I often think of NICU infants as little soldiers.  They are exposed to so many stressors so early in life and by the time they leave the unit, at less than a year old, often have more “battle” scars than an adult can collect in a lifetime.  Every “little” procedure or treatment done to our patients affects them in a huge way.   And there are so many things:  IV sticks, lab draws, catheters, noxious noise stimulation, PICC lines, chest tubes, breathing tubes, feeding tubes, surgeries, exposure to harmful substances, blood transfusions, lumbar punctures, bladder stints.  There’s a tube for every hole and if there’s not a hole, we sometimes must make one.

 

Often, a NICU baby’s survival is bought at the price of pain and discomfort.  No wonder many of them grow into children with abnormal pain responses.   Every day, decisions are made in the NICU, risks and benefits are weighed, sometimes the lesser of 2 harms is chosen,  consequences are considered.  Not only is NICU life difficult for an infant, but also the family.  It takes incredible strength and perseverance on the part of parents.

I knew of Paisley Benson before I really got to know her and her family.  I had not yet taken care of her when I was on call one night and assigned to the East side of our football field- sized unit. When “on call,” each NNP takes charge of a side, East or West, for the night.  What struck me most readily about Paisley’s mom was her obvious dedication to her daughter.  She was that “ideal” parent:  often present, ready with questions, sharing information with the NICU team, very involved with Paisley’s care.  I was impressed with her ability to cope with such complex issues as the ones that Paisley had.  Even more striking was what I later learned: Paisley’s problems were a complete surprise to her  family.   I’ve had the privilege to know Paisley and her family outside of the NICU.  She is one of the happiest babies I’ve known!  It’s amazing the benefits love and support will reap!  Here is Paisley’s NICU story, told by her mom, Kristie, and posted with permission.

 

“Paisley was born October 1, 2015, emergency C-section and we were unaware of any health issues that were present.  However, within 10 minutes of birth, we were told she had an imperforate anus.  Her kidneys were enlarged, placing pressure on her lungs, causing the right lung to collapse.  She was transferred to Blair E. Batson Children’s hospital NICU and placed on a ventilator.   She also had a feeding tube, a drain, and a catheter. It was one of the  scariest days of our lives.  We had to place our little girl’s life into the hands of people we didn’t even know and pray that God watch over her and the doctors.

 

At less than 12 hours old, Paisley was taken to surgery to get a colostomy.   She received 2 PICC lines, numerous IV sticks, and had to be catheterized every 4 hours.  According to statistics, only 1 in 5,000 babies recieve the diagnosis that Paisley has.   The nurses were amazing and now we consider them and the doctors to be like family.   I had to learn a lot while I was there, so I would be able to properly care for Paisley at home and I felt very overwhelmed at times.  The NICU team was always there to help when I thought it was too much.  The doctors, nurses, and nurse practitioners made our stay much easier.

 

Paisley stayed in the NICU for 1 month, not long for many babies, but it felt like forever to us.  I cried every day going to and from the hospital. Remaining strong was difficult for my husband and I, but it was necessary- we have a 5 year old and Hunter didn’t understand why he couldn’t see his sister.

 

Although we are home now,  there are still difficult things to deal with, times that we feel overwhelmed, but I know God has a plan for our family.   The NICU was only the beginning of our journey.  Paisley will need more surgeries, so we still have a long road ahead of us, but the surgeries will be performed here in Jackson at Batson Children’s Hospital.  She continues to need multiple check ups and clinic visits.  I love sharing our story, helping others to realize that lives can change in an instant.   My family and I are forever grateful for the outstanding care Paisley has received from the team of doctors and nurses at Batson.”

 

 

The only comforting thought I had when I left work one evening in September, about 5 years ago was: “Thank goodness Dr Hersey is on call tonight!  Lord, work through him and everyone else for this family, if it be Your will.  And I really hope it is.”  (NICU nurses pray for any and everything- IVs to get, Foleys to slip in, pneumothoraces not to blow, bowels not  to perforate. )  Dr. Hersey is not only incredible when it comes to managing premies, especially ones on ventilators, but he is also great at teaching the complicated stuff.   He’s the only neonatologist I know that can explain the Alveolar gas equation, perform a Hapkido move, then finish with the corniest joke you’ve ever heard- and all in under 5 minutes.

That afternoon, though, no jokes were made as we stood at Eli’s bedside on the East side of the unit and wrapped him, vent tubing, IV lines, EKG leads in a blanket and placed him in his mom’s arms to hold, which is what we do when there is nothing left to do.  We had tried everything to keep him alive and he just wasn’t responding.   This is one of the most frustrating parts of medicine- the helpless feeling of trying “everything”- and it not being enough.   Elijah’s oxygen saturations were low, his vent settings high, and driving into work the next morning, I prepared myself to see the empty bed spot that I was afraid would be there waiting, a testament to my fear of the worst.  Fortunately, Ive learned, in 16 years of NICU nursing, that God is able and babies are very resilient.

With Elijah’s family’s permission, I share his amazing story, told in his mother’s words.  Im so thankful to know this beautiful family.

 

“The story of Elijah starts with me going into labor early one Wednesday morning in September.  There was no pain, just a worry, so the trip to the doctor resulted in a stay at the hospital in Meridian, MS.  There, attempts were made to stop the birth but his arrival was happening, so the doctor and my husband made the decision to send me to University of Mississippi Medical Center.  The ride over was painful and long, with every bump causing contractions.

Once at UMMC, the prognosis was that the baby was coming, and on Friday morning, Elijah finally made his way into the world, tiny and fragile at 1 pound, 6 ounces.  This began our 4 month, life-changing journey in the NICU.  We watched our 23 week, 6 day gestational age infant start life in an incubator, with leads, wires, and breathing machines to keep him alive.  Hours turned into days, days into weeks, and weeks turned into months.

We learned so much from the team of doctors and nurses who took excellent care of Elijah, including the best and most disheartening possible outcomes.  We prayed for the best and looked to the hospital team for some form of reassurance.  However, there came a night where the doctor met us around his incubator and told us that all that could be done had been done and prayer was our only hope.  For the first and possibly the last time, we were allowed to hold our baby in our arms.

Tears rolled down both mine and my husband’s faces.  After what seemed a few short minutes, we placed him back into the incubator, but stayed there, holding Elijah’s hand, and prayed.  After midnight, we reluctantly went back to our RV to try to get some rest.  We received no phone calls the rest of the night, which built hope in us.  We found Elijah, back to normal when we came into the NICU that next morning!  The only medicine needed was prayer and love.  It was a true miracle from God.  

After many weeks, several surgeries, and one terribly hard night, Elijah was allowed to go home in January.  We were just as scared as when he was born, and we were prepared for anything.  Now, Elijah is a 5 year old with more energy than we can keep up with.  He’s still tiny by comparison with most children his age, but he is very intelligent, caring, loving, and joyful.  He loves his family, baby sister, and all the animals we have.  I wouldn’t change what we went through for anything because it made us stronger and made us realize how precious life really is.”