this. I am happy to accept my close to minimum wage job as I have little costs, but it just gets my goat that the burden falls onto women, by and large, particularly those who haven't got a stunning career.

Thus endeth my rant. I'm copping out and not tagging which I know is naughty but this has been a well circulated and well loved meme. If you see it, and fancy doing it, then you are tagged!

 
 

Thursday, 29 March 2012

The Things That Scar



It still hasn't left me, that time in the neonatal unit. It's nearly 3 years on now, and it's interesting how much that time has impacted on me personally.

Occasionally, not all the time, I still see Joseph as that vulnerable little baby, and a wave of fear washes over me. Last night Joseph was very upset going to bed, because I've been on nights and he is waking up and I'm not there, when I am there he wants me with him all the time, especially at night. He finally settled. When I went to bed at 10 I had a panic as I couldn't hear him breathe so had to go check. Although he's a big boy now, it still hasn't left me, those little worries. It pains me that maybe he felt abandoned when he was tiny. I wasn't there for him all the time.

Now the weather is nicer Joseph is starting to wear cropped pants and t-shirts. I still worry about the scars. They are not major ones, just from iv lines, but they are quite raised and noticeable. Sometimes people ask me if he's been bitten by insects. I never really know what to say. Whether to say "I don't know", to explain, to just shrug it off. I don't want him to be hung up by them. Strangely enough the one I was worried about, from his hernia surgery, has been so well done that its invisible!

On one of my blogger forums this week there has been a discussion about whether we would allow non-formal milk sharing, or allow our baby to nurse on someone else. Quite rightly, most of the mothers have said no, nursing is too intimate. That caught me, that I lost all that intimate new born time because of Joseph's prematurity, and I'll never have that. I had to share him with nurses and doctors. To me that leap to have allowed him to nurse from someone else seems a very short one.

That old sadness is haunting me again. Close friends have had babies recently, and it hurts, all over again. Of course I share their joy, and I wouldn't want what happened to us to happen to anyone else. I wouldn't want my dear friends to have a premature baby just so I would have more in common with them.

However its my old grief, and more than that, that I wanted better for Joseph, a better start, with me and with his dad nearby all the time, safe in the closeness and intimacy of our family.

No wonder I still get separation anxiety when I leave him. It brings it all back. I find it hard to enjoy time away from him.

Sometimes I wonder if it would be helpful to have another baby, whether it would help erase some of that stuff and replace it with something new. But then what if it happened again?

Lately a lot of people have asked me when we are having another and are shocked when I say no more babies. I don't think people realise just how scary it is having a premature baby, and just how much it hurts to see what happens to them. They aren't just put into a baby nursery and left to grow, there's so much active medical treatment, and so much risk to the baby of complications, of things going wrong.

And its good, that I still remember, that I can still feel the hurt and the pain and the fear.

And I still feel very much the joy, of having a baby, of watching him grow, of developing a bond. What happened to us happens to so many families around the world, the way we care for these families, support the mothers, the fathers, the siblings and the babies needs to improve.

At times I feel lost, neglected, that I need a blog to read or a hand to hold.

It still hasn't left me.


Wednesday, 28 March 2012

Book Review - You Are What You Eat by Serge Bloch

Recently I was sent You Are What You Eat, by Serge Bloch to read and review.



I had never come across Serge Bloch before, and I've now found a new favourite author. The book tells the story of a fussy eater, through common every day sayings and absolutely delightful illustrations a combination line drawings and photographs. The book is written in the voice of the fussy child.

One of my favourite parts of the book is when the child says "My mum says it drives her bananas to see me eat like a bird". Whenever I read that Joseph laughs and grins at me, as he is going through a very picky phase at the moment, and knows, despite my attempts at a poker face, that it really does drive me bananas!.

The book reads beautifully, and its one that at nearly three Joseph appreciates through pictures, but it will suit him just as much until he's 8-10. I love books that become favourites, taking on different meanings as the child grows, and You Are What You Eat certainly does that.

It also encourages reading, as the key sayings are in bright colours, larger type and match the image shown, which really helps with word recognition.

It maybe coincidence, but since reading this a few times of an evening, Joseph's eating has improved!

I'd highly recommend this delighful book.

You Are What You Eat by Serge Bloch
ISBN: 9781402797606
Price: £5.99
Publisher: Stirling
Publication Date: March 2012
Available from Amazon



Tuesday, 27 March 2012

Doula Week - How a Doula Can Help in Pregnancy Following Premature or Complex Delivery


When I was pregnant I heard the term “doula” for the first time. Doula is a Greek work and literally means ‘woman servant’ or ‘caregiver’. I was recently presented some information from Doula UK talking about new research that shows doulas have a significant impact on birth and breastfeeding.  

Commencing on March 22nd, this week is World Doula Week, so a great time for talking about doulas and what they do. I spoke to Iga, a doula who works in London. She gave a lovely description of what a doula does. “A doula gives love and support, she ensures that the decisions you take during birth are truly your own. We are here to empower women, and to make sure they are giving informed consent” A doula is not a replacement for a midwife or doctor, they are there as a caregiver for the mother, and also the father.



As we are all aware, in many hospitals and birthing units, a midwife is shared amongst a number of labouring women. In my case, I needed a midwife at all times, and I knew that many of the labouring mothers were missing out on attention and help as one was with me continually. A doula is there for the mother, for you alone, you are not sharing her. I think for many women that reassurance is wonderful. 

Fathers are of course brilliant, but the way Iga shared it with me, often fathers who are loving and supportive find the intensity of labour difficult to bear:  it may be heart-wrenching to see their partners in pain and - while being naturally worried about her and the baby - still having to be the calm in the eye of the storm and deal with the doctors and the midwives. Having a doula present takes the pressure off the father, and he can focus solely on taking care of the mother.

Doulas meet regularly with the couple before birth, and therefore know the couple and their dynamic, and will be prepared to be able to help that couple the best way they can. Iga explained how she will advise on massage techniques and other practical things fathers can do. 

I know a lot of you reading have had previous difficult births, and perhaps may be worried you will have a caesarean section, and like me concerned about hiring a doula. I had a terrible misconception that doulas are just for straight forward vaginal deliveries, but that is not the case.

Iga, like all doulas, has a lot of training in staying calm and bringing peace and clarity into a situation. Pregnancy is a time of great personal growth and challenge, and can often bring out feelings and fears from past experiences. Iga does a relations and visualisation exercises to help with these feelings. 

If medical interventions are required, doulas can take a step back, in a sense, and ensure that the parents can negotiate and ensure their wishes are taken into account, such as delayed cord cutting, skin to skin, finding out the gender of the baby. Ensuring a couple gives informed consent is an important part of the doulas role.
Iga explained to me that sometimes the couple decide, if a caesarean is required, that it will be best for the doula to be present rather than the father, and I can totally understand that. An operating theatre is a scary place, and to be in that situation with someone you love is a very confronting, terrifying thing.  Sometimes, in emergency situations, if a general anaesthetic is required, no one, other than the medical team, are able to be present, and in that case, a doula is of great support and comfort to the father, as well as the mother.


After the birth, in the post natal period, the doula continues her involvement, usually with 2 visits, but also with phone and email contact. This generally ends after a month, but if a baby has arrived prematurely then this may continue for an extended period of time. 

Iga was telling me of a woman she assisted who had a term delivery but that had become complicated and the baby was in the special care baby unit. Iga was called as the baby was not latching on and feeding was impossible. She came in to help with breastfeeding and kangaroo care on the second day after the baby was born. She put the mother and people around her at ease, she brought peace, calm and trust into the situation and soon the baby was latching on and feeding like a professional.

From my perspective, I can see how having a doula would be wonderful. For me breastfeeding was stressful. The unit hadn’t had a lot of experience dealing with breastfeeding tiny babies, and there was a great deal of anxiety from a number of sources every time I tried to feed Joseph. Having someone who knew me, and my parenting style, and my aspirations, who could calm me, and the situation and help me focus on being a mother would have helped me enormously.

One of the powerful things Iga said was that sometimes you just have to take the pressure off breastfeeding, and empower the woman to concentrate on mothering the baby, to cuddle the baby, give kangaroo care, and then, more often than not the milk will flow, and the baby will feed.

I came away from my conversation with Iga being very much convinced that a doula can play a vital role in subsequent pregnancies following premature birth, pregnancy loss or caesarean section delivery.

If you are interested in learning more please visit DoulaUK

Monday, 26 March 2012

Travel Insurance and Your Premature Baby

I've been wanting to cover this for quite some time. As most of my readers will know, I used to work in health insurance before having Joseph. When we travelled to Australia when Joseph was seven months old we were not charged anything for his insurance, and again when he was 21 months we paid a nominal amount. I have discovered that a lot of parents have paid a fortune for travel insurance and wanted to share some of my knowledge and tips.

1. Before booking your trip and paying for insurance, speak to your child's consultant about any potential issues. Ask your consultant what they feel you need to declare when speaking to your insurance company. If your child is no longer under consultant care, I would argue that you probably do not need to disclose too much to your insurer, and I will explain why further on.

2. Do not attempt to book travel insurance with an online service. Analysing complex medical histories and applying pre existing conditions is too complex for the computer, and your quote will be wrong and your cover inadequate.

3. Shop around and ask for personal recommendations. Also check any existing cover you have already. We had a travel insurance arrangement with our bank, they covered Joseph free of charge in his first year, and were not concerned about his prematurity.

4. Before speaking to insurance firm, write down your key points and concerns and make sure any information you give is up to date. For example when Joseph was discharged from neonatal care at 3 months old there were a number of concerns about his digestve system and breathing, and we were given a diagnosis of chronic lung disease (CLD). When applying for travel insurance, I did disclose all this but made it very clear that he was not receiving treatment and not expected too.

5. Don't say too much. It's tempting to say everything to cover your bases and no one wants to go on holiday not covered. Having said that, you need to remember that in the vast majority of cases the person you are speaking to is a) not medically trained and b) not the decision maker. I would advise to start you conversation by saying "my child was born prematurely at x number of weeks," and let them lead the conversation. It's important to bear in mind that the operator will be entering codes into a computer so if you say CLD, even if your baby is not receiving any active medical treatment at the moment, the computer might think emphysema or COPD, which are very serious conditions and thus will increase your premiums. Bear in mind that what the insurance company need to know is anything that is likely to go wrong, but don't be too speculative, and this is where speaking to the consultant first will help crystallise how much information you need to give.

6. Get additional quotes. I would work on getting at least 3, if they are all coming back high, consider using a broker, who may have additional companies they can use.

7. If you are turned down at any point in the quotation process ask to speak to the underwriting team, these are the guys that determine risk and whether they will offer cover. Sometimes it can just be a coding error or interpretation problem and can be rectified easily.

8. If travelling in Europe make sure you have a European Health Card organised for all of you in the family, including the infant. The EHC is not enough on its own, as it will not cover medical repatriation back to the UK and other costs, but is important to have.

9. In complex cases travel insurance will be expensive and its important to shop around and get sound advice. I would advise using a broker in complex cases.

 




Sunday, 25 March 2012

How to Break the Dummy Habit Completely

Today's post is by Joanne Mallon, author of Toddlers - An Instruction Manual, a practical and helpful guide to raising your toddler. The book is available from Amazon in paper format as well as a Kindle edition. Part of the royalties from the book got Home Start, one of the UK's leading family support charities.

Joseph never had a dummy, which is a story for another day (they are beneficial for premature babies) and I know for many parents how to approach withdrawing the dummy is a big issue. Thank you Joanne for sharing this with us.

 

How to break the dummy habit completely:
You will make it easier on both of you if you decide to drop the dummy either when your baby is very small, so they forget about it quickly, or when they're old enough to understand that it’s time to give it up and talk about it (around 2 or 3). In between these stages is probably the hardest time, because they'll be old enough to make an attachment to their dummy, but not old enough to understand why you want to take it away.

The first thing to be aware of is that you as the parent need to be ready to give up on the dummy before you expect your child to. As parents of dummy users (and yes, both of my children had one) we do get reliant on them to soothe a fractious crier. So when you decide that it’s bye bye dum dums, make sure that you're mentally prepared to say no or find other alternatives for at least a few days. If you're already exhausted or stressed out about other issues, leave it until those things pass.

Start breaking your (and your child’s) dummy habit by stopping taking one out with you during the day and keeping it for night time sleep only.

And when you do decide to give up the dummy, noo noo, comforter or soother, here are some strategies to try:

·         Appeal to their sense of maturity
Yes, they've got one. Some children love to be 'the big boy' or 'the big girl', so appeal to them on this level. Point out that they won't want something that marks them out as a baby.
·         A visit from The Dummy Fairy
This is the Tooth Fairy's cousin, who leaves gifts for children who give her their dummies.
·         Send it to Father Christmas
Did you know that Father Christmas collects up dummies to distribute to all the babies around the world? And also leaves a special gift in return? You do now. The advantage of this technique is that the child is likely to be distracted by the excitement of Christmas
·         Old fashioned bribery
Lacking in imagination, this is what I did. But it is a classic motivational technique -- make change more attractive than staying the same. When my child spotted something she liked in a toy shop, I'd say "You can have that in exchange for your dummies". Eventually she caved in when she spotted a particularly unattractive hot water bottle cover that she wanted more than the dummies.

Saturday, 24 March 2012

Awards Season

Lots of people are writing posts about the upcoming MAD Blog Awards and the Brilliance in Blogging Awards. Both awards are in different stages, the MADs have just opened for nominations, and the BiBs are in the shortlist stage.

I am very proud to announce that I am a finalist in the BiBs in the inspirational category. The list is pretty amazing and some of my favourite bloggers are there alongside me.

I am really excited by the MADs, I was so thrilled to be a finalist last year, and would really love to be one this year. The awards ceremony is so much fun, and its so great to be able to meet other bloggers and share our successes. I am not in anyway a competitive person, I think the blogosphere is a rather big place, and we can all be there, alongisde on another, caring and sharing. 

I think anyone who knows me will know that I am passionate about blogging. I love it, and it has helped me immensely in my personal growth, and in particular in my journey into motherhood, it has been incredibly healing and by jingo and by crikey has given me amazing opportunties I never would have had otherwise.

One of the the things that brings me joy is encouraging other bloggers in their journey, especially those who have had a difficult journey of their own.

I am so grateful to everyone of you who reads, and who shares this blog with others. Getting comments like "I thought I was the only one to feel that way" or "I felt so alone and so scared until I read this" that is what keeps me blogging, not awards, or approaches from companies, not even the charity work I love so much.

Do I want you to vote for me in the BiBs or nominate me for a MAD, yes I do, I would love that very much, if I have touched you and you want to vote for me, that would be lovely and I thank you.

Do I want you to exclude other blogs, no. I am naturually going to fall into the inspirational category and we are all there because we are inspiring. We all talk about different things. Some of my dear friends are alongside me in those categories, and if you want to vote for one of them, I'd be thrilled.

I love Not Even A Bag of Sugar with all my heart, it's brought me so much comfort and so much joy too. I am in a great place at the moment, I have a healthy happy toddler, a lovely husband, and a paying job, as well as a thriving blog. Writing Sugar has helped me so much, in coming to terms with what happened to us as a family, and to share knowledge and experience.

So thank you so much everyone, and a huge thank you to some of the bloggers who have helped me so much, Mummy Pinkwellies and Mummy Whisperer, especially.

Friday, 23 March 2012

Britmums Live - My Top Tips!

So I am getting all excited about Britmums Live, as I start looking for accommodation. I thought I would share some of my top tips, after my virgin voyage to Cybermummy last year!

1. Make a little list of everyone you want to catch up with and mark it off. It may seem a bit anal, but did not do this last year and came away wishing I had caught up with some favourite bloggers. Make a list of no more than ten. Include profile pics if necessary! I'll do a post a bit closer to the time of my ten bloggers I want to catch up with.

2. Take something to tweet on, but I wouldn't bother with a lap top. I took my lap top last year and sincerely wish I hadn't. It wasn't used at all during the day. At the time I had a dumb phone that didn't do stuff like Twitter effectively. If your considering upgrading your phone or acquiring an iPad or other form of tablet device, do it before Britmums Live.

3. Take water. I am taking my groovy water bottle. I found that the day was so busy I didn't have time to grab water etc except at meal times.

4. If you don't have business cards you will feel like a wally. I didn't bother last year and really wish I had done. There will be loads of competitions to enter, people to meet and people giving you their cards. They don't need to be fancy just homemade will do. I got mine from Vistaprint, and they've really come in handy.
5. Decide what you want to get out of the day. For me, I was clueless about blogging, and just wanted to learn everything. No one really visited my blog much apart from friends, family and a few stalwarts who supported me. I had just been nominated for a MAD award in the Inspiring category. I knew I had to go hard or go home. I sat and listened and took copious notes all day, and got loads out of it. This year my focus will be a little different, as I think it will be more about networking and lifting my blog to the next level.

6. Think flats. I made a stupid mistake and wore smart, highish shoes and was really uncomfortable. Yes look stylish, if that's your bag, but its a long day, well day and a half, and you need to be comfy!

7. Get there early. There is so much to see so many people to talk to, make the most of your time!

8. Smile. Everyone is really friendly, and you will meet some amazing people.

9. Study the form guide. Make sure you have an idea of which workshops you want to attend. It's ok to have a session or two "off" as there will be loads to do outside the sessions. I didn't want to miss any last year, but this year I am considering missing one so I have more time to talk to some of the businesses there.

10. Look me up!If your feeling nervous or shy, I'll talk to/at anyone!I'm really approachable!


Thursday, 22 March 2012

#OBEM - A Healing Journey

One Born Every Minute on Channel 4 is a favourite programme of mine and one I've blogged about a couple of times. Last night's episode was simply amazing and I learnt so much from it about my own journey.

I do apologise, as these clips will probably only work in the UK, however this one shows Billie and her partner Ryan welcoming their son Cody into the world. Billie is a very young mum, and she develops pre eclampsia. Her baby is born by caesarean section at 30 weeks gestation weighing 2lb 10oz.

I really enjoyed seeing him being delivered, it really helped me understand more about Joseph's journey. I'd wondered what had happened to my waters, what it might have looked like down there. It was really lovely to see what Joseph's entry into the world was like.

This next clip just gets me. Giving birth to your baby prematurely is not the hard part, that bit is relatively easy, it's controlled, you are well looked after (clearly I am referring to the planned c-section premature delivery that Billie and I had). It's the next bit. The endless hospital trips. The awful half life between being a mother, but not really being a mother, not having your baby at home, and all that means. The fear of getting to hospital and being told that there's a complication. The next day being told trouble has passed, or that it hasn't. Being taken to one side and being told there is a solution, but there are consequences. So many times something they do to help, such as a power antibiotic like gentomycin, has a risk - in this case it can cause deafness. It's so hard to take in, and such a responsibility giving informed consent, when you feel anything but informed. You are just caught in this game of snakes and ladders with your baby in the middle.

One of the hard things is seeing mums and dads walking to their cars with their full term babies, and feeling like a freak for not being able to carry your baby to term, through no fault of your own. It's tough being a mum at the best of times, but the complexities of NICU add a whole new level of difficulty and fear.

I just couldn't believe that maturity and insight of that young couple. To me, they seemed amazingly strong and controlled. It's just amazing to see these young people draw on their inner strength, to see ther love for their son overriding the fear, and just getting on with  it.

Mothers and fathers are amazing, and those with premature babies are just awe inspiring. There are so many parents that just inspire me everyday!

And at the heart of all this are the babies. These brave, strong little babies, who have the fight of their lives in front of them right from the start of life.

Thank you so much One Born Every Minute for so thoughtfully portraying a premature birth last night, and to Billie and Ryan for your openness, honesty and your strength.

Just amazing. 



Wednesday, 21 March 2012

Travelling When Pregnant - A Cautionary Tale

These days we travel, we take it for granted. In our grandparents day overseas travel was often a once in a lifetime experience, these days, it can be once a year, even more often. Pregnancy is not an illness, it should be a normal life event, it shouldn't force us to stop doing things that we love to do, as long those things aren't injurious to ourselves or unborn baby!

As regular readers know, I deal in the minorities of pregnancy, those one in 10-13 pregnancies that do not go to plan. I think sometimes it can be easy to be blase about pregnancy, but even now in the 21st century pregnancy can be a risky business.

But being pregnant shouldn't curtail our lives to such an extent that we feel confined to our homes unable to travel, unable to lead our normal lives, but we do need to make careful considerations in our pregnancies, to make sure that we have covered our bases.

The difficult thing is, no one can predict when your baby will come. Whilst some women are high risk for premature deliveries, a lot of women are not, and are caught by suprise. I would never say "don't travel in your third trimester" if your having an uncomplicated pregnancy. However if you are going to travel, be prepared.

This story has prompted today's post. The couple in question had their baby at 26 weeks gestation whilst on holiday in Canada. Whilst the mother (and father) were covered, the policy did not cover childbirth or the baby. The have been left with $1 000 000 bill. Eye watering, bankrupting stuff, in an already highly stressful situation. There was a very interesting and heated discussion on my Facebook page today about this story, but the moral of it is be prepared. It isn't courting fate, it's being sensible

This is not as uncommon as you might think. I have heard heartbreaking stories of people trapped abroad, without support of their families, only to find they do not have adequate insurance cover. I'll never forget a thread on the Bliss messageboard a few years ago about a mum stuck in Tunisia on holiday with her 27 weeker, with inadequate insurance.

If you chose to travel in your third trimester, call your insurance provider, shop around, and make sure you have adequate levels of cover in place. Ask the question, "would I be covered if my baby arrived prematurely and would my baby be covered". Double check. Get it in writing too.

Consider what sort of holiday or break would be best, too. In our case we chose to travel to Germany to be home just before my 24th week, and just as well, as it turns out. But we also chose to travel to family and friends, my Mother in Law is a practising midwife in Germany so had things gone pear shaped earlier, we did have a back up plan.

Life is for living, but always check the fine print, and have a worst case scenario plan in place. 




Tuesday, 20 March 2012

Easter Best Look at George at ASDA - and a Competition!

The weather is getting better, the flowers are coming out and Easter is on its way! We were very excited to be asked to join in with the Easter Best Look competition, and had great fun choosing at outfit for Joseph from the selection of boys clothes from George at ASDA. Keep an eye out for the other participating blogs!

The new seasons range at George is wonderful. I found I was spoilt for choice, I love clothes that are bright, fun and functional, and will cope with the rough and tumble of toddler life, and wasn't disapointed. I chose a bright cardigan, a pack of three t-shirts and some really lovely trousers in a plum colour. Joseph loved the clothes. I did have a slight disaster choosing socks, and got the wrong size, if I am still blogging in 6 years time, I'll showcase the socks!

I love Easter Sunday, and getting all dressed up, and I think you will agree that Joseph looks great in his outfit!



There are 16 bloggers taking part showcasing the lovely range of clothes. Some of these bloggers have girls! I am so coveting some of the range. When the competition goes live, find as many of these blogs as you can, and locate the hidden eggs! Please leave a comment to let me know you have entered!

Monday, 19 March 2012

Caesarean Section - Did I Give Birth?

This morning, I am going to rant. I haven't had a rant in a long time, and this one has been slow brewing for a while. On forums and on Facebook I have seen suggestions by "natural birth advocates" that if you have had a baby by Cesarean section you have not "birthed" your baby. The implication is that you are somewhat deficient in the motherhood stakes.

Now whilst I accept that there are women who may choose to have elective sections as they do not wish to have a labour and vaginal birth, I know of none. The vast majority of women have Cesarean sections due to clinical need, often emergencies. Yes, I think in some circumstances good, sound care and support may avoid a small number of sections, but by and large, the vast majority of Caesareans certainly in the UK aremedically necessary.

I am personally offended by the suggestion that I did not birth Joseph. Of course I did. I have the scar to prove it.

I think for mums who have had cesareans there is a feeling that our babies were ripped out before they were ready, before we were ready. And to me that's a seperate issue. Dealing with our bodies failure to keep our babies to term for whatever reason should be treated seperately, with tenderness and kindness. It takes time to grieve your lost pregnancy, your lost birthing experience. You still gave birth, just not in the way you may have planned.

For a long time I felt angry that I had had to have a section, that I didn't get to labour or deliver my baby. I was deeply upset and I know a lot of mothers feel the same. To have this further reinforced by so called "natural birth advocates" implying we did not even birth our babies, quite frankly, angers me.

I am fed up with this competitiveness when it comes to childbirth. The most valid method of delivery is the one that results in a healthy baby and mother. You are not more a mother if your baby comes out the lambing end in a pool in a lovely environment, rather than out the sunroof assisted by a surgeon. We are mothers.

For those of us who have had cesareans who would have preferred anything but, these suggestions we did not birth our children are offensive. I had no option. I could have refused to sign the consent form for my section, and indeed all the options were presented to me. However, there was no option if I wanted to live and have the opportunity to have a safe outcome, a healthy baby.

So just stop it. And for those that have had cesareans, take it from me, you birthed that baby, ok you may have had a little help, but that baby was birthed by you. 

Sunday, 18 March 2012

Mother's Day Thoughts

It's not really Mother's Day for me today, the Australian one is in May, and that's when I think of my own mum (but I am really useless and always forget until the day itself!) And today, after a lovely breakfast and waiting to walk down to our local for a pub lunch with my husband and son, I am thinking.

My friend Stacey who blogs here is waiting. Years of trying and disappointment, fertility treatment and finally falling pregnant with a couple of worries along the way, is now overdue and waiting impatiently for her little man to come. Her sweep is today and we are hoping he is the best Mother's Day gift ever!

Another friend a couple of years ago had an angel baby, a beautiful term boy, but with congenital heart disease, who fought valiantly but died. This little boy was conceived through IVF, she had another round of treatment, but it failed. They had all but given up hope. This week, she gave birth to a healthy, naturally conceived baby boy, her rainbow. I could not be more overjoyed and I smile when I think of them.

I'm thinking of all those mothers today who are sitting by incubators, by hospital beds, who are praying and waiting and hoping. For whom Mother's Day is not about flowers, chocolates and meals surrounded by family, but an anxious and uncertain time, a time of fear, of guilt and of sadness with a curious mix of joy thrown in.

There are mothers for whom the future is unknown, who have children born prematurely and are struggling, with disability, with uncertain diagnoses. And I think of those mothers who have been through so much and its not over.

I am thinking of dear friends, who I count as mothers, but are waiting anxiously to be approved for adoption, their journeys with infertility leading to the decision to say "enough, there is another way". The journey is long, and not straightforward, but their tenacity, resilience, and never-failing love is beginning to blossom already.

In my thoughts also are those for whom their families are complete before their time, like me. A dear friend, who is much younger than me, had awful bleeding following her emergency c-section and returned to theatre for a hysterectomy. They are now facing surrogacy to give their child a much wanted sibling.

I am thinking of those who have lost their babies, through still birth, mid and early term miscarriage, and neonatal loss. There are too many mothers who grieve, and today I think of them.

Mothers are amazing. We are resilient, knowledgeable and strong. We cry and we grieve. We love. We love so deeply. We care, not only for our own young, but for others.We give our time, whether it be formally for charities, or informally, sharing with our mum friends over a cuppa or a glass of wine. We are there.

If there is anything this journey has taught me, it's about the uncertanly of motherhood. Nothing is ever guaranteed, as much as we like to think it is. We can do all the right things, follow the rules, but things can, and do, go wrong.

But the greatest thing I have learnt is the resilience of mothers. their love, their strength, their honesty, their endurance. It does not matter how you mother, or how you became a mother, whether your babies are with you, or are angels, or are waiting to be born or to come to you through fostering or adoption.

You are a mother. And you are wonderful.

Saturday, 17 March 2012

Tommys lets get baby friendly Awards 2012

With much excitement, I attended the Tommy's Lets Get Baby Friendly Awards at the Landmark Hotel in London yesterday. Never in my wildest dreams did I think I would ever attend a glittering event in London rubbing shoulders with celebrities. I was there in two capacities. Over the past 10 months I have been working with Tommys through this blog, and in the media. It's been fantastic and I feel they have given me a lot more than I have given them. And secondly, I nominated my GP Dr Gordon Mackinnon for the Tommy’s & Danone Baby Nutrition healthcare ‘hero’ award award, and I am proud to announce he won!

The Landmark is an amazing hotel and I was struck by how well run the event was, it was simply beautiful. There were celebrities everywhere you looked, but they weren't the real stars of the day. This is Skye (with her mummy Ruth), born at 27 weeks, about 3 weeks before Joseph. Skye is beautiful just like her mummy, with a strong spirit. You can read her story told my her mummy here. The stars of the day were the children, the parents, the healthcare workers and the support staff that make our dreams come true. It is not exaggeration to say that with each story told, eyes got wetter, mascara ran and napkins were used instead of tissues.

Particularly moving was Professor Shennan's address about his work with the premature baby clinic at St Thomas' funded by Tommy's. His work in instrumental in helping parents take home healthy happy babies, and he shared several stories of how the research is really improving outcomes, and they are on the cusp of many more breakthroughs to help more parents bring home their babies.

This is the very lovely Terri Dwyer presenting an award to my friend Carole's health visitor, Brenda Bartlett for her exemplary care, support and resourcefulness. I do hope one day Carole will share Luke's story here, as its a remarkable one. Those are Luke's tiny fingers.

Whilst the stories are moving, and the message behind what Tommy's are doing is important to share, it wasn't all serious. The meal was amazing, and I had to take a picture of the wonderful dessert.

Pictured here are 3 creme brulees, a tradional one, a chocolate and a pistachio variety topped with a shortbread and a scoop of rum and raisin icecream! Quite delicious.

Here I am with Dr Mackinnon, hopefully offiicial pictures will be available soon. A massive thank you to TKMaxx for supplying my make up, bag and shoes for the event.

I know that there is so much pressure to give to charity. I know a lot of us work very hard to provide for our families, and it's hard to find spare cash, but I can tell you, that every little amount you give to Tommy's helps. It helps provide answers, to provide support, to give advice, to share information. You are helping mums like me to be mums. You are helping babies like Joseph to thrive. You are there at the beginning of these tiny lives.

Just a friendly reminder that I am running/waling the London 10k for Tommys and would be grateful for any donation.

Friday, 16 March 2012

20 Years in Support Work

As most of you know I have recently returned to work as a support worker for a fabulous company called Complete Choice Care. Much to my manager's annoyance I do still tend to use the term carer, as I like it, so do tell me off if I use it!

I first started in care work at the age of 15. It's amazing how many changes I have seen in this time. I started by volunteering at a care home in Hobart. The things I used to do make my toes curl now. I used to assist with mealtimes - that is, feed elderly people who were unable to feed themselves. No training, no insurance. I helped people with toileting, took them out for strolls in the local neighbourhood. I doubt very much that would be allowed now.

When at university studying for a degree in business, I kept my hand in, doing work for Headway with people with acquired brain injury and being an advocate for Ctizen's Advocacy, which I really enjoyed. The advocacy work was tough, and gave me a good understanding of the issues facing people with disabilities in wanting to live independently and having the freedom to make their own choices.

When I was doing advocacy work, many of the people I was helping had come out of institutions, and I am pleased to see, that during my career, we've seen the vast majority of these places closed, and care standards have greatly improved. I am proud to have been part of that process.

I do think though, that sometimes, regulation goes too far. I am now not permitted to cut toenails or fingernails. Imagine the frustration, you are dressing someone, notice their fingernails are catching on their clothes, and can't trim them. One of my Twitter friends Daniel made the valid point that whilst a podiatrist cuts toenails, they are not permitted to do fingernails, and hasn't worked out who should be doing these.

Most changes I have seen are definitely for the better. When I first started working in the field in the early nineties, we physically lifted folk. I recall when the hoists were first brought in, they were used to dry towels on, people were very resistant to change. As a young support worker I was keen to learn, and I loved learning to use the different equipment.

I recall one house I worked at, with three gentleman, we had an enormous drug cupboard full of tablets, including anti seizure medications. It used to take ages to dispense medication, and whilst we were always meticulous, it often worried me how easy it would be to make an error. This area has undergone a great deal of change, and for the better.

The biggest change I have seen is in training. I go on training regularly to ensure my practice is up to date. My managers are always available to help me and provide guidance. We have regular observations and assessments. What upsets me is that society still doesn't value what we do, by and large. I think there is little community understanding of just what we do, it's far more than just dressing people and making cups of tea. Of course befriending and general care work is important, but our standards of record keeping, duty of care and protecting people are higher than ever.

I am so proud to work for Complete Choice Care. They are family oriented, care about each member of staff and service user as an individual, and have recently obtained Investors in People Gold accreditation, which for a new company is just fantastic!

I'd highly recommend a career as a carer, the rewards are fantastic, and I have had some fantastic experiences and met people I never would have done otherwise! 




Thursday, 15 March 2012

Britmums Live Linky and Meme

I've been tagged by Claire at A Boy with Aspergers in her Britmums Live Meme. I am really excited to be attending this year, and have my ticket at the ready. I still haven't quite worked out the logistics of where I am staying yet! But I am sure I won't be sleeping on a bench in Hyde Park and will figure it out!


Q: What’s your blog title/URL and how long have you been blogging?

Not Even A Bag of Sugar - www.notevena.blogspot.com and I've been blogging now for two years!

Q: Will Britmums Live be your First blogging conference?

No I attended Cybermummy 2011 last year, and found it incredibly inspiring and rewarding and I got a lot out of it, so am really looking forward to Britmums Live
Q: Did you bag yourself a sponsor?

No I haven't asked for sponsorship this year, however am open to offers. I've bought my own ticket and can cover my travel, but if anyone wants to pay for my accommodation in return for an advertisement and guest posts, feel free to approach me!
Q: Are you attending both days?

Absolutely, and I really am glad its over 2 days this year.

Q: What are you most looking forward to about the conference?

Meeting more bloggers, and learning and sharing experiences. Last year I felt like an empty sponge, this year hopefully I can share too and it will be more of a two way experience.

Q: Are you wearing Branded Clothing ( you’re sponsors brand)?

No but am considering a "not even a bag of sugar" t-shirt!
Q: What is your planned style for this event?

Yummy mummy chic! No, joking, no idea, something clean! And comfortable shoes! Lesson learnt from last year! 
Q: Are you hoping to be nominated for a BiB award?

Yes it would be nice

Q: if so what category?

Probably  "inspire" suits my blog best

Q: Will you be looking to network with Brands?

Yes perhaps. I have a little plan if the sponsor I missed out on negotiating with last year is there this year! I plan to do some more work with brands on my blog, and I also want to work on something that will help other mums of premature babies.
Q: What do u hope to walk away having gained from the conference?

More friends, and some more contacts, and definitely a better idea of blogging for charity. I think I'm doing ok with this but there is room for improvement.

Q: Will you be dressing up in the toilets for the Friday night BiBs?

I might do my hair and whack a bit of slap on!
Q: Are you speaking at the conference and if so when, where and how do you feel about doing so?

No not been asked this time (hint hint)
Q: Will you be joining in the early morning bloggercise on the Saturday?

Definitely!
Q: What speakers are you most looking forward to listening to?

Sarah Brown was amazing at Cybermummy so looking forward to listening to her again. I am mega excited about Ruby Wax, and am so impressed that Britmums have got such a high calibre person to speak to us about such a taboo topic - depression, but I am most excited about hearing Camilla Batmanghelidjh as she is one of my heroines! I will be all read faced and inchoherent but hey ho!

Q: What workshops will you be attending on the Friday (Day 1)

I am attending the Clever Bloggers Way to Write about Parenting.
Q: What Workshops being held on the Saturday (Day 2) have grabbed your attention?

I'm struggling with the first session as none of the three are grabbing me, so might attend Blogging About Food as it sounds interesing. Session II will have to be Blogging for the Greater Good as that's what I am all about. I think the third session will be How To Create an eBook. I am considering doing a small eBook about premature baby weaning, but am unsure. And the final session I'll attend Sod the Stats and Blog for Happiness.
Q: Are u booked into a hotel for the Friday night, if yes which one?

Not booked yet, will have to pull my finger out!

Q: Will you be looking for after party drinks

No I'll have just turned 40 and will be ready for my bed by 8pm I would have thought!
Q: Are u worried about not knowing anyone or being confident and socialising on the day?

No, I found it great last year, everyone was in the same boat and I made some great blogging friends, and I feel more prepared this year.
Q: What’s are you most likely to be found doing why attending Britmums Live?

Last year I was the only person without a smartphone or tablet, head down bum up writing copious notes in pen! Hopefully this year I will have a tablet of some sort but will still be taking lots of notes!

I've really enjoyed this meme. I've noticed loads of bloggers doing meet and greets so am being naughty and not tagging! Sorry Claire!

Wednesday, 14 March 2012

Rock a Bye Baby - Should You Rock and Snuggle Your Baby to Sleep

One evening whilst Joseph was in hospital I had fed him, winded him, and was snuggling him. He drifted off to sleep. A nurse, who looked 102, came in, waggled a finger at me, and said "don't do that, you must put your child to bed awake or a rod for your own back, you will surely make". I was a bit shocked. I'd never heard of such a thing, as far as I'm aware I was rocked to sleep. Surely once home we'd be breastfeeding to sleep?

But from that day on, I put Joseph to bed awake, as was standard practice on the unit. Nurses didn't have time to snuggle babies to sleep and I couldn't always be there. It all makes total sense, and is probably, aside from allowing mothers to sleep on the unit, as happens in some European NICU, the only solution.

When we got home, I had a ready made self settler. At times Joseph could be a little tricky to get to sleep, he'd be unhappy to be on his own, so I would lie across the foot of the bed and read whilst he fell asleep, and that was it. He'd be asleep within 20 minutes. We did often let Joseph nap on us during the day though. He was a very sleepy baby and often would just drop off whilst sitting on our knees.



Now, looking back, and with a better understanding of what's normal, I feel robbed. I never got to decide how I'd parent. I was given a Gina Ford, bottle fed, self settling baby! It wasn't what I expected, and really, not what I wanted. I guess I should be grateful, but I feel at times we missed out on special time together. I also feel, in a sense, less of a mummy because I didn't get that opportunity to rock him or cuddle him to sleep.

There is so much conflicting advice for parents about what to do, getting your baby to sleep. I have seen this article from Dr Sears linked a lot recently and wanted to share it with you, 31 ways to get your baby to sleep and stay asleep.

I really love this post shared by my friend Claire, it's beautiful, poignant, and still makes me a little sad that that was not my experience. But even for us bottle feeding mamas, the sentiment is true, those still hours of the night/early morning, just you and your baby.

I think it's so important to get to know your baby, what they like, what they dislike, and to be ready to change and develop with your baby. What works today may not work next week. Love and acceptance is so important, we can't make our babies follow a routine if that isn't what they want to do.

I'm not saying that Gina Ford is of the devil, and one shouldn't use sleep training techniques. I think as parents we need to find our stride, and do what works for our family.

Equally, those that rock, that snuggle and cuddle, aren't doing the wrong thing. Babies need closeness, some need movement, and that's ok too.

I just wish I had had the opportunity to choose my parenting style. 

Tuesday, 13 March 2012

Cubby Kit - Great Fun on a Rainy Day or a Sunny One!

You will no doubt have noticed the cute little advertsiement in my sidebar for Cubby Kits, and I wanted to tell you more about them. We recently received one of the kits for Joseph to play with, and for me to review.

Joseph was in one of his moods where he was tired but not sleepy so I suggested we get out the Cubby Kit. "Mummy, what's a Cubby Kit?" he asked, and what a good question!

CubbyKit
Subscribe Now!  ( Cancel Anytime)


There are 2 cubby kits available, one for 3-4 years olds which we tested, and the other for 5-6 year olds. The kit comes addressed to the child in a lovely sturdy box and contains all the supplies you need for 3 activities. Our box was all about outer space.

We did two of the activities, making martians and a lovely picture of the constellations. We have the rocket ship to make another day.

The beauty of the kits is that they contain everything you need for the projects, down to the glue. There are also some extra bits included. The instructions are very clear.

I have to say, since I have had the advertisement many of you have asked if the price is good value. I think it is and here is why. How many of us would love to do craft but are stumped for ideas? Each month is themed and you get three projects which are well tested, and have an educational base. How many of us have the storage space for loads of different craft items? This way you have exactly what you need, no frustrating trips to craft stores for the right glitter or that glue you forgot you would need.

If you subscibe at £19.99 per month you can cancel at any time. Alternatively you can purchase a years subscription for £199.99, effectively getting 2 months free of charge.

Joseph really enjoyed making martians, and burying the eyes in the dough! The homemade dough is pretty much the recipe I use and works every time. It was great having everything, the salt, cream of tartar, flour, oil and colouring pre measured and I just had to cook it.



The picture was lovely fun and Joseph's first experience of sticking pictures with pva glue, certainly at home.

We had an enjoyable couple of hours, and still have a project left!

Monday, 12 March 2012

On My Birthday Meme


I discovered this Meme when Angela at This is Life posted it. She didn't tag me however, I have taken it upon myself to join in as it looks fun!  If you are taking part, the easiest way is to use Wikipedia and type your birthday in the search box. The very lovely, accomplished cake maker, Kate at The 5 Fs has come up with it and invites you to grab the badge and join in her linky.

When is your birthday? June 3

Pick 3 people who share your birthday and what you know about them
Suzi Quatro - growing up, she was the only famous person I was aware of who shared my birthday, and very proud I am too! What an awesome person to share a birthday with!

Wasim Akram - as a teenager I loved (and still do) watching cricket. Wasim was one of my favourite players and I've seen him bowl live, so quick. And another interesting fact, he had career saving groin surgery in Tasmania, at Queenstown hospital, which is very remote, but had, at the time, a very accomplished orthopaedic surgeon workng there.

Kelly Jones - lead singer of the Stereophonics, a band I really like and have also had the pleasure of seeing live. 

Is anyone listed as being born on the same day and year as you, and what do you know about them.
I did manage to find 3, but I know nothing about them!
Bryan Rekar, Oak Lawn IL, pitcher (Colorado Rockies)
Omar Douglas, NFL wide receiver (NY Giants)
Robert Kennedy, cricketer (New Zealand opening bowler 1996) 

List 3 people who died on your birthday and what you know about them
Robert Morley - I remember watching "Who's Killing the Great Chefs of Europe" on television with my mum and grandmother. I recall being sad when he died but didn't twig he'd died on my birthday.
Frances Shand Kydd - the mother of Princess Diana, who I must admit to knowing little about, other than the fact I knew she was Catholic and very devout, and didn't always see eye to eye with her daughter.

Ayatollah Ruhollah Khomeini - as a child growing up in Australia I was starting to become more politically and culturally aware, and Khomeini is possibly the first Muslim I ever learnt about . His image was often shown on television, and I was fascinated by this stern, disciplined man.

List 3 notable events that occured on your birthday

1937 - The Duke of Windsor marries Wallis Simpson
1989 - The Government of China send in the troops to Tianenman Square to crush protesters 
1992 - After a lengthy battle Aboriginal Land Rights are granted in Australia in Mabo v Queensland (1988) 

Tell us about a holiday that falls on your birthday

I've chosen Mabo Day, June 3. It's celebrated as a public (bank) holiday in Queensland and there's a push to have it made a National holiday in Australia, which I fully support. Prior to the Mabo decision Australia was declared to be Terra Nullius - land belonging to no one. I always thought this was desperately unfair and sad, that all the history that existed in Australia counted for nothing, that the land was declared to be empty. The Mabo decision changed everything. So much still needs to change.

 

 Now for the fun bit! I tag:

Katherine @PinkWellies79
Adrian @asnood

Sunday, 11 March 2012

Mother's Day - What Will You Give?

Can you believe it's Mother's Day next Sunday 18th March?

Since having Joseph, Mother's Day has increased in its significance to me. Not just because I am now a mum with a child of my own, but I belong to a community of mothers, from all over the world. Sadly, not all mums have the same opportunities I have had. Every day I give thanks for the medical care we received and the support I have had.

My own mother lives far away, and actually celebrates Mother's Day in May. I often don't send a gift or card but this year I will give a gift in her name that will mean something, not only to her, but another mum that I will never meet.

UNICEF are encouraging us to give a very special Mother's Day gift this year and on their website you will find lots of ideas.

High energy biscuits £16
High Energy Biscuits
 
Provide high protein biscuits for
young children caught up in
emergencies.

The biscuits are filled with
vitamins and minerals providing
vulnerable children with a source
of high-quality nutrition in times
of food scarcity.





Peanut paste for a malnourished child £23.50
Peanut Paste

Your gift provides a
month's supply of
therapeutic peanut paste
- a life-saving food -
enough to bring a
severely malnourished
child back to health.






Magic Milk £12

Magic Milk

Give life-saving, therapeutic
milk for the treatment of severe
child malnutrition. Therapeutic
milk is a milk-based powder
used in emergency feeding
centres, refugee camps and
hospitals.









There are many other gifts, blankets, safe delivery of a baby, weighing scales. I think Mother's Day is a great opportunity to remember and help those mums who live in dire conditions. Just a small donation can make a huge practical difference to these women and their beautiful children.

Please consider buying a special inspired Mothers Day gift from UNICEF

 


Saturday, 10 March 2012

Premature Babies - When Weaning is Not Straightforward

Many premature babies will be introduced and take to solid food in much the same way as full term babies. But for some, weaning will be more difficult with special needs that must be accomodated. The purpose of the post is to raise awareness of these issues. It has been informed by my special mummies, but is not a clinical post or substitute for medical advice.

Today I want to talk to you about weaning when things are not straight forward. There are several issues that can be encountered when weaning a premature baby, but it has to be said that these issues can happen with term babies too.

Severe reflux - all babies are born with immature sphincters, the valve in the oesophagus that regulates the food and fluid travelling down into the stomach. A lot of babies are happy chuckers, some have pain, and in others reflux can be very serious indeed. Premature babies, qutie logically, are more prone to reflux due to their immature digestive systems having to do a lot of work.

Associated with the vomiting and pain is acid build up, like heart burn. The baby may find this is much worse once they are off milk and introduced to solids (although in many cases weaning can actually help babies with mild to moderate reflux)

Swallowing problems - Many premature babies have been on long term ventilation. Some babies can have temporary or even permanent damage that can make eating incredibly difficult. Sometimes this can sit alongside other problems like reflux. Very often parents will be advised to "go back to basics" and keep the baby on pureed foods for longer, and be a lot slower in introducing lumps and textures.

If you feel, during weaning, that your baby is struggling or not making progress, don't hesitate in contacting your consultant or health visitor. Babies sometimes need a referral to a speech and language therapist (SALT) These therapists do more than just help with speech, they can look at functional problems with the mouth and with the swallowing reflex, and sometimes work in partnership with a dietician.

Oral aversion - Some children have had complicated pathways through NICU and sometimes onto PICU (paediatric intensive care units) and have required long term tube feeding and procedures. These children may then be unwilling or unable to accept food or liquid into their mouths at all. Here Carole shares her experiences with her son Luke

Luke is under the care of GOSH London Specialist Feeding and Eating disorder team. Our ultimate aim is to tube wean. My portage worker has been the biggest source of help, the local SALT admits that Luke is an extreme case. We've had to start with the basics. No pressure to touch food, just be near it. Then dry food, handling dried pasta, dry porridge oats, hiding toys in it and getting the dust on his hands. We started off with big spoons (the kind you dish your dinner up with) scooping and pouring the dried food. Nothing went near his mouth. graduated to touching smooth wet food and now Luke will handle messy food, it took us 18 months to get to this stage. next step is asking him to put food to his mouth, lips not even in his mouth. We blow bubbles with straws in milkshake and if he accidently sucks or gets some liquid on his lips then thats a bonus. For Luke the issue isn't about tastes and finding a food he likes (if one more person suggests have you tried chocolate/custard/pear puree/ etc grrr) it about overcoming sensory issues and having to learn what food is because he missed all his developmental milestones (sucking, watching other people eat, spoons, touching and being around food) and had no relationship with food. It doesn't help that Luke has left sided vocal cord palsy so his swallow is never going to be great.
Sensory issues - For premature babies one of the paradoxes with weaning is that we start on actual age, around 6 months.  For a baby born very early, this can mean they are not sitting independently, not touching things much yet, and certainly not handling foods. Imagine everything being fed to you and not being able to touch it. For some premature babies, this is further complicated by underlying issues that cause them to have problems in processing the world around them, and can be symptom of autism (but not always)

Sharron shares her experiences with her son Callam.


Callam, was born at 29 weeks and was not expected to live. He did not breathe for the first 10 minutes of his life. He had total renal failure, a brain haemorrhage and anaemia to name but a few of his problems and was ventilated for the first 7 days of his life. At around 11 days old we were told that Callam had tested positive for CMV (Cyto Megalo Virus).

Callam has lived with a very restricted diet which started from birth with severe reflux up to 18 month of age. He only ate age 4 month puree baby food until the age of 2 years and after this he could not eat mixed textures. The only foods he eats now (age 12) are brown or yellow, coated and with no ‘bits’ in. His main diet is cheese sandwich for dinner and chicken nuggets and chips for tea daily.

Callam has come a long way over his 12 years and things are easier to deal with now as he is starting to try new things but things haven’t always been easy. We have been stared at and talked about and passed judgement on and made to feel like the worst parents in the world.

When he was 2-3 years we would try and ‘force feed’ him as we didn’t know what the issue was then. He could go days without eating and, as a parent, its heartbreaking to see your child not eating and getting thinner, especially when you go to the hospital and see ‘failure to thrive’ on the front of his case notes. We would get people saying “leave him with me, I’ll get him eating” and that would really annoy me as, if that would have actually worked, I would have gladly left him with them. Even his old Consultant said that he would start eating once he started school and saw the other children. Sadly, this wasn’t the case.

Luckily, we found a fantastic Eating Specialist at Birmingham Children’s Hospital, changed Consultants at our local hospital and managed to get a referral there. She suggested various different ways of getting him to try foods including relaxation at age 8 and things have started to improve, although we still have a long way to go.

He has also got a diagnosis of Autistic Spectrum Disorder now and his eating problems are probably because of the ASD but could also be linked to the CMV (Cyto Megalo Virus) he was born with.

My message - If you feel your journey with your baby or toddler and food is not normal and becoming difficult or complicated seek help, but you may need to search for it. A common experience seems to be that Health Visitors, unless you are lucky with a good one, and some are former neo natal nurses, are not aware of some of the complications with weaning premature babies and may not know, immediately, how best to help.

Also, what I want to say is, don't judge. If you see a two year old eating baby food out of a jar, there probably is a darn good reason. And whilst, to an outsider, the solution to overcoming these problems may seem simple "if they are hungry enough they will eat", it's rarely that simple.