Know your NICU…

When you have a high risk pregnancy .. it’s all consuming.  You have appointments at least once or twice a week and many times you wish you could just be hooked up to a monitor 24 hours a day.   You don’t mind the multiple doctors visits.. you actually look forward to them.. because that is the only time you know for sure your baby is still alive. Those few brief minutes, when you can see your baby inside you and hear a heart beat.. those are the only moments you can breathe.. that’s when you could “enjoy” your pregnancy.

You stop caring about getting a good picture during a sonogram appointment.  Gender doesn’t matter.  The first question I would always ask is “can you find a heart beat”…   Fetal movement is always a good indicator of life later on in pregnancy.  You know your babies are ok because you can feel them moving.  When you have twins.. or any multiple pregnancy that goes out the window.  “Do you feel them moving?”.. the doctor would always ask me .. honestly,  I never knew what I felt.  Maurice was in a sack with no fluid .. he never even measured on a growth chart.. he was always so small.  My belly was shifted all to one side because of fluid overload in Peter’s amniotic sack due to Twin to Twin transfusion syndrome.  I couldn’t inflate my lungs because of all the pressure.  I felt kicks always by my ribs on the right, but was it one baby .. two babies.. a foot ? an arm? … I couldn’t differentiate any of it.  I only knew they were still alive when I had that probe on my belly and a beating heart was on the screen.  This would happen twice a week.  The rest of the hours in each day I would only pray.  For many other high risk mothers .. this is what pregnancy feels like.

You are so focused on your doctors who are taking care of you at that moment.  I had to fly out of state multiple times.  You have to do anything you can to try to ensure their safety. Instead of a baby shower or planning a cute outfit to come in you are reaching out desperately to physicians and other mothers.. literally anyone who can give you information about your condition.  I found tremendous support in Facebook groups and from friends who went through similar situations.  It’s terrifying… you need people who understand.  You know NICU life will be part of your journey …but during pregnancy all your energy is focused on delivering babies who can survive.  You pray so hard for miracles.

Many moms and doctors will tell you to “take a tour” of your NICU.  Meet the NICU doctors and nurses.. see the facility.  That’s all well and good, but how many people actually know what to expect or what questions to ask.  I know I didn’t.

I’m a PA and even after training and being familiar with medicine and hospitals .. I still didn’t know.  I knew there were different levels and assumed all NICUs of the same level are basically created equal.  I was wrong. I started this blog to help other parents going through similar situations.  I was ( and at many times still am) lost but everyday I’m learning more.

If there is one core message from our journey, it would be to be your own advocate.  In order to do this you must learn all you can about your condition, your doctors and your NICU.  It’s not fair.  You should be able to sit back and just enjoy this life growing inside you but you must be strong for your baby. They are fighting so hard for you. It’s challenging to navigate through it all but please consider this as a basic guide based on my experience and if anyone has any questions I’m always here to help in any way I can.

You might already be overwhelmed .. but do not leave out this important step.  You are doing everything to keep your miracle babies alive and then you have to leave them … every day and every night in the hands of the caregivers at the NICU.  This could be a blessing or a night mare.  You should know as much about your babies doctors (neonatologists) as you do your own.  The only thing that keeps you sane during this process is trust.  To me.. trust comes from knowledge and building relationships.

Schedule a tour.. but even more importantly know what to ask and look for during your tour.  Do not assume they will tell you everything you need to know.  Even NICUs of the same level can be very different.  Here is a list of important things to ask your hospital.

1.  Do you have one?  Don’t just assume your hospital has an experienced neonatal intensive care unit for at-risk deliveries.  Even babies born from healthy pregnancies may need NICU time.  Know what is available to you before it is too late.

2.  What level NICU:  they are graded based on what capabilities they have

Level 1: This is a well baby newborn nursery.  Basically babies born on their due dates with no issues.  They can provide standard medical care ( “late preterm babies” 35 weeks and later).

Level 2: This is a special care nursery which can handle “moderate preterm babies” 32 weeks or greater.

Level 2 is broken up into a and b :

Level 2a cannot provide respiratory assistance

Level 2b can provide respiratory assistance ( such as Cpap)

Level 3: A neonatal intensive care unit (NICU) can support “very premature babies” born 27 to 30 weeks and above.  They can provide respiratory support and delivery IV hydration

Level 4: regional NICU : (highest level of care) A level 4 NICU can provide care to “micro preemies.”  This is a term given to babies born at 22 to 26 weeks weighing less than 1 pound 13 oz ( Maurice was 1.7lbs) The biggest difference between a level 3 and 4 is the ability to provide ECMO (  extracorporeal mechanical oxygenation).  It is an advanced form of life support for patients with significant heart and/or lung problems.  A level 4 NICU also offers sub speciality surgeries such a heart surgery for congenital disease and may offer neurosurgery for brain issues.

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3.  What specialisties do they have:  Neurology? Cardiology? Physical therapy? Occupational Therapy?  Opthomology? Pulmonary ? If your baby is born early they will require a number of specialists. My boys had eye and ear exams, physical therapy, cardiology, pulmonary, nephrology .. even a genetic specialist was consulted. If you baby is born with a congenital heart defect that needs repair, is the a cardiac surgeon available at the hospital or would you have to be transported to another hospital? There are some defects that are not picked up during pregnancy and you want to make sure if it happens you have a plan. Sick premature babies require a team.  You want to know who will be a part of yours.

4. Outcomes and Statistics:  How do their statics compare to the national average. What is the survival rates of babies born at 30 weeks etc.

5.   How many beds do you have?  And what is the nurse to patient ratio:  There are 5 levels of acuity in the AAP/ ACOG guidelines. Guidelines suggest babies with more issues be cared for by more experienced nurses or those with special training . Like with any job, Registered nurses in the NICU can differ in their experience, and speciality training.  Ask is there is any level of speciality training for NICU nurses treating babies who are very small or who have more significant issues.  Also what is their procedures when the babies are more stable. Will they be on a 4 to 1 assignment? Meaning will the nurse caring for them also have 4 other babies to care for? In the beginning premature babies need a lot of attention. Anything more than 2 to 1 seems risky in my opinion. After they are more “stable” maybe 3 to 1? Ask! Bigger doesn’t always equal better ! Some NICS hold 60 babies .. it is going to be very different than one that has 20. Size may change the amount of attention you and your babies have.

6.  How many attending do they have? Do they have a fellowship/ residentance program and how often do they rotate? Do they make independent decisions? If there is a resident working with you .. will they consult the neonatologist before making a plan? In order to be a neonatologist you must first complete medical school. Then doctors do a three year Residency in pediatric medicine. After that there is a 3 year neonatology fellowship. If you have a resident or fellow know what year they are .. a first year resident is right out of medical school. This is very different than a third year fellow. You have the right to know what level of education your practitioner has and what degree of decision making they will have. Also if there are a lot of attending you will likely not have the same doctor treating your baby during your stay. Some attending rotate every few weeks and then new ones are there on the weekends. It is very important for you to get to know you babies doctors and it is almost impossible to do when they change constantly. The more they have the more change you can expect.

7.Are there nurse practitioners or physician assistants in the team? I am a PA and I can tell you our training and experience varies dramatically. A new grad PA has likely only had a few months experience in the nicu. A PA who has been there for years will likely function almost as well as the doctor. Mid level practitioners are a wonderful thing. Just be aware of who is in your team.

8. When new equipment is received what is the training procedure:  new technology is an incredible thing.  There is a laser device now that can help nurses find veins.  They are constantly upgrading monitors and machines.  I can view Maurice on an angel monitor from home and see him in the hospital by logging into an app. Just think about your cell phone and how much that has changed.  If you are a busy nurse or doctor and new equipment arrives .. you must be trained properly. This is not my opinion but rather standard of care.  Typically, the staff is trained prior and must “sign off” proving they have been educated on using it.  In my practice we even had a decreased patient load until we were all comfortable with any new equipment. This is very important.  Machines are great but become useless and dangerous when no one knows how to use them.

9. How often do they do “rounds” and are you allowed to join in .  Rounds are a time of review. Your team.. ideally everyone taking care of your child.. from nutrition, to the nurse and doctors all gather together and discuss results and progress and prepare a plan for the day.  Some hospitals do this once in the morning and again at night.  Some also allow parents to be a part of it.  For me this is essential.  I am the type of person that does well with all the information.  For some, this may also be very overwhelming.  I would encourage you .. no matter how difficult.. to participate in this.  It all sucks …every last part of it.. but do what you can to learn and make your presence known. Try your best .. even if it is just to meet the team members. Many facilities encourage this involvement and will be patient explaining things to you. (I will add a post explaining some of the common things discussed in rounds as a guide if you think might be helpful)

10. Visiting, security and hand washing.  Do you have visiting hours.  Who can visit and how many at a time.  If sibliglings can visit are there precautions to make sure they are not sick ? Do you check their temperature before entering.  Does security make sure everyone washed their hands before entering?

11.Private rooms.. this is something I never thought about. Private rooms are very very attractive. When I first saw it.. I loved it. But what makes more sense … to have your babies alone in rooms down a long hallway or to have all the beds close by so there is always someone near in case of emergency. After experiencing an emergency.. holding my baby alone in a room and watching him turn blue in my arms.. I can assure you having babies and nurses close by makes much more sense. Also in NICU Medicine .. nurses and doctors and always talking about “knowing your baby” .. not looking at the monitors and seeing them .. how they act. If everyone is close by all the nurses pass the babies often and get a sense of who they are. If you have a baby in a private room and the nurse taking care your child also has 4 other babies all in other rooms.. there in no way for the nurse to get to know your baby. There are significant limitations. If there are no private rooms ask about protocol if a baby is sick or in isolation.

12. Do they offer classes? Some NICUs offer free Cpr classes. Do they have Support groups? Is their anything for siblings? A child life specialist? Do they offer Pictures? As silly as it may seem .. pictures were very very important to me.. exactly how they were at that moment .. the tubes.. the wires .. it honored them. Some NICUs provide this service. I was blessed to have a dear friend offer it to me and she came in and photographed us. I know it may be one of the last things on your mind. I didn’t know how many days they would be with me after they were born. For weeks.. at any moment we could have lost them. Having these photographers and being able to look at them when I was away from them.. is something I will forever cherish.

13 Breast feeding support. Is there a Lactation consult? Do they offer donor milk to mothers who cannot produce enough breast milk on their own? Can you rent a machine from the hospital? Do they provide supplies for pumping … containers for storage etc ?

14 kangaroo care: do they encourage you to hold your baby. What do they have to help. One NICU had a model doll so you can practice lifting your baby out of the isolette. Another NiCU gave out shirts to help you hold them. I love my kangaroo shirt and it changed my kangaroo experience ! I will be offering them in my store soon!

15 Continuity of care: this I would highlight and Star a million times. Will you see the same doctor, or have a main nurse… who will “know your baby??” I know you will know your child well.. the way they cry when they are wet or the way the like to lay in the isolette.. even the color of their skin or if they are “puffy” another word used often to describe swelling or edema. I cannot tell you how many times I heard .. well, “your baby is new to me so I can’t tell if he’s “puffy”… or “I can’t judge if he’s sleepy”.. he just seems tired … how could you??  How could a nurse know your baby ..Or a doctor know if they keep changing .. week after week.. day after day.. meeting new people.. them “just watching”.. It is obvously impossible for the same doctor to treat you 24 hours a day.  What is done to ensure all doctors are “ on the sameness page”? Do they meet to discuss the babies each week?  My hospital now has all attendings meet once a week to discuss each child to ensure some continuity.  There are a few different ways to get from a to b and you want to make sure everyone who will be treating your baby is aware of the plan and agrees.  You never want to hear “I don’t know why that doctor would do that” or even worse no one knowing what a doctor because “ the doctor is on vacation and it is not documented correctly.”  Documentation is essential.  Also when caregivers keep changing .. all issues must be clearly defined. For example , if your child is having episodes which means they stop breathing.. it must be defined as “it is this many seconds and heart rate and breathing did this..”. Words like a little or a lot.. up and down…or seems to be ok…  these are opinions and have no place in medicine especially when there is no continuity. Make sure whoever is treating your baby knows your child and uses clearly defined numbers and medical terms when describing their behavior.  If you are in rounds and you hear these words.. ask for numbers… “Watching NICU babies” is another common theme and again make sure it is defined. You also want to ensure all practitioners follow the same guildlines. Policies and procedures within an institution should not differ and all physicians are mandated to follow them. For example if your baby received a blood transfusion.. what protocol is followed ..Do you full feed , trophic feed, no feed… many topics in medicine are very debatable and you want to ensure your facility is up on the latest research and that the doctors follow the protocols in place.

13 Mistakes: no one is perfect. This is true for nurses, doctors, Mother’s all of us.. things happen.. if something does not seem right.. question it!!!! It is again difficult to navigate through all the people.. but you can always ask to speak to a charge nurse.. or doctor or the director of the nicu if needed. Find out how they will handle it. It is very unfortunate .. but you must be your child’s advocate. In medicine there is a standard of care that MUST be followed. Issues such as documentation, following hospital protocols and competency of staff in using equipment as well as responding to emergencies are necessities. You have rights as a patient and if you are not satisfied with the level of care you are receiving.. you can leave!!

I know I am likely leaving out some things but please please comment if there is anything special about your NICU or any advice you could give other mothers. I can only pray our experience helps someone else. Us mamas have to stick together!