Heart Center nurse practitioners Pam Piel, Jessica Mann and Mary Jane Broge with patient, Ahnaf, his mother and grandmother.Jessica Mann, CPNP-AC, grew up in St. Louis, and grew up knowing she wanted to be a pediatric nurse practitioner.  She received her bachelor’s degree from the University of Missouri, and went on to earn her master’s in pediatric critical care from the University of Pennsylvania.  She worked as a nurse practitioner in both New York City and Phoenix before moving back to St. Louis.  In 2013, she joined the team at the Washington University and St. Louis Children’s Heart Center, where she has had the opportunity to treat many patients like Ahnaf – children who arrive at the Heart Center right after birth and remain in their care until they are healthy enough to go home.

I always knew I wanted to go into pediatrics.  Even when I was young, my mom took my sister and me to see a pediatric nurse practitioner.  From that time, I knew this is what I wanted to do.

When I started school, I knew I wanted to care for kids at their sickest.  When I first started here at Children’s, it was kind of a unique role.  We had pediatric nurse practitioners (PNPs) in the Heart Center, but they had not been incorporated into the ICU.  Over the last year, we have gradually worked into that setting.  We have several PNPs throughout the Heart Center, with four dedicated to the ICU.  And this week, we get to send one of the first patients we saw and treated in the ICU on day of life one home with his parents.

Ahnaf was diagnosed with transposition of the great arteries in utero at 20 weeks.  I think about what that day must have been like for his parents.  Here they were, at the 20 week ultrasound, probably hoping to hear the heartbeat, maybe learn the gender, and they get the news that something is not right.  Their entire pregnancy and their expectations for their baby’s first days, weeks, even months of life have to change.  I am not a mom, but I think every parent has this ideal vision of how their child is going to come into this world, and they had to rethink that.  Now, he was going to need surgery to survive.

His family is from out of town, but because of Ahnaf’s condition, the parents traveled here for appointments with our Fetal Care Center and Fetal Heart Center throughout the pregnancy.  And when Ahnaf was born, he went directly to the cardiac cath lab for a procedure he needed before going to the operating room a couple of days later.

Over the next few months, his family had to adjust a few times.  They are from Columbia, and Dad eventually needed to go back to work, so Mom and Grandma were at the bedside every day.  He required a few interventions in his first three months of life, and they have been here for all of it.

Part of the beauty of having PNPs in the heart center is that we are here, every week, Monday through Friday.  We are never off-service, so we really get to know the patients on a different level, and hopefully we become a dependable resource for the physicians and the families.  We get to know what works, what doesn’t, and what is going on with each of the children we see.

When we round in the ICU, we have a lot of people around.  It can be very intimidating.  But we have the opportunity to allow these families to develop relationships with us, and we get to know their child. This place can be really busy, but as PNPs we have the opportunity to just spend time with that wide-eyed mom, to take the extra minute to say, “This is what we just talked about on rounds.  Let’s review what we just discussed.  What questions do you have?” Or we can ask, “How are you really doing?”

In the ICU it is just a unique situation where you are always going and you are always thinking about what you need to be doing next.  It helps to take a step back.  I think sometimes we forget to take that step back and think about not only the child we are caring for, but also their family.  What if this were my child? How would I want to be treated if I were the patient or parent?

I often think about a patient I helped take care of in the past.  Everyone knew that this little child would not make it through the night.  I remember the mom looking at me with tears in her eyes.  This little boy was on an oscillator, connected to numerous medications with tons of IV tubing.  All I could think was this child needed to be in his mother’s arms.  She and the father needed to hold their son one last time.    I cannot comprehend what it is like to lose a child, but I want to believe I can help, that I can make a difference in an unbelievably challenging time.  That mom connected with me a few weeks later to say thank you.  So I hope there is some impact I can make, even if it is something as small as spending a couple of minutes and introducing myself in those first few days, rather than in the last minutes.

As nurse practitioners, we also have a great opportunity not only with patients and family members, but with other nurses.  We are nurses.  All of the PNPs in the Heart Center have been ICU nurses, so we know how important it is to take a moment and support the nurses in what they are doing.  Educating them about being a nurse in the ICU is one of my favorite parts about the job.

We have a different model in the Heart Center than in most other places.  In most ICUs, you care for a child until they are well enough to be transferred to another floor.  Here, though, we keep everyone in one unit.  Once our patients no longer require intensive care, they go right down the hall, where we are still managing their care.  So, with some patients, that means you can see them day of life one, then follow them through surgical procedures, discharge, and eventually follow-up in clinic.  It is an amazing opportunity to see the patient through the majority of their hospital stay, at their sickest moment, and then when they leave the hospital.

That has definitely been the case with Ahnaf.  He will leave this week, and it will be a little sad to see him go, but it will also be an extremely happy day.  His parents probably had that vision of taking him home from the hospital a few days after he was born.  They did not get that.  Now he is 2 ½ months old, and they get to take him home for the first time.  How exciting will that be for them!  And when we send this family out of the hospital, we, as nurse practitioners, feel blessed that we got to play a part in making that vision a reality.