(upbeat music)
>> Narrator: Welcome to the Johns Hopkins
Neonatal Intensive Care Unit.
We know that this can be a challenging time
for many families.
New mothers may still be recovering after delivery
and your life at home is disrupted
by your baby's stay in our NICU.
We in the NICU want to help you
and your family adjust to this new change in your life,
while providing the best possible care
for your baby during his or her stay in our NICU.
This video will help you prepare to speak with the doctors,
nurses and other NICU team members about your baby's care.
It is important that you can talk with the NICU team
about what has already happened with your baby.
What is currently happening
and how things may go in the future.
Over the next several minutes we will describe
which NICU team members are responsible
for which type of information about your baby.
And we will review how information about your baby is shared
between all members of the NICU team.
Then we will describe how information is shared
between you and the NICU team.
Information about your baby's day to day progress.
As well as reviewing the big picture
for your baby and your family.
We will also offer suggestions for preparing
for these conversations to help you get the information
that is most important to you about your baby's care.
Because many people work in our NICU,
it may seem difficult for you
to know who you can talk with on a day to day basis.
For most families, the NICU doctors,
nurses and other staff are unfamiliar to you.
You may have just met them a few days or weeks ago.
In addition, many parents cannot be in the NICU 24/7.
Some live far away.
Some have their own medical problems.
Others have to work
or take care of other responsibilities at home.
This may mean that just one family member can be
in the NICU at a time,
while other family members are at home.
Perhaps you and your family can only visit every few days.
We understand that it can be stressful
when you cannot be by your baby's side all the time.
You may worry that you cannot talk with the NICU team
about your baby as often as you might like.
Just as you want to get to know the NICU team,
we want to get to know you and your family as well.
We'd like to know what is important to you,
what might be worrying you, and what you are hoping for.
Learning more about your family will prepare us
to help your baby and you as much as possible.
Let's review some of the different members
of the NICU team and the types of information
about your baby's care that you can expect from them.
You may have already watched
or read, A Parent's Guide to the NICU,
which describes how you can tell the NICU team members apart
by the different uniforms they wear
and by their staff badges.
The NICU nurses wear dark blue scrubs,
they stay close to your baby's bedside throughout the day
and night, checking vital signs
and providing feedings and medications.
Your baby's nurse knows how your baby has been acting
and responding today.
Nurses can also tell you what sorts of tests
or treatments your baby will have.
If your baby remains in the NICU for more than a few days,
one or two primary nurses will take care
of your baby most days and nights.
The primary nurse is a consistent person for you
to talk with about your babies progress over time.
The NICU doctors either wear royal blue scrubs
or regular clothes.
The doctors are either residents or doctors in training,
neonatal fellows, and neonatal attendings.
NICU physicians rotate every few weeks,
so you may see different doctors caring for your baby.
The NICU doctors oversee every aspect
of your baby's medical care in the NICU,
from feeding, to antibiotics,
to breathing treatments, to skin care.
Depending on your baby's needs,
the NICU doctors may chose to include specialists,
for example, doctors who specialize in heart problems,
or stomach problems.
The specialist will help direct the care
for that specific problem.
While the NICU doctor will oversee all of your baby's needs.
You can talk with the NICU doctors
about your baby's overall condition
and about what it might mean for the future.
The NICU also has a medical team
that includes Nurse Practitioners.
The NICU Nurse Practitioners
or NNPs wear light blue scrubs.
They work closely with the NICU doctors
to direct your baby's treatments.
Just as you can talk with your doctor,
you can talk with the Nurse Practitioners
about your baby's condition,
and about the goals for their care.
You will meet a variety of other NICU team members.
The NICU social worker for example,
can help your family navigate some of the challenges
of being a NICU parent.
Such as balancing your responsibilities at home,
coping with the emotional roller coaster of the NICU
and preparing for life after the NICU.
The NICU chaplain can also support you
and your family through this challenging time.
Now let's review how
and when the different NICU team members communicate
with each other about your baby's care.
Each morning the NICU team will meet
outside your baby's room to review what has happened
in the last 24 hours.
And to make plans for the day.
This is called morning rounds.
Morning rounds are a chance for every team member,
including you, to hear about what has occurred
over the last day or so.
And to agree on a plan for the near future.
When your baby is also being cared for
by specialist doctors, your NICU team touches base
with those specialists in person
or by telephone as often as needed.
Everyone also leaves notes in your baby's medical record
to outline their plans.
In addition, the doctors and nurses
all give detailed reports to each other
at the end of their daily shift
so that the oncoming team knows what has happened
in the last 12 to 24 hours.
Parents are encouraged
to be part of nursing shift report
at seven a.m. or seven p.m.
If your baby is in the NICU for several weeks or more,
the NICU team will meet weekly
for something called goals of care rounds.
During goals of care,
the team reviews your baby's progress since birth.
And thinks forward about important decisions
that might be needed,
such as surgery or transfer to another hospital.
Let's go over when and where you can share your questions
or concerns with the NICU team.
Morning rounds is a great chance for you
to hear the NICU team discussing many details
about your baby's progress.
This is also a great chance
for you to ask questions about that progress.
Parents who like to know lots of detail
about their baby's medical care may wish
to be present for morning rounds as often as possible.
For some parents,
morning rounds seem like an overwhelming amount of people
and technical information.
If that is true for you,
you may prefer to ask the NICU team
to summarize the big picture for you
at the end of their discussion.
If you are not able to attend morning rounds,
you can get an update by telephone later in the day.
Another good time for you to hear the medical details
about your baby's care, is during nursing shift change.
Which happens two to three times daily.
During shift change, nurses review your baby's schedule,
including their medicines, nutrition
and planned tests or procedures.
They also review how your family likes to be contacted
and about when you next plan to call or visit.
When you are in the NICU you can listen in
on the nursing report,
and afterwards ask any questions you might have.
There are several other important opportunities
for talking with your baby's team.
If a subspecialist is helping to take care of your baby,
for example a heart specialist, or surgeon,
that doctor does not usually join NICU morning rounds.
Specialists will come to see your baby
at a less predictable time of day.
Though you can ask the specialist
to try to come when you are here.
You can also ask the specialist
to call you to discuss your baby's care.
In addition, the NICU team is always touching base
with your baby's specialists
and can help relay information between you
and the specialist team.
In addition to these daily conversations you might have
with members of your baby's team,
you or your doctor may also like to schedule a time
to sit down with several team members
to talk together about the big picture for your baby.
These are often called family meetings
and you may wish to bring other people from your family.
You may also invite any NICU team member
who you feel is particularly supportive or helpful.
For example, your baby's primary nurse or chaplain.
Family meetings may be small,
or can be quite large with many members of the team present
to provide input and the best continuity of care.
We know it can be hard to keep track
of all of the information related to your baby's care
and to remember everyone who is involved in that care.
It can also be difficult to know what questions
to ask when you do speak with the NICU team.
In the last part of this video,
we'd like to go over a few strategies
that some families use to prepare for conversations
with the NICU team.
And to keep track of the information
that is important to you.
You may wish to try a few different approaches
and see what works best for you.
Some families like to keep a notebook
where they can record information about their baby's care.
A notebook might be a place for you to write questions
that you want to ask the NICU team during your next visit.
You might wish to take notes during morning rounds,
you could ask your baby's nurse
to write a summary of what is planned for your baby today.
Notebooks are also a good place
to keep track of your baby's different test
and treatment results.
You might also like to record the names
of NICU team members important in your baby's care.
Some families like to ask the NICU
for written information about their baby's condition.
Handouts are a good way to be able
to review medical information several times,
so that you do not feel hurried
to understand everything right away.
You can share these handouts with other family members
or loved ones to help you explain your baby's condition
and care in the NICU.
Additional educational videos are available
on the NICU iPads.
If you are a person who learns well with pictures,
you might like to ask the NICU team to go over a drawing
or diagram that describes your baby's condition.
If your baby has had an important x-ray or MRI,
you might find it helpful to see that as well.
Some parents use the internet to find pictures of diagrams.
But the NICU team can provide pictures
that are most relevant and can help you understand
what they mean for your baby.
Finally, many parents feel confused
about what is happening with their baby
but are not even sure what questions to ask.
Some parents find it helpful
to use a Parent Question Guide
which is a list of questions
other NICU families have asked about their baby's care.
Some of the questions may be relevant
to your baby's care, others may not be.
But you can look over the Parent Question Guide
and chose the questions that you would like
to have answered by the NICU team.
We hope this video has helped you understand more
about how information about your baby's care is shared
between you and the NICU team.
There are several predictable times
and ways for you to talk with the NICU team.
You can attend morning rounds,
or can get a summary of morning rounds later in the day.
You can listen in during nursing shift change,
you can meet with your baby's subspecialist,
you can request a meeting with several members
of your baby's team to go over the big picture
of your baby's care.
To help you prepare for these conversations
and to get the most out of them,
you can keep a notebook that keeps track
of your questions and the answers you receive.
You can review the Parent Question Guide
and get an idea of the questions other parents have asked
in similar situations.
You can ask the NICU team
to give you written information and pictures or diagrams.
We hope this video has been helpful
and we look forward to talking more.
(gentle music)
(children laughing)
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