When my husband and I first heard the news that our unborn daughter had CDH (congenital diaphragmatic hernia), time stood still in what seemed like a dense fog. As many would do, I ran to internet sites like Google and Wikipedia to find out more about this sometimes fatal abnormality. I was inundated with medical terminology and survival statistics. I was able to create a huge binder with all of the research I had done and carry that stack of documents with me to every appointment we had. Needless to say, I thought I was prepared for the various outcomes we could experience after our little girl was born.
On November 28th, 2010, Brooklyn Elizabeth Hales was born one day shy of her Father’s birthday and one month short of her due date. She was immediately intubated and taken to the NICU III in West Tower. For the next few weeks she struggled with stability and even ended up on ECMO. There were many dark moments in those first weeks of her life, but like I said before, we knew what we were up against. We knew that the ugly road of CDH was not an easy one, and we had prepared our hearts for heartbreak.
What we hadn’t planned for, and what never even came to mind, was how we would cope with “NICU life.” In the four months of Brooklyn’s hospital stay, I spent majority of my time at her bedside, walking the halls of West Tower, or trying to catch some rest in the Ronald McDonald House on the fourth floor. I lived, breathed, and smelled like the NICU. I had a fully organized folder on what Brooklyn could be faced with, but I had an empty hand when it came to information on how to navigate my role as a parent in the NICU. As a parent, you are your child’s most valuable advocate. You have intuition and you will spend the most time with your child. But how do you know which beep means business? Or how do you know when to speak and when to be quiet?
Or… what if my child’s pod mate passes away?
These are all questions and scenarios I had to navigate thru as a first time NICU parent. The one thing I learned over anything else when living in the NICU is that there’s a lot you CAN prepare for, and a lot you CAN’T prepare for.
As an employee of Texas Children’s, I know that we are constantly seeking out opportunities to better our families and their experiences. And as a NICU parent, I am even more excited about the creation of a new resource class available to our parents. A few months ago I had the privilege to brainstorm with the creators of the class, Preparing for Your Newborn’s Hospitalization. The purpose of our meeting was to gain the perspective of a NICU parent and bring up what could have been helpful prior to that “NICU life.” This class, with the help of its leaders and speakers, will better prepare those parents who are awaiting their newborn’s stay. I feel that had this been at my disposal prior to Brooklyn’s birth, I would have been one of the first to sign up. I believe it will be a tremendous value to our parents and great addition to the many great classes provided by the Pavilion for Women.
To sign up for “Parenting your hospitalized baby” or any of the other classes available to Pavilion patients, visit: http://women.texaschildrens.org/Patient-Education/