Posted on

The Last First Day

The first few years with a baby of full of firsts. There is so much to look forward to, some things you want to fast forward, like the projectile poo, and other things you want to pause on, like the snugly early morning cuddles. The first few years with a premature baby is survival mode. Once our 26 weeker graduated NICU, the medical hurdles did not ease, they just slowly spaced out, her readmissions a constant every few months, tapering off as she grew and her immune system became stronger. We very much kept to ourselves, cocooning our little family away from the germs of the big wide world. Sanitiser was in every purse, nappy bag, pram and car well before Covid hit. The stares from strangers as I would sanitise and wipe down tables, a behaviour now commonplace amongst the general population, and the unintentionally insulted friends and family as we declined invitations when there would be a crowd isolated us further. No-one truly understood what we were battling, why we were so protective. It was incomprehensible for those who haven’t swam in the waters that drowned us, to understand why we held such fear, even after our miracle and I survived a horrific and truly traumatic in all sense of the word childbirth.

No two experience of motherhood are the same, even within the same household. I parent my four children differently, both consciously and subconsciously, for a variety of reasons. My eldest needs single instructions at a time, or she freaks out, my middle girl needs more cuddles as she has a sensitive soul, our only boy, squished in the middle, needs more time to himself, to escape his sisters, but loves his one on one with me as we read books at night and sing our special song, and our youngest, she has needed me the most, and perhaps I have needed her more too. Our youngest is a child who we nearly lost, several times. A child who spent her first three months in hospital, away from her family, our one hour of kangaroo care time a day all I had with her for so long. She is a baby who was born breathless, no air in her lungs, blue and on the verge of this world and that world up there in the sky. Our youngest bares battle wounds as do I from our time in hospital, mine ending a few weeks after hers began on the night of her birth, 14 weeks too soon. Her tiny hands and feet are dotted with scars from needles, her nose ever so slightly squished from wearing a breathing mask for so long, her beautiful big blue eyes covered by glasses after her eyesight was nearly robbed by retinopathy of prematurity.

Prematurity can be a curse that follows you, it can rear up and remind you that your early exit from the womb will cost you, again and again and again. But prematurity can also prove you a warrior, a tiny fighter, one who doesn’t give up. Our miracle baby is strong, she is brave, she is determined and she takes on hurdles with the grit of a warrior, unafraid to fight, ready to battle, ready to reign as the queen she is. Since bringing our baby home from NICU we have worked hard to protect her, and also to prepare her for the big wide world. Having her start kindergarten on par with her peers has been a focus, but spending time with her has been our priority. In some ways I got more firsts with her than I did with my other children. I got to see her blink in the sunlight through her Perspex box as she was transferred between hospitals in a humidicrib at 10 weeks old. I again got to see her absorb the outside world when we finally brought her home at 3 months old. Then at just over a year old when she got her first prescription glasses we were able to witness her watch in awe at the tiny details she had previously missed. Seeing her seeing me in high definition for the first time was an amazing first I will never forget. The prescription goggles we got a year later allowed her to see the ocean in all its glory, to notice the tiny grains of sand that make up a huge mass of yellow beneath her feet. Now she is ready to start school in glasses with fancy frames she chose, aptly named Rock Star.

During her pregnancy I had different firsts from my previous pregnancies. My first bleed during her pregnancy, at just 7 weeks gestation, the moment at 25 weeks when I lay in a hospital bed bleeding so heavily theatres were being prepared for her delivery,  she did a trace for the first time, her heart thumping loudly through the machine telling us she was strong, that she wanted to live, a midwife announced for the first time she was for resuscitation. The first time it was declared doctors would try to save her, and yet we both were able to hold on for five more days. In NICU she had many firsts, her first time ventilated, her first trial off CPAP, her first tube feed, her first doses of so many medicines designed to keep her alive, her first blood and plasma transfusion, her first hot cot, her first bath, her first outfit. The most memorable firsts were the first time I met her, a week after her birth, and as I reached my hand in through a porthole in her humidicrib she grabbed onto my finger, a silent promise that she would fight. That was also the first day I heard her cry, then witnessed her soothe as I sang to her, she knew the sound of her mummy’s voice. The first hold the following day was euphoric, something we had only dreamed of, a moment we knew might never happen. Her first breast feed several weeks later, her first time meeting her siblings and the first time they held her when she was 11 weeks old, each one instinctively kissing her on her feather soft hair on her head. Then her first trip in our car on her way home, finally truly with us.

My first first day of big school happened before our youngest was born, it happened as I lay in hospital on bedrest bleeding heavily, knowing I might lose the baby inside me, desperately missing my three children at home, and wanting to be there for our eldest on her first day of kindergarten. The best we could do was have her daddy bring her in to see me on the morning of her first day of kindergarten. There he lifted her up into my bed, sat her beside me and handed me a brush and hair ties. I braided her soft golden locks and breathed her in, my first baby off to big school and I was missing it. We did the obligatory first day photo, her standing against the hospital wall of my confines, then she was whisked away as I lay there staring through tear covered eyelashes  at a photo of our three children and an ultrasound image of the baby inside my womb, the one who needed me most that day. Weeks later I was able to do school run and the pain of missing my eldest’s first weeks at primary school stung a little harder when I saw the routines she had already established with her daddy. I love that they had this juice box drill where they sat on a silver bench outside her classroom at the end of the day and sipped apple juice as they shared their days. But I was in pain that I wasn’t a part of it. Racing between hospital to see my baby and home to pump her breast milk three hourly and trying to recover myself from lifesaving surgery made the times I could be at school to collect her bitter sweet. The mums would ask me where my baby was, “In NICU” I would stammer. “Is she normal yet?” they would ask. What do you mean? I would stare back, their words ignorant and hurtful. “When will she be normal?” one mum corrected. ‘She will never be normal, she is and always will be extraordinary’, I whispered in my heart as I waved and said I had to leave, clearly an outcast among mums who haven’t know the world of the NICU ward, the bereavement and blessing it brings.

Now like a freight train hurtling at full speed we are fast approaching our youngest baby’s first day of kindergarten and the denial that it is actually happening is dripping away in tears and gasps at how did we land here so soon. Our baby is now 5, she still sleeps next to me because waking to check she is breathing (part of my PTSD) is exhausting, the sound of her breaths soothe my soul. She is my shadow and I am her favourite and we have a bond like no other. I know she is ready. Her preschool says so, her latest growth and development assessment whilst highlighting possible hurdles says so, the tiny uniform in her wardrobe waiting, size 1 by school standards and still too big, says so and her birth certificate says so. I know she will do amazing, she is impossible not to love. Her joy is contagious and her smile and giggles are sunshine and rainbows. She is my miracle baby and whatever lays ahead I know she will conquer.

Her first day of kindy will be my last first day of taking one of my babies to big school for the first time, the first massive step away from the security of my side. But I can’t promise it will be the last day of me ugly crying at the school gate, because this is a different first day, this is a first day we for a while thought we could only ever imagine. This is a first day for a child who has defied all odds to be in this cohort with her peers, and she is not just on par with them now, in many areas she is exceeding, even with my mum bias. This is the first day for a little girl who has taught us so much about strength and determination and love. She is going to be a game changer for her teacher, a beautiful cheerful classmate and friend for her peers and a wonder for everyone she meets. This is our last first day of kindergarten and my heart is brimming with pride and breaking all at once. My tiny fighter is ready to take on the world, one day at a time, but I will be there holding her hand as we enter the school gates and I will be there waiting to scoop her up into my arms after the end of school bell.

To all the parents sending their precious prems off to big school, I salute you. I know this is a bundle of emotions, and I know the journey has been rough but we have made it this far and we will keep on going. Prems are strong,  prems are determined and prems are powerful, reminders that miracles can and do happen, reminders that life is meant to be about time and love and spending time with those you love, and hitting milestones in your own time, and owning the individual journey you are on. Prems are their mother’s heart walking around outside of her chest, they are defiers, they are extraordinary.

https://www.instagram.com/mummyminute/

Posted on

I didn’t sign up for this…

At the end of term 2 there were mutterings that lockdown was inevitable. We were told on the last day to take everything home with us, to prepare for remote learning. There as a nervous buzz in the hallways as we crossed our fingers and placed our marks books in our bags. It has been the way of the Government to make decisions that concern us as a profession and then go and announce those decisions to the entire population before telling us their plan. I’m not even sure they know their plan, they are making it up as they go, it’s changing at every turn. A more recent change is the coercion into having our entire profession double vaxed, abolishing our right to autonomy over our own bodies.

Week 11 into this lockdown, at a guess, I’ve actually lost count, and there is a  student in my year one class I haven’t ever met. I see his video responses and mark the work I’ve set for him and his classmates who have also not met him, but I do not know this child. I watch as my own seven year old struggles with remote learning, staring at a screen listening to his teachers instructions as I work away at creating online lessons for my own class. My son sits beside me learning to wag class by muting his teacher and leaving meets early arguing they won’t notice if he logs off.

I thought I would be able to access some sort of leave because surely with a husband who works full time from home and four children aged between 10 and 5 it would be impossible for me to maintain my own work load on top of now homeschooling three children and trying to tend to the basic supervision required for an active preschooler. But when I asked, thinking maybe between my husband’s work and mine, we could juggle my work days with a few sick leave days thrown in for good measure my boss told me “Your kids will just have to suffer, like mine did last year”. But why is that? I noted the ages of her two children, one an adult who works at the same school and another in the last years of high school, vastly different from primary school and preschool aged children and my brood doubling her number. I knew she didn’t mean it in a bad way, it’s just that is the way, the way of teachers.

I had only just returned after a decade of maternity leave and boy did I walk into a shit storm. “Are you okay?” my boss asked on one of the first zoom meetings as I grappled with learning new technology, several online communication platforms and a nasty cold (not Covid, I had a test). Did my shaky voice and tear filled eyes give it away? No, I wasn’t alright, none of this is alright. I haven’t had a sick day when I would have been in no state to teach onsite and now I work more days than I am paid for, attending meetings whilst my children flitter about asking for help with their own learning and what can they eat now and when can we go and play and she hit me and he took that and when can we stop, I’m so bored and I hate school work!

I had our older three kids attending school onsite on my two paid days of work, so I can stay stuck at a computer, my children guided by teachers at school, so I can attend to my class online. My preschooler also went to preschool on those days until I was told she was no longer allowed to attend. But then last week we got the phone call no one wants, our school aged children are close contacts of a positive case from their school. The fear this has filled my kids with is horrifying to watch.

The nurse at the drive through testing clinic kept asking, “Any more?” as my children bundled out of their seats and over to my lap to have their mouth and nose swabbed, clutching teddies, tears streaking their cheeks. When the army and police showed up this morning to check we were in fact at home on house arrest I felt like a criminal. Not because we were doing anything wrong, but because it was all so dramatic. “Do you need anything, any medicines you can’t order online?” the officer asked after a brief roll call. I hesitated, I could possibly use a Diflucan but can I really ask an officer to get me lady products? At least he was able to tell my seven year old son he has to do his home school work, although that has had no affect on his progress so far. So the police officer and Army clad soldier left in their unmarked car, promising to return again, and again, and again, whenever they please.

The fact Sydney is divided into the East and West is more prominent than ever with suburbs caught up in LGA’s , some only a street away from a green zone yet stuck in the forbidden cities. A complete mismanagement and an inability of the Government to update their status and consider the affect this is having on smaller suburbs that have next to no cases and should be cut some slack, means some Sydney siders bask in the sun at beaches, huddled together whilst other households walk the same pavement day in day out unable to enjoy the sunshine Spring is offering, their recreation muzzled and timed.

The mask wearing and checking in has only heightened my children’s sense that their world is now fractured. It is creating a generation of untrusting children who fear even the air that they breathe, unable to look forward to anything as so much has been taken away. I didn’t send my kids in face masks to school, I know from experience it only promotes face touching and the movement of saliva and nasal secretion between face and fingers and surfaces and back again. I do not regret it, even as they are now deemed close contacts. Kids run about in playgrounds, kids practice using and reading facial expressions as they learn and develop friendships through social interactions, and some kids also wear glasses, all hindered by a mask.

I worry about my class when I do return to mask to mask teaching, as it is no longer face to face. I have students who are still learning the English language, some who have come to my class with no English at all. They will recognise their teachers by reading our names embroidered on black masks, if they can read yet, unable to see our welcoming smiles, unable to read our expressions and pick up on the nuisances formed by these facial movements. I will have to get very adept with eye movements relying on them to show all ranges of emotions. I also worry for those students who are hearing impaired, who rely very much on reading lips to decode the words as we say them. Will they just be left behind? Then there’s the segregation mask wearing causes. Given my children are told at school that ‘wearing masks is kind’ does this imply not wearing masks is mean? There is no mandate for primary aged students to wear masks, but this is surely a segway for bullying and exclusion as there becomes a divide in the student body. I know pressure will be placed on me to coerce my own class to wear masks but I can’t do this.

The guilt of working from home and its hindering my mothering capacity  seeps in and steals my sleep. I’m awake typing this as they all sleep. I should have played more today, I could have been happier, I should have been more productive and had more enthusiasm. I honestly don’t know how Victorians have coped, they are in way deeper than Sydney having spent much more time locked up, caged to their dwellings. Every week the demands of educating remotely are increased as schools compete to offer the best learning resources and sense of connectedness for their students. It’s what teachers do, strive to do better, to always assess, reflect and improve. But it’s exhausting, and I don’t think it’s sustainable. I’ve seen it from both sides now and it’s brutal on both ends. Teachers are working overtime, way more than usual, their home refuge now a work hub. And parents are struggling between their paid jobs if they still have them and their parenting demands, running a house and running online learning all whilst running on empty with no outlets for self care like the gym or salon or alone time. Technology is the best at bringing out the worst in people. How many times does the WiFi have to shit itself and the passwords, oh the fucking passwords.

Then comes the question of workplace safety. The form I was sent to fill in about my new ‘workspace’ was laughable. Do I have an ergonomic desk? No. Do I own a mouse for my computer. No. I have a tiny laptop with a tiny screen, the one issued to me on the last day of life before lockdown. Do I have a chair? Just the couch. My kids will take over the dining room table, and every other surface, with their homeschooling. Is my workspace free of trip hazards? Was Lego invented? Does having kids allow a trip hazard free space…ever? I was honest on the form and then told that if I injure myself whilst working nothing will come of it. I didn’t expect it to.

After heavy downpours back in February my classroom at school is still waiting for the now surely mouldy patch under the air dried carpet to be made ‘safe’. When the air conditioner attached to the same wall where the water gushed in craps out I fear that the electricals aren’t functioning correctly. But there are thousands of classrooms across Sydney, so we will wait for a fix that will likely never come. And now there are millions of at home classrooms, full of hazards. And where does the onus lie for keeping the kids safe? What happens when a child injures themselves doing a school task? Whilst we think through every task sent home for its achievability and safety there will always be hazards. Pencils can be sharp. My seven year old took great pride using an electric sharpener to sharpen all the pencils ready for home school and then left them on the floor as that is my children’s most favourite organisational space. It didn’t take long before one became lodged in a foot and my five year old screamed for a solid half hour as the broken lead was removed from underneath her skin in our doctor’s surgery. What about all the people staring at computer screens all day every day. I have seen many of my own class get the corona haircut with the boys becoming shaven and equally as many now wearing glasses that they previously did not have. And what of our posture, it can’t be good for our spines to be hunched forwards all day, will the Government fund physios and chiros for those affected by the restrictions? Will gyms become free so we can all lose our Covid Kilos and get back to good health?

I feel more like a detective these days, staring at the videos sent in, listening intently to the audio, ready to pick up on anything suspicious. And I’m lucky, because my class have great parents, but they are all human, and they are all struggling. The day I had to call a mother to ask how their day was going because her son had written about the chances of his parents having all the beer was highly likely I felt so much for all my parents. Their private lives are being exposed as their darlings unwittingly share what goes on behind closed doors. It was a Friday so her son was right, it was highly likely his parents would consume beer but I was thankful to find out he wasn’t given access to the alcoholic stash and an hour later beer was changed to soda in his online maths answer.

These are unprecedented times and something has got to give. This will define our younger generation and either make them resilient as fuck or breed children who don’t allow hope to take place in their hearts as so much of what they enjoy has been taken away. I have watched my own children lose the social connections with their peers that they crave, miss music and dance lessons, learn to learn through zoom, become fearful of germs and police who might get us in trouble for trying to maintain somewhat of a normal childhood. “Mummy, if the police come we will tell them we are walking home” my nine year old promises as we walk to the park, the fresh air and exercise so badly needed for our withered spirits, prior to our current house arrest. Our calendar is now blank, the first two months of this lockdown, birthdays were erased, dance competitions crossed out, soccer and gymnastics practice deleted. ‘Covid sucks ☹’ my ten year old scribbled next to our cancelled holiday. And whilst we try to make the best of things, turning our garage into a makeshift dance studio, having at home birthday celebrations where we pretend to eat at a restaurant and pretend to be at the actual movies and pretend the fancily decorated oversized cake is necessary, we are really just trying to save our children’s childhoods.

I didn’t sign up for this, no one did and as we stare down the barrel of the threats of no face to face regular schooling this entire year, despite now having a date that will or won’t change, it’s hard not to lose heart. I worry for my kids. I worry that my youngest won’t be school ready now preschool is cancelled. She attends a preschool that runs only for school hours and only for 4 and 5 year olds. Its specifically for school readiness. She so loved to social interactions and learning about making friends and sitting as a group listening to stories and all the art and craft that was on offer. And my year one child, who has now essentially missed his first two years of schooling, who is struggling to read and has lost the social skills learnt in early schooling. Then my year three child, perhaps she will come out the best in all of this, it’s the middle years after all. But her gymnastics, how will she get back to her squad, how does she maintain her level with no access to coaches and gym equipment. Where will our sport stars of tomorrow come from? And what about my year five child, such a pivotal primary school year. She has big dreams this kid. Her dance nationals have been taken away, our holiday to Queensland canned and even still she is continuing to train her best in our shitty garage surrounded by clutter but on the dance floor her daddy built. But what of her aspirations to become a student leader, will her cohort even get a chance to vote? Is there any point anymore? The current school leaders have not had a chance to run cheer squads at carnivals or speak at assemblies. Today I was thankful our kids have been to a zoo, I mean what about these kids who have been born into this, who haven’t met relatives and are now toddlers. Will their first visit to a zoo be when they are teenagers? When is the world going to open again? And if it does open, will we ever have an undivided society again where medical choices are private and our postcodes don’t determine our freedoms?

I’m fatigued. We all are. And whilst I completely understand the need to keep us all safe, trust me I know, our youngest has chronic lung disease and we have had more than our fair share of time spent in hospitals watching helplessly as machines breathed for her, so we get it, we get how serious ICU and inability to breath is, but at what point will the psychological impact be weighed into this? Last year I was scared, but as time went on and her doctors told us she would be able to fight Covid, we are now more frustrated than anything. Mounting evidence is being built that suggests overall, children are at more risk from the flu than Covid. Will the government offer more school counsellors? Doubtful, they don’t have enough resourcing put into it as it is. Will child psychologists attract a higher Medicare rebate? Probably not. Who will support the parents who have tried their best to keep the schooling going at home and their families afloat as more restrictions are lumped on them week after week. And are we at all prepared for the long term consequences of the lack of formal schooling for our youngest students? Will the university entry levels be scrapped? Will we have kids learning to read in year 3? Will schooling be dragged on longer or will there be a new space be made for an in between educational institution to catch kids up stealing more of their childhood? Are parents prepared to learn their children have not progressed as they would have had they been in formal schooling.

I hope the opposite will happen. I hope this generation will learn more about family and working together and helping around the house. I went into this lockdown wanting for my kids to come out of this happy and healthy. It feels like survival mode now. I will try to maintain their childhoods, try to enjoy the no paced lifestyle but being a teacher and a parent we feel we have less time than ever before. Even without the chauffeuring to and from activities, there is simply no time left for just us, and that is exhausting. So if you don’t get through your kids school work, that’s okay. If you aren’t as productive, its understandable. If your kids slip backwards academically they will catch up. Resilience is being built, alongside anxiety. That is the internal war we are all facing at the moment.

Posted on

Secrets About Parenting a Prem

When you are pregnant you hold many hopes for your baby. A safe delivery, a name you have chosen,  how you will celebrate their life before it has even begun with a baby shower, how you will announce their birth,  how when they are old enough they will call you Mummy, or Daddy, about what they will look like, what they will be interested in, what they will achieve, about how you will hold them and breathe them in as you proudly present them to eagerly awaiting family and friends. Having a baby born too soon is a bit like looking at all these hopes in a mirror, taking a large heavy rock and throwing it at the mirror of happiness you have imagined and watching as it shatters into a thousand shards of glass that cut you as you walk through the rubble. This isn’t to say there won’t be happy times and fond memories made with your premature baby, just that they will be different and it will be hard and nothing you could have ever imagined, but you will get through it because the love of a mother is fierce and capable of overcoming anything. The outside world keeps moving and doesn’t notice the daily struggle of preemie parents, so here’s a few things I wish the people around me knew, especially in the early days.

Grief

We are lucky, our baby who was born at 26 weeks and 3 days, on the brink of life and death at the same time, born into this world blue and not breathing, reliant on the quick thinking and precise actions of the awaiting team of neonatologists to fill her tiny lungs with air, we are lucky because she survived. It can be hard then for the outside world to understand that my husband and I still held such pain and sorrow, and went through a rather harrowing journey of grief. In my case I also lost my fertility as a caesarean hysterectomy was needed to save my life, and thus the body I knew and was familiar with was taken away and replaced with a scarred mess, weak from months of bedrest. But that is only part of our grief. We grieved so many things that a normal pregnancy entails. All the promises those two pink lines filled our hearts with just 6 months prior to her birth. We had imagined how we would announce our pregnancy, how we would celebrate with a baby shower as she would be our last, how we would smile at each other as we felt her movements inside me, how we would enjoy watching my belly grow as she grew inside me, how we would choose a name together, having 9 months to decide, how we would announce her birth to our family and friends, how they would visit us and bring her gifts and gush over how beautiful she is, how we would go home together as a family, how we would hold her on our chests, picking her up when we wanted, which would be always, how we would proudly show her off at our daughter’s preschool, about how my huband would have a few weeks off work so we could bond as a family, about how our older children would hold her, about how I would breastfeed her through the day and night, how I would carry her in her carrier and how she would always be close to me. We lost all these things.

There was no placing of our baby on my chest after birth. Her birth was the most traumatic frightening thing I have ever experienced. (Inside My Womb) Apart from knowing I might die, the agonising pain of a preterm labor marred with sepsis and abruption, I also knew when I woke, if I woke, I might wake to a world that didn’t gain a baby, but instead a world that is too painful to bear, one where our angel didn’t make it earthside. When I did wake, the following day after hours of surgery and 14 units of blood products, adrenallin and life support keeping me alive, there still were no cuddles. I had to wait 5 days to see my precious miracle baby, and another few days to hold her. And it wasn’t easy holding her. The time it took for the nurses to delicately place her naked on my bare chest, adjusting the breathing apparatus, lines and tubes that were keeping her body alive, just to hold her for a short while, was something I could never do on my own. For the next 3 months if I wanted to hold her I had to wait for enough nurses to be available, for her to be well enough, for a kangaroo care chair to be accessible, for all the stars to align so I could hold my own baby. It was worth all the fussing and preparations because those cuddles, they saved me. Without those cuddles I wouldn’t have bonded with my baby, my milk supply wouldn’t have been as abundant as it was, and I wouldn’t have coped mentally. On those days when I could not hold my baby, I fell apart. Hormones of a new mother coarsed through my veins, without my baby I became like a caged wild animal, helpless, fearful, and bitterly distraught.

I did all I could as a mother to an extreme prem whilst she was in the NICU. I learnt how to sanitise myself and everything that went into her room at hospital, I learnt how to change her tiny nappy, how to wipe her eyes, how to check her temperature, how to change her foot probe that monitored her oxygen saturation and how to gently touch her without affecting her lines. I learnt her sweet smell, her touch, the sound of her tiny yet strong cry. I watched as her legs stretched out and remembered feeling those exact movements inside my belly for the short time she grew there. I learnt that we would have good days where she would be stable, and I learnt we would have bad days wher she would require additional medical support. I expressed breastmilk 3 hourly around the clock, and every day I went home to an empty bassinet, pain medication and a mechanical pump. It was tyring and lonely. My husband worked to keep us afloat financially and I looked after our 3 older children (then 5, 3 and 1), relying on the generosity of my mother, mother in-law and our community to allow me time to visit her in the NICU. I put my own physical and mental healing on hold. Our world stopped as our focus was on survival, of our beautiful baby and of our family being whole. Our children rarely visited our baby whilst she was in hospital. The risk of infection was too high. They never got to hold her, a gentle touch here and there was all they were allowed. Whilst our world stopped, the outside world kept going. Our baby was forgotten, our daily fight was invisible.

We had some (four) NICU passes for family members. Some weren’t ever used. Too busy to come see a baby born too soon. I will never understand what reasons were had but it’s safe to say after enduring something traumatic it becomes uniquely clear who is really in your circle. Of the passes that were used only one person returned on a regular basis to see our baby on her NICU journey, and that person was my mother. When she could she would visit our baby with me, she would marvel at how she had grown, never mentioning how different she looked to a term baby. She would see the beauty in our miracle, in her strength, in her endurance. Other comments came, one person said she looked like a foetus. No emotional connection able to be made as this person barely viewed our miracle baby as human. Strangers, other mothers on the school run would enquire if our baby was normal yet. I didn’t know how to respond. She was anything but normal, she was and still is extraordinary.

At the end of her NICU run, rather NICU marathon, when we neared discharge, the day we had prayed for and waited for for so long, husband applied to use his parental leave. He was denied. His boss claimed our daughter was no longer a newborn, he said she was 3 months old. Our baby was 38 weeks gestation, younger than some babies are when they are born. She was most certainly a newborn. She barley weighed 3 kgs at this stage. How could the outside world not see this? I was devastated. We were now to miss out on this time together, after already missing out on so much. My husband had gone to work when I was still in ICU. He had missed so much of her NICU journey because he wanted to be home when she was finally home, so we could adjust to our new normal. Because taking home an extreme premn isn’t like taking home a newborn, there are a lot of additional challenges, which we will get to later. Almost two years on and I am still angry at his boss. We felt robbed.

Anxiety

Having a preterm baby drums up any and all anxiety that dwells within us. There is so much to be fearful of. The late night phone calls from private numbers, will it be the call to come in as our baby is now critical? The unknown that doesn’t ever dissipate, it just changes. When our baby was in NICU the unknown was whether she would get a brain bleed and if she did how would this affect her? Would she be disabled because of her early birth? Would she be able to breathe on her own once the doctors trialled her off the breathing support? Would she need more transfusions? What would the daily tests reveal? Would she get an infection which chould threaten her life? Would the R.O.P rob her of her eyesight? Would she get necrotising gut because her body simply wasn’t ready for breastmilk? Would my breastmilk be enough for her or would she need TPN? Would I be able to hold her tomorrow, or the next day or the day after that? If I do hold her will I hurt her? And that’s where the guilt steps in.

Along with the anxiety comes the guilt. It’s my fault our baby came early, even though I did everything in my power to grow her inside as long as I could it must in some way be my fault. It’s my fault she is enduring all this pain simply to live, it should be me getting all those needles, not her. It’s my fault she will have whatever problems arise later in life because of her early birth. It’s all my fault. As mothers we are great at blaming ourselves, possibly out of fear the outside world is secretly doing this already. Yet as a mother to a preemie this guilt is compounded and it is truly unbearable to watch your baby in pain fighting the long fight day after day, week after week, month after month. I promised our miracle baby the fight would be worth it and her smiles and laughter today tell me it truly was worth it.

Hand in hand with anxiety goes PTSD, and with all the focus on the baby in NICU often the parents are overlooked. Their mental health is paramount to make it through this journey and come out the other side strong and whole. Yet often their needs are forgotten, pushed to the side. I was not meant to drive for several weeks after my surgery, I was effectively placed back on bedrest after my hospital discharge a few weeks after her birth. Yet you can’t keep a mother from their baby. There is this primal instinct to be near your young. If there aren’t adequate support networks in place the physical and meantal wellbeing of the parents can be shattered as they do all they can to support their baby in the NICU.

After the NICU journey is over, in the sense the baby is finally home as the journey is never really over, the intense germaphobia kicks in. The fear of germs is real, it has been drilled in during the NICU stay, the smell of hand sanitiser deeply cemented on our minds, the image of our baby on life support forever etched into our brains, so the need to protect our preemie from any potential germ threat is severe. Our older kids quickly learnt to remove their shoes, changes their clothes and wash and sanitise their hands after coming home from anywhere. A sneeze and you were banned from being in the same room as our preemie. We sheltered from the outside world, cocooning ourselves in the relative safety of our home. And as she grew we gradually branched out and relaxed our new laws. Yet the devastation that a park trip two months after her discharge sent our baby back to hospital in isolation on a plethora of IV antibiotics nearly killed us. And again our guard was up. And this fear and fight to protect our baby is what leads me to my next point, the isolation.

Isolation

Whilst our baby was in the NICU, it would be only me visiting her every day, husband would come on weekends, but with three other young kids at home he was needed there so I could be with our baby. So the journey became lonely. Husband learnt our baby through the photos I took of her. He denied himself kangaroo care cuddles so I could receive them as he knew how healing they were for me. We were only allowed to hold her for up to an hour each day. It was never long enough. When she made it through to special care and was transferred to a smaller private hospital with the goal now being weight gain and feeding on her own, I was required to visit many times a day at 4 hourly intervals to try to breastfeed her. How I longed to have husband by my side on those quiet and lonely night feeds. How I wished he could see her little cheeks fill with milk and hear her breathing on her own. How I wished I could take her home and not leave her in the hospital knowing she would now know when I was gone. How the thought of her crying for me killed me every single day.

When she was home the germaphobia made us somewhat hermits and so the isolation continued. Our friends drifted away as we neglected invitations to social events in an attempt to shelter our miracle baby from any potential germ threats. No-one understood how long this journey would be, how her body was immunocompromised because of her early birth, how even at 6 months old she was actually more the size and development of a 3 month old. How as she grew our weeks filled with appointments, physical therapy sessions, assessments and new doctors for our baby. How time consuming and costly this was. How our older children ached for our attention yet happily cradled their new sibling at home in our own quietness.

When our baby was older I tried to join back into the playgroups I was familiar with yet it wasn’t the same. There was such a big misunderstanding about preemies and some of the comments were again hurtful. I don’t understand why some people speak when they have no knowledge about things, yet they do speak, and they hurt with their misguided words. And then the conversations, comparisons and  complaints of other mothers now seemed so trivial. They would whine about their baby not sleeping, but this was not something that ranked as a concern for me anymore. After worrying about your baby not breahing, and suffering panic attacks during the night prompting checks that she is breathing, the topics covered by other regular mothers seemed so insignificant. After worrying about your baby maintaining their BP and body temperature on their own so they don’t get a brain bleed and so they don’t die, a teething baby isn’t even an annoyance, but something beautiful as it is all normal baby stuff. I remember a time when my eldest needing a tonscillectomy at the age of 4 was the hardest thing I thought I would endure as  a parent. Wow was I wrong. After seeing our baby battle for life,our most recent trip to hospital with our second youngest child, now 3 years old, last month to surgically remove a coin he swallowed seemed like childs play to us. We are lucky in Australia to have the Miracle Babies Foundation offer Nurture Groups where I can take my miracle baby and her siblings to a parents group that is more of a support network. It is a safe place where sanitiser abounds, and parents adhear to a strict no sick kids policy meaning there is not the worry our baby will catch something. It is a place where no judgement is passed and where we cheer each other’s kids on like no other. There is no competitiveness, we know our miracles will reach their milestones when they are good and ready to and when they do we will all cheer triumphantly and together. Yet outside these group times, the isolation can still affect us. Some friends still don’t understand why indoor play centres scare the crap out of me (all we see is a cesspool of germs) or whey when we hear coughing we make hast to the nearest exit or why we continue to wipe down tables and benches with wipes laced with sanitiser, or why it is so hard to pin a time to see us (many appointments, germaphobia and illness; there was a time when hospital stays far outnumbered any holidays for our family).

Uncertainty

The uncertainty of what the future will bring our baby born too soon looms over us, following us like a lurking shadow. We wondered at one stage if she would sit on her own, if she would walk alone, or even talk. Now she is nearing her second birthday, her correct age being only 21 months as that is the age she should be if she was born at term, we know some things. We know she has glasses so she can see, we know her osteopenia is being managed with her vitamin D supplement,  we know she can sit and walk and talk, and boy do we know she is feisty and determined and strong as hell. But we don’t know what her development will be as she approaches school age. We don’t know what the doctors will find on her next blood tests or at her next developmental assessments. And that can be scary. And lonely. And create anxiety and poke a stick at the beast that is PTSD. Yet some things are for certain when you are parenting a prem. We know how truly lucky we are. We know how truly brave and fierce our baby is. We know we have already beaten the odds just by being here. We know we are forever thankful for having her here with us. We know we are forever indebted to the doctors and nurses who worked tirelessley around to clock to keep her alive when she should have still been in my womb. We know how courageous she is. We know that we will never take anything for granted ever again, even a teething cranky baby who just won’t sleep. And we know better than anyone that our tiniest of babies has swelled our hearts to gigantic proportions. We know we love our littlest with our biggest love.

(668)

Posted on

To my Babies…

I wanted to give you the very best start,

But it happened that there was trouble with my heart,

It started beating and getting too fast,

The labour went on but the doctors wouldn’t’ let it last.

My choice to birth naturally was taken away,

Daddy and I cried, both in dismay,

What we had planned, we now had no say.

 

The doctors they hurried and rushed about,

Cutting and pulling to get you out,

Ripped from my womb, and taken away,

A brutal start, a difficult birth- day.

 

Suddenly I felt so very sick,

You were unwell too and were taken from me quick,

I was left all alone, scared and sad,

First I was upset, then I grew mad.

As the weeks went by and I didn’t heal,

The pain inside is all I could feel,

Until one day the bleeding started to gush,

An ambulance came and took me in a rush.

 

Again we were separated, again I would cry,

The doctors just looked, then they would sigh,

It isn’t my fault someone didn’t take care,

To clean and sterilise the instruments even though this wasn’t fair.

 

 

Regardless of how you entered this world,

You have been loved right from the start,

My sweet first born, my baby girl,

You will always carry a piece of my heart.

 

Just a year later we were delighted to find,

A test strip that presented us with two lines,

A dream the night before and I already knew,

Our hopes of another baby was coming true.

 

We sought the best doctor to this time deliver,

You were taken from me as my tears created a river,

I was so very nervous and terribly scared,

But I did my best to be prepared,

 

You were cut from my body and placed on my chest,

My body began to tremble, as I stared at you in awe,

You are perfectly beautiful as your looks will attest,

We were amazed at how planned and precise what we saw,

Our doctor continued to work on my scars,

To clean up the mess left from before,

We were now a family of 4,

who had come so far,

And you are divine, you we all adore.

 

Two more years gone and again we are blessed,

Our first baby boy is placed naked on my chest,

Bigger than his sisters and full of life,

A smoother cesar without any strife.

 

 

You are amazing my healthy baby boy,

You bring our family so much joy,

Our recovery was easier this time around,

And endless love for you is all we found.

 

Flash forward another year and I pray,

Please God don’t take away my baby that is growing inside,

My body imperfect for her to reside,

The first two trimesters is all we manage as I lay,

In hospital I stay as still as can be,

Fearing the bleeding will rip you from me,

Knowing that once you are out it’s the end,

I will lose my uterus, womanhood, my friend.

 

I try my best knowing the placenta is killing me,

But I must grow you as big as can be,

For if you are too small the doctors will not save you,

They will give you to Daddy to hold until heavens doors you are through,

 

Then one Summer Sunday my body gives way,

I tried so hard baby, I tried every day,

I am rushed into theatre, not knowing if I will ever awake,

Or if you will live, or if God will you take,

 

My body is cut right down the middle,

The doctors delicately remove you as they fiddle,

They try not to let the sepsis or abruption take you away,

They transfuse me with blood in the hopes I will hold you one day.

 

You are quiet, not breathing and so very blue,

I am bleeding out, my heart now failing too,

Together we fight, together we lay,

Daddy waits outside, he paces as he prays,

Dear Lord please keep my girls alive, please deliver them to me,

I will do anything, if you please set them free.

 

You are rushed to NICU and Daddy he follows,

I am left in theatre, as time I now borrow,

The following day I slowly awake,

I am strapped to a bed, no moves can I make,

My body hurts and I don’t know where you are,

Are you earth side, or are you a star,

Glittering bright, lighting up the night sky,

When I’m handed a picture of you, I begin to cry,

Then back to blackness my body goes, it is so weak,

I fall into a very long sleep,

But when I awake I am determined to get strong,

I want to see you, to hold you, but I am scared I will hurt you, as my body did you wrong.

I only held onto you for 26 weeks and 3 days,

You were not ready yet to see this world,

My body, it failed you in so many ways,

My youngest, my tiniest, my sweet baby girl.

 

A week passes quickly and they wheel me to you,

You are in a plastic box but I can see through,

Like opening a portal to my womb that was taken away,

I hear your cry for the first time that day,

I scramble to hold you but you are too small,

I place my hand through the hole in the wall,

Of your plastic crib and you grab on tight,

That’s my baby girl, you grow strong and you fight,

Your Mummy wants you so very much,

To breathe you in, to feel your touch.

 

Love is the reason I have my biggest scar,

You and I now have come so far,

You are now 1 and walking about,

You are taking and giggling and now we can shout,

We are both fighters, fierce and strong,

And I am forever grateful I can hold you in my arms, which is where all my baby’s belong.Estelle (6)