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?

It can be a challenging time in many ways to have your baby placed in the NICU. It wasn’t the new beginning you hoped for. Here are a few things you can do to that can make a difference:

1) Breast milk is a powerful gift for babies in general, and all the more so for babies who start life in the NICU. If possible, it’s well worth the effort (for your baby’s health and for your own).

2) Many babies in the NICU can’t feed by mouth yet. Others can take oral feeds, but aren’t strong enough to nurse. Others could nurse but need extra fortification mixed with their feeds. In all of these situations, start pumping and saving breast milk as soon as practical.

3) Ask to see a lactation consultant, even if you’re not ready to start pumping or nursing. This could easily fall through the cracks in a NICU, so don’t wait, ask. They’ll be glad you did. (So will you and your baby!)

4) Be sure the containers you use to store and feed breast milk are free of BPA and phthalates — like all of the products made by BornFree. This goes for the pump and tubing too. BPA and phthalates act like hormones. No one benefits from being exposed, but this is especially true for vulnerable babies.

5) Hold your baby when you can, as appropriate. Skin-to-skin contact is even better. Sometimes the only contact may be a brush of your finger, but even that can be powerful.

6) Get the rest, food, support, help you need for yourself. You deserve it. And it will help your baby too. Airplane instructions remind us, in the event of an emergency, to put on our own masks first, and then help our children. This wisdom applies to the NICU. First taking care of yourself helps your baby (and your milk supply) in many ways.

These NICU days may seem very long right now, but they will end and soon become a memory. Hopefully these tips will help you make the most of these unrepeatable moments.

Note: Dr. Greene teamed up with BornFree in September of 2008 to help teach families about important issues concerning BPA, phthalates, and PVC.

If you can’t hide it, embrace it.

From fairly early on after being diagnosed with Arthritis, my joints started to change. I used to get embarrassed at people looking at my hands – they look like an 80-year-old woman’s hands. A newspaper reporter once wrote in what was actually a lovely article written about me, that if there was a jewelry line for the Wicked Witch of the West, I could be the hand model.

I used to wear my sleeves down over my hands to cover them up, and certainly not ever make gestures with them. But at some point of my metamorphosis, when I came out of that self-protective shell I began to learn to express myself in a more physical manner. Now I talk with my hands, use them naturally to illustrate a mood or point, and hope people look at them and that if they do wonder about my deformed fingers or scars, or my stiff movements when my lower joints are in flare, they’ll also ask.

I believe in capitalizing upon what makes me different – I was never afraid to describe myself as a reporter with a disability. As a matter of fact, I had wished that the outlets I had worked with when I was a broadcast journalist would help me to get the word out because it was very important for me to show kids with disabilities that a very dynamic and public career was possible for them.

I want people to ask questions. I have spent time as a motivational speaker for groups from school children to medical and physiotherapy students, to doctors. In the spring I plan to start a blog for people with Arthritis, and this year I will write a proposal for a book that is aimed at helping young people accept their diagnosis and future.

We spend so much of our young lives wanting to be like everyone else until eventually we want to step away from the pack. What a better way than to embrace our uniqueness – a characteristic, trait, or in my case, condition, that makes us every bit of who we are.

As my family prepares for another weekend, I have to face the inevitable decision about “What are we going to do?”  This is a never-ending question from my children.  My two children who are not disabled always want to do the stuff normal families do…go to a movie, go shopping, or go out to a meal.  I am always torn by this because I owe my children a regular childhood and yet we are far from a regular family.  We are reminded of this constantly whenever we are out in public.

What is it about my daughter in a wheelchair that gives other people permission to stare and remind me that we are different?  Don’t people understand how rude that is?  The minute someone draws attention to the fact that my family looks different they have  ruined my happy, family moment.  Does my beautiful daughter in a wheelchair really make us so strange?

The responsibility falls to parents to make the time to teach their children that people are different and that it is rude to stare.   We are fat, skinny, different colors, disabled, missing limbs, maybe burned or scarred.  If your life has not been touched by tragedy you still must teach your children to be respectful of those who look different.  To children I will simply say “Ask questions if you’d like, but it’s rude to stare”.  To their parents, I am less polite.  It is an innate reaction to protect Quincy and I have no problem flashing my best evil-eye and telling them “It is rude to stare at my daughter…please stop!!”

Sometimes I just don’t have the strength to face the stress and hassle and will choose to remain in the comfort of my home.  It’s just irritating that my family should be deprived of a simple, carefree afternoon out, maybe at Costco, the bookstore, or the Zoo, because we have to deal with the rudeness of others.    But, we soldier on and ignore it because our kids are just as deserving as anyone to enjoy the simple pleasures in life.  Simply put, staring hurts and my life has enough hurt in it already…I do not need strangers adding to it.

I have recently reconnected with some old friends from high school and college thanks to the modern miracle of the Internet. It’s always a thrill to get reacquainted with people who I shared so many important experiences. But, as we start to share about our lives I am always struck by the same realization…my life is so incredibly different and complicated and it can take the shine off the excitement.

I have a feeling this is something many families like mine experience. Our lives are so unique and our challenges so great that we begin to rebuild our friendships and networks with families facing similar circumstances. It’s just easier and practical. I mean, it’s inevitable that one of the first things to come up with old acquaintances is the desire to get together…to meet each other’s children, families, spouses. This is always a tough spot. At what point do you inquire about the accessibility of their homes? Do you have a ramp? Can a wheelchair access your backyard? Ugh…I just hate that. It makes me feel like an alien.

So, it is my fault that I have allowed many relationships to fade away. It’s just too much to deal with…explaining Q and her needs, explaining it to their children, trying to haul a wheelchair into their beautiful homes, trying not to muck up their carpets, finding a space where she can be changed….on it goes. It’s too much stress and I start to become distant and non-committal. Eventually we just become those people who simply exchange the annual Christmas card.

On the other hand, I have some of the most incredible friends…people who are passionate, caring, and loyal. Some don’t have children with special needs, but they accept my family and my life with such grace. They ask the right questions, offer the right help…if they invite us into their homes they make sure that everything is in place for Quincy, not as an afterthought but because they know it eliminates a great deal of stress for me. For them it is not a hassle or an inconvenience, it’s just what they do for me. And what they do not know, they ask. My friends are brave enough to ask me a lot of questions. They understand and respect that I am private, perhaps to a fault, but have taught me that sharing can be a good thing. I have decided that having a handful of friends like these makes up for a lifetime of possible friendships that I have allowed to fade.

I will continue to venture slowly and cautiously into relationships with new people. I have learned that you never really know what challenges others face. I have met old friends who are struggling to raise children with autism, others who have joined the cause for safer vaccines, others who have lost children. So, I do not judge…I just proceed slowly. And, if the feeling of being an alien begins to fade then I know it’s the beginning of something I can build on.

I was talking to a friend of mine today who is raising two beautiful girls, one who is a young teenager and another who is a “tweener” with autism. We began one of our many conversations about our lives and the challenges we face. Our conversation focused on the balancing act we walk to make sure we do everything we can for our disabled children while meeting the needs of our other kids.

The siblings of disabled children are unique, special kids. They have great empathy and understanding for anyone who faces challenges. At a young age they learn to recognize medical conditions like seizures and environmental factors that may be unsettling for their siblings. They learn to communicate without language, and they learn how to provide comfort and care with the stroke of their hand. They also understand therapy, doctors, medications, hospitals and even emergency rooms. They know their siblings are different and they seem to roll with that. They weather whatever comments they may hear with brave faces and hearts. But, they are still kids and in order to do right by them we understand that our focus cannot simply be about Quincy. We must make time to celebrate their lives, their activities, their achievements. We must make them understand that they are special and that even if our life is somewhat dictated by their sister’s needs, they will never take a backseat. We help them to foster lives that are separate from hers, so that they understand the pure joy of “normal” relationships and activities. And, we learn to forgive them when they have situations where they would rather not have Quincy take part. They need that…they deserve that.

They will grow up to be amazing adults who will treat people and situations differently because of their sister. They will have great tolerance and patience. Maybe they will turn to occupations that will help other families or people who face similar disabilities, like therapists or doctors. But, whatever they choose to do I know it will be spectacular and that they will make a significant impact in this world. As parents we must make sure they understand our lives are different from others, but it isn’t a bad thing…it’s just a different thing. If we can learn to celebrate our differences and learn from them, like our children are doing, our world will be a better place.

The great joy of being a parent is celebrating your children’s success. Every developmental milestone reached by our babies is carefully recorded in scrapbooks. We save report cards, trophies, ribbons, medals and all the wonderful trinkets our children bring to us for their brilliance in academics, sports, or civic clubs. We share their work with neighbors, grandparents, even subject our friends to our bragging through annual Christmas letters. It is a joy to watch our children succeed.

This is no less of a joy for families raising children who suffer with disabilities. The only difference is that we measure their successes differently, perhaps with baby steps. And our children’s accomplishments just don’t seem all that interesting to the rest of the world. Those who love to hear about a soccer team that won the local championship simply don’t understand my pride in watching Quincy learn a simple gesture that indicates she needs a drink. And how can Quincy mastering a feather switch hold up to the accomplishment of a child who won the local spelling bee? I would argue it holds up better.

By watching Quincy and my other children I have learned that she works 1000 times harder than any other child her age to accomplish the smallest task. She is more patient, more determined, braver and tougher than any 14 year-old who can ride a dirt bike or play soccer. And nothing bothers me more than when someone watches something that Quincy can do, like ski or float in a pool or even smile at a joke, and say “Isn’t that cute?”. She is not a baby and it’s not cute. It’s commendable and wonderful and exciting…it is not simple and cute.

Please understand that the pride of parents who raise disabled children is no less than the pride of the parents of normally functioning kids. We want to share their accomplishments and have others rejoice in their success. But we usually don’t…we sit quietly and listen to others talk about their kids and we say little. Not because we don’t have anything to share, but because we know that unless you walk in our world you probably cannot appreciate what Quincy has overcome. Most people look at her for what she cannot do…we see her for all that she has become. And, in my mind she deserves a gold medal, an induction to a Hall of Fame, a trip to the White House and a full-ride scholarship to an Ivy League school already.

Children and teens with CFS have many of the same issues as other children with chronic illnesses, confounded by the fact that they have an illness which is poorly understood, often misunderstood, and too often misdiagnosed. And what do we tend to do when we don’t understand an illness? We tend to deny it, ignore it, and accuse the sufferer of malingering. My son Brian once said that “I wish I had an illness like cancer or diabetes instead that people could easily understand and that I wouldn’t have to constantly explain”.

We also have to remember that kids have a full-time job: school. This is not just where they are working on their education, but where most of their opportunities for social interaction and even extra-curricular activities occur. School-age kids need to socialize; school is usually the foundation for those social interactions. Children and teens with CFS can easily become isolated, especially if they have prolonged periods of school absence and if their friendships are based around group activities such as sports. It was important to us to let all of Brian’s friends (and their parents) know that Brian’s illness was not contagious, that he welcomed visitors, and we had an open-door policy for parents who needed a place for their kids to come hang out. To facilitate this, I made sure to serve the best snacks in town (even when Brian had no appetite).

While students with CFS may qualify for special services under the Individuals with Disabilities Education Act (IDEA) and/or Section 504 of the Rehabilitation Act, it is often difficult to obtain these services, especially if the exacerbations of the illness are inconsistent. In most cases, parents must go through the process of obtaining an Individual Educational Plan (IEP) for affected children and the school must provide reasonable accommodations including home tutoring if necessary. This process takes time and persistence. And even once a plan is in place, it may be difficult to schedule home tutoring for a child with unpredictable sleep needs and energy cycles as well as numerous doctors’ and physical therapy appointments.

The issues of how difficult this process is for the parents goes way beyond the scope of space I have for this entry! Suffice it to say that caring for a child with a chronic illness affects the entire family: emotionally, financially, and in every other possible way. If both parents are employed outside the home, flexible child-care arrangements must be made, in addition to home-schooling arrangements. This, alone, can be a tremendous hurdle.

Long before we completed the IEP process, we did a few things that were very helpful for my son throughout the course of his illness. First, when he couldn’t even read, we instituted what I called “The Tivo Curriculum”. While parenting groups and even the American Academy of Pediatrics have strongly criticized the fact that most children watch too much television, we embraced it as an extremely valuable educational tool. Using Tivo, I could enter keywords related to Brian’s academic subjects (e.g. “Ancient Greece” or “evolution”) and get lists of appropriate television programs on those topics. We also tivo’ed general education science shows such as “Myth Busters” and “Beyond Tomorrow”. Using the theory that “laughter is the best medicine”, we used the tivo curriculum to combat Brian’s eventual depression as well, taping all sorts of comedy shows (e.g. “Whose Line is It Anyway?”), funny movies, and stand-up comedians.

While we had professional home tutoring when needed, we relied most heavily on a high school student tutor. Having an older boy come to the house to work with him was easier than a “real” teacher and gave Brian some sense of social interaction as well. This was also much more cost effective (and he was a brilliant student)!

In addition to keeping as up-to-date as possible with homework and other assignments, we asked all of Brian’s teachers to send home any videos that they thought would be helpful in supplementing their curricula. Obviously, this was much more helpful in some subjects than others, but we did discover a video teaching series from The Teaching Company (www.teach12.com) which even helped with algebra and physics. We found that the best way to homeschool algebra (which I have long forgotten!) was to enroll Brian in an online distance learning course run by the Johns Hopkins Center for Talented Youth (http://cty.jhu.edu/cde/index.html); it was fortunate that Brian had already qualified for this program prior to his illness.

These were some of the strategies that worked for us. Managing Brian’s illness—and teaching Brian to adjust to a new “normal” in his life—continues to be an ongoing learning experience for our entire family. We had many advisers along the way, but no specific written plan or instructions. I hope that my writing this will help other families as they struggle to help their children and teens manage CFS or other chronic illnesses. . .and I’m always open to hearing other success strategies!

For more information about CFS, go to www.cfids.org or www.njcfsa.org.