The moment your child is admitted to the NICU, your life changes. Below, Megan explains how she stayed afloat in the NICU and shares some tips for other families who aren’t sure who or how to ask for help.
The birth of our youngest son on June 20, 2014, marked the beginning of a 3-month stay at OHSU Doernbecher Children’s Hospital. Although a prenatal diagnosis meant we were expecting a stay in the NICU, our family felt like we were thrown into the deep end of the proverbial pool.
As the mom, I felt like I was drowning in new medical terminologies, environments, demands, rhythms and uncertainties. It was sink or swim for the sake of our son. One fact I knew for certain: I needed help.
I slowly learned to ask for help, though it took longer in some areas than it did in others. At first, my voice was weak and sputtering, but with time, it became more clear and confident. No pamphlet or book could have prepared us for life in the NICU, but I hope my experiences will be helpful for other families learning to “swim” in the NICU.
Getting clarity from your care team
After experiencing my first set of “rounds” in the pod, I felt like I had more questions than answers – the medical staff seemed to be speaking a foreign language in an alternate universe and there were multiple unfamiliar monitors and equipment attached to my son.
On day 3, I realized my son’s nurse had been his nurse the day before. She was my first lifeline. I was discharged and able to spend some more time at his bedside. Nurse Mary slowly explained the equipment I was curious about, she talked through the different types of care she was providing and offered the postpartum practical tips for where to find pumping supplies and how to order lunch.
The next day when the doctors discussed my son’s case and post-surgery treatments, my mind was full of even more questions. Nurse Mary answered a lot of them and encouraged me to talk to the doctors for further clarification. I remember being surprised by the fact that we could actively participate in these conversations instead of letting them talk among themselves. My husband requested to talk to a doctor at the convenience of their schedule.
These initial conversations with the doctors laid a foundation for a mutual trust and respect with the end goal of improving our son’s health. The attending doctors were very knowledgeable with regard to diagnoses and treatments and the residents continually made time to answer our questions, even if it meant doing additional research or consulting their colleagues. They were eager to provide the help that we, as parents, needed.
Building your hospital team
While the doctors and nurses coordinated the care of my son, I soon realized that there were other hospital staff members who were available to care for patients’ family members. There is a social worker dedicated to the NICU patients and their families. The social worker can help with lodging, with postpartum care and with many other individualized need-based services.
In addition, a newly-formed hospital committee, which includes hospital staff and “graduate” parents, is dedicated to supporting NICU families at OHSU Doernbecher. The committee hosts activities near the unit and is also available to meet upon request. The committee is a great resource for those seeking conversation with and support from parents who have found themselves in similar circumstances. They understand what you’re going through, because they’ve been there.
Reaching out to volunteers
Weeks passed before I even considered leaving my son’s bedside vacant for an extended period of time during the day. I was “that mom” – the one who would have slept there if she could. Volunteers are often available to help on the unit – they provide an extra set of arms to hold your child if you need an afternoon away. Others serve families by taking pictures of the babies on unit and delivering printed copies back to the bedside. These volunteers delight in caring for the smallest lives at OHSU. Never hesitate to approach a volunteer and ask for help – that’s why they’re there!
Asking family and friends for help
This last category of caregivers seemed to be the easiest to ask, but in the early days it’s hard to know what to ask! The moment your child is admitted to the NICU, your life seems to shift into crisis mode. Many friends and family generously offered to help – I’ll do anything I can, just name it! – but I wasn’t sure what I needed initially.
I found that offers to do very practical, simple tasks (bringing food, providing childcare for our older children, visiting to hold the baby at his bedside) were most helpful for us. Friends and family who were able to visit us on the unit were given a unique perspective on what life was really like with an infant in the hospital. Our visitors seemed to have an immediate compassion for our situation and they carried that into interactions after our child was discharged.
Simply being present by visiting was so helpful for us. We asked family to take our older children into their home for extended stays so we could focus our care on the hospitalized child. We asked those that were providing extended childcare for us to bring our kids to the hospital for a fun visit. We would take the kids to the playground at Doernbecher, go for a walk or ride the tram down for a treat at a nearby cafe. We asked other friends to come sit with our son so we could take a break away from the NICU and care for our older children for a day.
I quickly developed friendships with other NICU mamas who spent extended time on the unit. Sometimes, we would order meal trays at the same time so we could “have lunch” together or we’d escape the hospital for an hour or so to grab coffee or appetizers.
Our time spent together off of the unit were unforgettable. We could relate. We didn’t have to ask each other what it was like to have an infant in the NICU, because we already knew what it felt like. These “on unit” friendships provided a big help, because much like the pods in which we lived our lives, we didn’t feel isolated. We knew we weren’t alone. Often times, I found that family and friends helped buoy me up when I found myself sinking.
Interested in connecting with other NICU graduate families through the Doernbecher NICU Family Advisory Council? Send us a note at email@example.com!