The time your baby is in the NICU is always very stressful for parents.  First and foremost is your constant concern for your infant. There can be many ups and downs in the NICU and often your infant’s status can change very rapidly. One day your baby may be doing really well and the next, your baby may need greater medical intervention.

As a parent of a child in the NICU you may have many other competing responsibilities and concerns. Generally babies can be in the NICU for many weeks. As a rule of thumb, the length of stay corresponds to your due date but this is not always the case. But for instance, if your baby is 8 weeks early this may mean your baby will be in the NICU for 8 weeks, if not longer. You may have other children at home to care for, a job or live some distance from the hospital. It is important for you to have a personal plan and to take care of your own health. Here are some things to consider:

1. If you have other children at home can a family member or friend help care for them?
2. Are you getting enough rest? Is there a place in the NICU – often the room where mothers can pump – where you can rest if you need to while at the hospital?
3. Remember to eat and drink enough fluids – particularly if you are pumping for your baby or have started to nurse. Carry water and snacks in your bag.
4. Do what feels right for you as parents when it comes to visitors. If you do not feel ready for family to visit – be firm and don’t feel guilty. NICUs are very busy, stressful places as it is.
5. Trust your instincts in your baby’s care and speak up if something feels wrong.
6. Find out about in hospital support for parents. Most NICUs provide parent peer support groups and some NICUs have introduced parent empowerment programs where different aspects of NICU care are explained in plain language to help parents understand what is going on.
7. There are many online support groups where other NICU parents share their stories. Reading how others have coped can be very helpful.
8. Ask for help from the social worker or patient advocate if you have concerns that you don’t feel are being addressed.
9. Keep a journal to record your own thoughts and feelings.

I would love to hear from readers what they did to help them cope while their baby was in the NICU.

The more informed and engaged you are, the more involved you will be with your baby’s care in the NICU. You are your baby’s primary advocate. Here are some suggestions to enable you to be the best advocate for your baby.

First, begin to keep a daily journal. Each day write down the members of your baby’s care team and their schedules. Learn all that you can about your baby’s daily health status, daily goals of care and treatment plans. Usually in the morning your care team will “huddle” by your baby’s isolate to discuss the goals of care for that day. Ask if you can participate in that important meeting. If you are a part of the huddle – write down the daily plan. If you are not, always ask your baby’s primary nurse for each shift what is the care plan for the day. Some questions to ask everyday:

1. How is my baby today?
2. Are there any changes in the care plan – if so, why?
3. What tests or procedures is my baby having today? Why are they necessary – what are the risks involved? Does the risk outweigh the benefit of any given test or procedure?
4. Is my baby’s care plan being coordinated with all team members especially during shift changes and transition moments when my baby’s care is handed off to another nurse, physician or other care team member? Don’t make the mistake of assuming important information about your baby is always being relayed among your care team – you always need to double-check.
5. When can I hold, feed, bathe and diaper my baby?
6. When can I nurse my baby?
7. Record in your journal your own observations about the daily changes you can see in your baby.

What other tips can readers suggest for a daily checklist?

Today’s post offers parents some information on who may be part of their baby’s care team in the NICU – and what, in general, their roles may be. There may be many different members on your baby’s care team – especially in a Level III NICU. These care providers may rotate in and out based on your baby’s needs and daily goals of care, their own schedules and the needs of other babies in the NICU. As important as knowing what they do is knowing who they are – in other words – their names! The human connection is essential in fostering what will be the all important parent-provider partnership that may last many weeks or months.

1. Your baby’s physicians are called neonatologists. They are pediatricians who have been specifically trained in the care of newborn babies or neonates.
2. Nurses in the NICU are specifically trained to care for neonates. They provide the day-to-day care and know best the goals of the daily care plan for your baby. Get to know your baby’s nurses. They are the human face of high-tech care. Nurses in the NICU generally work 12-hour shifts. Because the work is very demanding their schedule may be something like 2 days on and one day off. You may not have the same nurses every day as they rotate around the nursery based on the daily assessment of the needs of all the infants. As a result, you will most likely work with many nurses over the course of your baby’s stay in the NICU. As in any life situation, you will find that you develop different relationships with different nurses based in part on personalities and how closely you work with them.
3. Respiratory Therapists can be an integral part of a preemie’s medical care team because the lungs are the last major organs to develop in utero. Infants may need extra help in maturation and monitoring to avoid respiratory distress, which is carefully supervised by respiratory therapists.
4. Physical and Occupational Therapists: Neonates, because they arrive too early, often need help with sucking and feeding – which falls under the realm of physical therapists. Occupational therapists will work with babies to position them in the isolettes to maximize healthy growth of their limbs.
5. Social Workers work with families on logistical and financial issues and organize ongoing care if your baby needs it once he or she leaves the NICU.

While your medical team provides the highly technical and specialized care your baby needs to mature given interrupted gestation, ask your nurses how you can participate in day-to-day care – when can you hold, bathe, feed and change your infant? Your baby needs your loving care just as much!

I would love to hear from readers how they learned to partner with their baby’s care team.

A first step to understanding the NICU is learning the lay of the land. Be patient with yourself – you are getting adjusted to a strange and foreign terrain – but it is important to know where and why your baby is in a given NICU. NICUs are generally classified as either Level II or Level III reflecting the level of care these specialized units can provide for babies who need extra medical help.

Level II nurseries can care for babies born at 32 weeks or older and like all NICUs are staffed by specially trained physicians and nurses. Level II nurseries, however, do not provide respiratory support for more than 24 hours – a common need in preemies as their lungs and other vital organs are not fully developed at delivery. If your baby needs respiratory support – like a ventilator – a Level II NICU’s primary objective will be to stabilize your infant to transfer to a more acute, Level III facility.

Level III NICUs care for the sickest and most premature babies who may need a wide range of medical intervention and support. Level III NICUs provide many different types of respiratory support as well as different levels of on-site surgeries. The most advanced Level III NICUs provide the most advanced surgical interventions including open-heart surgery. It is actually safer to provide surgery on site within the NICU setting then to risk the disruption of transferring fragile infants to an operating room.

NICUs may differ in physical design. Some NICUs are set up to assign each baby to an individual room that can enable the parents to stay. Larger NICUs may have several large rooms with an open floor plan with a central nurses’ station in each.  Incubators or isolettes as they are now often called will ring this central station so babies are always in the staff’s sightlines. In this design, babies are “triaged” according to the level of medical care they need. The babies who need the closest monitoring will be in one room and those who may be transitioning to being able to do more on their own in another, for example.

Because NICUs are very complex, technology driven units the medical staff understands that an important aspect of their job is to answer the many questions you may have about tests, treatments, equipment and therapies. Tomorrow’s post will introduce some of the many highly trained specialist medical personnel you may encounter if your baby needs to be in the NICU.

I would love to hear from readers how they learned to navigate the NICU itself.

Every expectant mother eagerly awaits the day when she will finally hold her baby in her arms. But for mothers of premature or very sick newborns – that moment is postponed as their baby is whisked away by a team of highly trained physicians and nurses to be cared for in the most high-tech of hospital units – the Neonatal Intensive Care Unit called the NICU (rhymes with “pick you”).

Parents of premature or sick infants must contend with many stressful elements that can accompany a stay in the NICU – first and foremost the reality that you will leave while your baby will stay behind – often for weeks or months. The sights and sounds of incubators, monitors, tubes and other medical equipment combined with teams of specialist physicians and nurses speaking a foreign, medical language as they provide complex treatment to the most tiny and fragile of patients can, understandably, be overwhelming to parents. Worry and questions about one’s baby are coupled with worry and questions about understanding the NICU itself.

In my book, The Patient’s Checklist, I offer patients and their families 10 simple and common-sensed based checklists to help navigate a hospital stay. This week I will be provide basic information, strategies and checklists tailored to help parents cope with having an infant in the NICU. Clear communication, as in all healthcare interactions, is key to partnering with your baby’s medical team. An ongoing dialogue with your baby’s physicians and nurses is the foundation to understanding and participating in your infant’s care. But where to begin?  Ask as many questions as you need to so you can make informed choices about your baby’s care. Your first question may be “When can I hold my baby?” and that seems a fitting place to begin.

It can be very hard for parents to feel that they play a vital role in their preemie’s day-to-day care when that care is so technology driven. But your role is the most important of all. Your infant may now be the tiniest of patients but he or she is first and foremost your child.  Even in these first days and weeks of life, you instinctively know your baby in a way that the doctors and nurses never will. You will find the best ways to bond with your baby within this complex and unfamiliar environment even if at first you cannot hold your baby. Your voice, which your infant recognizes at birth, can provide that first connection and comfort. As you gain your bearings, your insights lend a powerful perspective to your child’s care. Your infant needs you as both loving parent and engaged advocate in the NICU.

If your baby was in the NICU, what did you do the first few days to help you get adjusted?

For the last few days on DrGreene.com I’ve share the first three checklists from my book, The Patient’s Checklist: 10 Simple Checklists to Keep You Safe, Sane and Organized . Today I’m skipping to Checklist 6, The Daily Journal because I think keeping your own health diary is one of the most important things you can do in any medical situation.

It is so important to keep a written record of any type of hospital stay – whether an emergency room visit or a longer stay. Your journal is your story – a personal version of the medical chart.

Here are some things I would recommend to keep in your journal:

1. Who are your nurses and what are their shifts? There are more communication mix-ups at “hand-offs” or shift changes that at any other time. Make sure your nurses review your child’s care plan when they change shifts.
2. Which physician is supervising your child’s overall care? Are their residents and interns involved in your child’s care? Write down their names and shift times too. Make sure that at their hand-offs all correct information about your child is exchanged.
3. Keep a daily log of all medication your child is taking and review with your nurse so you are absolutely familiar with your child’s regimen. Medication mix-ups are a very serious hospital hazard. You need to make sure that every time your child gets any medication that it is the right drug, the right dose, the right time and that it is meant for your child!
4. How does your child feel? Is she in pain, listless, anxious, restless? Immediately alert your nurse and doctor if anything seems wrong.
5. Get the number for the hospital’s Patient Representative. You should never hesitate to call them if you have any concerns or frustrations that you feel are not being addressed. It is their job to advocate for the patient in the hospital setting and they can help facilitate many, many things from contacting your doctor to organizing a family meeting to finding out reasons for any care delays to food complaints.

It is important to get the lay of the land if your child is in the hospital. Here are some important, practical tips to keep in mind to help you get your bearings.

1. Make names a must in all hospital interactions.

• Names are the first thing to go in the hospital setting. Using names encourages the essential human connection – the key to collaborating with your care team. Get to know the names of your doctors and nurses  – don’t let them remain strangers to you or your family at this most crucial time. Nurses are the human face of technology driven care. Your nurse is your day-to-day point person and coordinates your child’s daily care plan. Nurses can explain to you – in plain language – what are the goals of care each day. Often you might only see your doctor during the short time they are making rounds.

2. Consider your child’s hospital room your temporary home.

• Find out how to work the TV, the phone, the bed, and the call button. Make sure that everything actually functions properly.
• Climate control is essential to your child’s comfort. Being cold slows healing and increases vulnerability to infections by suppressing the immune system. Make sure you have enough blankets for your child to stay warm.
• Pack extra pairs of socks to keep your child’s feet warm. However, always be mindful of slippery floors and change your child’s socks if he has been walking on the hospital floor before he gets back in bed – germs!
• Most pediatric units provide cots for parents because they know parents will stay 24/7 with their children if they can. If you need to go to work, make sure there is a trusted family member or friend who can stay in your stead. Never leave your child alone. There is just too much going on in every hospital and it is too easy for even the most basic, but important details of your child’s care to slip through the cracks. Your child needs you to be vigilant about monitoring their care.

I would love to hear from you. Do you have any tips that proved really helpful during a hospital stay?

If your child has scheduled surgery you have time to think about packing some important items – ones that can make your child more comfortable and ones that can promote good hospital hygiene. If, on the other hand you find yourself in the emergency room, you can ask a family member to bring a few items for you if needed.

1. A special blanket or toy can be very soothing to a young child in such an overwhelming, foreign setting. But keep track of any items and always wash them immediately upon returning home. Hospitals are breeding grounds for germs of all kinds.
2. A family photo– it reminds both you and your child of life outside the hospital.
3. Hand Sanitizer and wipes. Patients are constantly exposed to surface contaminants (bedrails, food trays, TV remotes) as well as the hands of hospital staff and visitors. It is critical to wash your hands regularly but also remember to keep your child’s hands clean. Your child can touch a table surface that might be unclean and then put her fingers in her mouth, for instance. Not following basic hand hygiene is the number one culprit for hospital-acquired infections.

My book, The Patient’s Checklist, grew out of my family’s experience caring for my Dad during a very long hospitalization from an entirely preventable medication error. I learned early on that the single greatest threat to patient safety in hospitals is human error: communication breakdowns resulting from overly fragmented care by overworked doctors and nurses, lapses in the most basic sanitary practices and mistakes in routine care because of the frantic hospital pace. I found that checklists were practical, important reminders to manage the complexities of hospital care. While the book is divided into 10 user-friendly checklists that take you through a hospital stay from beginning to end, in this post I will review a few key points from Checklist 1: Before Your Go.

1. Have a support system. Having involved family and friends is the single most important way to ensure better, safer care for any patient within the busy, complicated world of the hospital. If your child has to go to the hospital always remember that you know your child best – how they are in daily life. Your doctor may have critical medical information but as the parent you have critical life information about your child. Never forget that. So trust your instincts. Speak up. Ask questions about everything that is going on around your child in the hospital. Ask your doctors and nurses to explain everything to you using plain language – not medical speak so that you can truly understand what is going on.
2. Make sure your doctor knows every prescription medication your child is taking – including any over the counter medication and vitamins. When my son had such terrible asthma as a young child he was on daily medication as well as a nebulizer when his symptoms flared up. I asked our pharmacist to provide me with a complete printout of his prescription medication and kept that and his pediatrician’s card in my wallet at all times. On those occasions when I did have to take him to the emergency I had a print out to show them so there was never a mistake in communication about dosage levels.
3. If your child does have to have surgery, find out all the details. If possible, both parents should go to all appointments together. Two sets of ears are always better. Ask questions. Ask your doctor to use plain language. Make sure you understand all the reasons for surgery, the benefits, risks and alternatives.
4. Get phone, pager and email contacts for your doctors and their staff in case there is an emergency. Don’t be shy about this – you may need to contact your doctor.

No parent can bear to think about the possibility that one day your child, from injury or illness, may wind up in the hospital. But consider these statistics from the Center for Disease Control:

• 22 % of all children under 18 will need to go to an emergency room this year.
• Almost 9% of all children under 18 will be hospitalized with five days as the average length of stay.

All through toddlerhood, my son suffered from severe allergies and asthma. There were more times than I can stand to remember where my husband and I would find ourselves racing Sam to an emergency room when his breathing became so labored we could not manage his symptoms at home. It was always scary for us, his parents, but I can only imagine how much more so it was for him. While he has thankfully outgrown his asthma and the careful monitoring that it required, he is an active, athletic young teen boy and that has meant trips to the emergency room for other reasons: a broken wrist from playing soccer, another broken wrist (the other one) from snowboarding, a concussion from a particularly raucous game of flag football. We all want our children to be healthy, curious and truly engaged with the world around them but illness and injury are often a part of living too. And it is essential that as parents we actively partner with our child’s care providers during a medical crisis. But how, given an environment that is often so foreign and forbidding to us, and during a time of overwhelming stress and anxiety?

All patients and their families need a basic roadmap to navigate the confusing and intimidating terrain of any hospital. Hospitals are scary places. We go to them when we are at our most vulnerable, suffering from an illness or injury. Hospitals can also be dangerous places as the frantic pace and fragmented care provided by a team of rotating doctors and nurses can put all patients’ safety at risk.

Communicating with your care team and partnering with your doctors and nurses is essential for every patient. Communication failure is the root cause of most preventable medical error. Parents have a special responsibility because our children are completely dependent on us. We know our children best, their personalities, how to read their responses, interpret what they are trying to tell us – in short – what is normal for them. As parents we can provide critical knowledge and observations to our child’s care team at every juncture during a hospital stay.

I have found simple checklists to be an essential tool to keep track of the chaos of our high tech hospitals. Checklists help me communicate more effectively with physicians and nurses. They provide reminders for the many critical care details so that I can actively promote the best, safest care for my family and friends. The next few posts will provide checklist tips from my book, The Patient’s Checklist: 10 Simple Checklists to Keep You Safe, Sane and Organized that can help you actively participate with your doctors and nurses if your child faces a trip to the hospital.