I have seen mummy bloggers reflect on their babies first year reminiscing on night feeds, first words, crawling and adjusting to life as a parent, the posts are lovely to read but I have always been acutely aware that these summaries of a child’s first year showed little similarity to the first year you experience as a preemie parent.
As many preemie parents know age and the question “how old are they” becomes a complex minefield and not just because of the constant switching between actual age and corrected age, your feelings about how old your baby seems versus how old they are on paper also makes answering the question a challenge.
Today my 31 weeker identical twin boys turned one, not their ‘actual’ birthday that was back in February but their corrected one, their original due date. I decided this would be the ideal time to write about the first year from a preemie perspective, giving a voice and point of reference to the alternative first year of a child’s life and the first year of adapting to being a parent of a preemie. As I sat and started writing what I thought would be a short blog post I realised just how much there is to say about the ups and downs, challenges and lessons you learn during that first corrected year. The short post I had envisaged has now become a series of posts looking at the first fourteen months of my twin’s life and our family’s learning curve, everything from NICU, RSV and PTSD to reflux, weaning and developmental delays.
Part one looks at months one and two, the beginning of our preemie journey and our shock introduction to RSV.
Month one (February 2015) – NICU
Fear, sadness, loss, emptiness, numb. Not the normal description of how you feel following the birth of your baby but when your baby is born prematurely and you can only stare longingly through incubator glass at the tiny life you have brought into this world these feelings become your new normal.
This first precious month when you should be bonding with your newborn baby in the safe cocoon of your home learning to feed them, comfort them and developing an intuitive understanding of their needs was for us spent travelling back and forth to hospital snatching a couple of hours a day staring at them helplessly. Feeding our babies involved watching drops of painstakingly expressed breast milk being dripped through an NG tube, comforting them meant stroking their hands through small holes in their incubators and understanding the needs of babies who haven’t yet learnt how to cry was challenging to say the least.
Having a premature baby removes all reference points for what you think having a baby will be like, there is nothing familiar or comforting and you are left exposed and shell shocked. You are learning to adapt to the situation whilst trying your hardest to juggle the parts of life that cannot simply stop like running a home, food shopping, cooking, washing and caring for your other children alongside learning to be parents to your precious newborn. The emotional strain and trauma you go through when you are thrust into life in neonatal is incomparable and in order to cope and continue functioning as parents to not one but three little boys who all needed their mummy and daddy our minds became numb, we existed on auto pilot throughout February, taking in every piece of pain and sadness, longing and guilt and suppressing it to the depths of us because that was the only way through the hell we were in.
We were extremely lucky though in that our boys were ‘simply’ feeders and growers. They needed to learn to feed, gain weight and learn how to regulate their temperature and breathing and they made remarkable progress. We celebrated each and every tiny achievement from increases in the amount of milk they had per hour to the reduction of the temperature in their incubators and little by little we were able to hold them more and take over their care. Certain moments that are special for all parents with their new babies became even more magical, the first time we held them, the first bottle we fed them, the first bath we gave them and the first time we held them without a monitor being attached are all moments I will remember vividly for the rest of my life.
In particular though there is one moment I will cherish forever and this is the first time their two and a half year old brother met his new siblings. The twins were only two days old and they were a tiny 3lbs 7ozs, they were under the photo-therapy lights with cotton wool pads over their eyes and little hats covering their heads, they had several wires and tubes coming out of them as well as nasal prongs and their stick thin bodies were exposed to the lights above, to adults they were frail, poorly little babies surrounded by unspoken sadness and worry but to our amazing son they were his brothers, he didn’t see a single tube or wire but instead said “hello” to his new best friends and asked when they could come home with us. I wished in that moment that we could all see the world through a child’s eyes.
February was the hardest month of our lives and I underestimated for a long time how the trauma of neonatal would scar me. As February drew to an end we were within touching distance of bringing our boys home.
Month two (March 2015) – RSV
Finally after 33 agonising days our boys were allowed to come home and in our eyes we ‘properly’ became parents to them, free to care for them and love them, protect them and raise them in our home as a family. Walking out of hospital each carrying one of our boys in our arms and bringing them home to surprise their big brother was the proudest day and the biggest relief.
From that day on we treated the boys as average newborns, just smaller. We had been told about RSV before leaving the hospital but we thought, perhaps naively “they’re fine now, they had no major breathing problems, it’ll be fine”, of course we washed our hands a ridiculous amount and every room had an antibac dispenser but other than that we were fairly relaxed. We invited close family and friends to visit and after they washed their hands we let them have cuddles, the way we saw it with a snotty toddler in the house if colds were going to come from anywhere they would come from him and we couldn’t exactly quarantine them in our own home. Our firm belief that the worst was over was smashed apart less than two weeks after returning home.
Suddenly after a trip to the neonatal until for ROP testing twin one started to struggle to breathe, his tiny body was freezing cold and his skin was mottled, his breaths were shallow and laboured and he couldn’t be woken. Whilst preparing to take him to A&E he stopped breathing, I scooped his lifeless body into my arms and as we rushed to the doctor’s surgery for assistance I rubbed his chest constantly managing to make him take a few shallow breaths each time. I stared at my beautiful baby as I cradled him in my hands and horror and dread consumed me.
When we arrived I started to run clutching him to my chest but my legs almost gave way, I was terrified, after everything we had been through, after everything he had overcome I could not, I would not lose him now. We were rushed to hospital and within four hours he had progressed from nasal prongs to low flow then high flow to CPAP and finally in intensive care he was put into a coma and intubated. I sat and starred at his tiny body and I willed him to fight whatever bastard of an infection was raging inside of him, he was a preemie, he had survived a MoMo pregnancy, he was strong, he could not die!
After numerous tests including a lumber puncture to rule out meningitis and brain scans he was diagnosed with Bronchiolitis an infection caused by a respiratory syncytial virus (RSV) and hypothermia, his temperature had been just 32.5c when he was admitted and his body had started to shut down. When we finally had a diagnosis my initial instinct was to blame myself, we had not taken the risks seriously enough, we shouldn’t have let people visit, we shouldn’t have let people hold them, I had failed him. It was only when the doctors told us he had most likely caught the virus from our toddler who had a nasty cold at the time that I realised there really was nothing we could have done, you can try to protect your preemie from RSV and perhaps you can be more vigilant than we were but you can’t wrap them in cotton wool, especially not from their siblings.
After the agony of separation during NICU I stayed by his side from the moment he entered hospital, I had vowed when we brought the boys home that I would never be apart from them again and it was a promise I intended to keep. Amazingly he spent just three days in intensive care and a further six on the ward, he fought like a true preemie with unbelievable strength and the resilience he had as a baby who still hadn’t reached his due date and was less than 5lbs took the doctors by surprise. Finally after nine days I got to bring him home from hospital for the second time in a month.
March had started with the unbelievable joy of bringing our boys home from neonatal but as it ended we had been rocked to the core by the harsh realisation of their fragility and I was terrified either twin would catch RSV ever again. All we wanted was to start living life like a ‘normal’ family.
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