Wednesday, October 22, 2014

What's the Best Advice You Have Ever Been Given?

The following question was recently posed to me: "What's the best advice you have ever been given?"

I've wrestled with this question for several days now -- and keep thinking about the most traumatic experience of my life -- my pregnancy; the birth of my preemie, Emily; and our Neonatal Intensive Care Unit Journey (NICU). Below are a few pieces of advice -- or tips -- that helped me along the way:

Every day in utero saves three days in the NICU

I don't know if this statement is true, but it helped me understand the importance of hospital bed rest during my challenging pregnancy. Every day I kept my baby cooking was one more day in which my baby was growing and developing inside of me. And, every day in utero could potentially reduce our NICU stay -- allowing for a quicker homecoming for our preemie. 

Bed rest and hospitalization allowed me to carry my baby until 28 weeks gestation. Although Emily's NICU stay felt like an eternity at 67 days, she was surprisingly able to come home before her due date -- weighing only three pounds 10 ounces.

One Step Forward Two Steps Back

One doctor explained that preemies typically take one step forward and two steps back at various points during the NICU journey. Although we didn't enjoy hearing this advice, we appreciated the foresight.

The doctors did their best to prepare us for our NICU journey. They were up-front and provided the worst-case scenarios. The doctors told us that our baby would be really, really small. They explained that our preemie might not make any noise -- and might not be able to breathe on her own. The doctors also said that our preemie's eyes may still be fused together. They explained that our preemie would be at risk for lung and vision problems, as well as brain bleeds. They also said that our preemie may need blood transfusions and would most certainly contract infections prior to discharge.

Thanks to the doctors and nurses at the NICU, our preemie was given a chance to survive and thrive. Our journey had many steps forward, backward, and to the side. It was good to be prepared for the many ups, downs, and detours we experienced throughout our NICU journey.

For the most part, we were very lucky. Emily didn't suffer from a brain bleed and never needed a blood transfusion. Although she became colonized with Methicillin-resistant Staphylococcus aureus (MRSA), which required her to be put in isolation, she never became infected.

Fight for What You Believe In

As a family member or a friend of someone who is hospitalized, you innately trust that hospital personnel are doing the right things and acting in a medically appropriate manner (i.e., administering the proper drugs and dosages, requiring visitors to leave the room for certain procedures in order to create a sterile environment, and enforcing proper hygiene standards). From my experience, I found a lack of consistency in many procedures that took place in the NICU. I didn't hesitate to be the squeaky wheel and ask questions. I fought for what I believed in.

If you don't like the medical care that is being recommended, express yourself, ask questions, and continue to advocate for what you think is best. In addition, don't be afraid to interject yourself and ask questions if you see inconsistencies.

Take Time for a Yourself

The doctors and nurses told us to take time for ourselves during our NICU journey. They explained that well-qualified NICU staff was caring for our preemie 24 hours a day, seven days a week. We didn't have to be at the hospital every waking hour.

To be honest, we listened to this advice and applied it sparingly. We felt the need to be at the NICU constantly and to be at Emily's side. I can remember two times in which we actually took time for ourselves. One Saturday morning, we bought baby furniture before going to the NICU. And, about three days before Emily was discharged, we went out to a nice steak dinner. 

Looking back on our NICU journey, we probably could have taken a few more moments to ourselves to decompress.

Contact Early Intervention for Services as Soon as Possible

Early intervention is a system of coordinated services that promotes childhood development. Many Early Intervention programs offer services, such as occupational therapy, physical therapy, and speech language pathology services.

We contacted our county's Early Intervention program while Emily was still in the NICU. Although Early Intervention wasn't able to help us while she was still in the hospital, it was nice to connect and schedule an evaluation, as there was a long wait for this initial assessment.

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