Tag Archives: Neonatal Unit

How can health visitors support families after NNU?

Hello, my name is Charlie. I’m a health visitor and practice teacher. I’m also an IVF mummy to a 32 weeker (who is now 5).

I remember my daughter’s delivery as if it was yesterday. My waters began to go whilst I was doing our local child health clinic. I was admitted to hospital and five days later I gave birth to our beautiful little girl, Emma. I was 32+1 and Emma weighed 3lbs, 4oz. Emma and I are very close, she is my little buddy. One thing which still upsets me still, is that Emma was taken from me at delivery and taken to NNU. This was absolutely the right thing for her, but as a new mother, it is very traumatising. Having your baby taken from your arms by her paediatricians was something I wouldn’t wish on anyone.

I had my placenta manually removed in theatre whilst I haemorrhaged four pints of blood. Whilst I desperately tried not to faint, I could see my husband’s face getting paler and paler. He later described the scene as a ‘blood bath’ and that he was worried he would lose me. I knew I would be ok, but from my husband’s point of view, it probably was a bit scary. I could not fault the care that I received. In some ways, it was a blessing having Emma in NNU as it gave me the time to recover and regain my strength.

Emma spent three weeks in NNU. The staff are amazing. They supported me in breast feeding her and were nothing but kind and caring. However, as a mummy, it can be a really boring place to be. Emma slept loads. So other than expressing milk and writing thank you cards, I did not have much to do. As Emma moved through the unit towards discharge, I remember craving to be normal. hv-blog

Finally we were discharged home. I had no experience as a mother, so reverted back to what I knew, my job. So Emma and I went to the child health clinic I used to run. It felt so familiar, but so different. Many of the other mums came over to speak to me. Those who I did not know made comments on how they had never seen such a small baby before. I just wanted to run away. My baby was not something out of a circus show, she was mine and she was beautiful and strong. This familiar, safe place I had been too had let me down. I felt uncomfortable and isolated.

What this has taught me as a health visitor, is that is does not matter what you do for a living, when you are a preemie mummy, you are a preemie mummy. It is ok to grieve for the loss of ‘normal’. It is ok to feel sad that the paediatrician took your baby away and it is ok to feel like you don’t belong and that your baby is different. I am also very mindful of how daddies feel, we cannot forget that they might also grieve and that they too can feel traumatised. Unfortunately we do not see fathers often, but they are a vital part of the family and cannot be forgotten.

We deliver the Healthy Child Programme to all families, but when you’ve delivered early, you might have missed out on the antenatal. We have good relationships with our NNU’s and often visit families in hospital. I know the mothers I have met have been pleased of the company if nothing else. When baby come home, your health visitor will visit you and your baby for your new birth visit. This is an opportunity to explore your feelings and you can discuss with your HV how best she/he can support you. Postnatal depression (PND) affect 1:10 women, but you are statistically more likely to suffer PND if you have had IVF or suffered a traumatic event, including delivering early. HV’s can support you through listening visits and signposting. Please do not feel afraid to speak honestly to your HV. She/he will not judge or criticise. We are just here to support you in being the best parent you can be for you baby. I have put several preemie mothers in contact in my area and they have found great support in each other. If you are keen to meet another preemie mummy, ask you HV is she knows anyone who has a similar story to you. The chances are they do.

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Preemie mummies and daddies are amazing and preterm babies are gorgeous and special. I’m a very proud mother of my preterm and it is true what they say, “Only special people deliver a preterm baby.” 

 

With special thanks to Charlie Woodley, preemie mum and health visitor, offering important words of advice.

Like what you’ve read? Would like to help us raise awareness? Then click the sharing Facebook and Twitter buttons and make The Smallest Things Matter.

Got a story you’d like to share?  email Catriona at smallestthings@yahoo.com

 

 

My NICU Warrior

Guest post, by Tania, sharing her story to raise awareness through World Prematurity Month.

Our beautiful boy was born 11 weeks early on the 7th August 2016 weighing  a tiny  2lb 2. A week earlier I was abroad myself and my husband was out working in the middle east. Thank goodness I listened to my gut instinct and went to get checked at the hospital. I’d had reduced movements over a few days to none at all, so when I called the hospital they told me to come in straight away. I just knew something wasn’t right, little did I know what was to come. Within 20 minutes of me going in my little boy was delivered via emergency c section. Hearing those words “we have to deliver your baby now” at 29 weeks just didn’t sink in. I saw the colour drain from my husbands face as he said I’ll make phone calls to the family. Surprisingly I was very calm as I knew me being stressed wouldn’t help my baby but inside I was terrified, frightened and unaware of what was going to happen to my baby.

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The hardest part for me wasn’t all the doctors or nurses using me like a pin cushion, but the fact of not being able to hold my baby. After delivery he was whisked away. My husband was able to cut the cord and briefly saw him before he was taken to NICU.  I wasn’t able to see him for at least 12hrs after I delivered him as I had an epidural and I had to wait for that to subside.

Having a baby is suppose to be a joyous occasion and of course we we’re over the moon that we had created this little life…but it wasn’t a joyous occasion, we were supposed to be holding our baby and cooing over him, but instead I was placed on a post natal  ward listening to and seeing mothers with their new-borns whilst my baby was in intensive care fighting for his life in an incubator. The first time I saw him I couldn’t help but blame myself – was it something I did wrong? The one thing I’m suppose to do is to care and protect and to a mother, but that was taken away from me. It felt so unfair our baby wasn’t in our hands but instead being cared for by those in the neonatal unit. The only thing in my control and that was helping him to grow was expressing breast milk. I would be in the feeding room constantly expressing milk to be put away in a freezer to give at a later date.

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Each day we would go and see him. We would sit and watch him and over time we started hitting milestones – our first cuddle with all the wires constant beeping and noise of the high flow and everything else. It was a whirlwind of emotions, gradually our little warrior slowly came off each medical device and we moved in to high dependency. He was so strong and so determined which spurred us on to remain strong; if he could do it then so could we. After weeks of being in intensive care and high dependency we were able to move to the SCBU. I was so excited there I could actually feel like his mum and do the things that a mum is suppose to do for him.

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On Oct 3rd 2016 we were able to take our little warrior home and we we’re so excited. He is still having constant check ups with the neonatal team but he has done incredibly well. No-one truly understands how you feel or what has happened unless you’ve been through it. If anything has taught us how to remain strong in the most difficult of times and to never plan anything – he really is our special little boy.

Tarnia Lewis

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If like Tarnia you have a story to share, please contact Catriona at smallestthings@yahoo.com

Like Tarnia’s Story? Would like to help us raise awareness? Then please share on Facebook, Twitter – far and wide!

What to do with 100,000 signatures….

….take them to Parliament of course!

 

Your voice and your story really can make a difference.

When I spoke to my local Member of Parliament Steve Reed MP last year, I invited him to visit his local neonatal unit where my second son Jack was born prematurely. He met with staff and parents on the unit and listened as I explained how my new Smallest Things campaign aimed to shine a light on the needs of families through neonatal intensive care and beyond.

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Steve Reed meets mum Rachel and baby boy Benjamin at Croydon University Hospital neonatal unit

Since then Steve Reed has gone on to host a Smallest Things event in Parliament, where mothers like Sarah Miles spoke movingly about their own experiences through NICU and of their need for longer maternity leave. He has spoken about the campaign in a Westminster Hall debate during World Prematurity month and has gained cross-party support as he now seeks to introduce a new Bill to Parliament.

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The Smallest Things World Prematurity Month Westminster Reception

On October 26th Steve Reed MP will introduce a Bill to the House of Commons proposing extended parental leave for families of premature babies!!! 

With over 100,000 signatures on our petition to extend maternity leave for mothers of permature babies Steve has a lot of support behind him; but he will also need the support of fellow MPs.

Your voice and your story really can make a difference.

Contact your own local MP now.

Share your story.

Ask them to support Steve’s Bill!

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You can find a draft letter you may like to use to contact your MP here – letter-to-my-local-mp

How to find my local MP – www.writetothem.com

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead

Through NICU: 2 becomes 5!

Jade’s triplets were born at 31 +6 by emergency c-section. Below is a poem she wrote to her babies telling them of their NICU story.

Kids before I’m thirty, is what I’d always said.

Kids before I’m thirty, was always in my head.

Lets just try to not try, and then who knows, we might.

Three weeks later pregnant like a bolt out of the night.

I remember waking up in bed, such pain all down one side.

Using Dr. Google left me scared so much I cried.

Seven weeks exactly we went for an early scan.

Sombre like a funeral home full of dreams not gone to plan.

In the room I shakily laid down upon the bed.

Thoughts of loving what I never had running through my head.

I held my breath, I clenched my fists, I kept my eyes low down.

The nurse went quiet all at once and wore a surly frown.

She turned the screen and pointed out three dots for me to see.

Three blinking lights, three little hearts beating inside of me.

I laughed, I cried, I was amazed, and Daddy turned to stone.

No longer would we ever be two people on our own.

“The pain”, she said, “is just your womb stretching out for size.

You need a lot of room in there for growing those little guys”.

And there we were, a family of five, full of wonder and of dread.

Who knew just growing you would leave me cooped up, trapped in bed.

I’m not going to lie to you and say it was all a dream.

Cooking up three buns in you is not as easy as it seems.

Mammy cried and Mammy tried to keep you safe and sound.

Growing day by day I was swollen, stretched and round.

Each little kick I felt from you was a miracle and a fright.

That I might not keep you safe inside was a worry every night.

There are no words to describe what we all went through.

The extra scans and hospital to put off meeting you.

And then far too early for us all water gushing out.

I gave a cry, a fearful gasp, and gave your Daddy a shout.

Dr said you were too early and they had no room,

to care for you three miracles who were coming far too soon.

Mammy taken all alone trying to hold on some more, 

to the Dr’s far away, by now my heart was full and sore.

Sore because I’d failed you and not kept you safe and tight.

Sore because I wasn’t ready for you to come this night.

I felt so guilty that I’d moaned at how my body ached.

That now you were all coming out my buns just partly baked.

But once again you amazed me and held on good and strong.

For three more days you stayed inside but I knew it wouldn’t be long.

My body hurt, my back was sore, nothing was quite right.

A few hours later, a little check, a head was full in sight.

To panic stations was where they went, and wheeled me to the room, 

where you would all be taken out for meeting all too soon.

The next part is not a part I remember very clear.

Too much blood and dropping stats and lots of gloom and fear.

I just recall being comfy and drifting quiet away.

Your Daddy trying to wake me, his memory to this day.

Twelve hours did they watch me and kept us all apart.

Daddy took your photos to hold close to my heart.

And then they wheeled me to you still strapped up in my bed.

To look at you through glass, so many tears I shed.

And that is where I met you, in NICU and in pain.

Knowing that my little life would never be the same.

So delicate and wrinkly, just like a little bird.

So small and perfect you all were, the first, the second, the third.

So many wires, so many beeps, so foreign to us all.

Too afraid to pick you up, scared you were so small.

Fed with a tube and not by breast but milk for you a must, 

Mammy expressing colostrum like actual golden dust. 

And one by one you began to breathe without any help at all, 

And every day became a waiting game for the transport call. 

One by one you were taken away to the Dr’s close to home, 

and once more I sat bereft, just a woman on her own. 

Finally I joined you out of glass and into beds, 

Still connected to the wires, tube fed and lots of meds. 

And so we struggled on and on the hardest time of life.

Leaving you every day alone, my heart hurt and full of strife. 

And finally at three weeks I learned what breastfeeding was all about, 

To hold you close to nurture you, so in love I had to shout. 

To shout about your wonder, shout about your strength, 

To shout about your courage, true fighters breadth and length. 

And eventually the day came when we could take you home, 

To start our new life together we’d never be alone. 

My three amigos, my little clan, my Musketeers so true, 

All for one and one for all, I’ll always be there for you. 

And even though we all came home it’s not plain sailing as they say

But I will be forever grateful every single day.

Grateful in the way you’ve changed me to my very core, 

Grateful that we made it with all that went before. 

I will never be the same, now I’ve met you three.

I never want to be the same, I want to be you plus me. 

And some days will be fantastic and some days we might all cry,

But I can promise you one thing, I will always try. 

I will always try to be the best I can for you, 

And some days I might mess it up and leave you feeling blue.

But I will always love you and keep you safe and sound, 

In a way I couldn’t do it when I carried you first time round. 

I will always try and smile when people point and stare, 

And teach you how to rise above and that you shouldn’t care. 

I worry about when you can understand the silly things they say, 

“Nightmare”, “trouble”, “chore”, “oh bless” a few times every day. 

But they will never understand just what we all went through,

Just to get you where we are a five, no more a two.

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The NICU Roller-Coaster

Jaxon was to be my third child. My precious two pregnancies and labours were as straight forward as can be. My midwife this time was encouraging me to have a home birth! I never felt quite right during this pregnancy, I was catching coughs and colds very easily and felt ill constantly. All Jaxons movements were very low compared to my last two pregnancies, but my midwife said it was “because your stomach muscles are not what they used to be”.

At exactly 24 weeks I had pains constantly all day – I even googled if it was too early for Brixton hicks! Then in the evening I started to bleed so my husband and I went to the hospital.

I was adamant that I was having a miscarriage and repeatedly kept apologising to my husband for losing our boy. The thought that he was trying to come early did not even enter my mind until the Dr said I needed steroid injections to boost the baby’s lungs before he arrived!

Over the next couple of days I remained in hospital; I continued to have pains that would come and go and I continued to bleed which would stop and start. On day 3 I was having much stronger pains which felt very much like strong contractions. By 8pm I literally had to beg for someone to examine me because at this point I was having strong pains every 15 minutes. At 10pm a doctor finally arrived and examined me, she couldn’t hide her shock – I was 6cm dilated. I was rushed to the delivery suite and was frantically worried, how was this happening?

A doctor from the NICU visited me and explained that my son had 40% chance of survival and that the hospital wasn’t equipped to care for 24 weekers. He said my son would be made stable and would then be sent to another hospital. As if someone flicked a switch, my contractions just stopped!

By 10am the next morning they had completely stopped and the doctors decided it would be best for the baby if I was transferred to another hospital before the birth… but the only hospital available was 60 miles away!

I didn’t care, I would go absolutely anywhere if it gave my baby a chance. Two hours after arriving in Sheffield Jaxon was born. He was taken straight to NICU. A couple of hours later we were allowed to visit him. I didn’t know what to expect but despite all the tubes and wires I could tell instantly that he looked like his big brother.

When Jaxon was only hours old we were called to speak to the doctor. Jaxon had suffered from a grade 4 and grade 3 bleed in his brain. He had not responded to treatment for over an hour and his stats were only in the sixties despite being on 100% ventilation. The doctor felt that Jaxon was not going to make it through the night and didn’t want him to die without us holding him. We were advised that the best thing for Jaxon would be to switch the machines off and spend time alone with him in the quiet room until he passed away. I will never forget the sound of my husband’s cries during this time. The most heart-breaking sound I have ever heard.

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We both wanted Jaxon christened before so we waited with Jaxon for the priest to arrive. I spent that time stroking his head, repeatedly begging him to make it saying “come on baby don’t give up”. My husband nudged me – Jaxons stats were rising!

I did not dare to hope. He was christened as planned and afterwards the medical team were amazed that he had started to respond and we were told that for now his machines would not be turned off.

The next few days involved a lot of discussions of what level of disability we would ‘accept’ as Jaxons bleeds were so severe. There was no question for me, this was my boy and if Jaxson surviving involved moulded wheelchairs and hoists I didn’t care. I just wanted my baby to survive.

He continued to improve slowly each day, but it was a long and slow journey. At 5 weeks old we were told that he had hydrocephalus as a result of the bleed and he would need a shunt inserted. The operation date was planned and involved Jaxon being transferred to a children’s hospital in Sheffield. On the day of the operation Jaxon reacted to the sedative used to transport him and the operation was cancelled as it was now too risky. Instead they removed the fluid manually and monitored his head circumference, all the time trying to delay surgery until he was stronger.

He remained ventilated till 8 weeks old and needed steroids to get him off the ventilator. It was like he was a different baby; in just 24 hours he went onto CPAP and then off CPAP and onto highflow. He was allowed the top off his incubator and was transferred into high dependency. We were told that he was now strong enough to be transferred to a hospital closer to home. I had spent the whole 8 weeks in Sheffield away from home – including Christmas.

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Jaxon was transferred to a hospital an hour from home where he remained for the next 8 weeks. His head circumference was slowly increasing yet they still felt he was not strong enough for surgery. His lungs were proving the biggest problem; we were told that we needed to get him onto low flow oxygen so he could have the surgery. His new doctor was not positive at all for Jaxon’s future. He told us that he would definitely have a severe disability; that he wouldn’t go to a mainstream school, that he wouldn’t be able to orally feed and that he had the worst case of chronic lung disease he’d ever seen.

The news hit me like a train.

Once I calmed my tears I took great pleasure in telling the doctor that Jaxon had in fact consumed 6 bottles within the last 24 hours!

At 37 weeks gestation he was finally able to be on low flow oxygen and three days before his due date he was transferred to another hospital for surgery.

We spent the next few days having tests and MRIs. His head circumference was growing very rapidly now and later that week he had a shunt inserted. Afterwards we were transferred back to his previous hospital while oxygen was arranged for going home.

At exactly 4 months old Jaxon came home!

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We were so happy to finally have him home; but he wasn’t quite right though. He was very grumpy and unsettled with his sleep and his feeds. I put it down to having his injections the day before, but 6 days later it became apparent what was truly wrong.

He developed a lump on his head where his shunt was, so I took him straight to our local A&E department. They told me they thought his shunt was either infected or broken and we were blue lighted back to the hospital where he’d had his shunt inserted.

The next few hours were more and more tests and we were told that Jaxons shunt was severely infected. He needed emergency surgery to remove the shunt and he would need two weeks of strong antibiotics via a long line before having a new shunt inserted.

I felt so angry – when was our poor boy going to be given a break from all of this!

He began having seizures and I was told it was due to the infection being so severe. It took a few days to find the right antibiotics to fight the infection but once they did Jaxon responded quickly. Two weeks later he had a new shunt and after another 4 days he was finally home again.

Over the 4 months since Jaxon has been home he has gone from strength to strength and he has been off home oxygen for the last three weeks! He is doing everything he should be doing for his corrected age and is such a happy, cheeky, little boy. His pediatrician and physiotherapist are delighted with his progress.

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There is no roller coaster like NICU, but ALWAYS believe in your baby; they are stronger than anyone could ever imagine!

Aimee Davis

NEW! – “Preemie Proud” Red Book Stickers

Every year 80,000 babies are born requiring specialist neonatal care services in the UK. Their parents face a turbulent journey, often physically and emotionally exhausting and for many it is a journey that will have a lasting impact. I have written about my own experiences as a preemie mum, raising awareness through The Smallest Things campaign about a journey that rarely ends at the NICU doors.

You find yourself waiting to see the health visitor, waiting to have your little bundle weighed.

Sitting in line, waiting your turn, you could be mistaken for any other new mum – a mum who has recently given birth, a mum holding their new baby close.

And yet you’re not a new mum; you gave birth months ago and your ‘new’ baby has already been around the block. You’re already a pro at changing nappies (albeit through incubator portholes) and you have had weeks and months more sleeplessness nights in the bag.

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You remind the health visitor that your baby was born early and as they go to chart their weight you gently remind them about plotting their weight according to their corrected age.

Your baby is 10 weeks old – “Are they smiling yet?” they ask. You shake your head, you’ve been asked this question before.

“He hasn’t reached his due date yet” you reply.

They may not be smiling yet, but your baby has just doubled their birth weight… that’s pretty awesome!

“How are you getting on?” they ask.
“Okay,” you reply quickly, afraid that if you linger on the subject you may break down and cry.

How can you explain that every time you pass a heavily pregnant woman you feel a pang of jealously?

How can you explain that you are still grieving for the loss of your third trimester, the loss of the first precious hold, the loss of a ‘normal birth’ and the loss of weeks, if not months, of your maternity leave?

Do you open up about the flash backs, the worry, the guilt and exhaustion?

How do you begin to explain the pain of having to leave your baby every day.

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As a sympathetic nod to the journey you have been on, a well-meaning health visitor notes that “NICU must have been hard, ….but you’re home now”.

This plays into the common misconception that once you are discharged home from neonatal care your NICU journey is behind you; but for parents of premature babies this is far from the truth.  For instance, we know that 40% of mothers who spend time in NICU experience post-natal depression, (compared to 5-10% of mothers who deliver with no complications at full term); and that more than half of mothers report symptoms of anxiety and post-traumatic stress disorder once their baby is home.

Health visitors, with their specific training, are in a unique position to support the families of babies born prematurely. That is why The Smallest Things are delighted to be launching our new “Preemie Proud” Red Book initiative; a series of stickers that families can use to personalise their baby’s red book. Stickers that will act as a gentle reminder that this mum has been through NICU and may need some more support. Stickers that provide a prompt to use a babies corrected age on their growth chat; and stickers that can form the basis of an initial conversation about the lasting needs following neonatal intensive care.

 

 

 

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Life After NICU – 5 Years on

It’s been five years since my world turned upside down; five years since the shock and the uncertainty of neonatal intensive care.

The birth of my baby boy at just 30 weeks gestation happened quickly and with little warning. I was numb and the process felt surreal – it happened in a blur, yet I still remember those moments as if they were only yesterday.

My baby was whisked away to neonatal intensive. I had become a first time mum, but I had no baby to hold.

I went home later that evening, lost and empty, my baby left in the care of the neonatal staff.

Smallest Things

Like many parents, our journey through NICU was one of ups and downs; one step forward, two steps back. I quickly got into the routine of the unit, visiting each day and attending to cares where I could. I had a baby, but I did not feel like a mum.

 

Five years on – I am happy to say I feel like a mum!

This didn’t happen overnight though; it can take a long time to recover from the trauma of NICU, time to put the fears and worries behind you and precious time needed to bond.

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At home I felt so alone in my feelings of grief, loss, jealousy and anger. There was a place on my chest that ached, where I longing to have had my baby placed straight after birth. A special place where he should have laid his head and where I should have held him tight.

I was alone in my feelings of sadness and worry. I couldn’t relate to the stories or day-to-day concerns of other new mothers who I met.

And most of all… I dreaded the question – “How old is your baby?”

 

Five years on, the memories of NICU are still there;

I think that they will always be….

….but over time they have faded and don’t seem quite so raw now.

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We have made so many more memories together as a family and knowing that my feelings following NICU are shared by others who have experienced the same journey has helped me enormously.

I no longer feel alone in the feelings of grief and loss, feelings that I felt so acutely after coming home. I know now that those feelings were entirely normal and am thankful to all the mothers who have gone before me and who have shared stories of their own.

Five years on, yes the worry and uncertainty continues… but those emotions are manageable now, becoming part of our every-day life rather than ruling it. Yes, I worry about coughs and colds, the ones that have landed us back in hospital, but I try to take a pragmatic approach, we have got through it before, we have been through worse, and we’ll get through it again.

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Five years on I have an amazing little boy who has been making me proud since day one.

His strength and determination has always been an inspiration to me and as I watch him grow and develop the days of NICU seem further and further behind us.

 

download  If you believe that mothers & premature babies need more time together after neonatal intensive care please take a look at our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

Premmie Mum: Things I Want you to Know

Preemie mum, there’s a lot I could tell you; so much I’d like you to know.

I’ve been there, a NICU mum; sat in a state of shock beside the incubator. So I know that the last thing you need is more information or ‘helpful’ advice when all you really want is answers…

Why did this happen? What could I have done? When will I hold my baby? Will my milk come in? Am in pumping enough? Will I bring my baby home? When will my baby leave hospital? Will they be okay?

Smallest Things

These  are the questions that fill your mind as you get to grips with the world of neonatal care, and as much as I’d like to, I simply cannot answer the most important ones and sadly the answers to some of those questions are never known.

What I can tell you though (and believe me when I say it’s just as important) is this –

  1. Take time to notice the little things; with emotions running high you can miss precious moments. Remember the feel of your babies hand as they grip your finger tightly or the shape of their tiny features.
  2. You are not alone. There is a community of parents who have been before you and will be ready to support and advise. Wonderful staff will help you through the most difficult days and your baby will become your strength.
  3. We are ALL mothers. To those who have lost babies we will always remember them and say their name.
  4. Please let others know how you’re feeling. It can be scary to share your emotions, but by letting friends and family know your thoughts they can empathise and better support you.
  5. Ask for practical help. People may ask ‘what can I do to help’ and you may like to share our top ten list of ways to help prem parents in hospital.
  6. Mum knows best. Yes, it’s true! You know your baby better than anyone. Never forget that or be afraid to speak up.
  7. Take time to rest. Yes, I know! It’s easier said than done, but really it is so important for both you and baby.
  8. Be preemie proud! Oh so proud! You will see your baby accomplish things that most parents will never experience. Your baby is learning to breath, learning to co-ordinate their suck reflex and is developing right in front of your eyes. How amazing is that?!beautiful
  9. Preemie mum, know this – you are amazing!
  10. Preemie mum, remember this – you are doing great x

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If you believe that mothers & premature babies need more time together after neonatal intensive care please take a look at our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

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Launching! Recognising the Mental Health needs of NICU parents

images (1)And once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won’t be the same person who walked in”.

Haruki Murakami

Parents shouldn’t have to weather the NICU storm alone. Yet we know, after discharge from hospital, many of them do.

That is why The Smallest Things is launching a new mental health campaign, addressing directly the lack of understanding among primary healthcare professionals of the mental health needs of parents after premature birth.

Having a baby in neonatal care can test you to your very limits. The uncertainty, the shock; the highs and the lows.

As your body recovers from the physical realities of birth, your mind tries to piece together the medical world that surrounds you. People would often ask how I managed to get through our time in Neonatal Intensive Care; “You must have been so strong”, people would say, “You must have been so brave”. The truth is I was neither of these things. Like thousands of parents, I simply had no other choice.

Lost in a sea of emotions, the rituals of NICU soon took over. Expressing, traveling, incubator nappy changes, kangaroo care and hours and hours of watching and waiting. Your life becomes neonatal care and in the agony of leaving my baby each day I would turn to the advice of Piglet and Pooh – “How lucky I am to have something that makes saying goodbye so hard.” AA Milne.

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The sun was shining on the day we left the hospital and I still remember the feelings of relief and hope for the future. The days of NICU would soon become a distant memory – or so I thought.

I quickly came to realise that our journey as prem parents had only just begun, only now the safety net of the neonatal unit and of other NICU parents who ‘got it’ had gone.

Questions about how I’d had made it through NICU became redundant – I’d made it this far because I had to. But I was still battling; just about holding on, trying to make sense of all that had happened. Rather than well-meaning comments from my health visitor such as “I bet you’re glad you’re home” and “it must have been difficult” (as well as other ill-informed comments about expressing, breast feeding and corrected ages), I was crying out for someone who understood. Someone who knew and would tell me that the overwhelming emotions of grief, loss, guilt and jealously, the anger, the anxiety and worry were completely normal for a NICU mum.

PREM

The support for parents following neonatal intensive care is limited and The Smallest Things have received countess examples of where primary health care professionals such as GP’s and health visitors simply do not understand the needs of premature babies and their families. And yet, we know that more than 40% of mothers go onto experience post-natal depression following NICU, and that more than 50% show signs of anxiety and post-traumatic stress disorder. More must be done.

In launching our new mental health campaign, The Smallest Things will call for GP’s and Health Visitors to be trained to recognise and support the needs of parents following neonatal care. Will you help to raise awareness too?

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SIGN NOW! https://www.change.org/p/the-nursing-and-midwifery-council-gps-and-health-visitors-please-recognise-the-mental-health-needs-of-nicu-parents?recruiter=83525408&utm_source=share_petition&utm_medium=email&utm_campaign=share_email_responsive

Just a Little Longer Please: Time After NICU

10 weeks early, my little baby, is with us far too soon.

I’d like to keep you safe inside,

Just a little longer please.

 

The nurse showed me your tiny face, wrapped in a blanket tight.

I reached out to touch your cheek, a mothers instinct strong.

I couldn’t touch you as you couldn’t stay, intensive care was needed.

I longed to shout as I watched the team whisked you away,

“just a little longer, please!”

Your little eyes were open, when we met in neonatal care.

Terrified I reached inside the incubator walls;

a tangled mess of tubes and wires, stick thin limbs so small.

Your tiny hand gripped my finger tight.

I prayed – fight my baby, fight.

 

How could I leave my baby?

I am empty now inside.

Emotion overwhelmed me, consumed with grief and loss.

How can I leave my baby – just a little longer please.

 

6 long days I waited, to hold you in my arms.

Lines and tubes obscured your face, the monitor alarmed.

Ding, ding, ding the ringing went, our time together up.

I whispered to my baby – “just a little longer please.”

3 hours became a golden rule, expressing on the clock.

Now we’re allowed kangaroo cuddles, time just for you and me.

But once again, three hours are up, is it really pumping time?!

I’d hold you close and feel your warmth, sometimes our only cuddle of the day.

I look to the nurse, she looks to the clock – “just a little longer please”.

 

Weeks and months in neonatal care, our journey has been immense.

You’ve grown and you are stronger, but my baby you’re still so small.

Home we go at eight weeks old, your due date still not reached.

 

At home we can be together, no monitors or alarms.

For the first time in forever I begin to be your mum.

I feel the pain we’ve been through, I stop to take a breath.

I realise now, what other NICU mums will know, my journey has just begun.

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More hospital trips and appointments,

Corrected age explained.

Coughs and colds take their toll on little preemie lungs.

 

My boss has started calling, return to work is near.

My maternity leave is over, but please it’s just too soon.

We’re only now just bonding and my nerves are much too frail.

It can’t be time to say goodbye, please just a little longer.

Just a little longer please.


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If you believe that mothers & premature babies need more time together after neonatal intensive care please take a look at our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

Like what you’ve read? Then click the symbols to share on Twitter and Facebook!

Daisy Daisy

Daisy Daisy – my friend at university used to call me that, because she said I looked like the comedian Daisy Donovan and had similar facial expressions. As a care free 20 year old I had no idea that one day I’d be called that again, instead because I’d be milking myself several times a day.

I’d had no breastfeeding versus formula feeding ideals when I was pregnant. I felt quite relaxed about the whole feeding thing. As a formula fed baby myself I knew that it wasn’t this big evil devil food that it is made out to be – I had turned out OK! But I was quite open to giving breastfeeding a go, although I’d had a strict word with myself to never get stressed over it. I’d had so many friends who had been truly miserable during those first few weeks, battling with breastfeeding and an inconsolable baby. I was not going to be like that. I was not going to be stressing about milk production. Not me. No way. And then I had a premature baby.

Emma NICU

Less than an hour after my 29 weeker was born, having been resuscitated and rushed off to the neonatal unit, me laying on the theatre table amongst this aftermath of chaos, my poor sliced up womb now out on my belly being sewn back together, the neonatal sister burst in; ‘Michelle, were you planning to breastfeed? We need to know for the care plan.’ My husband and I just looked at each other in bewilderment, each looking to the other for the answer to the question. It was my husband that answered, ‘Erm, we think we were going to do a bit of both?’ I had no idea at that point the direction that my breastfeeding journey was heading, instead I had images of a tiny baby suckling at my breast the next day!

It starts with the hand expressing. I was shown this technique by about three different midwives until I was shown the correct technique. I managed to get my first lot of colostrum on the second night, 0.5ml if I remember rightly. I felt like a superstar. I still at that point, had no idea about the pump. I had signed the consent for donor milk, which you don’t even think twice about, because by this point you know how vital it is that your tiny baby has breast milk. It is only now I sit and think about the donor milk that I feel upset that my baby had another woman’s milk in her first few days of life. That was certainly not part of my ‘relaxed about feeding’ plan. I carried on with the hand expressing for two more days when the neonatal sister mentioned the pump. Because I was so tired from all the medication I was taking, as well as my three litre blood loss, she said she would show me the following day.

The following day we arrived to discover that Emma had moved from ITU to HDU. Although just two doors down it was like a different world. Different nurses, different babies, different noises and beeps. I felt immediately on edge, as we had just started to settle in to NICU life, and now our routine had changed. I should have felt elated really, Emma wasn’t sick enough for ITU! But now it was all different. I know now that the sullen and stressed nurse who showed me the pump was brand new herself. It was five minutes of ‘this is how this goes together, use this setting, turn it up as far as you can manage.’ And that was it. I just didn’t know better at the time, I really thought that was it, so I just got on with it. I will never ‘blame’ the nurse for it, but I really think that was one of the main reasons why I always struggled. My milk had ‘come in’ that day. I think I got about 10 or 20 mls. I was told that was brilliant, and so I just carried on. It was so painful that first few times, feeling my wounded insides contracting with every pump, I’d often be in tears in the express room.

Expressing every 3 hours, 8 times a day and during the night is really, really hard work. In the early days I didn’t really take notice of the amounts, I just expressed, almost in a robotic fashion. It wasn’t until I was out of that initial NICU ‘two week fog’ that I started to take notice of what I was actually doing, and also what everyone else was doing, and that’s when the ‘express stress’ began.

The stress starts when you notice the amounts other mums are getting, and then you compare it to your piddly amount in the bottom of the smallest pot. I saw mums with the super duper large pots full to the brim. I also noticed the freezer, jam packed full of milk from the other mums. Why wasn’t I getting these amounts? ‘Because you are anaemic. Are you eating enough? Are you drinking enough? Are you stressed?’ Of course I was stressed, I delivered my baby at 29 weeks, nearly lost her, and now we have to exist in this neonatal unit………Of course I was stressed, and not eating enough, and not drinking enough. I was also hugely jealous of my husband, who got much longer cuddles and much longer quality time with Emma, while I was always rushing off to the expressing room.

I started carrying a huge bottle of water around everywhere I went, eating flapjack like it was going out of fashion, smelling like curry due to my intake of fenugreek tablets, and turned the pump up as far as I could possibly manage. Bad move. Doing that results in horrendously cracked and painful nipples, and eventually, mastitis. This meant that when we started encouraging Emma to latch, it was eye wateringly painful for me. I looked at picture of her while expressing, I expressed by the incubator, I sniffed her blanket like I was told to, I ate a box of ‘lactation cookies’ sent to me by my lovely friend, but nothing worked.

breast feed

Twice a week we would get so excited for weigh day, but that excitement then always turned in to anxiety for me. Emma was doing so well, gaining weight like a trooper, but with every weigh day came an increase in milk requirements, meaning I needed to express more and more, and I was still struggling. My ‘personal best’ at this point was around 50mL, I was still on the small pot, and it was really upsetting me. My friends talked of a ‘let down’, of feeling full and empty, but I felt none of these things, and therefore I felt like I must have been doing something wrong.

We continued with the breastfeeding as well as the expressing. Emma did so well breastfeeding and I was starting to enjoy it, until she decided one day to stop breathing while feeding from me – enough to put a halt to the most successful of breast feeding journeys! I decided then to just concentrate on expressing what I could, and we introduced Emma to taking the expressed milk from a bottle. She took to it like a dream, and I managed to just about keep up with her milk requirements. I would still put her to the breast occasionally, and I loved it, but was petrified she would stop breathing again.

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Once home, and having battled with mastitis twice, nearly resulting in an admission for intravenous antibiotics, I decided to stop expressing. At the time I was excited to stop and feel freedom from the pump, but once stopped I felt really sad. I missed seeing her latched on to me, her little face looking up to mine. But I knew that I couldn’t be ill again and look after her, especially now my husband was returning to work. She had breast milk exclusively for nearly 8 weeks, and although I was sad to stop, it is more than I ever imagined I would do when I was pregnant, and for that I’m pretty proud of myself.

This expressing and breastfeeding battle is one felt by many mums of premature babies. Your body isn’t expecting to start producing milk so soon, that’s the first battle. And then you don’t feel all those lovely baby hormones they tell you about, as you have very limited skin to skin time with your tiny baby, and they very rarely latch straight away, so you don’t get that natural increase in milk production. You are stressed, confused, bewildered, guilt ridden, tired, and terrified that your baby may not survive. Is it any wonder that so many have difficulties expressing?

I look back and wish I hadn’t felt so stressed over expressing, as it seemed to dominate most of my time and thinking during the days in NICU. I also look back and laugh a little, knowing that I went against everything I had felt so strongly about, but how can any best laid plans come to fruition when your baby decides to make an early appearance?!

 

Our Top Ten New Year Resolutions!

  1. smallest thingsMore guest blogs! We love hearing your stories and sharing experiences is a great way to
    raise awareness and support other NICU parents. If you’d like to share any part of your story please do get in touch with Catriona at smallestthing@yahoo.com
  2. In 2016 we’ll be focusing on support for parents following neonatal care.
  3. 15,000! Before we hand in our petition in the spring we’re aiming to reach an amazing 15,000 signatures – with your help we can do it! If you haven’t already signed our petition to extend parental leave for families affected by premature birth please do and don’t forget to encourage friends and family to sign too!
  4. To shout about the Smallest Things, raising awareness of a journey that does not end at the NICU door, speaking to hundreds and thousands of people.
  5. Dads Do NICU too! In 2016 we’ll be including 11351121_1605702686352890_8034685534623854660_n (2)more stories about fathers of premature babies and their journeys through neonatal care.
  6. To provide a community space for Smallest Things supporters, professionals and parents on our Facebook page. Our Facebook profile is growing everyday and we hope to continue posting news, stories and information all with the aim of raising awareness.
  7. To take our petition to Parliament!
  8. To speak with health visiting teams, discussing corrected age and the psychological needs of families post NICU.
  9. More MPs! We’ll be speaking to many more MPs this year, asking them to champion the Smallest Things and needs of NICU parents in Parliament.
  10. To set up a national network of volunteers! 2015 was a great year for the Smallest Things, but to make 2016 even bigger we need your help! We will be launching our volunteer’s network in February… watch this space.

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Fading memories: A NICU World

Parents of premature babies often describe themselves as being on a rollercoaster journey, lost in an environment they don’t recognise or even knew existed. Every birth is different, but the reality of having a baby to soon is very different to any other experience; a reality where the planning and anticipation is dramatically shattered by a sudden arrival and where a mother has to leave her baby everyday.

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Life inside a neonatal intensive care unit is unlike any other environment and is far removed from what could resemble anything like parenting a new born. Parents sit beside incubators housing tiny and fragile lives. Monitors flash and beep, whilst the sound of air fills tubes inflating the smallest of lungs. Mothers embark on three hourly cycles of expressing; feeding a baby they are not yet able to hold. Fathers split – caring for mothers recovering from often life threatening illnesses or surgery, caring for siblings at home, managing work commitments and spending precious time with their new born in NICU. Relatives are unsure of how to help; friends are unsure of how to celebrate a new but fragile life and parents are unsure of how to be mums and dads in this alien world.

The neonatal unit is a special place, a place where some say miracles happen. Yet it is a world hidden away, not one you could accidently stumble across and with little known about the environment unless you have lived it. For those who have journeyed from room to room, from NICU to SCBU, your experience can be a lonely one and the after care isolating. Whilst NCT groups discuss sleeping through the night, NICU mums worry about making it through the night.

The sounds, smells and even the feel of a neonatal unit are quite unique; a warm sterile environment where parents wait quietly while nurses hurry by. The background hum of buzzing machines fills the air until suddenly interrupted by the ding, ding, ding of a monitor alarming. Your heart begins to beat a little faster. The rigorous routine of hand washing and the smell of soap. The feel of a tiny nappy upon paper thin skin. The delicate wires that mingle with hard plastic tubing, and the feel of the Perspex incubator box. These are the sounds and smells of the neonatal unit. These are the sounds and smells you remember.

The days of neonatal care remain with you and in an instant you can be taken back. It is a journey that for many parents continues long after discharge until finally the NICU sounds and memories begin to fade

Smallest Things in 2015!

As we begin to set out our plans for 2016, make our New Year resolutions and look forward to what this year will bring, we reflect for a moment on what a year 2015 has been!

2015

Launched in June, our petition to extend statuary maternity leave has reached more than 11,000 signatures and has received national press coverage both in the papers and on the radio!

Our Facebook page has continued to be a hub for all things Smallest Things, with over three and a half thousand supporters reaching a wide audience every day – lets keep reaching thousands more in 2016!

On the blog, ‘Dads Do NICU’ was one of my personal favourites; highlighting the journeys taken by fathers and bringing to the foreground their caring role in NICU. Kangaroo cuddles and skin-to-skin with dads are some of my favourite pictures of 2015 and are worth another look!

Our most read piece, and by quite some way, continues to be ‘PTSD: The hidden cost of NICU’. If raising awareness of the lasting emotional impact of a premature birth is one of our aims, then this article is certainly helping to achieve that. Recent comments on our Facebook page, left by mothers years following premature birth, are a real eye-opener and sum up the vital need to raise awareness and the urgent need for more support for parents of premature babies. You can read their words and add your own here.

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Taking The Smallest Things to Parliament! In September Croydon North MP Steve Reed visited the Croydon University Hospital neonatal unit and is now championing the needs of premature parents in parliament. Speaking in a Westminster Hall debate for World Prematurity Day, Mr Reed raised The Smallest Things campaign to extend paid parental leave and highlight our 5 reasons why this change is needed. We were delighted when Health Minister Ben Gummer MP stated he would look into this very issue. Mr Reed also hosted a Smallest Things reception in Parliament and it was a great pleasure to meet many of you there. Mothers Ije and Sarah spoke movingly about their own experiences of premature birth and their ability to return to work once they were home. Sarah spoke moving about her twin girls Eva and Charlotte and their story remains a powerful reminder of why this campaign is so important.

The end of 2015 has ended on a high! With great surprise I was humbled to find myself alongside other amazing women long listed for the 2016 Tommy’s Baby Charity Mums Voice of the Year Award. It is a fantastic recognition of what The Smallest Things aims to do; giving parents a voice, an opportunity to share our experiences and to say loudly that the NICU journey does not end at the NICU door.

Saving perhaps the best til last! On the 30th December we had an opportunity to speak to millions of Radio 5 Live listeners as Sarah spoke about her beautiful daughters Eva and Charlotte and I explained the need to give families of babies born too soon more time through extended parental leave.

With your help and support we have made The Smallest Things matter in 2015 – thank you!

Catriona

radio 5 live

Sarah Miles and Catriona Ogilvy Radio 5 Live

 

I’m signing because…. “Time is precious when you have such a little one.”

Thousands of you have been telling us why you are signing and supporting our petition to extend maternity leave for mother of babies born too soon. Here are just a few examples of why you are signing and why you think it is so important for mothers of premature babies to have more time. Please take a little time to read x

“Because 2 months sitting in a hospital isn’t maternity leave. Anyone who can’t afford to take a long time off work faces losing precious time at home with their children because they can’t afford to take more time and have spent the time they could afford sat next to an incubator, unable to hold or even touch their own baby for large parts of that time.”

“I have had a premature baby i feel robbed as I cannot get to see him daily and my pregnancy was cut short so returning to work early would just be extra heartache!”

“My son was born at 25 weeks (15 weeks premature). We spent 5 months in hospital before we could bring him home. Even since he’s been home he has needed multiple operations and we have been restricted on what we can do due to lowered immunity. He is still oxygen dependant and I have suffered from anxiety disorder as a result of everything. I have to return to work due to financial strain as my husband is self employed. To have a longer maternity leave would mean I could spend the time with my son I never got for the first 5 months. A time which isn’t dictated around hospital stays/visits. To just be a normal mum.”

“My baby was 16 weeks early and have to travel 60 miles to Nottingham to see him we have been there 115 days and still waiting to get closer to home this has been the most stressful journey and mums who have prem babies need extra time off as their journey of being a mum hadn’t begun until they get home.”

“My son was born 11 weeks early..as well as worry about my son..extra worry about finances was awful.”

“We had a baby born 11 weeks early and it crippled us i lost my job because of the time i had taken off. We racked up huge debts on credit cards and 9 months on still struggling immensely to keep a roof over our heads. Something needs to be done to help other familues going through such a traumatic time.”

“I had a premature baby, the time spent in scbu is not the quality time other mothers spend at home with their children. Our time at home doesn’t start for weeks, even months later- we have been sitting next to incubators willing our babies to get better while babies born to term are being cooed over in their prams. Our babies often have health issues that continue after they leave hospital which means poorly spells and hospital visits which all eat into our precious maternity leave. Let’s make this fair!!!”

smallest things“I’ve seen at first hand the impact of having a prem baby as I work in a neonatal unit. The real bonding process only starts properly once the baby goes home.”

I’m signing because, “Time is precious when you have such a little one.”

If you agree please sign and share our PETITION to extend maternity leave for mothers of premature babies – SIGN NOW!

Too soon, too early – this family needs more time

Zara family

My husband always said I planned my pregnancy like a military operation. We got married in May 2014, got pregnant a couple of months later and our baby was due in April.

We knew what were going to call our baby from before I even fell pregnant. I did everything right, watched my diet, got my husband to give up smoking, took his and hers vitamins and joined the gym.  When I got pregnant I convinced my husband and we moved from our flat into a house. I have 14 baby apps on my phone and joined numerous baby and pregnancy groups on Facebook!

I draw up a timeline and planned what to buy and when. My husband and mother were going to be my birthing partners and we were going to attend parent craft classes. I was proactive in planning my maternity leave. I’d set deadlines to wrap up projects and had the date set for my mother to arrive from Nigeria to help.

I’d planned my maternity leave based on what we could manage financially. I was the main earner and luckily through my work would receive 6 months full pay as statutory maternity pay alone wouldn’t cover the bills. The plan was to go back once my 6 months full pay was exhausted and my husband, who was on a zero hour contract, would have more flexibility to work part time to look after the baby and save on childcare costs.

My pregnancy was not stress free. I had nausea throughout and felt very tired; but despite that I revelled in the fact I was going to be a mother, loved the cravings and enjoyed the weird and wonderful things that came with being pregnant. It was tough, but I wanted to feel pregnant.

I was 24 weeks and everything was going well, I just felt tired. I saw my GP who signed me off work to “catch my breath”. Apparently the stress of moving house and the Christmas hype had got to me.

On the Thursday and Friday night (1st and 2nd of January), I’d woken up feeling more nauseous than usual and with a bad headache. My husband insisted I saw my nurse. I dismissed it, but he’d been reading his “Pregnancy for Dummies” book and this is the post I put up in one of my pregnancy Facebook groups:

“My husband, who is definitely not a doctor has diagnosed me with pre eclampsia. I’m literally being dragged to the walk-in centre now. I’ve had a bit of a fever and sickness and diarrhoea for a couple of days. I’ve told him it could be something I’ve eaten and not baby related. But noooo! ! He is checking that we have enough stuff in the delivery bag, pads, comfy clothes etc. If I wasn’t so cold and felt so ill I’d be laughing – 27 weeks pregnant. Talk about over reacting!”

Two hours later, this was my post to the same group:

“Hubby was right. Baby will be here early apparently. They say I have pre eclampsia. I’m in shock obviously, done all the crying. The only way to cure pre eclampsia is to deliver the baby. Please pray for me.”

zara iiSo that was it, my baby was born at 27 weeks gestation.

That was not in my plan.

It was not on my spreadsheet.

Chizara Maya was born on the 5th of January weighing just 1lb 13oz.

A lot of what happened after that is still a blur. I went into auto-pilot and I’m not sure I have come to terms with it yet. I still cannot believe what happened. We spent 9 weeks in hospital and before I knew it my mother had abandoned her job and arrived in the UK, but my husband had no choice, he had to keep working because of his zero-hour contract.

We finally bought our daughter home after 9 weeks in hospital. I’d barely lived in this house and now I had a baby at home with me. We weren’t prepared. I wasn’t ready. We somehow managed to sort out a cot, the pram, the car seat, and all the other baby things you need before coming home. It was not how I’d planned.

zara and mumZara came home on oxygen. We had nurses coming to the house twice a week at first, as well as the health visitor and Physiotherapist. I made sure she was fully breastfed by the time we came home, but there was a lot to grapple with. I was suddenly very anxious. Zara was now home and not in hospital where she was solely in their care. I couldn’t sleep. What if she stopped breathing? What if something went wrong? The fear was palpable. I had no idea what I was doing. We didn’t get a chance to go to parent craft classes. I had no idea what to expect. I didn’t even know how old to tell people she was. Surely by 10 weeks of age she should be able to hold her head without support, she should be able to roll over by 12 weeks of age… but at this time, my child was not even meant to be born. I felt conflicted and confused. I was grateful that she was well enough to come home, but I couldn’t help feeling cheated out of time and then felt guilty for feeling that way.

I finally learned to relate to my daughter based on her corrected age. I had to recondition my mind entirely. Only then did I begin to relax and allow myself to watch her grow and almost enjoy the stage we were at. She had smiled at us, she was holding her head up and things were getting better in my head. I could actually see that my child was thriving.

Zara

Imagine my shock then when she was about 11 – 12 weeks and I started to hear from work about returning! I had made my original plans thinking my baby would 6 months old, not a tiny 12 week old. It dawned on me that even though my child was medically and developmentally 12 weeks old, she was born 6 months ago. I was torn. How could I leave my 12 week old baby? I was in no state mentally to go back to work. But we have bills to pay. I wasn’t sure what to do. I didn’t want to miss those small but mighty milestones in my baby’s life and I was only just beginning to sleep again. She is a breastfed baby and if I go back to work now would I have to start weaning her off breast milk? Would she take a bottle? She is still on oxygen at home…she still needs me.

Here come all the feelings of being cheated again and that old friend anxiety. What do I do?

I have decided to stay off work until Zara and I are ready.

How will we pay the bills? I don’t know.

My husband has been working non-stop since Zara was born, but I was the main earner and we need my income.

We will have to come up with something. I’m not ready, Zara’s not ready. It’s too soon.

With thanks to Ije McDougall for sharing her story

If you think that statutory parental leave should be extended for mothers of babies born too soon, please sign our petition – SIGN NOW!

Zara and dad Zara iiii Zara iii Zara i

Daddy’s NICU Twins

11351121_1605702686352890_8034685534623854660_n (2)Guest post written as part of our “Dads Do NICU” week, with thanks to Darren for sharing his story….

On September 23rd 2014, my partner and I went to the hospital for what should have been a routine pre-natal appointment. Every appointment was a terrifying experience for me, in part due to the loss of a child 2 years earlier, but also because we’d encounterd difficulties with cord flow and Inter Uterine Growth Restriction (IUGR). Sarah had already been in hospital due to the  IUGR and had been given steroids to help with the babies lung development should they come early.

We were both sitting in the waiting room becoming increasingly anxious.

Suddenly, out of the corner of my eye, I spotted our consultant. She was running around in that headless chicken way we’d come to know and love from those who are important to us. I don’t think she spotted us initially and it was on her return trip that she made her way through the waiting room to tell us that she was trying to arrange our c-section for that coming friday. After dropping that little bombshell she dashed off leaving both Sarah and I with our jaws on the floor.

This was really happening, and sooner than we’d expected!

It’s not that we weren’t prepared – we were.

Everything we needed was set up, ready and waiting at home; but at that moment we realised WE weren’t setup. The nerves kicked in and I remember the feelings of terror. I was shaking. When we went in for the appointment I don’t think either of us could take anything in… and judging by the amount the consultant wrote down for us and the bundle of literature handed to us, I think they knew we weren’t taking anything in!

Friday the 26th of September – we sat waiting to go up to theatre. We knew it wouldn’t be long now before we were parents again, but we also know that this time was very different, unrecognisably so.

At 11:07am, baby Marnie was born at 33 weeks & 5 days, weighing a very reasonable 3lb 10oz. Fifteen seconds later Faye came into the world weighing 3lb 9oz. Faye needed a little help breathing but once she got going, she did just fine. The girls were brought over for us to see before being whisked away to neonatal care.

Now the hard work really began.

Neither of us had ANY experience of premature babies; we were both equally terrified. I went to see the girls that day – Sarah wanted me to check on them and I needed to know they were ok.

prem twinsI walked through the hospital, taking the trip to special care to visit my daughters for the first time. They were both in incubators with lots of wires and tubes, or so it seemed. Looking back at the video it’s not nearly so daunting, but in that moment it was terrifying. We’d thankfully had a tour of the unit beforehand so we had an idea of what to expect and I’d highly recommend a tour if you know you’re likely to have a NICU stay.

Faye was sleeping on her back in a “daddy” position. She didn’t stir when I spoke to her through the plastic of the incubator. Marnie was 2 incubators down sleeping on her front in a “mummy” position. I took pictures and videos and went back to show Sarah. They helped to put her mind at ease.

Later that evening, with the feeling returning to her legs, Sarah was ready to meet our daughters properly too. Having seen the video and pictures she had a idea of what to expect, but I think it was still a shock when she saw the girls for the first time in NICU.

The next day Sarah was able to have some Kangaroo care (skin-to-skin) time, which is both extremely important and good for mother and baby. That’s not to discount the importance to daddy, but to be frank and honest, I was utterly terrified. Here were these little fragile human beings with no body fat and lanugo (hair on the babies skin that would normally be gone by term) and I was simply scared.

By day 3 we were becoming a little more at ease and we both changed a nappy – I had my mind blown! The girls had no body fat and because they had no body fat, they had no bum cheeks!

Dads do NICUAlso by day 3, I was a little more open to the idea of holding them and my heart completely melted. Any apprehensions I felt when being handed my two miracles was gone the minute I held them. I spoke to them and as I did each one looked up at me. My heart melted every time I saw that and still does when I look over the pictures of the occasion. I also believe that my bond with my daughters was established at that very moment.

We were a lot more at ease by day 4. Partially because the girls were out of high dependency, but also because we’d begun to take a more active role in their cares.  We went in for 5 hours a day, which in the grand scheme of things isn’t a long time, but you have to consider that all the time the babies are out of their inubator and awake, their bodies are burning critical calories that they need. Outside this time Sarah and I made time for each other, making sure that despite the stress and trauma our relationship stayed strong.

NICU dadOur girls spent a total of 16 days in special care and by the time we left we were offering guidance and support to other new parents -We’d gone from terrified parents to NICU experts and I’d like to think that those we advised passed that support on to others, just as it was passed on to us.

 

 

 

The thing I remember about NICU is…. #DadsDoNICU

11351121_1605702686352890_8034685534623854660_n (2)As part of our “Dads Do NICU” series, we asked fathers to describe their memories of neonatal care…  Thank you to Trevor Greenway-Clissold who shares his memories of his journey through neonatal care with daughter Ophelia.

When I found out our baby would be born early I felt…  helpless. There were suddenly doctors and nurses in the room all doing dozens of tasks, I wanted to be able to do something to help my wife and our daughter too.

The thing I remember about NICU is… the sounds. I can still hear all the beeps and tones of countless machines and monitors, the sound of the lift and doors, all those little triggers.

I felt like a dad when… they told me we had a daughter and we gave her a name.

Who were you with when you first saw your baby in NICU? – I was on my own. My wife couldn’t be transferred after an emergency casaerean and was kept at our local hospital. She told me to go with our daughter so she wasn’t alone.

first hold, day 5

first hold, day 5

How long was it before you first held your baby? – Five days

What advice would you give to other NICU dads? – Everyone deals with things in different ways, and partners will as well. Just be present in every moment with your baby, write things down, take photos, anything to help you remember things because they change so quickly. Find little things you can do that can make you feel a part of everything that’s going on. Accept help, family will feel helpless as well, especially with very limited visiting, just doing some washing or cooking a meal, little things that give you more time to focus on the important things.

A NICU Dad’s experience

11351121_1605702686352890_8034685534623854660_n (2)Guest Blog – written by Jonathon Burke, Ethan’s dad,  as part of our Dads do NICU week 15th – 21at June 2015…

Having your first baby is scary, and that’s when you think everything will go to plan.

To say I was a nervous expectant parent would be an understatement. I’d never held a new-born (without it being placed in my lap), never mind changed a nappy or give a bottle. Special precautions were taken like the purchase of a snuggle bundle so I could be confident picking up my baby whilst providing the right head support… all this when I thought I’d be getting a regular sized baby (in fact, we thought they’d be larger than average on account of my height).

Reality came close to 27 weeks when my wife, Tara, fell ill – blood pressure was a little high – “come back tomorrow sometime and we’ll check it again” they said.

Rather than endure the queue in the maternity outpatients, we headed over early on the Saturday morning… “Shall I take an overnight bag?” Tara asked but I dismissed the idea – we’d be home in time for lunch.

We weren’t.

Tara was kept in and steriods administered to help with the babies lung development. I said all the right things (I think) but inside I was convinced it was all a false alarm, things would settle down and I wouldn’t get to see my first born for another 3 months. Over the weekend Tara ’s health deteriorated further and I finally understood on Sunday evening that I’d be meeting my baby on Monday 17th November (as it happened – World Prematurity Day).

Ethan arrived by ‘C’ section at 14:21 on the Monday in a very congested operating theatre. I’d been there by Tara ’s side until things went awry and I was ushered out of the room – in the dark about the health of my wife and unsure if I’d seen a baby amongst all the hospital staff. I didn’t have to wait too long for news – “It’s a boy – He’s been taken to NICU.”

My wife came back to recovery but was too ill to make the journey to the other side of the building where Ethan was being cared for, so I made the trip alone. I couldn’t make my mind up whether to walk quickly or slowly as the excitement of having a son was tainted by my worries over what I was going to see. What I found was a strange, almost alien like red/purple 800g dot in a white eye mask and a pink wool hat, no bigger than my hand with a myriad of wires and tubes as attachments. But he was also the most amazing thing I’d ever seen.

Ethan

The changes in Ethan over the first few days were remarkable. His colour changed, he gained weight and moved off full ventilation and onto CPAP (continuous positive airway pressure).  Tara’s recovery was slow and it would be a couple of days before she was able to make the trip to see Ethan herself. Then further illness kept her away for another week so it was tough being the conduit for information.

Those early days went by in a blur… I was conscious of the fact so I started to make notes so I could keep Tara and the family informed… the demand for information got greater as more and more friends and relatives heard of the early arrival so we decided a daily e-mail “blog” wold be the best solution and I took up the mantle.

Written from Ethan’s perspective, it gave me something to concentrate on and helped while away the lonely hours sitting by his incubator. It also gave us the opportunity to put a positive spin on how Ethan was doing and, how we were all coping.

Looking back, I think I did ok; the nappy changing fear disappears quickly when you are having to do it through a porthole with a nurse or two watching on. Similarly, the emotion of his first trip out of the incubator and onto my bare chest is something that I’ll never be able to think about without being brought to the brink of tears.

Kangaroo Care

Kangaroo Care

You find yourself easily falling into a new routine – making your way in to the hospital in time for rounds (remembering always to bring drinks and food to sustain you through the day), cares, kangaroo time, more cares, visiting time, cares again before heading home for a late dinner and bed. Days of the week don’t matter anymore – the only clue that it’s a weekend is the change in traffic getting to and from the hospital.

 There are good days… the excitement of his first poo, the day he had a bottle for the first time or makes that momentous move from the incubator to a cot.

Inevitably, there are also the not so good – the call in the night “advising” we come in followed later by chasing an ambulance to a new hospital… strange new environments, new doctors and nurses and new procedures.

I don’t know the stats but I’m sure in most cases the good outweighs the bad. In our case, after 88 days, Ethan got his first ride in his car seat out of the hospital and home.

Feeding HimselfNow 7 months old, he seems to change on a daily basis – something new everyday like rolling over, giggling when tickled, waking up with a smile on his face. He is desperate for more independence with his latest trick being that he wants to hold the bottle or spoon.

In summary, a new dad’s NICU experience is full of fear. It is emotionally hard and physically tiring. For me thought, it also created a close bond with my son and brought my wife and I even closer together (which I didn’t think was possible).

Advice? Stick in there. Be your babies advocate – putting their needs first above all other considerations. Learn all you can from the excellent staff and take over the cares as soon as you are confident to do so. Support your partner – they are probably questioning what they did wrong or could have done differently (the answer to both of these is, of course,  nothing). Most important of all, keep believing that you’ll all be home together soon.

One last thing – I couldn’t write the above withoutEthan & his dad mentioning that Ethan had the very best of care in the Watford General hospital NICU – too many amazing professionals to name and unfair to single out any for individual praise. Ethan, Tara and I will be eternally grateful.

 

 

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Kangaroo Care – Close to my Heart

The first time I held my baby I longed to kiss him; longed to be able to bend my head, to be close to him, to tell him that I was there.

I waited six long day to be able to hold my baby; but placed in my arms he still felt so far way. Looking down I saw lines and wires tangled around his limbs, a breathing tube obscuring his face and buzzers alarmed with each move as he acclimatised to the outside world.  It would be a few more days before I could hold him close to my chest, before I could kiss his tiny head and whisper I love you.

From then on, like other mums and dads in the neonatal intensive care unit, I would sit patiently beside his incubator waiting for a chance each day to hold him against my skin.  Some days he was just too poorly – I missed him dreadfully on those days, heading home in the evening empty and heavy hearted.

imageKangaroo care or skin-to-skin helped me to feel like a mum, his mum. It gave me comfort knowing that this act would help him to regulate his own breathing and heart rate, it would help us find our way out of NICU more quickly. More importantly I saw how deeply he slept on my chest, how quickly he would settle when listening to my heart beat and I knew that sleeping equated to growing time.

The move to special care gave more opportunity for kangaroo cuddles. “Don’t hold them for too long” one nurse used to say, “they’ll get used to being held and it’ll mean more work for you when you get them home”.

I watched as mothers listened when they were told to put their babies back after feeding, “they sleep better and grow more when there in their cots” I heard another nurse say. I didn’t put my baby back, I kept him close.

In NICU and SCBU he would have been alone in his cot for most of the day; alone for much longer than a new born baby born at term and certainly held a lot less. I didn’t agree with the theory that by too many kangaroo cuddles I risked bringing home a clingy baby from hospital. Besides, I knew that the best place for my baby to sleep and grow was close to my heart and that is where he stayed.

Kangaroo care, skin-to-skin, is not only beneficial to mum and baby, it is precious, powerful and vital. When being mum is difficult, when you find yourself lost in a place you hardly know, kangaroo cuddles can silence even the loudest monitor and quieten your darkest fears. Precious moments snatched in an uncertain world – rare private moments to whisper “I love you”.