World Prematurity Day

World Prematurity Day

World Prematurity Day

I have a beautiful friend who has been guest posting a couple of times on my blog, she doesn’t have her own blogging platform, but I believe her voice is powerful and she inspires me everytime she encourages me through a private message on facebook, or on email.  She has been writing my ‘Diary of a Working Mum’ series and if you’ve read any you’ll agree, she’s a gifted writer, she also has a beautiful little girl who was born at 29 weeks gestation (31 weeks and 3 days pregnant).  I asked her if she wanted to share anything for ‘World Prematurity Day’ and she has written me an amazing guest post.  Thank you Heather, you are truly one in a million and I know all reading will be blessed, moved, encouraged and inspired after reading this.

I’ve wanted to write this blog piece for so long now but have always chickened out at the last minute, partly because I would not know where to start, but mainly because I am absolutely petrified of re-visiting the memories associated with that time. As I write this, it is exactly 5 years to the day that my premature baby story started.  Nick and I are huge football fans. We both used to be season ticket holders at Bolton Wanderers (Nick still is) but now we have Martha, I don’t get to go as much as I’d like. The season of my pregnancy, we decided to try and go to as many away games as we could so I could soak up the football and have something to occupy my time during the weekends where we’d usually be down at the pub having a boozy afternoon followed by a greasy take-away, neither of which is befitting for a pregnant woman!

On Saturday November 13th we headed off to Wolverhampton to watch Bolton beat Wolves 2-3. It was a brilliant day. I can remember taking a picture of us both in the Concourse at half time, laughing together whilst eating the staple half time Footy Pie. That picture is still on my phone. The next picture I took was of a tiny baby, in an incubator, with a cannula in her hand with wires and tubes attached to her.  On the giddy journey home from Wolverhampton, we both discussed upcoming fixtures, and deliberated how many of them I would be able to realistically go to before the baby arrived. Little did I know that that would be the last game I attended for quite some time. That night, as I slept, my waters broke. I was 30 weeks and 3 days pregnant.

Waking up to a wet bed is not something you would expect a 36 year old to do, but I was pregnant and my pregnancy hadn’t been a smooth one. I had bled on and off throughout and had been in and out of hospital with various different problems. To make matters worse my baby wasn’t very active.  She barely kicked at all, but always had hiccups, something which I found quite reassuring. Upon waking that morning my first thought was ‘I’ve wet the bed. It must be something pregnant women do’ and shared my conclusion with Nick who presumed the same. A couple of hours later Nick and I built a wardrobe (I know, how stupid of me) but I think I was just trying to take my mind off these little trickles that kept seeping out of me. It wasn’t until later on that afternoon as we were walking round Tesco that I finally said ‘Nick, this isn’t right. I’m leaking. I’m going to go to the hospital’. Not wanting to worry him too much nor have us both spend hours in a waiting room at the hospital only to be told everything was fine as had happened many times before, I decided to go on my own, and call Nick as soon as I knew what was going on.

Speaking to the receptionist at the hospital in a blasé manner, I explained what had happened and that I was sure it was nothing to worry about. She had other ideas.  I was ushered straight out of the waiting area and sent into a private room. A doctor was with me within seconds. I had an internal examination and was told I wasn’t going home because my waters had broken. I was immediately given a steroid injection in my bottom to mature the baby’s lungs if its arrival was imminent. I was so very scared. That’s when I phoned Nick. I told him to bring me essentials like pyjamas, toothbrush etc., and to phone my Mum to tell her what had happened. I think I was in shock. I had no idea what any of this meant. I knew that some babies were born prematurely but I didn’t know any of them personally. What was happening? Was my baby going to die?

I was diagnosed with PPROM (Pre-term Premature Rupture of the Membranes). This in laymen’s terms meant that I had a tear in the sac that carried the baby and was leaking amniotic fluid. There was no cause for it; it was just something that happened. I had no other signs of labour, no pain, no gushing of waters, just a slow trickle which only seemed to happen when I stood up. That night I was sent for a scan which revealed that the tear was at the top of the sac – good news as amniotic fluid is reproduced as it is lost and the sac that carried the baby would therefore keep topping itself up as fluid leaked out. I had substantial measureable fluid which was a good thing for the baby, but because of the tear, the baby would be prone to infection, and once infection set in, the baby would have to come out. Fast.

Nick arrived shortly afterwards with the following items; A Terry’s chocolate orange, a football shirt, 2 pairs of highly inappropriate knickers considering my circumstances, and a toothbrush. Bless him; I can just imagine him running around the flat in a blind panic, grabbing anything he could. And so began my bed rest. The best thing I could do for my baby was to stay in hospital and stay horizontal.  No baths, no standing up unless necessary, daily scans, and to just wait. I was on a ward with 7 other women all in risky situations, and I met some amazing women that week. In the bed opposite me was a lady called Carren who had not been feeling her baby kick often. She already knew that the baby had a heart condition. We chatted a lot and are still friends to this day. Her little girl Lagan was born full term and underwent numerous operations on her heart but sadly passed away the Easter of her first year. Carren has since set up Lagan’s Foundation in her honour which gives invaluable support to woman and families of children with heart conditions.

I witnessed some amazing things happen on that ward. One of the girls who had also Pprom-ed re-sealed (something very rare) and was allowed to go home, and another girl announced she felt like she ‘needed a big pooh’ – etiquette flies out the window on a ward full of pregnant women – and came back from the toilet with a screaming baby. There was never a dull moment, or maybe you just observe so much more when you are laid on your back all day and night. I mostly kept myself to myself for the week and kept my curtains closed. I think I just went into survival mode. I ate so much that week, determined that if this baby was coming, I was going to give it the best chance of being healthy and a good weight. And I read loads. I restricted myself to an hour a day of the internet because it was so tempting to try and predict my baby’s chances. My sister brought me one of my favourite books to read as I was growing up – ‘The Secret Diary of Adrian Mole’ and I cannot express how much comfort reading it gave me. It transported me back to a place in time where none of this heartache was happening and the escapism was just so lovely. I would get to the end of the book and start again, something which I’ve always done with books (and films) I love.

One of the pieces of advice the nurses gave me was to drink lots of water, which I did in abundance, but one of the down sides to this was how many times I would have to go to the toilet. I had been told that if my situation took a turn for the worse, the first signs would be bleeding, so I became absolutely petrified of going to the toilet in case I found blood on the pad I had to wear for the leaking. I would regularly call the nurses in the middle of the night crying hysterically and asking her to check my pad as I would be convinced there was blood on it. The pad once had tiny strands of lanugo on it (the fine hair that covers a baby’s body and sheds as they develop) and the sight of this upset me so much. I still get freaked out when I visit a public facility with the same toilet paper dispenser in it as the hospital. It’s the little things that can set me off. A few years after Martha was born I got into a lift in a department store and it smelled of the Neo-natal unit and I stood there quietly sobbing at the memory.

Bed rest in the hospital continued with no change until the following Thursday evening. I had only told my close friends what had been happening and had removed myself from Social Media to avoid having to tell anyone. My only visitors were family and my best friend Helen. I didn’t want anyone else there, I just wanted to hide until I’d come out the other side. My Dad used to come and visit me on his lunch hour, but often I would be dozing, so he would quietly stand at the ward door watching me as I slept. That Thursday night, Helen, my Mum and my sister came to visit. I casually mentioned to my Mum that I was getting what felt like period pains and they were happening every 7 minutes.  Just a tightening and nothing too painful. I really don’t know why their existence didn’t alarm me under the circumstances; perhaps I was sub-consciously in denial, as I thought the longer I kept the baby in, the safer the outcome would be. My mum told the nurse and I was monitored over night to see if, what I now knew were contractions, were getting any closer together. Nick came the following morning and we had an emergency scan. Sitting in that scan waiting room with other healthy pregnant mums having their sex scan and coming back into the room cheering and crying tears of happiness was one of the most painful experiences of my life. I literally buried my head in Nick’s chest and cried, hard desperate tears.

The scan revealed that we had little or no measureable fluid left but the doctors wanted to see if they could stop the labour. That night I was put in an isolation unit with a nurse monitoring me through a glass screen like something out of a sci-fi film and given a cocktail of drugs to stop labour.  Nick stayed with me all night as I was too petrified to be on my own. He slept in the chair next to me and I didn’t sleep all night. It was an awful, awful night and I was that tired, I thought I might go mad.  I can remember having this wild look in my eyes through the trauma of it all.  The next morning I sent Nick home. I wanted him to get some proper rest and I wanted him to go to the football that day. I know people will be aghast at that but I was really adamant that he went and had a break. I had the stadium on speed dial and there was nothing any of us could do other than wait to see if the labour stopped. My sister came to take over sitting with me and whilst she was there, it was decided that stopping the labour hadn’t been successful and I needed blue lighting up to Preston because the baby was coming and there were no available incubators at Bolton. Nick arrived back at the hospital with my brother-in-law Simon and followed the ambulance up to Preston. I can’t remember much of that journey except to say that a really weird peace came over me. I felt like I was on a cloud. As the ambulance doors shut in Bolton, Simon mouthed through the doors ‘it’s going to be ok sis’ and suddenly I felt calm.

At Preston I was left sat in my pyjamas and coat on the end of a bed for 2 hours. Another patient made me a cup of tea, and I waited for the doctor to assess me again. I settled into my new bed and the contractions started coming faster. I can remember watching Match of the Day that night (we had beaten Newcastle United 5 -1) and throughout the night I was strapped to the heartbeat monitor. I hadn’t slept a wink in 48 hours. In the morning a doctor and 2 nurses came to see me. I was again given an internal and the doctor decided that they urgently needed to get the baby out as infection had set in. I was induced at 2pm that day. I was exhausted, frightened and now I had to give birth.

I’d heard that labour was painful, but nothing could prepare me for what I was about to experience.  Being induced apparently makes the contractions more intense and mine were off the chart, literally off the chart that hung above my bed that mapped the pain and the time apart of the contractions. I can remember screaming for an epidural and asking my mum to kill me (neither of which happened).  It wasn’t helped by the midwife who was seeing to me and kept telling me I wasn’t in labour and that I must have a very low pain threshold. She left the room an awful lot during labour and thank God my mum and Nick noticed that my frantic screams had turned into pushing because Mum ran out of the room to retrieve the midwife, who was eating a sausage butty, and told her to get back into the room with the necessary equipment because the baby was about to be born. The next few moments were a blur. All of a sudden the room went dark, the midwife looked shell-shocked that everything was happening so fast, and a man came into the room with an incubator and breathing equipment. I vaguely remember him standing at the bottom of my bed holding one blue hat and one pink hat. 3 pushes later at 8.12pm, the room erupted with the crying of a baby. A girl. A tiny 3lb 12oz baby girl born at exactly 31 weeks and 3 days.  She was quickly cut away from me and everything went quiet as they put her in the incubator. I can remember asking over and over ‘is she ok? Is she ok?’ and the man with the 2 hats shook his head, and I panicked. He then quickly clarified his head shaking by saying ‘She doesn’t need it, she doesn’t need oxygen, she’s fine’. Oh the relief that engulfed me. I was then passed my precious daughter to hold for a minute until she was taken from me to nicu. The next couple of hours were what I would describe as post traumatic shock. I was so very relieved that she was ok, but I was so angry with that midwife for not listening to me, for not believing I was in advanced labour, for not giving me any pain relief that I so desperately needed, for not having the equipment there if things had gone wrong.  After I had birthed the placenta, I was encouraged to have a bath, then wheeled back to a mother and baby ward filled with new mums and their new-borns, whilst mine was somewhere in that hospital being assessed and stabilised. I was in so much pain physically from the labour and emotionally I was in absolute shock.

Later that night, Nick and I went to see our girl who we had named Martha Iris. She was so small, all curled up in her plastic box with a huge cannula in her hand. But she was the most beautiful, most precious thing on earth to us and she was just perfect. This was the start of learning a new language for us that becomes second nature for all nicu mums and dads. We were invited to do something called ‘Kangaroo Care’ which is skin to skin contact with baby and encourages the bonding process.  Both Nick and I loved this. Having that warm little bug curled up in the nape of your neck is absolute bliss. We were shown how to do ‘Cares’ which is changing and washing your baby through the doors of the incubator without disturbing the many wires attached to them. And of course how to feed them via the tube inserted into their little nose.
I was given sleeping tablets that night and with the help of earplugs and a sleeping mask, I slept for around 9 hours. The most I had had in a week. At around 9am I was awoken by a nurse asking where my baby was! I’m not proud of what I said next…’Are you f*%king kidding me? Have you even read my notes?’ After a profuse apology, she then asked me to begin expressing as it would be beneficial for Martha to get the antibodies associated with breast milk. This began a long process of endless
pumping as I became obsessed with giving Martha every chance of getting stronger and getting out of hospital, back home where she belonged.
The next couple of days I stayed in Preston hospital because I needed to be near to Martha until she was transferred back to Bolton when space became available. 2 days after she was born, she made the journey via ambulance in her incubator with Nick and me anxiously following behind to Bolton’s fabulous NICU facility. I had briefly visited the unit in the week leading up to Martha’s birth and had met mums with babies born at the same gestation in order to prepare me. It was an emotional visit but one which made me feel so much better and not as alone. Everyone was so encouraging and hopeful in there. The nicu mums were some of the strongest I have ever had the privilege of meeting.
 world prematurity day, 7 months pregnant, imeverymum, mummy blogger, premature baby, NICU

Going back home to our flat without the baby was exceptionally difficult. It’s something you never imagine possible, and for some less fortunate than us, it’s permanent. Walking through our door having left a week earlier full of worry and uncertainty, I broke down. I ached for my little girl. She was 5 miles away all on her own, without me looking after her, but I knew she was safe. And so began a new routine of thrice daily visits to the unit to be with her. Nick had been granted 2 weeks paternity leave, but of course he had used up one of those with all the drama of the week previous, and he wanted to save the other week for when Martha came home so we could be together as a new family. We made the difficult decision for him to go back to work, and for him to join me for the evening visit each day.

Nicu is an amazing place. The nurses or ‘Aunties’ as they prefer to be called are wonderful, gifted, caring people. I would wake in the middle of the night, desperate to know how Martha was, and we could call any hour of the day or night to speak, cry, be reassured and comforted by someone who was looking at Martha as we communicated. It was so bittersweet, but Martha’s progress was exceptional. She started bottle feeding my expressed milk and moved from the high dependency unit to an open cot within a week. Exactly 3 weeks after she was born, and a week before Christmas, we got to take her home. We were invited to have a ‘sleep in’ at hospital with her so we could have on hand support if we were anxious, then she was discharged to us along with 70 bottles of my frozen breast milk – I told you I was obsessed!. We couldn’t quite believe that we had been entrusted with this precious jewel to look after at last. We were deliriously happy.  Martha progressed well, and we eventually settled into a new routine with her feeds. I had been struggling so much time-wise to express, then feed her, then express again in time for the next feed. I literally wasn’t leaving the house. Martha couldn’t feed straight from the breast as her suck was too weak and her feeds from the bottle could take up to 2 hours followed by an hour of winding as her back was too weak to get the trapped air up. We eventually gave up on breast-milk after about 2 months which gave me so much more time to enjoy Martha. One of the things you’ll find, not just as a mum of a premature baby but any mum is that the pressure from others can be immense. I actively rally against some of this pressure because I get so angry that as Mum’s we often turn against each other in our bid to be perfect. Breast or bottle? Co-sleeping or not? Baby led weaning? Pain-free labour? It makes me feel like screaming ‘It’s none of your damn business, because you don’t know my circumstances’. What I have learned from my experience is that no 2 stories are the same and the choices we make must suit our families best, not every other smug mum out there.

I’ll always remember those dark days when we feared the worst and to that end I continue to be an active part of a Pprom support group, offering advice and encouragement to ladies on bed rest all around the world. I have also taken part in races raising money for BLISS – (a registered charity for premature babies) who gave me invaluable support and advice when I needed it most.  As we remember all the babies born before their time this week, my heart breaks for all those who grew their wings too soon. Martha was one of the lucky ones and we are incredibly fortunate to have her here with us today, a feisty, independent nearly five year old who makes my heart burst with pride every day. Since Martha’s birth, I have come to realise that being a Mum of a prem is actually all around us. So many people I have spoken to in passing have said they are Mum’s of prems who are now healthy strapping adults. I love hearing those stories; they fill me with such hope and joy.

Prematurity does not discriminate, it can happen to anyone regardless of race, colour, age, religious beliefs etc. I don’t believe that we are ‘blessed’ with our girl who is safe and well, we are just extremely fortunate to have come through the other side happy, healthy and relatively unscathed.  Going back to my first football game a few months after Martha was born was brilliant. The ladies who sit behind us in the stadium had been kept up to date by Nick and I was welcomed back into the football family with open arms, warm hugs and requests to see pictures of our awesome little fighter.  We lost the game that day, but I felt like I’d won the best trophy of all, a beautiful miniature girl who had changed my world for the better.  My advice to Mums out there or to pregnant ladies for whom prematurity is a concern, real or imagined is this: take a deep breath, always trust your instincts, always ask for help, love your baby like only you can and know above anything else that, as the advert says, you’re all doing a great job.

The poem I wrote for Martha’s christening :

For my baby – 1 year old tomorrow

We fell in love with a heartbeat on a screen,

Right there, a life, all new, to the world unseen.

We shared our news with tears of joy,

Was that heartbeat our daughter or a mischievous little boy?

We watched you grow, we nurtured you,

The weeks went by and my bump grew.

One night we laid, and watched the moon,

Then morning came, you were coming too soon.

Frightened I lay in a hospital bed,

Fear and anxiety rushing through my tired head.

In the dead of night, snow fell and rested on trees,

I cried out to God, and my troubled soul eased.

The very next day, our girl was born,

So tiny and sweet and perfect in form.

Our hearts broke again when we couldn’t take you home,

But you were so small, you hadn’t fully grown.

As Christmas approached you were still so small,

Came the news that we dreamed, our best present of all.

We climbed the stairs and switched on the tree lights,

The beginning of tired days and some very long nights.

Precious nights spent together, getting to know each other,

My tiny little angel, teaching me how to be her mother.

As springtime came, you got so much stronger,

A smile then a giggle and legs so much longer.

Now summer’s here, our worlds revolve around you,

You bring so much joy, if only you knew.

I love seeing you, laughing with you Dad,

He’ll always be there for you with a cuddle when you’re sad.

We’ll both do our best to equip you well,

To live your life fully, to make all hearts swell.

I’ll try my best to set you free,

To show you the wonder of love that you’ve taught me.

Every day we thank God for our little treasure,

Who’s improved ours lives and surpassed beyond measure.

So this is your day, your family and friends are all here,

To give thanks for our fighter, Martha Iris, so dear.

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