A Different Journey:
Grieving and Coping After Your Baby’s Birth
and Hospitalization in a
Neonatal Intensive Care Unit (NICU)
For many NICU parents, it is shocking to them how deeply distressed they are by the birth and hospitalization of their baby or babies. Whatever the reasons for your baby’s NICU stay, feelings of sadness, regret, anger, powerlessness, guilt and anxiety can feel overwhelmingly intense. As a result, many parents worry that there is something wrong with them-- particularly if their child survives, and particularly if their child's health and development are fairly good. When you have so much to be thankful for, why do you feel so bad? Naturally, the better a child does, the more the parents may worry about their ongoing emotional distress. Most parents experience emotional fallout after their baby’s homecoming, particularly if their little one is doing well.
Like many NICU parents, you may yearn for emotional support and information about your painful, confusing, and overwhelming experiences of delivering, perhaps too early, a baby who needs to be admitted to the NICU. Effective support validates your sense of loss, and helps you understand that grief is at the emotional core of this experience. Love and joy and hope are also at the emotional core, but in order to get a handle on the accompanying pain, you need to see that grief is there too. Just by knowing and accepting this, you can begin to figure out how to deal with the wide range and complexity of your feelings. More specifically, it can be helpful and reassuring for you to
1. acknowledge that having a preemie can be so hard;
2. recognize the specific losses associated with premature birth;
3. learn about grief and ways to cope; and
4. figure out what it takes to come to terms and move forward.
The most pressing concern for many parents is relevant to this last point: "How can I come to terms with my child’s birth and hospitalization? How can I move on?" After all, when you're hurting, foremost in your mind is "When will I feel better?"
But in order to come to terms and move forward, first you must be able to grieve.
In order to grieve, you must recognize that you've lost something, and to do that, it helps to identify exactly what you've lost.
But first, in order to pinpoint your losses, you must feel that your reactions and emotions makes sense and are worthy of attention. In other words, you must acknowledge that "Yes, this has been so very hard, no wonder I feel so distressed at times, and I’d like to work through this pain."
When you can acknowledge, "This is truly difficult; I’d like to feel better," then you can
· recognize your losses,
· come to terms, and eventually, in some fashion,
· move forward.
So, let's start at the beginning, with this acknowledgment:
Having a newborn who needs intensive care is very, very difficult.
Your world is turned upside down. If you've had little time to prepare, you may have no idea about what to expect and you may get little support from your friends and relatives--or even health care practitioners. Most important, a tiny baby who you love more than anything is very sick, and you may be told that not even the doctors know if he or she will survive--or eventually be normal and healthy. If you are wondering whether your intense and painful reactions to your baby's birth are "justified," try sitting down and making a list of all the things that have been easy. And you will probably find that the list is practically nonexistent. Here's another way to think about life with a baby in the NICU:
Whenever you brush your teeth, you're overachieving.
Even after your family is discharged from the NICU, parenting a vulnerable infant is challenging. Above and beyond regular parenting, you have extra worries and duties concerning germs, illness, development, therapy, feeding, growth, interaction, fussiness, hypersensitivities, and possible or actual disabilities. In short, you must let go of many of your preconceived notions about parenthood and learn to become a different kind of parent to a different kind of child. And here's another fact of life:
Particularly in the early years, every time you floss, you deserve a gold medal.
So now that you can acknowledge the difficulties, let's recognize some losses.
There are many layers of loss associated with having a newborn who needs intensive care.
Much of what you've lost are opportunities and experiences you had looked forward to ever since you found out you were pregnant.
· If, during pregnancy, you receive the diagnosis that your baby has a serious condition, your plans for a blissful pregnancy fly out the window.
· If you experience preterm labor and are confined during the remainder of your pregnancy, this can complicate your home life, ruin your nesting plans, and be physically, mentally, or emotionally torturous.
· If you deliver early, your plans for the last trimester of your pregnancy, the labor, and delivery come unraveled as the birth turns into a crisis.
· If your baby’s serious condition is a surprise, the anticipated birth becomes a shocking turn of events.
· With your baby in the NICU, your dreams about meeting your baby, making eye contact, nursing, cuddling, and showing off to admiring friends and relatives--these all dissolve into the realities of a critically ill newborn who must be confined away from you and put into the care of strangers.
· Then, after recovering from delivery, you must leave the hospital with empty arms and aching hearts.
· And your friends and relatives are usually ignorant about what your baby must go through, and are certainly in the dark about what this is like for you.
And this is just in the beginning--there are many more losses that accumulate over the weeks and months. Even holidays, special occasions or rites of passage can be painful as they aren't turning out the way you had imagined many months before.
Whatever your situation-- even if your baby survives, even if health and development are now normal, and especially if there are continuing medical or developmental problems, or if your baby dies, you have a long list of losses, big & small, that you can acknowledge.
When you can recognize what you've lost, you can give yourself permission to grieve. Grieving is what enables you to come to terms with painful experiences.
Because grief is so painful to endure, some people believe that grieving is something bad to be avoided or something to be gotten over as quickly as possible. But grief isn't a problem to be solved--it's a process that unfolds.
Grief also isn't something you can experience in a neat progression of stages. It is a fluid experience of
sadness, anger, guilt, regrets, and failure,
longing, fear, disbelief, and emptiness,
preoccupation, confusion, sleeplessness,
fatigue, anxiety, irritability, hopelessness,
tears and agony--
and it can be impossible to predict how you'll feel day to day. There are no timetables. Instead, throw deadlines out the window. Recognize that certain things can trigger your grief anew, and accept that this will happen. Perhaps the sight of a big pregnant belly moves you to tears; a newborn snuggled in arms fills you with longing; the time of year you associate with the delivery brings annual melancholy.
Whatever you are dealing with, remember that your reactions and feelings are valid and normal, and you are not alone.
How do you cope? Sometimes it may feel like you don't. And that's okay. Give yourself permission to fall apart, to give up responsibilities, to spend time alone so you can process and express your grief--because in fact, doing so can be a key to your ability to cope and adjust.
Coping, in a nutshell, means facing your feelings and expressing them fully in constructive ways. Depending on whether you tend to be an intuitive or instrumental griever, coping will either consist of feeling or doing, respectively. For both styles of grieving, this means that if you are angry, scared, anxious, guilty, sad, whatever-- identify that feeling and find meaningful, beneficial ways to express it.
If you are an intuitive griever, you may find it helpful to talk about your experiences and emotions with others, write in a journal, cry, read books about others’ similar experiences, take contemplative walks, commune with nature, and generally experience your feelings as you move through them.
For you, it may be especially helpful to find someone to talk to, someone who can just listen without trying to "fix" you. That someone might be a friend, another NICU parent, your partner, or a counselor. Writing in a journal about your experiences, your baby, and especially your feelings, can be as healing as talking. As you move through your feelings, you release them, let go of what might have been, and adjusting to what is.
If you tend to be an instrumental griever, you may find it helpful to engage in physical activities, such as landscaping, remodeling, or sports; delve into projects at work or become immersed in a hobby or creative endeavor; research information about your baby’s condition and treatments; or volunteer for a worthy cause, such as a foundation that helps NICU families.
For you, it may be especially helpful to figure out what activities give you physical release, and what activities hold meaning for you regarding what your baby and family is enduring. At first you may focus on trying to “fix” the situation, and ultimately coming to terms with what you can’t fix or control. There is healing in letting go of what you can’t control, focusing on what you can do, and adjusting to this different path.
Whatever your style, your grief and coping will be as unique as you are. You may also find it helpful to understand that two of the most difficult feelings to deal with are fear and sadness. Feelings of fear are often what underlie some of your other feelings, like anger, guilt, anxiety, powerlessness, depression. For many people, it is easier to get mad, blame themselves, run around in a panic, or withdraw rather than face feelings of fear and vulnerability. It is really hard to deal with being SCARED.
It is also hard to be so sad that you feel depleted, despondent, and devastated. This is a scary emotion too, for you may wonder if you'll ever be able to climb out of the darkness.
But in fact, as you grieve, you are healing.
So instead of skating on the surface, immerse yourself in your grieving process. Grieving deeply or being incredibly active can be debilitating for sure, but it's only temporary. You may notice right away that if you really take the time and energy to go deeper, you unburden yourself from holding powerful feelings inside or staying stuck. This letting go is what enables you to move forward. And you can figure out for yourself what most helps you move ahead. Life can seem pretty bleak in the darkest depths, but if you keep going, muddling through your grief, you'll eventually see light at the end of the tunnel.
In contrast, habitually suppressing grief is far more debilitating and prevents you from moving through it. Suppressing grief silently cripples your strength, drains your energy, injures your health, and sabotages your happiness, because if you try to block the sadness, you also block the joy. When you suppress, you are suppressing all feelings, turning them inward, and increasing their power to control you. The more you try to avoid or repress grief, the more it runs your life, because every move you make has to keep you detached, tough, or in denial. You may find yourself turning to food, drugs, alcohol, or other addictions or dysfunctions. These are sure signs that your constant struggle to control grief has resulted in grief controlling you. But if you can let grief flow through you, you lessen its grip.
Grief is hard work but in the long run, grieving is far easier than avoiding it.
So, try to simplify your life so you can set aside time for yourself and your grieving process. Try to do this before you are forced to by some crisis such as failing health, disintegrating relationships, or marginal sanity. And over time, your sadness and longing will mellow, life will become more balanced, and you'll be able to move ahead into the future. Your life will never be the same, but you'll get to a point where you can let go of "what might have been." You'll never forget what happened, but you can accept that it did, and acquire a sense of peace.
These feelings of acceptance and peace are hallmarks of adapting, coming to terms with a difficult experience. In the beginning, you may feel like you'll never be able to accept this, much less feel at peace. But eventually, you can adjust and integrate this experience into your life. You can claim it and own it as a part of what makes you YOU. You can look back and say things like, "Before this happened, I was such a mouse. Now, I'll stand up to anybody to get what I need." Or, "I used to take so much for granted. Because of what we've been through, I can appreciate what is truly important." Or, "If I hadn't been through this, I wouldn't have the friendships, the job, the interests, the special joys that I so value now." Seeing the positives and finding treasure in adversity can be key to finding meaning and integrating this experience into your life.
You can acknowledge what you've lost, yet move forward with what you've gained.
Finding the positives is something you must do for yourself, when you are ready. This is something you can't rush, and try as they might, others cannot do it for you. When you are ready, you'll see the silver lining. It's there, waiting for you to discover it.
As you grieve, be kind to yourself. Cry every tear or plow through every field. Take all the time you need.