The Uncomfortably Familiar Surrounding of the Hospital Ward No Longer Sits Well With Me.


The moment you arrived in this world, those nine weeks prematurely, was the moment I knew our journey was going to be jaggered. 

Your Brother had done very little to prepare us for a poorly child, he’d not once been ill in the 9 months prior to your birth. We left ward 10 of UHND skipping with positivity, marvelling in the miracle of life. Only to return somewhat nine months later anticipating your eager arrival. The car journey to hospital with your brother was full of excitement and readiness – and even though he arrived three weeks early, we were both mentally and physically prepared. My pregnancy APP had told me that he was officially ‘full term’ and had done all the growing and developing he’d need to in my womb. The car journey second time round was not so clear cut. The feelings we experienced were completely worlds apart! With you, there was so much to fear, so much at stake of losing. We were told there was a chance you wouldn’t survive and although we were compelled not to believe this would be our reality, we couldn’t deny that this could be our truth. 


It took 5 weeks before we could skip down the corridor, focusing positively on your future. 5 weeks of getting to witness just how miraculous growing life could be. We physically saw your eyes unpeel, your lungs grow stronger. In a conflicting sort of way, it was a privilege to see.  Once those 5 weeks were over, we had visions of plain sailing from then on out, to wave goodbye to UHND once and for all. We had visions of routine check-ups going exactly as the should…no hiccups, no complications, no more reasons to worry.

I wished for this so much.

Your 1st Year of life saw us returning to hospital almost as much as we were away. Your lungs just didn’t seem ready to cope with any common childhood bug you encountered. I spent many nights watching the sats machine, praying you’d turn a corner. I sat in the darkness of the hospital room, feeling all too uncomfortably familiar within my surroundings. The smells, the noises, the chaos and commotion just felt so much like the beginning of your life. I started to feel as though maybe this was just going to be part of your jaggered journey.


Almost as quickly as I admitted that, you suddenly seemed to flourish. Your lungs appeared to be coping with the demands of toddlerhood, we rarely used your inhaler and started to believe you were over the worst of it.

That’s not to say your trips to the Hospital came to an end. During this time, we came to realise you had Cerebral Palsy. The MRI scans, blood tests, kidney scans, hip X-rays, hearing tests and optometrist appointments just seemed to replace the late night ventures to A&E. on top of your ECG scans and routine paediatric visits, we began to see regular physio appointments, hydrotherapy, and occupational health. We became more aware than ever that UHND was always going to play a role in your childhood. This, however, all seemed manageable. The trips were expected and planned, we knew when you were going, how long you would attend and always that you’d be back home in time for bed. Most appointments were promising and we left with a sense of direction and confidence in your consultants. You were moving in the right direction. Every visit, every scan or X-ray shed some much needed light on how we could get you to where you needed to be. The familiarity of the hospital ward was certainly diminishing.

Then you turned two and things just seemed to turn upside down. 


You even started your 2nd Birthday poorly! We awoke on the 30th November 2016 to find you covered head to toe in Chicken Pox. You were irritable and understandably agitated but like we’d grown to expect, you appeared no different to any other toddler. It wasn’t until two weeks after your Birthday – a week before Christmas – that the late night rushes to A&E returned to our lives.

Since then, we seem to have visited more than ever before. Your lungs which we once rejoiced over maturing, no longer seem to tolerate any additional pressure. You’re susceptible to chest infections as a side effect of your large ASD (something I had hoped we’d have sorted by now), when your chest is infected, your lungs just can’t handle the strain. I’ve watched you work so hard to breathe that it’s rendered you incapable of speaking. I’ve held your listless body in my arms – agonised by your intercostal recessions. I’ve listened to Doctors tell me you have Asthma then tell me again that you haven’t. There always seems to be a battle whether it’s viral-induced wheeze, Bronchiolitis or Pneumonia which has knocked you down. Lately, they’ve branded around Chronic Lung Disease as if it’s not something that should scare me witless! I’ve heard them say you need a consultant then walked out of the hospital doors so maddened by the lack of progress on this front. 


I’ve fought! I’ve insisted and I finally feel as though I’m getting somewhere! Tomorrow, we’ll meet your Asthma nurse and eventually a plan of action can be put in place. 

You’re two and a half now and I’m so exasperatingly ready for that plain-sailing part of your journey to start. I want to be able to take you to a park on a sunny day without fear of hearing that wheeze. I want to take you to ballet without feeling guilty that the exercise is too much for your lungs to handle. I want to wake up on a rainy morning loving the possibility of spoldging in puddles – not feeling the dread that the humidity will change your temperament. 

The uncomfortably familiar surrounding of the hospital ward no longer sits well with me. Surely, it has to be time to move on! 

P.S I’m forever grateful for the care and attention Siena receives from UHND. The staff here are beyond miracle workers, keeping me sane one admittance at a time. Thank you for your hard work and support xx

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You’ve Got This


     I’ve not always been noted for my positive outlook. I’m one of those highly strung people who never seem to balance their emotions (surprising considering I’m a Libra and meant to be wholly balanced). I’m either high or low, happy or sad, excited or miserable. My reaction to situations or circumstances is undeniably unpredictable – and by that – I mean that I can’t even predict which way I’ll handle somethings. 
     Since you were born, I’m definitely making progress here. 
     Before you, I could easily wallow when things didn’t go my way. I could sulk endlessly in a way which would make me quite unbearable to be around. I’d always focus on the negatives in any predicament. In my mind, it was my way of protecting myself. I deludedly thought that if I prepared for the worst, I wouldn’t feel as bad when it actually happened.
      Spontaneously (9 weeks early) you entered this world and immediately taught me that preparing for the worst could sometimes be unthinkable; that preparing for the worst could sometimes be unimaginable. 

     There was never a moment I allowed myself to believe that we’d lose you – even as we waited seven hours for the Doctors to stabilise your condition. Even as we followed the blue-lighted ambulance 30 miles South knowing there was every really possibility you wouldn’t be strong enough to survive the journey.
     Following your pneumothorax , the Doctors found themselves in unnerving territory – If they transferred you without being stabilised, you could die but if you stayed at Durham, you surely would.
     As they prepared us for this chance, I heard the words swish around in my mind but I couldn’t digest them. You seemed too super to die, too determined to give up. 
     At 23 hours old, you made me view the world differently.

     I was no longer looking out at the world from the shoulders of a Mother full of vulnerability and emotion. I was looking at it with more strength, composure and self-assurance than I’d ever felt before. I knew instinctively that in your moment of need, I would never let you down. I felt it in my heart that my own strength and conviction was needed to carry you forward. I knew instinctively that I’d always believe in your ability, never doubt your capabilities.
     Nearly two years later and I can’t thank you enough for the strength and positivity that you’ve taught me. 

     Your prematurity made barriers for you we’d never imagined. You’ve had so many obstacles to overcome. So many more fights to conquer than other children your age. Since your diagnosis with Cerebral Palsy, were realised just how many challenges you’ve actually had. Many of which you must have suffered silently for so long but your attitude towards overcoming every barrier is truly amazing.
     You’ve a zestiness that is utterly captivating and instantly contagious. Your passion to succeed is completely admirable. The way you handle your disability makes me feel so incredibly proud of you. Every doubt you’ve heard us utter has played on your mind, willed you to prove us wrong. 

     There hasn’t been one challenge thrown your way that you haven’t tackled with ease. Your blasé attitude and confident approach to overcoming your ailments has, on many occasions, given me insight and perspective. There have been many times I’ve worried about your condition. There have been many times I’ve wanted to cry inconsolably for fear of what your future may hold. There have been many times where I’ve wanted to focus on the negatives and prepare myself for the worst.
     But every time I do, you show me that there really is no need to.
     Today, you met another milestone, one I’d once thought I’d never see you do. You pulled yourself up into a sitting position! For so long, I waited for you to sit unaided. It wasn’t until you were 18 months that you eventually learnt to hold your own. This accomplishment felt massive and although I beamed with pride, a little part of me still focused on the fact that your sitting wasn’t natural. You could only hold your stance if you’d been positioned, the notion of sitting on your own hadn’t registered in your mind. Having cerebral palsy, I knew that this would always be your biggest barrier.

     Your brain doesn’t communicate to your limbs the way that it should. It doesn’t send signals intuitively. We’ve been told to prepare ourselves that it may never learn to send those messages. We’ve been told to prepare ourselves that you may never walk. Although I hear this warning, I can’t allow myself to believe it. Your progress today proves that you won’t be defeated.
     I see you progress so rapidly recently that I feel more and more excited for your future. There’s no goal unreachable to you, no target you won’t strive to achieve. That tenacious attitude of yours inspires me to be more like you. You don’t see the negatives, you don’t focus on failing – and that is what I love about you! 
     Thank you for showing me a different way to be, a more positive, more constructive, more enthusiastic way to be.
     You make me hopeful and incredibly proud – I’m more grateful for the strength you’ve show me and the way you guide me to being a better person.
      You’re my fighter, my Warrior Princess, my Dolly – my daughter! And you’re completely amazing. 

     You’ve got this!

Just F**king Sleep

Just Fucking Sleep…

  

If there’s one thing I learnt very quickly as a new Mam, it was that babies repel sleep. 
It’s just something I physically can’t bring my self to understand. Sleep is awesome. Sleep is incredible! It’s the difference between feeling grand and feeling like utter shit. It’s warm and cosy, comforting and seductive. Sleep wraps you up, cradles you and reassures you that life will be fine…so long as you bag 7 undisturbed blissful hours.

7 undisturbed blissful hours? Holy crap, I can’t remember it. Sleep and me, well we broke up two years ago. 

It’s been the hardest break-up I’ve ever endured. With most splits, time heals wounds and repairs scars but not this time, the longer we’re apart, the shittier I feel. 

It all started the day my son was born (well there’s my first lie, it probably started about 7 weeks before he was born). He entered this world allergic to sleep and let’s face it, after 15 hours of straight unintoxicated labour, I needed sleep. Our 1st night together was unbearable, he cried so much that the midwives made the decision to give us a side room ‘I think we’ll give the other new Mothers a rest’ they said. A rest? A fucking rest? What about me? 

  
It didn’t take me long to figure out that my needs really didn’t matter. I didn’t have a doll to look after, I had an actual human being…and this one hadn’t yet learnt the value of sleep.

In fact, Tristan despised sleep to begin. Our first six weeks consisted of blasting Beyonce’s ‘Drunk In Love’ on repeat until he’d settle (at least I can thank him for my extraordinary karaoke rendition). As soon as the track would end, he’d stir and wake. Our Health Visitor told us that it was likely he had his day and night confused but this just wasn’t the case. Tristan would be awake for at least 17 hours straight each day. It was hell! I bet you’ve heard that age-old tip of ‘sleep when the baby is sleeping’? It was everyone’s top tip of the day every time I moaned about being tired but how can one manage that when one’s sprog never fucking sleeps?! I had no chance.

  
I’d love to say that this phase didn’t last forever and well, I suppose it didn’t. At 8 weeks, he eventually decided that he’d attempt to sleep at night. So, having actually managed at least 4 solid hours in a row, my Husband and I celebrated in a very ‘Husband and Wife’ kind of way…and accidentally conceived our Daughter. 

Sleep was my only immediate concern. I didn’t know if I’d ever be ready to part with its soft, inviting embrace again. ‘Please let us get a sleeper’ I prayed. 

  
When Siena was unexpectedly born at 31 weeks, sleep became less of a priority. Once I was released from Hospital, Siena was still in NICU. I effectively had 5 weeks to try and catch up on sleep before she came home but I just couldn’t do it. I couldn’t settle knowing a nurse was doing my duty for me. So, I set my alarm (for those times I did manage to stop fretting) and expressed every four hours. She came home sleep trained. She’d only wake every four hours for a feed then she’d slump straight back into blissful slumber, she was a dream. 

Just as I thought my love affair with sleep was about to be rekindled, teething came along and boshed all over my bloody good mood! Here I was again, pacing the floor for three hours in the middle of the night cursing my daughter to ‘just fucking sleep’. To make matters worse, her stirring would wake her Brother – just as I’d manage to settle one, the other would rear their head in a tantrum-y fashion. 

My only saving grace was ‘nap time’. If I was lucky, they’d each have at least an hour throughout the course of the day. If I was luckier, this would happen simultaneously. Yes, an opportunity to crawl into bed and hide underneath the duvet! Sometimes, it was my only chance of survival.

  
There were times, amongst the chaos, I’d wonder if I’d ever sleep peacefully again.

Now, at two-year-old, my son is actually amazing. He takes himself to bed at 7pm and very rarely stirs until 6am. His naps are lessening though – he’s a mix between wanting to nap anywhere/everywhere or refusing to sleep even though he’s ridiculously tired. My Daughter, is still a different story. 

She’s become a snuggler! This means, she’ll settle so long as she’s in my arms. Yes, I managed to untrained my sleep trained baby. How do you actually manage to do that? It has to be a colossal failure on my behalf. 

Oh well, I guess I’ll be chanting ‘just fucking sleep’ for a little while longer. 

Zzzzzzzzzzzzz

  

Lessons as a Preemie Parent

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I’ve never hidden the emotional turmoil I’ve faced as a parent in general. I’ve certainly never tried to sugarcoat the hardships I’ve experienced. Parenting is stressful. It’s hard and sometimes demoralising – yet so wonderfully fulfilling!

There’s no rehearsal, no education given, no ‘dummy run’ there to prepare you for the massive shift your life will take once your baby arrives. It’s a ‘learn on the job’ kind of role.

Life as a parent has taught me so much about myself but life as a ‘Preemie Parent’ has taught me so much more than I ever thought possible.

I’m quite certain no healthy pregnant couple ever fully comprehend what going into early labour feels like until they experience it. Labour is dramatic to begin; early labour is a theatrical performance. Only, no-one is acting. The fear is real!

At 30+6 days pregnant, I’d felt prepared for life with a tiny baby again. My son was only 9 months old, I’d just came out of the hard stage but with the remembrance of what little tricks had helped. It was going to be a breeze.

The following day, I was threw into a new position. One I knew nothing at all about – I entered the world of ‘Preemie Parenting’. The lessons I learnt within this role were harder, more challenging but also massively humbling.

So what exactly did I learn?

I’ve learnt that I am stronger than I think. Physical strength is not something you’d associate me with. I am disgustingly weak. As for mental strength, well it had never really been tested. I’d always thought I’d be useless, I’m quite emotional and can’t hide what I’m feeling in the slightest. Yet, as I peered into the isolette at the tiny baby which lay before me, I coped. I continued to cope – day by day, little by little, I listened to what the doctors had to say and I coped. The night my daughter couldn’t be stabilised, I coped. The 20 mile drive South behind my daughter as she was blue-lighted to intensive care, I coped even though there was every real chance she wouldn’t survive. Through the brain bleed, pneumothorax, heart murmur, hole in heart and many returns to the Children’s Ward, I’ve coped. I’ve coped because the strength I need is only half of what my daughter requires and she doesn’t just cope, she thrives. Premature babies have boundless strength – look no further than Tyson Fury (for all I don’t believe in his ideology, his strength is undeniable).

I’ve learnt that I should listen to good advice before dismissing it. At the time when I was focusing my entire energy on getting through each day, I didn’t have the capacity to listen to people’s advice. I was capable of recognising that the words they spoke were meant to comfort me but I didn’t have the time to ingest how important they would become. My daughter required my full attention, I didn’t want to become distracted by listening about ‘the bloke at the top of the road who was born weighing 2lb and is now 6 foot tall’. I didn’t want to know that ‘small things came in good packages’ or that she’d ‘do things in her own time’. A year on, stories of Preemies’ survivals make me beam with pride. I know that small things can be powerful and I’ve learnt first hand that there’s no rushing my daughter. The words of others often flood back to my memory whenever I start to panic. They’re often what keep me calm. If I had to do it all again, I’d take some of that good advice on board sooner.

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I’ve learnt that Siena’s NICU journey didn’t end with ‘Home Time’. Like all ‘Preemie Parents’, we were desperate to take Siena home. Naively, I thought that would be the end of our journey. I imagined that once we took her home, she’d magnificently transform into an ‘average’ child. Of course, I was wrong. For a long time, the hospital appointments, health checks and weigh-ins became routine but premature babies will never be ‘average’. They’re super heroes staring in their very own comic book. Siena has a story to tell, more chapters to write. So many of these have already featured antagonistic viruses, ailments, infections and occurring issues all linked back to her very first battle. Some have caused worry and upset, some have required time whilst others have required hospitalisation, medication, operation…all have required strength. Siena’s next chapter will be heart surgery. Once again, I find myself reminded that her journey as a Preemie isn’t quite yet over. I’ve watched my baby fight so many times already but I also know she can handle it. After all, she’s made with Preemie Power.

I’ve learnt that I’ve no desire to compete with other parents. Parenting will always be viewed as a competition for some. There’ll always be that one golden opportunity to gloat or rub salt in another Mother’s wounds when their weakness is revealed. Being a ‘Preemie Parent’ could mean you’re relegated straight to bottom league of the milestone tables, guaranteed last place in the race…but who really decides or cares? I realised early that there was no point in competing with mothers of full term babies (or any Mother to be frank) because we’re already winners. My Daughter has kicked Death’s ugly behind, I’m pretty sure that’d be defined as winning! She may develop slower that most babies. She’s at a stage where mini-milestones are regularly met but she cannot quite grasp those harder more physically demanding ones. Truthfully, there was a time that I’d let this upset me. Like all parents, I’m desperate to watch her grow and develop but I’m also thrilled with what she’s already capable of doing – breathing on her own. Maybe because I still remember the days when she wasn’t capable of doing this. Maybe because I remember the fear that she’d never breathe on her own. If it takes Siena 3 years to walk then so be it! The most important thing is that she will walk one day, who cares when it happens?

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I’ve learnt never to take my children for granted. I remember shortly after Tristan was born, feeling desperate for some sort of outlet. He wasn’t an easy baby. He cried hysterically for hours upon end. He demanded feeding every hour or two yet couldn’t tolerate his milk which left him pained and unsatisfied. There were times at 3am that I could have packed a bag, left the house and checked into a mental asylum. I moaned about the night feeds and the constant request for my attention. Then, early labour taught me how it would feel to lose a child. The fear moved the very core of me. Siena could have died. Knowing and realising the full extent of the pain that would cause, I transferred those emotions to Tristan. I realised that every day was important, every feed could be the last. Not because I’d lose him but because every Mother loses a baby eventually – they gain a child, a teen, an adult in replace – but those baby days cannot be regained once lost. From that moment on, I savoured the nights Tristan still needed my affection. I cherished every 2am snuggle with my Daughter. I grew to shed the negative approach I’d adopted. Life became easier, more enjoyable.

I’ve learnt a whole new level of love. The love we have for our children is unrelenting. Every parent sees their children as the most beautiful creations to bless this Earth. Before Siena, I didn’t realise how shallow I actually was. I’d seen pictures of premature babies, their minuscule bodies cluttered with wires and paper-thin skin provoked no reaction. The first glance at Siena and I saw how much beauty could be found. She was simply divine. There’s times I’ve found myself justifying her appearance though and this saddens me. “She’s so small because she was 9 weeks Prem” have became familiar utterances to strangers. I’ve listened to people tell me that she’d “grow into her looks” but to me, her prematurity makes her ever more beautiful.

Lastly, I’ve learnt that miracles do exist. Coming from a strong religious family,
I’ve always believed in God but I’ve also wondered whether that was more through habit or being told that I should. He was the first person I turned to in Siena’s hour of need. Throughout her NICU journey, God gave me hope. The bottle of holy water which was used to bless her isolette sat proudly on her shelf. The bible given to her by the hospital reverent was used multiple times when reading her stories. The reverent himself visited Siena throughout her stay. All of these gave me comfort. Believing allowed me to visualise Siena coming home. It gave me hope that she’d live a normal life, showed me that miracles do exist.

I’m lucky to live with one every day.

Being a ‘Preemie Parent’ is, without doubt, harder than I could have ever imagined. The lows are so intensely lower but the highs are also so intensely higher. Some days I feel angry , some days I feel blessed. Most days I feel privileged and proud.

Siena’s journey as a Preemie isn’t yet over and neither is mine as a ‘Preemie Parent’. We’ve plenty more chapters to write.

Here’s to our happy ending…

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My 1st Letter to My Warrior Princess

Flicking through my phone earlier as I tried to settle Siena, I found the 1st blog I ever wrote (but didn’t publish). It’s always seemed too raw to share before. Eventually, I feel ready.
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Tonight, I’ve sat by your side until 4am. I don’t think you even know I’m there.

The nurses keep telling me that you do, that you can smell my scent and that it will comfort you. So I’ve sat until 4 am and even now I can’t sleep.

I thought sitting beside you would make me feel worth something. I thought it would make me feel as though I’ve actually contributed to your wellbeing. Truth is, I don’t know how I feel.

I’m numb.

You’ll be Seven days old today (or is that now 32 weeks corrected? I don’t even know how old you are. I can’t even work out your age. That’s how fucking useless I am). Seven days old and still tiny. In the last six days, you’ve overcome more than most people do in a lifetime. You’re over the worst of it and for that I should feel grateful. With luck, your chest drain will come out today. I’m praying for this step forward.

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I’ve prayed a lot recently, I’m not quite sure how hypocritical that makes me feel. I mean, I’ve always believed in God but is it selfish of me to need him so much now when I’ve never paid him much attention before? You were blessed at only a day old – my decision was to get you baptised, the reverent talked me out of being so rash. I wonder if he would have stuck by that decision when your lung collapsed. Would a blessing have been enough had you not survived? Would God have accepted you? I can’t bear to think about it. And yet, I can’t stop thinking about it.

In case I ever forget to tell you, you broke our heart last week. There was a moment when you couldn’t be stabilised, you were very close to death and there was nothing we could do.
I’ve never seen your Daddy cry before. Well, not the way he sobbed for you last week. I saw the fear in his eyes, I felt it in his touch. We were all so lucky. If North Tees hadn’t accepted you (no other hospital in the North East did), this could be a completely different story. I can’t bear to think about it. And yet, I can’t stop thinking about it.

This week has been surreal. I really can’t tell you what I’m feeling. My body is honestly numb.

I’ve washed my hands and sanitised them so many times that my knuckles are cracked and bleeding. It hurts so much. The pain makes me feel something. It makes me feel as though I’m doing something for you. My pain is to help you, to protect you and for that, it’s worth it. It also reminds me that the pain I’m feeling is only a fraction of the pain you’re in. I want to take your pain away, I want to inflict it on myself and make you feel all better. If only there was something I could do.

But there’s nothing I can do. I’m physically useless.

The nurses keep telling me that you can sense me. That my touch makes your sats improve. But what use is that if I can only hold you for half an hour each day? I can’t even keep the windows in your isolette open for too long. I’ve been there to attend to your cares most opportunities. The only times I’ve missed have been when I’ve been with your brother instead.

He misses me so much, I’ve watched his heart break this week too. He doesn’t understand what has happened but he feels it. He knows we’re all hurting. I hurt for him, I hurt for you.

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I’m hurting because I genuinely don’t know what to do with myself, I just want to do something worthwhile.

I’ve been expressing – the Doctor says that breast milk is better than any medicine. So, like clockwork, I’ve collected milk for you. Once again, the pain makes me feel better. It makes me feel as though it must be worth it.

It’s close to 5 am now and I want to be up for your cares at 8 so I’m going to try and sleep. I don’t even know why I’ve written this, you don’t even know who I am. It’s made me feel better though, maybe I’ll sleep now that I’ve processed some of my thoughts.

Sweet dreams baby girl, my warrior princess. Let’s take on the world together later. Let’s make today one to remember.

Holding Siena in my arms, nearly a full year on from this, I wish I could say it was hard to remember feeling that way. My warrior princess has been quite the fighter. She’s stronger and more determined than ever but those feelings won’t disappear anytime soon. I’m coming to terms with the turmoil we experienced last year. It’s my time to be determined – I’m determined to move on from the past and make Siena’s 2nd year completely drama free.

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Nine Months Old, Nine Months On

  
Tonight, you’re sleeping in my arms. It’s taken a while for you to settle but not because you’ve been distressed, you’ve been so full of life. 
You’re 9 months old now and I marvel at how far you’ve come. 

9 months already! The age your brother was when you were born. I think back to when he was your age, it makes me smile with delight to remember him so small. It feels like a lifetime away, I suppose it was – your lifetime away. Then it makes me sad. 

 

This is Tristan while you were in Hospital, his eyes are heavy and that makes me sad.
 
Your birth was such a heartbreaking time for us, especially your brother. His ninth month of life was tainted with abandonment and upheaval. Your stay in hospital forced us to choose between you both. Although the choice was harsh, the reality was easy. You needed us more.

But he needed us too, just as you need me now. 

9 months old. When you were 1st born, I felt as though your brother was old enough to cope without me. Old enough to accept change. He’d never been a ‘needy’ baby. We’d been able to leave him with his grandparents overnight without any upset or withdrawal. Yet, I had always known that our situation wouldn’t be ideal (even when there should have been nearly 12 months between you), that it would be a transition we’d all have to adjust to. I expected turbulent times, was prepared for the jealousy and the anger, the frustration and the confusion. However, I could never have been ready to mend his broken heart. 

Those emotions I’d been preparing for never showed their ugly head. From the moment we brought you home, he was besotted. A ready made friend, a companion and an ally. He loved you instinctively and I beamed with pride (I still do, he makes me proud every day) but bringing you home was only the start of his recovery. 

  
Having you with us eventually meant that we could start our lives together, eventually establish a new routine. It meant that there would be no more days spent away from him, no more nights he’d go without his bedtime cuddle and story. It took him a while but soon, he learnt to trust that we weren’t leaving him if he fell asleep. Eventually, he relearnt how to settle at night. How to close his eyes and know that we’d be there when he woke back up.

The most noticeable affect your birth had on Tristan was in his eating habits. During your time in Hospital, Tristan learnt that there wasn’t many things in life that he could control (it kills me that he learnt this cruel life lesson at such a young age)…but he could control his eating. So he stopped. He closed his mouth and took back the power. He intelligently realised that this earned him some attention. 

We’d spend hours pleading with him to eat, we’d spend days worrying about how little he’d consume. He’d spend feeding times throwing food in our faces, ripping it from his mouth with such intent and disgust. He’d cry at the sight of his high chair, throw tantrums to avoid meal times at all costs. 

Then, one day, he ate. 

Then, the next day, he ate again.

To me, this was our biggest break through. I read it as a sign of his heart mending. I saw in his eyes that he was starting to relinquish his control and allow us to parent him again. He was starting to trust us again. There’s been plenty of relapses, plenty of times he’s used food to manipulate us but now these times don’t worry me so much. 
Your time in NICU also made Tristan anxious. Before you were born, he was care free. He’d trust us implicitly, from dunking his head underwater, to swinging him upside down. Then we left him and he became nervous. Bath times became problematic. He’d cling to us as though he were afraid we were going to let go. He’d cling to us in most places, in most social situations. Last Saturday, he jumped into the pool on his own, he trusted that my arms would catch him. Last week, at his 1st nursery visit, he ran off to play with the other children.

He didn’t look back for me once.

You’re 9 months old now and every day there’s fewer signs of your premature birth. Less evidence that our lives were ever rocked upside down. You still have a heart murmur (or so we concluded from your last stint in hospital) but although your heart hasn’t mended, ours are beginning to. Your brother has started to play again. His smiles grow bigger every day. 

  
I may always harbour guilt for the way your brother felt but having you here makes me feel better. So, tonight as you sleep in my arms, I’m going to snuggle you harder. I’m going to make sure that your ninth month of living is much much sweeter. Then, when I can, I’m going to snuggle into Tristan and make sure his eighteenth month of living is just as sweet too.

It’s true what they say ‘time is a healer’. I’m going to make sure both your hearts mend, I’m just going to need a little more time. 

  

Mummascribbles</div

It No Longer Offends Me

  Straight after having my 1st baby, hormones consumed my life. I found myself an emotional wreck. My mood swings were wild and unpredictable. One moment I’d be intensely angry, a split second later I’d be laughing at whatever had set me off to begin. Mainly, I cried. I was incapable of hiding any emotion or even trying to keep it to myself.

Luckily, as my body settled, my moods did too.

Surprisingly, I found out I was pregnant again only 15 weeks after the birth of my son, my main concern was dealing with those pesky hormones once more. I’d only just managed to regain control, I hated the thought that I was about to lose it all over again.

Then my daughter arrived 9 weeks early and I found myself more in control than I’d ever been in my life. Having always had emotional tendencies, people expected me to be unstable. Even my Mother thought I wouldn’t cope at the challenge ahead. The truth is though, Siena’s prematurity meant that I needed to be strong. I didn’t have time to wallow or feel depressed, she needed me to be focused and she definitely needed optimism.

Siena’s birth forced me to evaluate every character trait I possessed. Before her, I could be sulky and more annoyingly, touchy. I took everything personal, I could be insanely sensitive. Following her birth, I found myself thrust into positions where I could have been so easily offended. It became obvious that people didn’t know what to say to me or how to approach the subject of my sick child. In these moments, I found myself holding back the tears or boiling with anger. Yet, I never showed it. I bit my tongue, forced a smile and nodded in agreement. This wasn’t a time to isolate people or make them feel worse than they already did. I want to take a minute to apologise for being offended, I’m now able to reflect and realise that it was hard for people to show empathy having no idea what we were going through. It was hard for them to relate to our situation or understand that what they’d said was insensitive. So…

It no longer offends me that you told me I was lucky for not gaining weight. At the time, this was not a priority of mine. I would have happily gained 19 stone if it meant I needn’t watch my daughter fight for her life. There was no apparent reason to why Siena came early. This subject made me feel so guilty. Why hadn’t I gained more weight? Could this be the reason why Siena decided to exit so early? If I’d eaten a higher calorific diet would she have been more satisfied? I’m able to banish this guilt now more than ever. Siena was born at 31 weeks weighing 3lb 14oz, I may have only partly cooked her but she was big for her gestation. She had obviously been satisfied and I had obviously fed her enough.

It no longer offends me that you told me I was lucky because at least I could sleep. I didn’t sleep, I’d set my alarm for every three hours so that I could breast pump. It killed me knowing someone else was caring for my daughter, expressing was the only thing I could do to feel like her Mother. In between the expressing, I’d lie awake crying, feeling useless, missing my daughter. Siena had her nights and days mixed up which meant that I would spend all day at NICU watching her sleep. I’d get up and go straight to hospital to hear how she’d kept the nurses entertained with her gassy smiles and wide eyes. I wanted that, I’d do anything to see her awake. When Siena was at North Tees, I lived with her. I’d spend all night by her side singing lullabies and reading her stories. It wasn’t enough, I needed her where she belonged. When I wasn’t by her side, I’d sit watching videos of her brother, longing for a cottage pie kiss. Only now can I see that you were trying to comfort me. You were desperately clinging to anything positive to say, you weren’t aware of how painful my nights were.

It no longer offends me that you told me I had a ‘big’ baby. Yes, for her gestation Siena was big as I mentioned before. This comment made me feel as though my worry and doubt about Siena’s health wasn’t warranted. It made me feel petty for getting upset. Siena was more poorly than we ever let on. Her early days had been extremely scary. Her size was an indication that she had been progressing successfully but it didn’t have a direct impact on her health. I’m now able to see that you were offering me words of comfort and that it was my problem for not seeing that immediately.
It no longer offends me that you told me I’d have a baby for longer. Once more, this is not something I cared about. I didn’t care whether Siena was big or small, like a baby or a toddler from birth. I just wanted her to be healthy. Siena is now 8 months and she is still very much like a baby. You were right, I’ve cherished every moment with her – and knowing she’ll be my last, I’ve been able to savour each shoulder cuddle, every bottle. She’s growing so quickly now and I’m ready to watch my caterpillar transform and grow her wings.

It no longer offends me that you tell me you wish you’d go into labour early/had gone into labour early. Now this one used to really upset me, having a premature baby isn’t something any mother should want. Having a baby in NICU is not fun. It’s emotionally draining to see someone care for your baby; to not be able to cuddle them whenever you please; to watch them struggle, cluttered in wires and tubes; to not know when they’ll be well enough for home. It’s taken me a while to realise you don’t mean it, you’re just fed up at how shitty you’re feeling. Also, I’ve never reached full term. I can’t judge someone for how it must feel in those final days. Going over a due date can have just as serious consequences too, I now recognise your discomfort and fear…but please, don’t wish your pregnancy away.

It no longer offends me that you told me she’d be ‘normal’ one day (she’s my daughter, she’s got no hope of ‘normality’ ever). When Siena was 1st born, she still felt ‘normal’. As she grows, she still feels ‘normal’. She’s smaller than other babies her age, she’s not advanced as those babies either but she’s perfectly formed. Yet now I see that she isn’t ‘normal’ she’s blessed with hope and strength. She’s sprinkled with miracle dust. I no longer hear this statement as you judging her or thinking of her as ‘abnormal’ I now can accept that all you meant is that one day, her hard start to life wouldn’t be noticeable. One day, people won’t realise that there was ever anything different about her.

It no longer offends me that you told me Siena was ‘becoming beautiful’. To me, she has always radiated beauty. Even when covered with wires, when her veins shone through her skin, when she was covered in bruises from pin pricks and needles, she was magnificent. At the time, your comments made me feel as though once you thought she wasn’t. It made me feel as though her prematurity made her ugly. It’s only now that I can accept it might have been harder to spot her natural lushness to those who didn’t study her with love. As she grows each day, she does flourish and I know you can now see what I saw from the start.

It no longer offends me that you chose to avoid me but I’ll also never forget. When Siena was born, my eyes were opened to those who had the strength to help and those who couldn’t support me. There were friends and family members who never once asked me how Siena was doing, never once asked me how I was coping, never once visited her in the 5 weeks she spent at hospital. At the time, this hurt me so badly. I felt as though they’d rejected her. I now accept that just because my world had stopped didn’t mean that it had for others. I also know that some people just didn’t know what to say to me, I think of whether this had happened to someone else, would I have done the same? I’m sorry for being offended, we weren’t your problem to deal with.

When Siena was in hospital, I’d hear these things and couldn’t accept them for what they really were. They were meant to be comfort. They were meant to make me feel better. I can see now that the problem lay within me, not within those who said them. I can now think logically and know I’d probably offer some of the same words to others had I not experienced how they made me feel. To those Mammies still going through this early journey, try not to hold these comments in your heart. Look at them on face value and try to find the comfort others try to offer. It’s not easy for you but it’s also not easy for others, they’re trying and that’s what counts.

Mummascribbles</div