My daughter was born at 24 weeks old, arriving unexpectedly 4 months ahead of schedule. She was born by emergency caesarean and weighed a tiny 319 grams. Elora spent the first seven months of her life in the Royal Womens Hospital (Melbourne) – the first 5 of these in a critical condition in the Neonatal Intensive Care Unit (NICU).
The time Elora was in hospital was an enormous emotional and physical rollercoaster ride. During her first seven months, Elora suffered what I now know to be some of the ‘usual complications that come with being a premature baby’. These included a pulmonary bleed, septicaemia, renal failure, chronic lung disease, a PDA, bilateral stage 3 ROP, bronchiolitis and multiple life-threatening infections. Medical professional had not expected her to survive delivery due to her extremely low birth weight, so were in unchartered territory when treating her while ‘waiting for her to grow into our smallest equipment’. Elora was on a ventilator for her first 3.5 months, then finally moved onto CPAP after numerous attempts and pumping her lungs up with caffeine and steroids. After 3 months on CPAP she moved onto nasal prong oxygen, which she remained on until the week before she was discharged from hospital.
The experience of having a premature baby in hospital is what I like to call ‘altered parenting’. I felt enormous joy and pride upon the arrival of my firstborn, yet at the same time was dealing with the very real scenario that she may not survive to come home. Adrenalin kept me going for the most part, along with my gut instinct (mothers instinct?!) that my baby was not only going to survive, but thrive. I was lucky in that I was a single parent with no other children when Elora was born, so had no demands on my time outside the hospital and could thus spend 10 to 16 hours a day beside her humidicrib. While this was absolutely where I wanted to be, it was exhausting both emotionally and physically….spending hours at the hospital, recovering from the birth, expressing breastmilk every two hours and watching my baby undergo numerous painful and invasive medical procedures. ‘Altered parenting’ is not easy, as all the experiences one takes for granted with a healthy newborn are glaringly absent. My baby was being cared for by strangers (albeit lovely ones) while her cot stood empty at home. I was not able to hold her until she was 17 days old and it was then weeks between each cuddle, which took place in a bright, noisy ward surrounded by other people. Feeding her meant expressing my breastmilk with a mechanical pump and then slowly syringing 1 or 2 mls every few hours down a tube fed down her throat.
While there were many harrowing times when Elora’s life was on edge, there were also milestones to celebrate. Gaining weight, getting a cuddle, surviving another infection, moving into an open cot and being able to wear minute clothing were all time for smiles and celebrations. Whilst I had support from family and friends, it was the other parent I met through Life’s Little Treasures that were my lifeline. Like many experiences, you need to walk in someone else’s shoes before you can really have any clear understanding of what they are going through. I joined LLT as I was keen to meet others in a similar situation to myself, and was also hoping that I could act as some form of support in return. The beauty of LLT was that it enabled me to feel like a normal parent. It was a huge comfort to realise that I was not the only parent watching their baby struggle for survival and dealing with the day in, day out, anxieties and stresses of the NICU.
While my family and friends tried to understand, it was the conversations, hugs, listening ears and support I received through LLT parents that made the greatest and most positive difference to my experience. It was also inspiring and gave me hope to be able to meet and talk with past premmie parents, whose children had survived and were now home – healthy and happy. To talk to these parents, and see these children running around made me feel that if others had made it and gone home then so could my daughter. By joining LLT I gained a wonderful sense of connection and community, which has continued well beyond the insular world of the hospital.
Once my daughter was finally discharged from hospital life was full of new joys and also new challenges. These challenges included severe reflux, chronic lung disease and being fed expressed breastmilk through a nasogastric tube. Elora is now almost 2 and half years old and continues to receive 99% of her nutrition nasogastrically, seeing a speech pathologist every fortnight to encourage and teach her to eat and drink orally. She does eat some food ‘normally’, although it is an extremely long and slow process that may take a few years yet until she can be free of her feeding tube. Fortunately her reflux eased by the time she turned two, so I no longer have a child who projectile vomits up to 15 times a day.
Elora’s chronic lung disease continues to present challenges as it means she (and the rest of the family) cannot be around anyone who is sick, who h as recently been sick or who has been in contact with anyone sick. During winter this excludes a large number of people, and means Elora is not able to participate in the usual child activities such as playgroup, library storytime, swimming or any group gathering. Hence we often have periods when we need to remain isolated at home for a couple of weeks to avoid the very real possibility of her lungs being unable to fight a cold and landing Elora back in hospital on a ventilator.
Being a first-time parent unable to participate in activities because of the risks to Elora’s health has been frustrating and sometimes depressing. During these times of isolation it has been a lifeline to be able to ring other LLT parents who are often holed up at home themselves for the same reason. I cannot emphasize enough the value for myself of having such an incredible amount of support from LLT. The information booklet given to me when Elora was in hospital taught me about many of the common issues faced by premature babies, while the regular LLT newsletter keeps me updated on premmie issues and I also love to read the stories of other parents and their babies. LLT has provided myself and my family with a huge amount of invaluable support, and I hope the amazing people running this organisation receive the support they need to in turn continue to provide such to the many families out there who are, and can, benefit and ease the difficult journey of prematurity.
Adele mum to Elora