Amby Nature's Nest

Following my post about My Favourite Baby Items, was a lovely discussion on my Facebook page about what items we wish we had had. I've invited my friend Carly to talk about her experience with the Amby Nature's Nest. Quite a few of us mentioned if we'd known about this, we would have bought one!

Thanks to Lisa for the photograph

I'm Carly, mum to Liam and Georgia, one with medulloepithelioma & leukodystrophy, the other with suspected Russell-Silver.

In a previous life I was a special-ed teacher. I live with a dog, Jonty, in the city of Cambridge, and I get my kicks helping medics research rare diseases.

I feel I owe a small thank you to the Nature Nest. When my daughter was referred to hospice care after a diagnosis of “general global malaise” and organic FTT*, one of the first things we were introduced to was the Amby Nest: a small off-white sling hanging from a slightly odd looking metal base. 

So loved was it among the nurses,  that a tea break was sacrificed to help us set our baby girl up in it, and (as any self-respecting nurse will tell you) that is not a sacrifice to be taken lightly.Given the off-white nature and the, ahem, circumstances (what was racing through my mind was just how the thing got to be so un-white), I was yet to be convinced of its magic. It didn’t take long before both the magic and the convincing took place.

After gushing to the nurses that my tiny, innocent looking daughter was actually the loudest, most scream-y child around for 50 miles, the nurses were just about to tell me not to be so silly when the tiny darling seized the moment. She woke up, and began to wail to high heaven (for reference, her cry had always sounded much like an unhappy cat). Me: 15, Nurses: Love. Child is in fact devil incarnate (as cited) and I am proved not to be neurotic. However, the nurses were just as keen as the tiny pink ball of screaming, and proceeded to place her in the Nest. The wailing stopped. Birds flew again. Waterfalls continued to flow. 15-all, the nurses had levelled.

It was then that I started to understand just why the Nest was so important and just how useful it would be to us. The importance and usefulness of it was confirmed to me on that first stay, and continued to prove itself during our stay, and then again, later, when we took our baby home for her last few days. The Nest held her in a way that comforted her; a position we had only been able to replicate in slings which had to be wrapped around us and were very impractical for both us and her nurses. With the Nest, she could have the comfort of weightlessness and feotus-ness (note: I’m coining that word), the nurses could have easy access to care for her and I could see her easily to make sure she was safe and happy. She slept in her Nest, in a literal hug, as she would have done in the womb. 

I am one happy Nest-convert. Were I ever lucky enough to have another baby, I’m sure an Amby would be on my shopping list. 

Although, I never did find out just why it was so off-white. 


*FTT = failure to thrive 


Postscript The Amby Nature's nest meets all European safety requirements. However, the Amby was recalled from the US in 2009. Reference here: http://www.amby.co.uk/site/pages.php?fid=0,18

The Empty Desk #dosomethingyummy - Writing Prompt Week 2

I was stunned at the response to my first article in this series. Thank you to all who read and commented. This week Nickie at Typecast has three new prompts. I have adapted one of them. This is very loosely based on an experience I had at school, names and the situation have been altered somewhat. What happens to a family when a child is diagnosed with cancer?  How do siblings and parents cope? I have altered this to what happens to their classmates.

If you blog, why not join in, if you don't blog please share the posts around your networks. Do Something Yummy runs from the 10th -18th of March, click to learn more, and think of something you can do to help. Every little you can raise will make a big difference.

 
Sunbeams dance on the dust particles in the classroom. We all look clean and fresh, new shoes, new uniforms, ready to start another school year. The classroom that has been shut for the summer holidays smells musty.  Grade 3, half of us are still only seven, the other half eight years old already. It seems weird how much everyone has grown over the summer the boys seem so much bigger than me.

As we sit down at our named desks, one is empty. There is a gap where Anna should be. Everyone looks, and goes quiet. Children start to natter, where could she be? Maybe she’s gone home, someone whispers, she’s not from Australia, somewhere else....Holland, South Africa, Zimbabwe, no one seems to remember. Rumours start to circulate; maybe her dad has taken her, has anyone seen her sister?

Our teacher walks in, and very quietly sits at her desk. I have met her before, a kind, gentle teacher. She looks at us all, commanding us to be quiet but without saying a word. Finally she speaks “Good morning children”. We all chant back “Good morning Mrs B”. She reads through the roll call. She doesn’t call Anna's name. Yet her desk has been set up, pens, paper everything where it should be. We all look at one another. 

We can see the teacher seems uncomfortable. She coughs. She gazes out the window at the playground, a eucalyptus tree waving in the breeze, if you concentrate, you can smell its scent through the open window. We are all silent. 

Very slowly and quietly Mrs B speaks. “Children, over summer Anna has not been well. It isn’t easy to explain this to you, but she has leukaemia. Anna is having a treatment called chemotherapy and will be in hospital for a long time”. We are shocked. A boy puts up his hand “will she die?” Mrs B chokes back a tear and says “We don’t know. She might die, this is true, she is in the best place and having treatment we all have to be strong, be positive and support her anyway we can”.

Mrs B gets out lots of paper, and coloured pens, and glitter. We make cards. Butterflies and smiling faces, a few days later we read Sadako and the Thousand Paper Cranes. The girls all get together and start folding beautiful cranes out of pretty paper that one of the Japanese parents has brought in.

School life goes on. Towards the end of the year, Anna comes back. She looks different. Cancer treatment has taken its toll. She wears hats, beautiful, colourful hats. Sometimes baseball caps. The boys steal them and hide them, making her cry. We are all angry with them. We have endless talks from teachers on bullying and caring for one another. Anna is wrapped up in her friends love. We protect her from the bullies. We report them. They are punished. No one can touch Anna, we love her.

Anna tells us about her treatment, months in isolation. That a lot of the time she is not allowed many toys, or craft items. She is bored. This is long before sophisticated computer games, even video is still somewhat of a novelty. She describes endless days of treatment and doctors. She tells us that of her treatment group, all her friends have died. Anna is the only one left. We are sad, but we are grateful, she is here, she is alive.

We learn, so young, the fragility of human life. The way childhood can be snatched in an instant but a disease so unpredictable, so vile, that we are scared to speak its name. Our own health feels fragile at times, could it be us? Could we get so dreadfully ill?

Slowly but surely as years pass; we don’t talk about it anymore. It’s over, for Anna. Every year though, her mum throws a party, a remission party, the family marked for ever. By cancer.

It’s over thirty years now, Anna is in remission, with children of her own.

Anna  -1 Cancer - 0

Call the Midwife - Too Close for Comfort - spoiler alert!

Call the Midwife is a BBC dramatisation of the memoirs of Jennifer Worth, a midwife working in the East End of London in the 1950's. I have been enjoying the series the stories are interesting, and the characterisations very strong. I haven't read Jennifer Worth's memoirs but they are on my to read list.

Last night's episode had two main stories, and it made for sobering viewing. A well-off, fit young woman went to the local clinic, with a headache, and feeling strange. She was made to feel uncomfortable by the other women there, from a different social station to her own, and didn't stay.

A week later she was due to go to her normal consultant's appointment, and her husband was driving her. She had a massive eclamptic fit in the car, and was rushed to hospital. She was 27 weeks pregnant. The baby died, just too small and the lungs too immature. The mother went into complete organ failure and subsequently died.

And yes, I know its a "story" made dramatic for television, but it is based on fact, and for me, was very sobering.

We have come along way in the 60 or so years since then. We have monitoring for every pregnant woman, here in the UK with blood pressure and urine checks standard at every appointment. We have amazing research being conducted all over the UK (and the world) in specialist centres. If the worst does happen we have awesome neonatal care, and acute ante natal care.

Women like me, 60 years ago, didn't stand a chance. The woman may have been saved through timely delivery, but would not take home her baby.

Now we know what treatments can help keep full blown eclampsia at bay. We can care for tiny babies.

However, babies and mothers still are at severe risk of pre eclampsia and it is so important that we are not complacent.

ASK about pre eclampsia - Attend all appointments, support the research, know the symptoms.

My Favourite Baby Purchases

Due to my history of miscarriage, I was very wary about buying baby goods, not for superstitious reasons, but because I was scared that I would have loads of stuff to deal with if things went wrong. However at 20 weeks I bought a posh changing bag and a few newborn clothes. The week before Joseph was born we were given some John Lewis vouchers and we bought a few toys and a bouncy chair, but that was it. I am glad, looking back, that we didn't go out and buy loads as what we did buy was different, I think, than if we had had a termie. Here are my favourite things we bought!

 

This was Joseph's Pure crib purchased from Mothercare. We didn't feel comfortable with a moses basket, as we though the cat might use it, and I wanted him in something that was firmer and more like the cot he was used to in hospital. It made me laugh when I went to buy it, the salesman tried to convince me he'd only be in it six weeks. I smiled and said "no I think it will last longer than you think". He was in it until he was one!

This is Joseph's bouncy chair. I found it so useful and am really glad I bought the one I did. My criteria was bright and non gender specific, and quite simple. It did have a toy bar, but nothing flashy or loud. We used it loads in Joseph's first year, he couldn't sit unsupported until 12 months, so it was great to have, and I'm glad I got that one. It's a Cosatto and I adore their products!

I started looking at slings when I was pregnant, and found a great slingshop in Hebden Bridge (which I think now has gone) and had a very creepy conversation about the benefits of babywearing and premature babies! I really wanted a carrier style, but she convinced me that wrap slings are much better, and I am a complete convert. Joseph was always so snuggled and looked so safe in his sling. This particular one is a Kari-Me.

Three for the price of one in this photo! We bought the car seat at the 11th hour, just before Joseph came home. I was pretty sure I wanted this one, as I knew it was compatible with a number of different pram systems. In a perfect world, I would have used a proper pram or carry cot, but for my husband, with his disability, this was the ideal solution for us. Also in the picture is the Quinny Zapp. As I baby wore it didn't worry me using the car seat on the pram base as he was never it for that long, and we found it very convenient. The third item is the Bumbo seat. I kind of thing that babies shouldn't be encouraged to sit until they are ready, however for premmies who are weaning on actual age, it is much easier if they are sitting up straight and less of a choking risk. I used to plump up the Bumbo with muslins.

The last picture is our high chair, another appearance by Cosatto . I got the highchair once Joseph was 7 months, kindly purchased by the in laws. I had quite a criteria. Adjustable height, 5 point harness, washable cover, and reclinable. I also didn't want to spend an absolute fortune on it. This one fit the bill and was fabulous. The only downside was the size of the base but the new Cosatto 3 sixti is much smaller, so they have certainly listened to feedback from parents.

What baby items could you not live without?

* Totally non sponsored post!

Sometimes Grief - Adapting After Preterm Birth

I read this really interesting article yesterday posted on Facebook. It's title is New Moms May Grieve Preterm Birth, but Adapting Quickly is the Key. It's based on research conducted at the University of Michigan, which followed 74 babies born before 36 weeks gestation.

The main finding of this research is that mothers who have resolved their grief are three times more likely to have securely attached infants. The article does not go on to explain how they measured attachment, which I am curious about, or how they measured if grief was resolved.

I found it interesting that when sharing this on Facebook, one of my fellow premature mum friends commented that she was concerned this would put more pressures on mothers to overcome their experiences and "get over it", for fear of damaging the way in which their child is attached to them. I didn't see it that way, but I see her point now.

So where does that leave us? What the article suggests is that paediatricians work with mothers on resolving their grief, and this has to be taken in context of the US system which is so very different to the UK system. In the UK it is rare that you have a close relationship with a paediatrician, unless you child is quite ill, and many premature babies are not. So that recommendation, I would argue, is not going to work in the UK, unless babies are more closely followed up by paediatricians, which I don't think is practical, given the cost of such a measure.

I found it fascinating that there is no correlation between gestation or the wellness of the mother or infant and grief over premature birth, which confirms what I have said for a long time. What we have in common whether our baby was born at 24 or 34 weeks, is the unknown. No one can tell us how things will be. In our case our consultant wasn't very experienced with 27 weekers and put the fear of God into me that Joseph would never eat, would be in an out of hospital with Chronic Lung Disease and be a generally sicky and difficult baby with long term problems. For me, that was a huge source of grief feelings for me, that I'd failed to keep Joseph safe and he was facing an uncertain future.

 I remember feeling awful in NICU when comforting mums, I would go over and give a new mum a hug when they came into the unit. Often they would ask about gestation and weight, and then feel shocked and guilty that they felt so sad about their own situation when our own was so much "worse". I never saw it that way. No one wants their baby in NICU, not for 3 months, not for 3 hours. I saw it that our grief was the same. Our unit took mainly later gestation babies.

What I think we need to do, as compassionate parents as well as health professionals, is look at how we help mothers (and fathers) with grief. So much of aftercare is left to chance. The baby is well, is discharged, the mother and father are left to carry on. I felt completely on my own with Joseph, and very scared of what the future held. I felt robbed of normal experiences, and quite bitter as to what had happened to us. I also found that my Health Visitor had no interest in us. She said she had no experience of premature babies and she left us to our own devices. I really struggled. I was lucky to have a good GP and a fabulous Surestart centre but it was up to me to fill that gap in service provision. Not every mummy (or daddy) can do that.

I went through all the classic stages of grief as described by Elisabeth Kubler Ross.
Denial - Yes I've had an early baby, but it could have been worse we're fine now. There's nothing to be sad about.
Anger - I had this in bucketloads. I was angry that no one believed me I was ill, angry that my baby could have died. Angry with the whole situation. I was angry at my husband for going back to work, and being so sanctimonious about it all. For a long time I thought he should have taken sick leave and supported us emotionally.
Bargaining - This one was complex for me, but for a while I just wanted to have another baby, to make up for this pregnancy that I stuffed up, that if I could just have a term baby I could feel better about this one.
Depression - Whilst I didn't have classical depression, I was very sad. I felt so sad for the suffering I put Joseph through, for the things we had lost. I felt deep guilt that this was all my fault. And, in my case, this was coupled with Post Traumatic Stress Disorder so spent a lot of time being stressed and anxious too.
Acceptance- For me, this took about a year. I moved through those stages,not chronologically, and not necessarilly neatly, bouncing around the stages, at different times. Once Joseph turned one corrected I started to feel much better, and every time he met another milestone, I started feeling better.

I don't know, whether in terms of the research, this would be considered quick or not as its not covered in the report. I certainly feel Joseph has a strong and healthy attachment to me for the most part. I did have a lot of help from my Surestart Support Worker in the early days, and she worked hard with me to make sure I saw the reality of Joseph and to live in the moment.

I am wondering what we can do to help mothers, and fathers, with their grief. How we can help them get to the point of acceptance. Would more support, closer communities, talking through things with peers and or professionals help with moving through those stages? I think its very important we talk in terms of acceptance, as it is unreasonable for us to ever expect any one of us will "get over it".

I know in my case I was desperate for peer support, and several ladies on Bliss in particular really helped me, but I didn't have anyone I could have a cuppa and a cry with, who truly understood. It's one of the reasons I still blog, in the hope that I can be found, and I can be that virtual shoulder to cry on. I don't do this for money or recognition. The emails and comments and social media messages saying "thank you, I feel so much better for knowing my feelings are normal" is what I do it for.

If you have had a premature baby do you felt you went through grief? Did it resolve for you? What helped you? Would anything additional have helped?

Promoting Products and Resources for Premature Babies and their Families

Hello readers, you will notice that there have been some big changes on Not Even A Bag of Sugar. I've been prompted to look at my blog with fresh eyes. I started to notice that the blogs I favour in terms of reading and going back to have larger blocks of text, less clutter, and have black writing on a white-ish background. Hence, the big change. My sister installed the previous look to the blog and I really loved it, but feel now that I've outgrown it, so thank you Penni for all your help!

I'm planning quite a few more changes, there are two in particular I'd like your help with.

Firstly, I'd like to create a list of tried and trusted suppliers of things that you have bought for your premature or sick baby. It doesn't need to be clothing, or even premature specific. I'd especially like to showcase the small businesses, the Facebook pages, the unsung heroes, as well as the larger companies.

My rationale for this is people often ask me "what can I buy?" "where can I buy it from?" and it will be nice to have resource for people to utilise for either their own baby, or for buying gifts.

Listing will be free of charge, and will sit in a seperate page on the blog. If you have a business that would like to be featured what I would like is the following:

• One picture, can be any size I can resize as required.
• A short (100 words or less) piece about your business and what you provide
• Your weblink or Facebook page details

From time to time I will do a feature post about a business on the page.

The second thing I would like to do is compose a page of resources. A lot of information can be found on websites like Bliss and Tommy's and I certainly include those, but I have become aware there are loads of smaller charities doing some amazing work, and they deserve to be talked about and promoted.

If you are, or know of, a charity that would like to be featured, please let me know, and I am looking for similar information, a picture, a short blurb, and a weblink or contact details.

Please feel free to share this post as much as you like. I want to make it as comprehensive as possible. At the moment most content will be UK based, however I am open to looking at businesses that operate elsewhere.

My email address is notevenabagofsugar (at) gmail.com

Hologic ‘Miracle Unit’ Award - Let's Get Baby Friendly

As any regular reader of mine will be aware, I am passionate about Tommy’s and the work that they do. You might be aware of the Tommy’sLet’s Get Baby Friendly Awards held each year. Voting is quick and easy, and you can do so here.

 

As well as the regular awards, there are 5 additional awards. The one I’d love to talk to you about today is the Hologic ‘Miracle Unit’ Award. 

When I was pregnant, I had a lot of appointments at our hospital. Our neonatal unit was off a main corridor and every time I walked past, I would say a little prayer for the babies and the parents, as well as the staff. Sometimes I would see a transport incubator go in the doors, or come out empty towards theatre, and I’d feel a rush of compassion for those families going through the fear of premature birth, or complications. I never thought for a minute that one day, I’d be on the other side of those doors.

When you have a tiny baby or a poorly one, you place your baby in the hands of these people. The work that they do, their passion and dedication is amazing. With the birth rate increasing, these units are under more pressure than ever before. Premature birth rates are increasing too, and our expectations are high. This area of medicine is truly inspiring, and the work that they do deserves recognition. I believe every unit is a miracle unit.

Tommy’s wants to recognise these units, and invites you to nominate a unit close to your heart for this award.

The prize is amazing, a box of Hologic Rapid fFN® tests, and one year’s use an fFN® test analyser. I know many of my readers have benefitted from this test which can predict the likelihood of a mother entering into pre-term labour.  

To nominate a Miracle Unit, send your reasons why to awards@tommys.org before 20^th February 2012.