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Celebrating The Nurses We Have Met Along The Way

I have always thought of nurses as angels. My own mother is a Registered Nurse. As a child, I saw nurses as the professionals who could magically take away the pain, settle a crying baby, hold the hand of a dying person and rub a back just right. I recall my mother laying out her special pins and nurse’s cap on the kitchen table each evening in anticipation of her early morning shift. She always smelled good when she left in the morning and by evening she came home smelling like band aids, rubbing alcohol and Juicy Fruit gum.

On December 5th 2003, my husband and I joyfully welcomed our first born, Meredith Ocea, into our lives. After a very uneventful pregnancy and a normal twelve hour labour, our daughter aspirated at the time of birth. She was transferred by helicopter from our local hospital to the Children’s Hospital of Eastern Ontario (CHEO) very soon after her birth. Five days later, an MRI confirmed what her doctors suspected… our daughter suffered an abrupt lack of oxygen at the time of birth resulting in a significant brain injury. We were told then that Meredith would likely have severe cerebral palsy and a very difficult life ahead.

We spent the first ten weeks of her life at CHEO in Ottawa. Thirty-six hours after birth, I was told that she would be given some formula through the nasogastric tube. Since I was planning to breastfeed, I requested a breast pump to give her my own milk instead. I recall two nurses coming into a private room with me and showing me how to use the then brand new Medela Symphony pump. I managed to pump out the 5ml they required for this first feed. I was so touched that the NICU nurses were so supportive of my breastmilk feeding. I ended up pumping and exclusively feeding breastmilk through the feeding tube for one year.

We dreaded the evening every single day. As it started to get dark outside, we knew that soon we would be packing up our things and saying goodnight to our girl once again. I can’t even attempt to put into words what that was like. Everyday we would find out who was on shift for the night and be so thankful and relieved when one of our favourite nurses would be caring for our baby until we returned in the morning. I slept best on those nights. Knowing that we could call the NICU at any hour of the night was so very,very comforting. I would wake up to pump and then slip downstairs and call. On the other end of the line would be a very calm and loving voice that never made me feel silly for calling about our baby. The nurses in the NICU were exceptional. It was the little things that made all of the difference: taking the time to sit and chat with us as we worked through our worries and fears, physical contact like a pat on the back or a hug when
needed, encouraging us to go for a break and assuring us that our baby would be cared for while we were gone and most importantly, giving us hope when the future looked so hopeless.

After six weeks in the NICU and after Meredith underwent surgery for a gastrostomy feeding tube at only six weeks of age, we were transferred to a nurse-monitored room on the fourth floor. We were very sad to leave our NICU nurses whom we had gotten to know and whom we trusted so much. In the end, we developed similar bonds with the nurses on 4-east. The nurses that work with young patients and their families must possess very unique and special qualities. Our nurses on 4-east not only cared for our baby when we weren’t there at night but they also counselled us, assisted us and taught us the skills we would need to know when we finally brought her home. We learned how to do dressing changes, tube feeds and how to administer medications through the g-tube. They constantly reassured us that they wouldn’t send us home until we felt confident enough to do everything on our own. Their patience, sense of humour, genuine concern and guidance will never be forgotten. The nurses who possessed these qualities were far more valuable to us than the ones who would enter our room with an air of superiority, minimize our role as the parents and who would make off-handed comments that would have an astronomical impact on us.

We have fond memories of the nurses who not only cared for our daughter but who also cared for us over the last five years. We have had the opportunity to meet and spend time with the nurses at Roger’s House (Ontario’s only palliative care home for children) as well as the nurses in our community who take care of our daughter’s medical needs and the ones who provide night nursing so that my husband and I can get a decent night of sleep. My mother, who predominantly takes on the role of Nanny to Meredith, has also been a blessing in our lives as she has been able to use her experience as a nurse in helping us with Meredith. After 43 years of service, she retired from nursing in February 2009 although we plan to keep her skills sharp!

Our local health centre employs a Nurse Practitioner who generously provides home visits as she recognizes the amount of energy and planning involved in bringing our daughter to the centre. She will come over to check her ears and throat, trouble shoot with us as to what might be going on and just provide support in the tough times. She also schedules visits for me, the mother, to discuss how I am coping and if there is
anything I might need. Our night nurses provide care for our daughter so that we can sleep. Although they maintain a high level of professionalism, they also arrive with a relaxed and friendly attitude. One of the hardest things to accept on this journey has been the tremendous amount of help we need to care for Meredith in our home. It is critical that those who work in our home always recognize that this is in fact, our home, not just a workplace. This was one service I fought as long as possible as the thought of having a nurse in our home every night seemed so unfathomable and yet once we took the leap we kicked ourselves for not doing it sooner.

For the nurses who work with families with children with special needs, you walk along this path with us as counsellors, advisors, information providers and nurturers. This role is so very, very important and valuable to the families you work with. Some of you are present at our births or soon after (Labour/Delivery and NICU), some of you work at Children’s Hospitals and rural community hospitals and will see us through our children’s lives during various surgeries, emergencies and illnesses, and finally, some of you may be there at the end of life, when we have to let our children go (palliative care).

Our journey as new parents and now experienced parents of a child with very complex and special needs would have been far more challenging and difficult had it not been for the nurses who quietly went about their day changing lives without even realizing it. Your presence, your words and your gestures can be empowering and can make a very stressful and traumatic time in someone’s life bearable. We are grateful to every nurse
that has touched our lives. We only remember some of your names but we remember ALL of your efforts at making this journey a little bit easier.

Originally published in the Childbirth Nurses Interest Group newsletter spring 2009 in recognition of
National Nurse’s Week.