The Dream vs The Reality: What to expect in NICU
Many CDH families are aware that their child will be cared for in Neonatal Intensive Care (NICU) after birth; despite the time to prepare, the NICU admission requires parents to quickly adjust from the pre-CDH dreams they had of their child’s birth, to the new reality of life in NICU.
“Adjustment for the high-risk parent means making unacceptable losses acceptable.
Giving up lost dreams and accepting what we do have is simply necessary…
If we’re going to resume living our lives as a family with any joy”
Michael T. Hynan, Ph.D
Former NICU Parent
Emeritus Professor of Clinical Psychology, University of Wisconsin
NICU hospitalisations are stressful, overwhelming and exhausting events for all involved – including the parents, the siblings, grandparents and friends. Parents worry about their baby’s wellbeing, especially if they are unable to be there around the clock; decisions must be made about caring for other siblings; taking leave from work, and coordinating visits when mother and baby are in separate hospitals or towns.
Added to that, the high-tech NICU environment – while necessary for the baby’s wellbeing – is unfamiliar and intimidating for most parents. Much like visiting a foreign country when you do not know the language or the customs. The instruments, equipment, respirators, procedures, monitors, lights, alarms, smells and sounds can be terrifying for those unfamiliar with the NICU setting.
As a result, many parents experience loss and grief. The condition of being deprived of something or someone, with the normal response to that abnormal situation. As a result, parents must experience the process of grieving – reconstructing a new world which has been confused by loss.
There are some things you can do to help you prepare for, and manage your response to, your experience in NICU. For those parent’s whose CDHer has been diagnosed in utero, the care team will likely offer a NICU tour prior to baby’s birth. While many parents find the idea confronting, familiarising yourself with the NICU environment as a visitor can be helpful in the longer term.
Tip 1: Personalise Baby’s Room
Talk to the staff about what you can bring in – a blanket from home, gifts from other people. Photos of yourselves and baby’s siblings help to make the space around your baby different from that of other babies. Keep in mind that too much clutter can make it difficult for the staff, but most are more than happy to accommodate.
Tip 2: Make Memories
Although it might seem unlikely now, one day your NICU days will be a distant memory. Take photos, read books and tell your baby all about the world. Write down details and stories
Tip 3: Celebrate Milestones
As anyone who has been to NICU will tell you, milestones take on a different meaning. Celebrate whatever you can – being about to touch or see baby, changes to medication, baby tolerating cares, visitors. Make up your own milestones and enjoy every one.
Tip 4: Be Involved In Baby’s Cares
“Cares” might involve changing baby’s nappy, taking a temperature, wiping their eyes – but whatever it is, ask the nursing staff to let you know when they’re scheduled, so that you can be the one to do it.
Tip 5: Record Developments
Details about medication, staff changes, treatments – it might be all consuming now, but in the years to come it will be a blur.
Tip 6: Get Out For Short Breaks
Even though it might feel counter-intuitive, you need to care for yourself as well. If that means taking a nap, going for a walk, a coffee with a friend – do whatever you need to do to give yourself a break from the all-consuming NICU world. As hard as they sometimes are, getting out every now and then helps to build your resilience so that you can be more present for your baby.
Tip 7: Understand That There Will Be Ups and Downs
Emotions in NICU can be significantly heightened; positive emotions can go sky high, and negative emotions can seem insurmountable. Whilst it seems that the “rollercoaster” of emotions is to be expected, there are things you can do to prepare, and manage. Speak to you baby’s medical team, or your GP; communicate openly with your partner. Access professional resources if required, and never be afraid to speak up if you need help.