Wow-this has been quite a journey for you. Several weeks ago, we began this blog by talking about your new world of being a new parent to a baby in an NICU (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/page/2/) . We hope that you were able to get to the NICU, whether it was in the same hospital or a hospital in yours or another city. We recognized that this new world could be very overwhelming, and that you might need some time to adjust to it.

We acknowledged that this world could be very frightening with new words, machines, beeps and lights flashing and health care providers whose roles you may or may not remember (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/10/14/first-days-in-nicu/).  You were encouraged to get involved with your baby and find out what you could do to help him or her. You were encouraged to provide milk for your baby if you could, and to involve the rest of your family in your baby’s life.

You learned that there are some conditions that may be experienced by your baby in NICU, like infections and setbacks that might slow their progress towards home (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/10/25/just-over-a-week-in-the-nicu/).  You were reminded that this journey might feel like a roller-coaster, and that this might be difficult but you could do it, with support.

We encourage you to remember that the first few weeks in the NICU are like learning not only a new language but being expected to speak it fluently.  Your other children, if you have them, need to know how to be in this environment and you may notice that you and your partner may not see the experience in the same way (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/10/27/the-end-of-the-second-week-a-pivotal-time-in-the-life-of-an-nicu-family/).  You were encouraged to focus on your own health as your baby was in the NICU, because they would need you as they got better and needed your involvement more.

I reminded you that you need to be prepared to connect with others in this journey- your friends, unless they had a baby in the NICU just like yours, won’t have a good understanding of the world you are now in. You need to ensure that you take this time to keep writing your questions down so that you get the answers you need to help you manage (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/10/31/no-one-else-appears-to-understand-what-you-are-going-through-as-a-parent-of-a-baby-in-an-nicu%e2%80%a6/) .   You needed to get thinking through the next steps in getting ready to go home.

I reminded you that fear of something happening is very normal- (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/11/02/every-parent%e2%80%99s-worst-nightmare-is-that-something-bad-might-happen-to-their-baby/) and I hope you learned a bit about how to work through those challenges.  This blog also reminded you to give your baby some resting time, so that they could grow the best they can, and get home sooner.

We talked a bit about the culture of the NICU and also how you can share your cultural norms and rituals with the team (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/11/10/by-now-you-are-starting-to-get-to-know-the-culture-of-the-nicu/). This is important as it helps us understand and know each other but it also ensures that your baby is not receiving any non-medicinal therapies that the team is not aware of- they may not work well with the current therapies that the team believes are important for your baby.

I spent one of my blogs focusing on other children- this new world of being at the hospital most of the time will have a definite impact on your other children, and they need to be involved, in whatever way you can, depending on the rules of the NICU (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/11/14/your-other-children/).  Even if they can’t come in to see the baby, they can send photos, draw pictures, and see the baby in photos and videos if you can take some for them.  They will definitely adjust better if you involve them early in the hospitalization.

We needed to acknowledge that everything that happens in an NICU is not happy- babies become critically ill and some will die, and this could be happening in an area of the NICU near you (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/11/16/loss-may-be-happening-near-you/). It is frightening to know that it is happening, and may increase your own fears, so make sure you speak to your team about how you are managing through the experience.

We recognized that big meetings with the team can be very overwhelming, with lots of people, opinions and information, but remember, the meeting is being held to inform you or help you to plan the next steps (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/11/21/big-meetings-with-the-team-it%e2%80%99s-all-about-the-information/). Take advantage of these opportunities to have your questions answered, and if you are feeling outnumbered, ask for a few of the additional people to excuse themselves.  Don’t be afraid to ask questions and reframe your understanding of the answers if you aren’t sure what the team is talking about.  You can ask to see scans, if ultrasounds, CTs or MRIs were done, and then make sure they explain what they are seeing, compared to normal.

Then we began to focus on what to think about as home is being planned- lots of decisions, learning and planning may need to happen, and you need to be prepared (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/12/08/planning-for-those-next-steps-home-or-closer-hospital/).  Keep using your notebook to help you make sense of what you need to do- checklists can also be helpful.  Keep in touch with the discharge planner or your nurse and social worker if there are tasks that you need to be responsible for.

We spent a bit of time focusing on what life might be like after you go home and how to begin to adjust to this new life that you will be the primary person managing (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/12/12/what-happens-after-you-go-home/).This includes acknowledging the feelings that may be very mixed as you are suddenly responsible for things that others were the experts in, and all for your baby, as well as managing your own home.

We reinforced the need for you to work closely with your primary health team, whether that is a family doctor, nurse practitioner or pediatrician, and those who help them support you and your baby (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/12/15/follow-up-your-pediatricianfamily-doctorhealth-team-or-follow-up-clinic/). This is important to maximize the potential for your child, and reduce the impact of any potential challenges they may have.

We acknowledged that the emotions that occur are not surprising to the health care professionals but may be very overwhelming to you- make sure you deal with them, so that you can be all the support you need to for your child (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/12/20/emotions-in-this-new-world%E2%80%A6/). This also includes connecting with any available community based programs that would be good for parents and infants.

My second-last blog focused on the potential of future children- while in the NICU this may not have even been on your radar screen, but it does come up as a question, worry and uncertainty for some families (http://www.babyfirst.com/blogs/parents-role-in-the-nicu/2011/12/22/future-children/). I hope that thinking about questions and information was helpful to you and will give you some food for thought in the future.

I think it was important to review all of these blogs today as blogs always go backwards, and I seldom remember what I was told several weeks ago. If you come into the blog part way through, this is the page you will see, so I hope you find what you need.

This has been a great opportunity for me to share my learning in the 21 years I have been an NICU nurse. This learning has come from working with some pretty amazing families. I hope it has given you some ideas, like the notebook (if you take that one idea away, and nothing else, I will be very pleased). Feel free to give feedback to the blogs and share your stories- this will make this blog a much richer place. I look forward to hearing from the many parents and extended families who might read this blog.  Encourage your friends to access it, to learn more about the journey you are on, and, if you are a family member, think about how you can better help your loved ones as they adjust to a new world with a baby who is or has been in an NICU, sometimes for days, weeks or months.  Support will make the experience a better one for everybody.

Thank you,

Lori

You have been home for weeks to months and many parents eventually think about whether or not they want to have other children.  While your baby is little, we hope that you being careful by using adequate methods to protect yourself from unanticipated pregnancy, so that you don’t become pregnant until you are ready. This readiness includes being prepared both physically and emotionally, and believing that you can handle complete care for another new baby in addition to the one who was in the NICU.  This again, is important to discuss with your primary health team and the sooner the better!!!!

What is the risk of having another baby in the NICU? That is something that needs to be discussed with the obstetric/maternal-fetal medicine team or other health care providers who are experts in this area.  The risks are totally dependent on what brought your baby to the NICU, the length of time since your previous pregnancy, your own previous pregnancy history and your personal health at the time you want to consider becoming pregnant.

If you are able, try to take the time and opportunity before you become pregnant, to consider all of these possibilities and to meet with specialists, if you need.  This is the time to see if the provider can support you through the challenges of you being a nervous pregnant person who may have many questions and want more frequent assessments.  This is to be expected for you, but some providers may not be comfortable with the more intensive monitoring you may need, even if from a psychological perspective.

If your baby was born prematurely, you may remain nervous and worried until your baby gets closer to full term, which is a very realistic thing to be.  However, it is hoped that your visit to the NICU was a one-time event, and your next baby can go home safely soon after birth. Some obstetricians will use frequent assessments to monitor you, or will consider bed-rest if you start to look like you may go into early labor again. Listen to the team, and do all that you can to reduce the chances of early delivery.  If you do have another baby who is born prematurely, it is hoped that you will be more comfortable with the questions to ask and the experience that your new baby may be experiencing.  I have learned from parents who have been in the NICU with their first baby that they were shocked at how hard those first weeks were with the next child, as they were ultimately responsible for them right at the beginning- no NICU nurse to take over when they needed to sleep. You may need guidance on how to be a “normal” parent, and you will need to ask if you are uncertain about how a healthy term baby behaves.

If your baby was in the NICU because of complications from their delivery, you may have concerns and fears until you know that your baby is healthy and home for a few weeks.  Again, this is no surprise, and you may be requesting regular follow up from your pediatrician or health care team, just to be sure there is no problem.  Again, make sure you trust your team, so that you can feel confident that they will support and understand the experience.

No matter what the future holds, we hope that you will enjoy the baby that you have taken home from the NICU, with the supports from the team who have cared for you.  We also encourage you to take your time to focus on this little one, as there will be lots of things to learn with your baby, whether it is the special needs they may have, or the new skills they will acquire over time as they grow and develop.

Stay connected with the communities that support your baby’s development, whether it is play-groups when they are able, or early intervention programs to support your baby’s needs.  Development is a continuous process and you will make the biggest difference in this journey.

In our final blog we will review all you learned about, just to make sure you didn’t miss anything important.

Lori

Your child has been home for a few weeks, and that is great news, but sometimes, it can feel overwhelming. The realities of your baby’s prematurity or their challenges during their first few days to weeks may not be visible in the early days of being home, but may start to show themselves as your baby grows.  Some babies who have had reduced oxygen in their early days may be at risk for cerebral palsy (http://www.babyfirst.com/parents-corner/glossary-neonatal-intensive-care-unit-terms.php). These uncertainties can be very worrisome to parents, and answers won’t usually come quickly. The best you can do is to advocate for your child and provide the best environment for them, including physical, emotional, and cognitively. This is a big role- probably the biggest role in your life.

When your baby was in hospital, you started out mostly watching, then as your baby grew and recovered, you began to provide all the care you could learn- from holding and feeding to bathing and providing their medical care. Suddenly, you are responsible for everything.  It can become very draining, and this means, like earlier, you need to care for yourself. When your baby rests, you should rest too.  If you get sick, you should bring in a friend or family member to help you, as you don’t want to make your baby sick.

You might be very worried about your baby, and that makes lots of sense after all they would have been through. However, your baby also needs to be treated like a baby, and your relationship with your health care team/pediatrician will help you to make sure that you are doing all you can.  You may feel guilty when you don’t want friends to visit, as they might handle the baby too much or might make the baby and family sick. This is normal too, but, once you have established your comfort at home, you need to expose yourself and your baby to the real world.  However, take your time, and think about the weather where you live.  Too hot weather or too cold weather is not ideal for a newborn or a previously sick baby to be exposed to. When you do go out for a walk, make sure that you think in advance of how you might handle new situations before they happen. If you go to a local shop or mall, and others want to “touch” your baby, politely tell them that you are trying to keep your baby safe, so please don’t touch. Preplanning can help you feel confident that you can handle it.  Also, go for your walk with another parent with a young baby- you can then have company of someone who understands when you need to stop to feed or change your baby, or when you have to go to the restroom. Company is very important to this new life.

If your baby was premature, they may be much older than they appear, as they are often still tiny when they are a few months old. You can choose whether or not you want to let people know any details about your baby- while what you say is not lying, if it is just someone you meet in the grocery store, it doesn’t really matter that your baby is 3 months corrected, rather than a brand new baby.  By thinking about who you share this personal health information with, you will be less likely to have to deal with people’s misinformation and preconceived bias.

Another emotion that many parents talk about after weeks to months of hospitalization is loneliness.  You have had people around every day- you have been able to talk to your baby’s nurse or social worker or doctor when you had a question or just wanted an update.You may have become friends with other parents on the unit, who may still be there after you leave. This isn’t as easy any more, and that can feel very different for many parents.  New babies in most families leave parents feeling lonely and vulnerable, as they are on duty 24/7 and don’t feel that they have time for grocery shopping, self-care activities, visiting friends and just getting out to enjoy a pleasant day. These are important part of parent’s lives, and need to be considered and valued as part of your day. Your baby will need the stimulation and so will you- TV can’t be your own “friend”.

There may also be the ability to connect again with the staff who cared for your baby- during the follow up appointments, you may meet some of the team who cared for you.  There may be ways that you can connect with the staff like “preemie picnics” or post-graduate activities.  Some units may have parents who have been part of the program as parent buddies or part of family committees.  These may not be activities you could manage in the beginning of your new life at home, but you could consider if you might be interested in helping someone else some day in the future. When you are ready, let the social worker or nurse manager know of your interest in helping other families.

Some day you will be ready to take advantage of the parent-baby programs that may be offered in the local community centers- these are great for both parents and children and my need you to sign up far in advance, so plan ahead.  Find the ones that are drop-in, and those that have no cost or low cost.  When you plan on going, be prepared.  Your baby shouldn’t be around other babies if they are sick- you don’t want to share what they might be getting.  Make sure your baby’s area is clean (not sterile like you think they need), and that you throw down your own blanket on the area they will be placed. Don’t forget to remember drinks for yourself as well, and feed your baby prior to the activity, but not too close to the activity. Have fun, and help your baby develop into the best person they can be.

Enjoy this transition to a healthier family,

Lori

Because your baby was in an NICU for a period of time, there may be developmental issues that need to be monitored, whether they are physical, developmental or social.  This is because prematurity or care in an NICU, especially if there was a period of reduced oxygen can lead to developmental challenges.

You need to think of your baby from head to toe, when it comes to support as they grow and develop.  Let’s start from the top- brain development- optimal brain development requires appropriate stimulation, good nutrition, and good parenting.  Thinking of your baby’s head, sometimes those born early need support for their skull to attain the appropriate shape- your team will let you know if this is in the picture for your little one. Read to, sing to and talk with your baby, even if you don’t know for sure if they are listening or understanding- it is your voice that provides the all-important stimulation that keeps the brain developing and helps mature all of those connections.  Also, along with this, make sure you give your baby adequate rest time- naps help with growth and development, and make sure that your baby’s body and brain get a rest so that they can continue to develop appropriately.  If your baby had some complications from their prematurity or their birth, your care team, pediatrician or follow-up team can guide you to ensure you have the best outcome possible.

Along with thinking about your baby’s brain, is thinking about their vision and hearing.  Some babies need assistance with this, and this may be known early or may develop later- if there were questions about the hearing or vision, make sure you attend to all follow up for your child, to ensure that you get them the help that they need.

Having been a baby in an NICU, they may have had problems with their breathing.  Your baby may be able to receive the RSV vaccine- which could help them reduce one of the frequent viruses that infants can get. Make sure you keep your baby away from people who are sick- they shouldn`t come around any of you, to reduce the chance you could pass illnesses on to your baby.  Frequent hand washing with soap or hand sanitizer is a good practice, and that includes everyone who touches your baby. If your baby appears to be having any problems with breathing, make sure they are seen as soon as possible, as this is a concern for any infant, but more for a baby who was sick in hospital or born prematurely.  Know your baby`s normal- how they breathe when they are well, so you know how they breathe when they are sick. Another important piece of information that can reduce your baby`s exposure to infections is to maintain the medical team`s recommendations for immunizations and supplements, like vitamins.  You can help your baby be as healthy as you can make them if you follow what was recommended.

Next, going down their body is their gastrointestinal system, which may have been a huge challenge in the NICU or may not have been a problem.  Monitoring how much they eat is a normal part of parenting- keep in touch with your team to keep on top of their weight gain.  As well, as they eat more, they may have changes in their stooling pattern- we all think about breast-fed babies and their frequent stools, but as they develop things can change.  Keep an eye out to know what your baby’s normal is, so that you can communicate with your team about any changes you see. If your baby had problems with their bowels, it may be even more important to keep an eye on how much goes in and how much comes out, and how frequently it does.  This is a good signal for you about how your baby is doing.  If you are still feeding your baby by breast or by pumped expressed breast milk- that is amazing- you should be very proud of yourself.  The longer you feed your baby liquid gold, the more benefit they will gain.  If you aren’t able to, it is still important to maximize your baby’s nutrition safely.

Your baby`s bladder and kidneys don`t need to be actively thought about , as long as your baby is having frequent really wet diapers and is overall healthy- if you see blood in the diaper or your baby appears unwell, get them looked at, as you want to reduce any illnesses that could happen.

What about your baby`s muscles and bones- good baby massage, and stimulation that is appropriate for your baby will be the best for them, unless there is another reason that they shouldn`t be massaged.  Learn this in order to help your child- it will benefit their muscles and often calms them. Encourage your baby to wiggle around and stretch- you can`t always be wrapped up like a cocoon and develop your muscle strength.  As well, find out how old your baby needs to be before they can start `tummy time`, which depends on the baby. Work with your team to see what new challenges your baby will need as they develop. There are great toys and activities for newborns or ex-premature babies.

This is a lot of practical day-to-day info that I hope will keep you thinking about how you will adjust to your baby at home and your new life with your special child.

Next visit, let’s think about how it feels to be home.

Lori

Chaos- “24 hours a day where you are ultimately responsible for this little person that you had others to help you with previously.”  While some of that statement was made tongue-in-cheek, it is important to realize that it might feel just like that.  Suddenly you are responsible for administering any medications, monitoring your baby’s weight gain, ensuring that the feeds are ready when your baby is, stimulation, managing appropriate sleep cycles, dealing with all of the appointments that are part of your baby’s new life, and the list goes on…..

Take control of the situation by using your resources- if you have access to community nursing support for the transition home, use it- it might be for assessments or for respite breaks, depending on your baby’s needs (http://www.babyfirst.com/parents-corner/life-after-neonatal-intensive-care-unit.php).

Make sure you get your baby to the pediatrician/family doctor/health team soon after discharge so that they can see your child and monitor progress.

Use a calendar to plan out your days- start this in hospital, as you will be responsible for your baby’s care before they go home.  When it comes to basic home care items, see if others can help you in the first few days or weeks- it might be as simple as getting you groceries or helping with food and house cleaning.  These suggestions are important no matter if your baby was born prematurely, has some complications from their birth or hospital stay or if you had a baby who went home only a few days or weeks after their birth.

You need to focus on helping your baby be the best that they can be. This includes many developmental supports like helping your baby gain muscle control and develop the best way they can (http://www.babyfirst.com/parents-corner/promoting-development.php).  Learn all you can from websites, try safe things like infant massage, and talk to your health care team about other possibilities that might help your baby.

Your baby will not be monitored like they were in hospital, and this can feel quite frightening. We hope that you talked to your team about whether your child needs monitoring now, as most babies do not.  Baby monitors in rooms will pick up the noises your child makes but heart monitors and oxygen monitors can make home a mini-ICU, when your baby should be safe to breathe on their own.  If your team thinks it is important, however, they would have arranged for you to be taught how to use it and you would need to work with them to decide if and when it is no longer needed. It is all about communication between you and your baby’s care providers.

This is why it can be helpful to keep up that notebook- sometimes it can be helpful in sharing with the team information that you have noticed over the past few days or weeks.  Our memories aren’t always accurate, but if you write down what is happening, you can go back to it to describe thoughts to the team.

When in hospital, the medical team was in complete control over the volumes of your baby’s feeds, and kept a tight rein on their weight gain and nutrition needs.  Now this is something that you may feel responsible for.  Make sure that you have a good connection to the health team to keep monitoring the intake and growth patterns for your baby (http://www.babyfirst.com/parents-corner/nutrition.php) and know that things may change over the coming days and weeks.  They may have days where they want to eat constantly and other days where they don’t seem as hungry.  These can be normal or can be a sign that the baby may be feeling unwell.  If you are concerned, speak to the team and have the baby assessed.

This is just a small sample of the things you might think about as you adjust to the new world of baby at home.  Even thinking about how often to take the baby’s temperature is normal, as they did it all the time in hospital, but, unless there is a good reason, this is something that doesn’t need to be done several times a day or even every day.  Again, speak to your team about their recommendations.

The first week home is often a real shift in life-style, so be kind to yourself as you adjust- YOU CAN DO IT!!!

Lori

Last week we focused on some challenging conversations- looking at what was happening around you and the big meetings that can often make you feel very overwhelmed.  We hope that these issues are not high on the experience list, but need to be clear that they will happen to many families in the NICU world.

However, for most families, over time your baby will grow, be able to breathe more easily without much additional support, and hopefully learn to feed on their own. For some babies and families, this can happen in weeks, and for others, it may be month or they may struggle for longer.  For babies needing additional medical intervention, there may be the need for special feeding tubes, supplementary oxygen and additional monitoring, or possibly even more.  This won’t be suggested until the team identify that this little one just isn’t ready to take the next steps towards home without them.

If your baby needs the additional support to get them closer to home, make sure that you have begun to figure out what resources you will need to make this transition easier.

• Will there be supplies needed, will there be paperwork to fill out for insurance companies?
• Will there be personal costs if you do not have insurance?

Start thinking of this as soon as you can. Again, keep writing down the questions and the responses, as it can feel very confusing.

If your baby needs more time but doesn’t need intensive care, they may be transferred to a hospital closer to you or to another ward in the hospital you are in.  This might be scary for you but is actually a step in the right direction- towards home.

It may be possible for you to see the area that your baby will be going to, at least to know where it is.  Can you stay with your child? Are you able to continue to learn with your child so that going home will not be so overwhelming? These are important questions to ask.

When the baby is transferred, there is usually a comprehensive discharge document that will accompany him or her. This provides the new team with your baby’s story, including their birth story, what happened over the course of the NICU and any current issues that require follow up support.

You may need to clarify what you already know with the new team, and what you can already do for your baby, as important parenting tasks like holding NG feeds and changing diapers would not necessarily be part of the transferred information.

Don’t take offense if some of the rules are different in a new environment, including rules about visitors and when/if they can visit, if other children can come, and other guidelines- it isn’t that one environment is correct and the others are wrong, but it is about the different cultures of the units, based on the population they usually see, and the staff working in the environment.

You may be expected to supply different items in a step-down unit, like diapers, etc..  and again, each unit is different. That is why finding out in advance, and having a chance to visit the environment and know what the expectations are is important for you and for your baby.

There may also be different expectations for you to be present as your baby is growing to get ready to go home.  Finding these out early is important, as it may mean changing your routines, or putting other priorities on hold for a period of time.  You will know your baby better than anyone else, so the more you are there, the better advocate you can be and the more you can learn about what your baby needs.

Many times the NICU team will begin to have this discussion amongst themselves when the baby’s breathing support is less invasive (like CPAP) and they are taking a portion of their feeds either by nasogastric tube or orally if they don’t need breathing support. If you see these improvements in your baby, feel free to ask a trusted health care professional.  The process should involve you and the earlier the better.

This whole new team you will need to get to know may have different roles than when you were at the NICU- they may not have as many social workers, nurses, even respiratory therapists and occupational or physiotherapists, again depending on the environment.  You will need to develop new relationships with this group and we encourage you to be open to this change.  The hospital you are transferred to may be the closest pediatric facility or hospital with pediatrics support to your home, and, should your baby get sick, will be the place they may need to go.

You can also ask this team about getting a good pediatrician if you don’t have one already.  Developing that relationship early helps them know your baby and you a bit better- keep asking these important questions as you learn.

Immunizations are also important to think through- your baby may have received their first immunizations in hospital if they were born early, and you need to work with the team to keep them as healthy as possible.  Talk to the pediatrician about an immunization schedule.

Wishing you good travels as you get yourself ready to go closer to home.

Lori

As you sit holding your little treasure, as every good parent should do, your baby’s nurse has asked you when your family can come into the unit to meet with the team as they have some information to share. Your heart begins to race and you are feeling very scared. This is a normal emotion that might be unnecessary, as medical teams need to meet with families to help them understand information that they learn as the baby develops.

Informal meetings often happen at the baby’s bedside but it is very difficult to do a complete review with a family at that time.  If you want to sit down with the team, you can ask to do that at any time, but when the team asks to sit down with you, it is because they feel you need to know something that they have learned, and it may be an overall view of your baby’s condition, progress and prognosis or a new piece of information that they believe you need to understand.

Sometimes, these meetings are a head-to-toe update, including a summary of all of the results from tests that have been completed, current progress on feeding and possibly oral feeding, and the plans that need to be made before discharge or transfer to another hospital is considered.

At other times, they may be focused on new information that may impact the overall story of your baby- an infection, changes in the baby’s head ultrasound or maybe some feeding intolerance.  Any of these or any other information need to be talked about so that you completely understand the concerns, the plan and the anticipated impact on your baby and family.

How do you prepare yourself for one of these meetings? First off, think of the questions you have for the medical team- there may be thoughts or questions about previous information that you need to have some answers to. Make sure you and your partner talk about the questions together, just in case you get nervous when you sit down in the meeting.  Is there someone else who could be of help to you in processing the information? They might be able to take notes for you, so you can focus on the questions and answers. Make sure that you use your notebook, so that all of that information stays in one place.

When you sit down, make sure that you have the opportunity to advocate for your questions being heard- sometimes the medical staff become so focused on what they need to talk to you about that they forget that you too might have questions and ideas.

If you are working with a social worker, chaplain or a primary nurse, and they are able to be at the meeting, share your questions and thoughts with them in advance, so that they can make sure your questions get answers.

You may walk into the room where the meeting is being held and feel lost because there are many people there and you may not even know some of them. If you haven’t met doctors, nurses or specialists, ask to be introduced- you have that right. If it feels like too many people, quietly ask your support person (social worker, chaplain or nurse) if they are all needed. Teaching hospitals tend to invite all members of the team to these meetings and they can feel crazy-making.

When the medical team begins to describe the findings that they want to share, make sure you understand what they are talking about.  Remember, medical lingo should be described in the way that you need to understand it, rather than through medical jargon. I encourage parents to get comfortable with just putting up their hand and saying “can you please describe that in plain English (or whatever other language is being used)?”  This reminder to the team is critical to your understanding.  Also, when they describe something that you feel you need to get reinforced, language like “so what I hear you say is….. do I have it right?” will help you make sure that you understand what they are talking about.

As well, make sure that your partner, support people or others with you also understand, as their job is to help make sure they and you understand.

If information involves several systems, or still isn’t making sense, ask the team to draw pictures, or show you the ultrasound, MRI or other test results, and then to tell you what is normal or abnormal about it.  If the team is talking about the long-term impact of a certain complication, ask if you can speak to the follow-up specialists, to have a better understanding of what you will need to do to optimize your baby’s outcome.

Sometimes the medical team may provide information that you were never expecting to receive- like a diagnosis of a condition you never anticipated.  This can feel very frightening, but your best chance of understanding is to stop for a few seconds, and ask questions to help you understand.  We know that you will go online right after the meeting to look up this condition or diagnosis, and we encourage that.  However, we also encourage you to share your findings with the team, as sometimes, online information is not completely accurate, or may not accurately reflect the presentation of the condition in your baby.  Sharing of perspectives should happen from both parties, the medical team and yours, to help you advocate for the best interests of your child and your family.

In these meetings, decisions may need to be made, plans for surgical interventions, additional diagnostic tests, or potentially the medical recommendations not to provide certain interventions that the team feels are not going to be beneficial to your baby. Again, don’t respond hastily- you need to listen, process what you have heard with more questions and respond after you have had some time to make sense of the information just shared.  There may need to be limits to that time, especially if specific treatments are time-sensitive, and the team needs to make plans for what to do next.

Asking for a second opinion is usually an option, especially when you are making life-changing decisions, or being asked to consider life-changing medical recommendations.  It may take a bit of time to get that, especially if you are in a center where there are few experts in a specific field.  Is it possible to link in with a specialist via tele-health? Would the baby be transferred to another center for that consult?  These are good questions to consider when looking at what is the best thing for your baby.

As you might notice, this time has the potential to feel like it isn’t real, but you need to make the best of the information you receive and access all of the resources you will need to help your baby and to understand the impact of the information.  The team is there to help, you just need to ask.

Again, write down what worries you, what you need to understand better and who you might ask those questions of, so that you get the answers you need in a timely manner.  That notebook is getting good use, isn’t it?

When decisions are made or agreed to, make sure that you write down how you came to it, and how you feel about it, as it may be vital information in the days, weeks and months to come, when you have to share it with future caregivers. Sometimes you may have the most comprehensive perspectives as you are coming to this as the parent, not the specialist focused on one population, body system or condition. This notebook becomes  a big part of the story if you choose to use it that way.

I hope that these possible meetings are only ones filled with good news, but I know that you can and will do what you have to, to make sense of new information that comes your way.

Thinking of you in your learning,
Lori

The world of NICUs can be very quiet or very loud- depending on the environment you are in (single patient rooms or multiple patients per room).  Even in quieter spaces, you will often hear more than you might want to about what is happening to babies, other than your own.  We hope that conversations and stories are kept private (for every family’s sake) but we are aware that sometimes the experiences of other families may break through your quiet, baby- focused world.

Sometimes you may find out that babies near you are even sicker than your own baby. This can be very difficult as it brings up fears that might be held deeply within you. Sometimes, no matter how hard the medical team, and baby try, they are too sick to survive. This may mean that the environment is filled with sadness, anger and distress-both parents and staff. Sometimes, families are given devastating news about the long-term prognosis for their child, and they may be expressing their grief about this information very openly. It can be hard to hear, and you do have the right to leave the area if this is overpowering for you.

If you are feeling overwhelmed by what is going on near your baby, please make sure to find ways to work through those emotions- privacy means that the team can’t tell you what is happening, but if you know the family, they may share their sadness with you.  This is a very challenging experience, as you are focused on your own story, and may not be prepared for the emotional turmoil of other families. The best you can do for them is to just be present to their emotions, if you are able, and to validate their parenting of their little one. If you are too emotionally fragile to listen, encourage them to speak to their family and health care team about their emotions. Give the family your best wishes, and try not to use platitudes to alleviate their pain. Sometimes we feel that we have to say SOMETHING, when just a listening ear or a hug are all the grieving family need. It is okay to say “I’m sorry for what you have to go through”, and it is also nice to think about the memories you have of their baby and them as family, and share that- this can be done face-to-face or in a note which the staff could send to the family later.

Sometimes, you may be trying to go into the room when difficult news is being shared with another family.  You may be asked to wait outside for a little while. If you are worried about your own baby, ask the person you are talking to about how they are doing- a quick update can give you a chance to stop and take a breath.  In some environments, and under some circumstances, privacy of the situation may mean that you are asked to limit your time with your baby. Please understand that you too might want the same thing if you were in those circumstances.  If you find other ways of making your time away from your baby useful (pumping your milk, writing in your book or eating a well-deserved meal), you might not find it as overwhelming as it might feel.  Note that you may be quite emotional as you come back to spend time with your baby, and just accept that these emotions are very appropriate.

If your emotions and fears are getting the best of you, share them- whether with your partner, or other family members, or with those on the health care team.  Social workers are frequently accessed by families when these crises are observed, and are open to helping you process your emotions and work on ways that you can express them safely.  Chaplains and your own spiritual leaders can also give you a space to talk about your emotions and connect with your spiritual side.  Don’t forget to take advantage of these accessible resources for you in your time of need.

Again, if you find it helpful, use your writing book to express yourself, as getting the feelings out can help you to feel that the emotions are overwhelming you.  When you are able, get back in to spend time with your baby and recharge your batteries. If you are feeling sad, you are allowed to express that, but be reminded that you won’t be able to learn anything about what happened. Sometimes, when we are feeling fragile, additional cuddles, and Kangaroo care can give you a feeling of control over your emotions.

Have you been able to focus yet on the other children, whether they are yours (older siblings or multiples who didn’t need NICU treatment), or cousins of your baby? Your energy to date has likely been tunneled to what you need to do for your baby in the NICU.  Let’s take today and think about other children.

Most hospitals are very wary of inviting children in- not because we don’t like kids, but because we are trying to keep your baby healthy and focus on getting them home.  Young children can carry colds and flus, just like adults, but aren’t as likely to wash their hands well or cover their mouth with their sleeve when they sneeze.  If your hospital encourages children’s visits, they will likely be limited to the baby’s siblings, and it may be only when they are of a certain age.  Many hospitals will have a daily assessment of your child- asking you if they have a runny nose or fever or have been unwell- please don’t take your children to see the baby if any of these symptoms exist- protect everyone- your baby, other babies and families and the staff.

When it comes to understanding if the other children know what is going on,the reality is that your other children were likely very aware that this new baby would be coming, and they probably have many questions. There are ways that you can share your baby in NICU with others, and this can be done by photos and video (especially if you create it and share the experience with them regularly) as well as providing them opportunities to connect with their baby, even if not in person.  Drawing a picture that could be placed at the bedside (which of course you take a picture of for the other children), or having them read a story or sing a song onto a tape (or other technology that could be used in the NICU. These can be played when the sibling is not there, and will get the baby used to their brother or sister’s voice.  Think about finding a small token gift from the baby to them.  This provides a connection for the children, and makes them feel special.

There are many great books about parenting in the NICU, especially with other children, so see if any are available in your NICU, through the social worker or in the unit. I would encourage you to take a look at Centering Corporation’s NICU books – http://www.centering.org/index.php?page=book&id=134 . They have great resources to help parents talk to children about prematurity and the stresses of a sick brother or sister.

When your older children come to see their brother or sister, it might be scarier for you at first than for them. They often are excited, and need to be supported through the visit.  Make sure they know that they are not allowed to touch anything without someone else’s permission, and this is to protect their sibling.  As well, they might need short time spans in the room, especially if they are full of energy… Bring someone else with you when you come to spend time with your baby- then they can focus on the siblings while you focus on the baby. If there is a children’s play area at the hospital, help them to burn off energy before visiting with their baby, so that they can have a quieter experience.  Try to plan for quiet time as a family- whether it is reading a story to the baby together, or cuddling your recovering baby, these all need to be quiet times.  Bring along a special bag just for the hospital time, so that your child has things to do- crayons and coloring books, quiet games, or a couple of cars.  This provides entertainment that they don’t have daily, and allows the children to enjoy your time while you are busy with your baby.

If you are finding parenting an NICU baby and older children a challenge, ask for help from trusted family and friends. Even simple tasks like taking children to and from school, can be done by others, if it means you can focus on your baby and their needs.

What is most important for your older children is routine.  Others can help you with this if you write out the normal routine and ask everyone to stick to it.  Incorporate regular visits, when possible into that routine and work together to help your family manage their way through these challenging times.

I haven’t talked yet about your other multiples, if you had a healthy twin or triplet and one or more is still in hospital.  This adds to the stress, and the rules around these babies visiting is varied.  Find out if the other multiple should come to the hospital- they need to be kept safe from infections and illness, but they will also need your help too.  You may need to divide your time amongst your babies, and keep the NICU team informed of how you might need to do that.  While they are little, make sure you take lots of photos of each baby, and of them together if they can be, so that you feel like you are with each of them.  We know that this is a challenging time for new parents, and these ideas are just that- ideas.  Make sure that you find what works for you and go with it- as long as you are open to change as things change for your baby and family.

Enjoy your time parenting your growing family,

By now, you are starting to get to know the culture of the NICU your baby and family are in- the ways that the nurses work, the way that the team shares information and the way that they engage you and your family in your baby’s care in the NICU.  The team needs to understand your culture too.

You may be uncertain if this is important to the health care team.  As a nurse of many years, I believe that it is- if I can have a greater appreciation of your background and what is important to you culturally, spiritually and religiously, I can help you to access appropriate resources, as well as support you in expressing those beliefs as you care for your baby.

For some people, culture is the place that they came from originally- this is very important as it might help you to describe yourself and your family structure to the team.  Where you come from may also be where others of your family are- and why it is challenging to be alone or missing family members if they are from your place of origin.

Your spiritual beliefs may be very private to you, but may become important if your baby is having a crisis, and may come into play when naming your baby or expressing rituals that are important to you and your spiritual or religious community.

Rituals are helpful as you welcome this new child into your family.  Start off by thinking of what you would do if your baby had been born healthy and not needed NICU. You may have considered whether a baptism was needed as your baby was starting out life sick- I hope that your place of worship helped you to celebrate your baby’s life in the hospital, and can find a way to rededicate that life in your church or other spiritual community.  If other celebrations and rituals are important, I hope that you have been able to incorporate them into your time in the hospital.  Unfortunately, if fire or other actions that could be risky are involved, they can’t be done within the hospital, but could be done symbolically outside, and you could share what was done with your baby. Or, you might have a symbol of fire instead- like the battery-operated candles instead of a real one…  I have had the opportunity to work with many families who have brought their cultural traditions into the hospital- for some, a naming ceremony was done on the right day for that family and community, and as nurses, we were honored to be involved in the ritual. For some families of native background, a smudging ceremony was done outside the hospital, and the smudged ash was brought in to place on the baby.  What a beautiful ceremony that was….

As you can see, we want to support you in your expression of your culture and religious needs but I think in any of these opportunities, it is all about communication.  Teach us about what is important to you and help us understand so that together, we can find a solution that works for everyone. Bring your spiritual leaders, if they are available, to the hospital so that they can understand what you are experiencing and help you within your community. There may be some requests that cannot be honored but in discussion we can usually work something out.

If your cultural norms include certain ways of responding to information, this too is important for us to understand. I have met moms who were not allowed to come to the hospital for a period of time after their delivery, and we found other ways of helping them to be present to their baby while they were separated, like providing milk and using photos to connect with their little one.

Decisions may be made in the community as opposed to parents being the sole decision-makers.  If you come from a community where the larger group is critical to your decision-making, please inform the team- it will help us help you, and, when requests for discussions come, we will have an idea of who is in your circle of care.

Seems like a lot to think about, doesn’t it? In reality, these thoughts might be part of your everyday thinking, but you may not have been asked to state them out loud before.  Take a chance, and share your story, so that we can all learn together.

You may be thinking of non-traditional therapies that might be used in your home country.  Before you consider them, again- please speak to the team. They will do their best to help you understand if these therapies might conflict with your baby’s current treatment plan, or if they would be beneficial to your baby. It’s all about talking- with each other.

Talk soon,  Lori