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.