1 day old – dad changing Zoe’s diaper
Parents of “typically” developing children will marvel when their baby takes their first steps and says their first word. And when their child graduates from high school it is a day of joy to be sure. Each and every mark is to be celebrated and should be. As parents of babies born prematurely or critically ill, finding moments to celebrate can be challenging. Each day we are often given a plethora of statistics about the mortality and morbidity of our children and may often be told that their futures will be difficult, that neurocognitive damage is almost certain. This leaves many parents feeling a load of anxiety, unsure of what that may truly mean for their child and for their family. For others, guilt may reign supreme as we blame ourselves for the early start to life our children experience. Just before our triplets were born at 25 weeks 5 days gestation the neonatologist told us it would be a miracle if any of them survived the delivery; and if we were lucky enough, after months in the NICU, to bring just one of them home, we were most likely facing a lifetime of chronic medical conditions and developmental delays.
In some ways this doctor was right. It was a miracle that any of our girls survived the delivery. And we did spend months in the NICU, 9 ½ months to be exact. She was also right in saying that we did not know what the future would hold for our girls, how could we? No one can predict because every baby is different. I would drive myself crazy running all the “what if” scenarios in my mind, trying to imagine as far down the road as college, while my daughters lay in their isolettes, barely weighing two pounds. One of Avery’s nurses gave me the best advice I could have received and is something I often share with new NICU parents. Vana said “Keira, you cannot look for the light at the end of the tunnel yet. Its there, but you can’t look for it yet. There are no guarantees. What you have is today. Today you can choose to love your girls and promise them you’ll do whatever they need no matter what the outcomes are. You cannot control what the future holds and worrying about the unknown does not do you or those little babies any good. Love your girls today, because that is what you have right now.”
Cherishing the moment
Her words stung a little at first but as they sunk in I realized she was right. A friend of mine once told me: “Worrying is like paying interest on a debt you may not owe.” Which is true! It is a hard concept to put into practice as parents of babies whose lives are in jeopardy, but if we can allow ourselves to let go of the worry and the “what ifs”, even for a few hours, we create an opportunity for ourselves and our partners to focus on the day at hand. We should ask ourselves: What can we do today to be involved in our baby’s care? How can we show our baby we love him/her? What can we celebrate today? It doesn’t have to be a big milestone like successfully weaning off the ventilator or drinking an entire bottle. We can celebrate the small steps, which, for our fragile babies are huge accomplishments such as holding a good sat for 30 minutes, or weaning one microgram of a medication, or even having a dirty diaper.
This mentality should carry over after the NICU as well as we venture into the world of Early Intervention and multiple specialist appointments. There is so much in the lives of parents of preemies that can be overwhelming, and rightly so. However, I think we miss out on opportunities to notice the small steps if we allow ourselves to drown in worry. Can you try today to find one thing to celebrate? I’m not saying it will be easy; it certainly wasn’t for me. But as I look back on even the worst days, like the day we lost Zoe, I am thankful for the last moment I saw her sparkling green eyes, when she reached up and twirled my hair one last time. Try to make this part of your NICU or daily routine as you sit down for dinner, take your shower, or climb into bed – find one thing that day and say out loud “Today I can celebrate_________.”