Hand to Hold's Official Blog: Written by Parents for Parents

{Professional Insight} Using Information to Cope With a NICU Stay

Sue Hall MDInformation is a valuable commodity. Simply put, when we understand things, we are better prepared to deal with them. I saw this principle in action every day as a master’s level social worker in the years before I became a neonatologist. As I helped families in crisis, all with young children, it was easy to see that those who learned as much as possible about their child’s condition, as well as what kinds of feelings were “normal” for others in similar circumstances, were best able to handle their situations.

My concern for the emotional well-being of families accompanied me from my social work career into medicine, and this interest led me to write my book, For the Love of Babies. The book tells the stories of 16 babies and their families as they journey through the Neonatal Intensive Care Unit. I was especially touched to write about the amazing resilience and strength of the parents I have met over the years. A key coping mechanism for most of these parents was to hold on to hope that things would turn out well. Beyond that, trying to understand as much as possible about their baby’s condition was the most important way for parents to successfully navigate their NICU experience.

So now perhaps your baby has been admitted to the NICU. Your first reactions are likely to be shock and fear, followed by an overwhelming jumble of questions: What’s wrong with my baby? Why did this happen to me? To my baby? To our family? What will happen next? Will my baby be okay? What does our future look like?

First, take a deep breath, and then know that getting more information about the challenges facing you and your baby will help quiet your fears and anxieties. Although your first instincts will be to seek answers about your baby’s condition, you will find as you go along your journey that you may develop questions about how you are going to cope with everything that is facing you.

For the Love of Babies Benefitting Hand to HoldHand to Hold has developed a new NICU Resource Library with educational materials written from a NICU parent’s perspective in English and Spanish to complement the parent education that NICUs currently provide. If you would like to help Hand to Hold expand this resource or would like to gift it to your NICU, learn about the For the Love of Babies Campaign going on through April 30, 2013.

The education and resources that Hand to Hold provides, such as through this blog, can help you meet both of those needs. It is chock full of valuable information about all-things-baby, as well as loaded with practical tips about how to navigate both the NICU system and “life after the NICU.” Nobody should tell you that having a baby in the NICU is going to be easy because it probably won’t be. It will likely have its stresses and strains, with positive steps taken forward and then a few disappointing slips backward before baby finally comes home. But it will be so much easier if you make use of the invaluable resources provided by Hand to Hold and connect with other parents like yourself on this site and online. Here you will find a community of parents who understand and are tuned into where you are emotionally. Whether you are a mom or a dad, you will find things to meet your specific needs and that you can share with your partner.

Knowledge is power, and the more you can learn about your baby, the better you will be able to advocate for her and make informed decisions about her care. Your voice will be an important addition to your baby’s treatment team, and your understanding of what happens with her in the NICU will enable you to be better prepared to care of her once she comes home from the hospital.

Become a sponge. Soak up all the information you can. And use it to help your new little one grow and thrive, and to help you maintain your sanity while you go through this challenging experience!

Guestblogger

Sue L. Hall, MD  is a neonatologist in private practice with Pediatrix Medical Group and the medical director of a busy NICU in Topeka, Kansas. An advocate for preemie parents, she is also the author of For the Love of Babies,  written to increase awareness and understanding of the very serious issues faced by premature and other sick babies as well as the emotional struggles faced by their parents. She previously spent 16-years with UCLA’s pediatric residency program as an attending neonatologist. She received her MD from the University of Missouri-Kansas City, her MSW from Boston University, and BA from Stanford University. Connect with her on twitter and facebook.

Comments

  1. This is so true! In the weeks after our little one was born 17 weeks early, I was present at doctor rounds every day taking notes and asking questions. As the weeks have gone by I’ve come to realize that it was something I felt like I could control in a life filled with chaos. It wasn’t always news I wanted to hear, but it sure gave me perspective as those rounds got shorter and shorter and the tone of the conversations changed. The doctors and nurses regularly asked if I had a medical background (I do not), but being present and learning all I could was important to me. They told me that I didn’t need to know all the specifics, but to this day I don’t do well with the simplified version of information. I need to know the details. This might not be what’s right for every NICU parent, but it’s what I needed and still need. Knowing all the information early on really made me realize just how far our little miracle man has come. He’s 34 weeks now and doing well thanks to the wonderful staff of our NICU. It takes a village!

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