It's a very bittersweet experience with a premie birthday. Of course your joyful because they've reached another milestone with all the new and exciting phases that come with that. BUT there's still those shadows of 'everything else' that came with your little ones birth.
A normal birth and subsequence memories of the birth at future birthdays are full of firsts; laughter and smiles shared as your child enters the world and takes their first breath, first cuddles and touches; feeling them close against you and knowing their here and safe and everything is perfect and right in the world. There's the first outfit, first feed, first nappy (and jokes that come with it), first visits from loved ones. Staring blissfully into your beloved miracle eyes and working out which name fits him or her best. the excitement of leaving the hospital clad with balloons and teddies to start your new life together. The first experience of sleepless nights, surviving off toast but which is all made worthwhile by just holding your little one close, breathing in their special smell, feeling their warmth against you and their soft breath reaching your ears telling you that everything is fine and there is nothing to worry about.
Unfortuantly a premie birth doesn't have the same happy associations.
The day it started Sam had to go to work in London on a Saturday. I had jokingly said this was when it would probably happen as it would be harder for him to get back. As my waters had ruptured at 21 weeks we had been told to expect premature labour, and that when it did happen it could be over within minutes as he would be so small.
I had Tilly with me for the first time in 3 weeks as having reached the 24 week mark I was starting to relax. Of course I was still on unofficial bed rest so we spent the morning watching 'beebies'. It was after I had made lunch that I started to feel the tightenings. Having been through it with my daughter only 19 months before, and heeding the warnings of all the previous visits during the past 3 weeks I rang up my dad, trying to keep the fear out of my voice to explain what was happening. As they wernt hurting we agreed to give it an hour and see what happened.
I knew it was the real deal, mainly because I'd had the strong urge to make my playlist of songs to help me relax in labour, the night before but hadn't had time to add them to my tablets. Sod's law eh.
An hour later they were coming regularly and so into hospital we went. Of course we were met by the midwife who Id taken a true hatred too (after telling me at 21 weeks that scbu doctors were too busy to come talk to me about whether I should terminate or any chance of survival, because they were looking after 'actual' babies, and at 24 weeks that I should wait until my next consultant appointment for the vital steroid injections to strengthen Adam's lungs as it wasn't written in my notes; 3 weeks away. I point blankly refused to move until she called a doctor up as I might not have 3 days left let alone 3 weeks, which incidentally I didn't, he was born on the 3rd day). She was her usual arrogant arsey self; you really have to question why some people are in the 'caring' profession when they would be much better suited working in say an abitare.
She strapped me up to the monitors that clearly showed regular 'tightenings' and then questioned why I hadn't waited longer at home for labour to progress. I pointed out in a similar tone that with him being so small we were informed to come in at first signs. She huffed and walked off leaving me attached to said monitor for several hours. After then having a doctors examination and told to be moved to delivery ward she then half hearted gave me some co-codamol for the pain (of course she hadn't bothered to check if I had eaten as you have to take it with food or causes later effects).
By this point Claire had swapped over with my dad and Sam arrived during the transition. Everyone started rushing around monitoring this and examining that. It was one of the most surreal experiences of my life, especially after being informed that I was being transferred to brighton but that if the baby was born at redhill or in transit then they wouldn't be able to do anything to save it.
I then experience one of the most painful and scary situations I have ever been in. Due to the co-codamol been given on an empty stomach and that I have acid reflux I then experienced what I can only describe as what it must feel like to have a full blown heart attack. I couldn't breathe due to the pain in my chest, I literally felt like I was dying and yet none of the doctors or nursing staff around me seemed to take me seriously.
The only one who seemed to be as scared as me was my best friend Claire who was begging them to do something for the pain in my chest. I believe that they probably thought I was having a panic attack; Unfortuantly if they had just given me some gaviscon or antiacid it would have saved me experiencing one of the most physically trumatic episodes of my life. There are no words to describe the pain and fear I was going through.
Having also had several things squirted down my throat to delay labour, the contractions were slowing down. I was transferred on my own with a midwife by ambulance. All I remember of that journey is the sirens going, vomiting several times and the ambulance men discussing what they were going to get from McDonald's after dropping me off. I didn't realise how disturbed I was by this journey until a year later when I had to be taken by ambulance again to hospital due to food poisoning. The minute I entered the ambulance I was thrown into flashbacks of the labour journey and experienced a full blown panic attack.
I was taken up to the labour ward which was entirely different from my experience at East Surrey. It took me a full hour to realise the lady sorting out the room and asking lots of questions was actually the midwife and not some nosy desk Clark; as everyone who worked on the maternity wards wore their own clothes to 'demedicalise' the experience.
After settling us in and explaining as everything had slowed down that it was probably just a false start and that I would be kept in over night for monitoring and sent home the next day, she asked me to do a urine sample. After doing it I noticed a large substance floating in it that can only be described as a piece of liver. Reassuring myself that my midwife would know what it was (having had 30 years of midwifey experience) I handed it back to be questioned "what the hell is this".
It turns out in 30 years of midwifery experience she had never experience or seen my 'chopped liver', and thus began the paranoia that bits of the baby were falling off and coming out.
At midnight Sam and Claire were sent home and I was instructed to get some sleep, which is easier said then done when your room is right opposite the nursing desk where all the lights were blazing.
At 1am the contractions started coming. By 2pm they were regularly 3 minutes apart and beyond painful. I had believed logically with him being smaller that the contractions would be easier, but in fact it was the opposite. Because he was smaller the uterus muscles were having to contact harder to squeeze effectively; a bit like when you have the last drop left In your toothpaste tube; you have to work that bit harder to get it out.
I buzzed the midwife and she spent the next 3 hours sitting with me trying to make things better. I could hear the anxiety in her voice as due to the co-codamol reaction earlier she was at a loss what to give me for the pain. The gas an air was making me dizzy and nauseous so I was only able to use it for the worse of the build up of each contraction and ride the rest out. I have discovered that when I'm in severe pain I end up internalising it and falling silent; lost in my thoughts and mental prayers or escaping the repeated trauma you'd never think physically possible, let alone survivable. I spent the time staring at the clock watching the red second hand ticking off each second of each contraction until the slight respite before it all began again.
After examinations it was deemed that I should ring Sam and tell him to get back to the hospital NOW. He wearily and informed me he was having a poo and didn't know how long he was going to be; never one for quite grasping the seriousness of a situation.
I was being monitored for his heartbeat and by the time the midwife informed me I was 5cms and that she needed to a doctor pronto I was so absorbed and consumed by the pain I wouldn't have been able to tell her my name let alone take in what was happening around me. The next thing I knew I was surrounded by doctors midwifes and anaesthetist having a permission form thrown at me and being told I didn't have time to be talked through it and just to do an X for my signiture as they began to wheel me off to theatre. The one predominant memory of that journey down the corridors was the doctor holding my hand as we were wheeling and asking me if I understood that a 'normal' 24 weeker only had a 40% chance of survival, but due to my premature rupture of membranes my baby's would be significantly less.
They then rushed about inserting a spinal and asking why I was smiling and all I could reply was 'the pain it's gone, it's gone' as the contractions had become pretty much back to back. They set up the screens and then sprayed cold air up my legs and side of my stomach asking if I could feel it, after informing them that I could they replied not to worry it would be numb by the time they started the operation.
Someone asked if there was anyone in for me and then a conversation continued, I looked up and thought wow that doctor is really handsome; suddenly realising that it was in fact Sam in scrubs and a hat. Maroon always was his colour.
I had to lie completely still with my arms stretched out at shoulder height. Within minutes it was extremely unbearable and cramping up. As they cut into the uterus there was where shouts about severe infection and needing to wash it out and start IV antibiotics.
It was becoming more and more uncomfortable. As they pulled Adam out and rushed him off I thought I heard a weak mewing, much like that of a young kitten. He was introbated and they slowed down on passing to lift up a blanket to reveal him in the incubator underneath and then had to rush off to NICU.
By this point I couldn't grin and bare the pain any more. I informed the anaesthetist that I could feel the cutting and tugging and that it was very painful, and no it wasn't like someone doing the washing up but like someone slicing me apart with knives. I'm sure that they once again believed that this was fear and anxiety based, but after violently vomiting they took me seriously as stopped the operation whilst placing my under general anaesthic. I have later discovered that due to Ehlers Danlos Syndrome, the genetic connective tissue disorder (which is also responsible for my waters breaking prematurely) That I have been diagnosed with; my body does not respond properly to local anaesthetics, they are essentially useless for us EDSers.
I awoke 5 hours later and kept being dosed up on morphine due to the pain. Having suffered respiratory distress after an operation the previous year due to morphine; which had led to a nurse having to stand next to repeatedly reminding me to breath, I was extremely anxious that I would again forget about breathing and thus die. I kept begging Sam to check I was breathing before passing out once again into unconsciousness. This went on for several hours, during the return to consciousness I remember staring at my blood pressure and noticing the 'Portsmouth signs' where the bottom number is higher then the top, and thinking 'oh shit I'm bleeding somewhere and there's no nurses to tell'. Everytime I woke up Sam was asleep and so panic set in that no one was making sure I was breathing.
When I finally came too long enough to be more cognitively aware I asked for my phone which was flooded with congratulation texts. I couldn't read them and felt angry and bitter about them. I didn't know how my baby was doing, what physical state he was in or if he was even alive. All I could do was lie there paralysed staring at the ceiling and listen to Sam snoring next to me. After reading a text declaring how much they loved his name I woke Sam up shouting
"what have you called him, why did you name him without me?"
Sam replied that he had named him Adam because the nurses had said that he had to have a name for his notes. Devestated doesn't even come close to how I was left feeling. I had NOT wanted our baby to have the name Adam as I associated it with the baby I had lost to miscarriage 3 years before. It felt like we had cursed him. I also felt broken that I hadn't had a say in such a fundamental decision in our child's life; it had been taken away from me. As minor as it sounds this devastation took over a year to leave, I bored my friends to tears repeatedly moaning about how the name Adam didn't fit him, how depressed I felt having had no say in it. I guess with everything out of my hands it was the one thing I had a choice over and it had been taken from me. Of course I should have discussed it with Sam and sought out a name we both could agree on; but by that point my thinking was far from logical and I assumed I couldn't change it as all his notes would already be using that name.
By 5pm they said he was stable enough for me to be taken up to seem him. I was beyond desperate to see him and make sure he was alive for myself. But I was also terrified as I still had the vomit in my hair from the operation and didn't want to be taking germs into a place filled with so much fragility.
What I remember of that visit is the heat of the place being overwhelming and feeling like I was going to pas out. The smell was nauseating and very similar to dirty rodent cages. But Adam was bigger and longer then I had expected. Of course he was tiny at 1 pound 8oz, but I had expected him to be less then the length of my hand. His skin was bright red and tacky as if he was made of glue, it was also almost completely transparent with every vein on view. He didn't look like a baby but like an wizened old man at the end of his life. Although we were in an alien environment with potentially endless nightmares forming our future, all I could feel was extreme relief. We had been told that due to the waters going so early as his limbs would be deformed and bent. However not only was he kicking and moving non stop but every limb was perfectly formed.
The next 3 days however were full of dispare and guilt. Tilly was only 19 months old and having nightmares and crying uncontrollably for me, she couldn't understand why her mummy who held her and cuddled up to at night had suddenly disappeared again. I also felt like I should spend every minute awake in NICU with Adam and yet because of feeling so awful and ill I struggled to sit with him for even 5 minutes. The second day I forced myself to have a shower so as not to risk any chance of contaminating the babies there, but due to anemia I had to ring the emergency cord and the nurse pratically carried me to bed as I was beyond faint.
I also was in incredible pain. Due to the labour events associated with the co-codamol I was only on paracetamol and ibruphron and oromorph for the first 48 hours and then was surviving on just paracetamol as the ibruphron was making the reflux worse. Paracetamol doesn't even touch the surface of major abdominal surgery recovery.
I also had severe diorrhea due to IBS which had been playing up throughout the pregnancy. Literally everytime I ate or drank anything or seemed to blink I needed to rush to the Toilet. I had a lot of anxiety surrounding my ibs and so could only use the Toilet with my private room which again made visiting NICU, 2 floors above with a slow lift and only one toilet in busy patient sitting room, a lot problematic.
The surgeons registrar came and sat down and informed me that one I had had a seriously uterine infection that they couldn't understand hadn't gone septic. They were also confused why I hadn't presented with any infection such as a fever, an what that might entail with monitoring my recovery.
He then dropped the bombshell that would change my life. Due to Adam being so small the uterus hadn't fully ascended and so he had become stuck on extraction. They had been forced to perform an Inverted T section which essentially cut through the line of muscle up through the uterus. Because of this I could never labour again due to high risk of rupture and so would have to have another section if I ever had another pregnancy. Also with Adam being premature we had a high risk of future labours also being premature and thus going into early labour. Basically future pregnancy could be a death sentence.
By day 3 I completely lost the plot.
I have never been one for crying and often struggled to release emotion even when I have wanted to. But by that point I was beyond hysterical. Midwives and health visitors tried to talk with me but all I wanted was to be left alone. There were constantly people in and out doing different observations or asking if I needed anything, and I just didn't have the space to process what had happened. The night before I had spent the early hours waiting whilst they attempted multiple times to insert a new IV canula after the first one came out of the vein and lead to stabbing pains with ever pulse of the IV machine and the antibiotics going into the muscle around my arm which swelled up like a balloon.
The lead midwife realised I needed space and put a sign on my door saying to stay out. With the security of knowing no one would find me crying I let go, and felt like I would never stop. It was therapeutic to process each step of what had happened; the ibs and midwife's worries about cancer, the extreme fatigue, the PROM and the weeks stay and stress and fear from that and then everything I had experienced during and after the labour.
I must have sobbed for over 2 hours until I was physically and emotionally empty. I then made the decision that I needed to go home. Although it meant leaving Adam there; and not knowing if each hour would be his last, I mentally needed to be home. I needed to be somewhere I could allow myself to rest and heal so that I could physically be there for Adam, I needed to be able to control my diet so that I had the physical energy to sit by his incubator, and I needed to be with Tilly; Adam had 24 hour supervision and there was nothing i could do for him there; I felt he wouldn't even know if I was there or not. Tilly however was becoming more and more scarred with every day I was away and needed me to be with her.
It's the hardest decision of my life to seek to be discharged. I was again consumed by guilt about essentially abandoning Adam and not knowing if I would make it back in time if he took a turn for the worse.
It was decided I would return to my parents house and that Tilly would be brought over in the day and stay with Sam at night incase she accidentally jumped on my scar. On the car journey home I felt only the pain from every bump and lump in the road. Emotionally I was completely broken; I felt like I was in the deepest pit of despair and would never be free to get out. I felt nothing but sadness, emotional pain and trauma and could never believe that I would ever feel anything again except extremely broken.
We did eventually bring Adam home despite all odds. He also came home 'early' at 37 weeks as most micro prems don't leave until after their due date. He left hospital breathing air (no oxygen tubes) and only vitamins for meds. We only received a handful of cards as people were too wary when he was first born, and it seemed redundant by the time he came out as he was already 3 months old. I spent the first few months waiting for him to die; to stop breathing or catch some infectious disease and be taken from us. Even months after when he was clearly doing well I couldn't shake of the spectre of doom that haunts NICU. We witnessed several Angels who lost their life during Adams stay.
It took me awhile to mentally come to terms with what had happened. My biggest regret was trying to prove everyone right by being strong and a figher; and thus not talking to the councillor the hospital offered. Inside I was dying a thousand deaths over and over, going through every level of Dante's hell and yet still trying to keep a smile on my face and make the 'best' of things.
It wasn't until August, 6 months after Adam was born that it hit me what was troubling me. He didn't feel like my baby, as much as I cared for him it felt like I had lost my child; was grieving for him, and that Adam was someone else's child who had been given to me to look after. I felt like I had missed the first 3 months of his life. but then it dawned on me that he was still going to go through those 'baby phases', I would still experience them with him.
And so this is why I may appear distant or quiet when it comes to the date of Adam's birth. As much as I would like to forget it all and just experience excitement for the big day, I still appear to be plagued with flashbacks as the date approaches of everything that happened. Instead of memories of the laughter and joy as he entered the world I have memories of desperation and fear, I didn't get a first cuddle; that didn't happen until he was 6 weeks old. I missed his first feed and his first nappy, I didn't get to choose his first outfit and dress him (a nurse did it when he was 9 weeks old) I didn't get to choose his name, share the excitement of his birth with the world or show him off to friends and family. When I first left hospital my arms were empty and every hour I was fearing would be his worse. Instead of fretting about lack of sleep or what takeaway to order my constant thought was that he was going to die without me being by his side and I wouldn't get to say goodbye or hold him as he let go.
But this year I'm going to try and to take a stand against my pschey. Instead of thinking of the day when he was born, I'm going to focus on Adam as his is now, at this next milestone, and what a wonderful and beautiful and ultimately healthy and Living child he is. If I could have known with hindsight everything we went through; all the pain and mental torture, I would do it in a heartbeat...
... For He has stolen my heart for all eternity and I will always be grateful for the day we were blessed by his arrival and his birth <3
