Recently, Heather Spohr at The Spohrs are Multiplying asked her readers to help her prepare for a speech she will be giving to doctors and nurses of the NICU.  She asked those of us with NICU experience to explain ways that NICU doctors and nurses could better care for our children and help us parents deal with the trauma associated with long-term NICU stays.  

I am very lucky to be able to say that our experience with the NICU staff at Rady Children’s Hospital in San Diego was extremely positive (or I should say as positive as that experience can be).  I can’t imagine anything more traumatic than watching your newborn (or your child of any age) sedated and on life support, struggling to survive.   During the first few days of the Bunny’s NICU stay we could not even touch him, let alone hold him.  We were completely dependent on his NICU caregivers.  We were at their mercy.  

And they were wonderful.  We spent every possible hour in the NICU.  The nurses and nurse practitioners were our friends during otherwise lonely and isolated days.  They consoled us when we cried.  They gave us their chairs to sit in.  They taught us how to care for our fragile little boy.  They patiently helped us learn to change his diaper, take his temperature, and eventually feed him.  They helped me learn to breast feed (which is very difficult with a preemie) when the lactation consultant wasn’t available.  They displayed his special blanket just so.  Most of them made sure we knew what was going on and volunteered information that we didn’t know how to ask for.  

The Tiny Tiny Bunny and his favorite nurse

The lactation consultant made the impossible possible.  She instructed me, positioned my pillow, gave me hope and made sure that the nurses gave me an opportunity to try breast feeding every day.  The respiratory therapists, physical therapists, and occupational therapists, worked tirelessly to help our boy.  Whenever possible, they tried to plan visits for times that we would be there, so that we could be involved with his treatment.  

When the Bunny first arrived, and he was very sick, the Mayor had a meeting with the neonatologist at the bedside.  The next day, the NICU social worker set up another meeting with us and the neonatologist and made sure all of our questions were answered.  The neonatologist was great.  She was not rushed with us and went so far as to discuss things we should be aware of regarding the Bunny’s future development (things like precautions against RSV, adjusted age milestones, and a trend towards delayed kindergarten starts for boys).  Once the Bunny was starting down the path of recovery, we didn’t see as much of the doctors (though we heard the Bunny was one of the doctor’s “favorites”).  If we were there when they were doing rounds, they always volunteered updates and asked us if we had questions.  We always knew we could ask for another formal meeting through the social worker, but the nurses kept us so well-updated, we didn’t feel like we needed it.

The social worker also volunteered to write a letter to the Mayor’s boss explaining that he needs to be in the NICU with the Bunny.  She had it ready the next day.  Whenever we saw her in the hall, she checked in with us, and made special times to meet with us to make sure we were getting our questions answered.

The only time we felt marginalized or disrespected was when we were checking into the NICU.  To get into the NICU, you  have to use the phone on the wall to call the nurse at your baby’s bed and ask if you can come back.  You then wash your hands and tell the person at the desk that you have already called back.  They then push a button that opens the doors to the NICU.  Often the people sitting at the desk ignored us while we stood there or seemed annoyed or bothered by our need to get in.  If we wanted to ask a question at the window during times the NICU was closed, they were really annoyed with us. This was upsetting.

So, what would I suggest to other NICU workers?  Understand that parents are at your mercy.  You have all of the information about their child, you have the access to their child, you are responsible for the care of their child.  This is not the way the parent-child relationship was meant to be!  Treat the children and parents with respect.  Facilitate their relationship. Treat them as parents and children – not just patients.  Volunteer information to parents.  Try to think of ways you can help them.  Has the parent brought in a cute outfit, a hat, or a blanket?  If not, have you told them that they can?  If they have, use it.  Is the parent changing diapers if that is possible?  If not, have you told them they can?  Have you shown them how to navigate the IV lines?  Have you shown them how to navigate the system?  The child’s health is always most important, but when possible, even if its just for a moment, try to see beyond the monitors and the tubes and think about the bonding and comfort of the parent and child.  The smallest gestures can make a huge impact on how the parents and child will they go on with their lives when they leave your NICU.

Thank you to our NICU workers for taking such good care of us and our Bunny!  We can never thank you enough.

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