"I wanted a perfect ending. Now I've learned the hard way that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity."
-Gilda Radner
Becoming the parent to a special needs baby is a traumatic experience, especially when it comes unexpectedly! You are filled with shock from the early ending to your pregnancy and the surprise delivery, a situation which in itself can be very scary! Not only will you have to recover from childbirth, adjust to a new baby, but you must also come to terms with having a hospitalized premature baby. No wonder you feel so overwhelmed!
It is normal to go through a whole bag full of emotions immediately following the birth of your preemie, during their hospital stay, and often throughout their first years. Don’t be surprised if you find it hard to adjust to the idea that you are not only a parent, but the parent to a baby who needs intensive care.
The following list describes many of the typical emotions that most preemie parents deal with after the birth of their baby. By no means does this imply you will experience only these feelings, or that you will experience each one of them, within a prearranged cycle or time period. Many times parents feel a few of these emotions intensely and alternately, during various times after the birth. Then they may fade away or resolve, and parents will deal with several of the other, "new" feelings. It is not uncommon, though, to experience all these things at once. It is not ususual either for many of these feelings to resurface at a later date, often when something "triggers" a remembrance of that time (like a birthday or NICU reunion).
Some of the feelings may not even surface until months after the birth and some a parent may not ever experience. Basically, there is no "bible" that will tell how, what or when a parent will feel certain things. The only certainty is that their feelings are a normal and expected reaction to preterm birth.
THE LIST OF NORMAL FEELINGS THAT A PARENT OF A PREEMIE MAY FEEL
Acceptance (To accomodate or reconcile oneself to the situation.) Acceptance of the NICU, having given birth prematurely, and having a sick baby all come with time. Normally, it is hard to come to terms with accepting the loss of a very important dream. Learning to accept the losses you have endured will take time, weeks, months and possibly even years. You may learn to accept some parts of the preterm delivery more easily and faster than others.
Anger. (A strong feeling aroused by injury, injustice, or wrong.) You may feel angry at the loss of your pregnancy, the loss of a normal birth experience, the loss of a normal newborn, the lack of "fairness" in the whole situation.
You may feel angry at the loss of control of your life (over your body, your feelings, your baby and your family life), the hospital staff (for telling you what you can do, telling you bad things that are happening with your baby), your spouse ( for not understanding you, for blaming you, for being able to adjust and cope as you wish), your parents and in-laws (for their reactions and feelings). You may feel anger at yourself because in some way you believe you caused this to happen. You may feel anger at your doctor or hospital, who didn't prevent the preterm delivery. It is even normal to feel anger at your baby at times (which makes your feel even more angry at yourself).
Anger is a normal response to a traumatic situation where you lose a great deal of control over your life and feel like your have suffered a great injustice. Anger is totally normal and to be expected.
Talking about your anger with close friends will help. Writing about your anger in a journal can also help to pinpoint what your anger centers on. Telling the medical team what angers you will help them to help you. Anger will subside as you regain control and adjust to the reality of your early baby.
Anguish (Excruciating or acute pain, suffering or distress.) Watching your baby undergo treatments and suffering may fill you with anguish. This pain can reach inside of you like no other, leaving you numb and hurting. Anguish tends to worsen when there is nothing you or others can do to ease your baby's pain.
Ashamed (Feeling shame or embarrassment caused by the emotions of guilt, disapproval or disgrace.) It is normal for a preemie parent to feel ashamed of what has happened. With such a large emphasis being wrongly placed on parents causing the preterm delivery through drug or alcohol use or some other oversight, parents might feel ashamed to share the news of their preemie in fear of being charged as "guilty". They also may feel ashamed of their "failure" in the capacity to carry a pregnancy to term and produce a healthy, normal baby. A mother may fear she is a disgrace to her spouse or family because of this.
It helps to ease the guilt and disapproval that parents feel so that they are not ashamed of their situation.
Blame (see Guilt)(To place the responsibility for a fault on a person.)
Controlled (The situation of being under the regulation or command of another.) Because of the number of restrictions and regulations in place in the NICU, a parent may often feel controlled. They feel controlled over when and where they can visit their baby, how they can interact with him, and what they can do. Many times parents do not understand why these restrictions are in place, and they begin to feel angry at the medical staff. It can help to teach the parents not only why the restrictions are in place, but also how they can become more involved. However, there will probably continue to be feelings of being controlled on the parents' part, even when they do understand the "why's". Often this "control" is so frustrating because it leaves the parents feeling helpless to assist or "save" their baby.
Criticized (To make judgements as to merits and faults.) Most preemie parents feel criticized at one time or another. They may feel criticized for how they are handling the situation. They may feel criticized for their behavior or feelings. They may feel criticized for their parenting skills. They may even find their needs and wants criticized as abnormal. It is vital to the parents' well-being that all judgement on their actions, feelings, words, and wishes be sustained. They are dealing with an extremely traumatic time that is filled with pain and stress.
Crushed (To overwhelm or squelch.) Dealing with the arrival of a less than healthy, less than perfect baby can leave even the strongest parent crushed. They may feel their dreams have been destroyed, even if only temporarily. Once the parents begin to grieve their losses, they are apt to feel a little less crushed, although they may still feel intense pain.
Denial (Refusal to believe in the existence or reality of a thing.) Many times preterm birth occurs quickly, unexpectedly, in an emergency situation. Once the delivery has ended, a parent may deny what happen. They may still want to believe they are pregnant, or that the baby was delivered healthy and strong. They may deny that their baby is very sick and requires extensive help. They may deny the possibility of further complications or even death. It may take several days for reality to sink in, and denial to subside. This is not unusual.
Depression (A condition of general emotional dejection and withdrawal, sadness greater and more prolonged than that warranted by any objective reason.) Many times parents of preemies find themselves depressed about the entire preemie situation. They experience sadness and gloominess about their losses, their grief and their future. Depression is a normal reaction to preterm birth. Post-partum depression is also a normal part of delivery. For several weeks, a mothers' hormones are out of kilter and the "baby blues" can be triggered by this. However, prolonged and severe depression can signal other problems that need professional evaluation by a doctor or therapist. Read further about post partum depression and depression in Depression
Determined (Unwaveringly resolved.) Parents may become very determined in their efforts with their NICU baby. They may become very determined in such things as visiting the baby as much as possible or expressing breastmilk. Becoming determined to be involved is a means to regain some control over the situation.
Disappointment (Feeling as is if the wishes or expectations of a person are not fulfilled.) When a pregnancy ends before its time, and a delivery does not go as planned, and the baby's condition is not as it was wished, parents face disappointment. Their dreams and hopes are not longer possible and their expectations have been derailed. They are suffering from many losses. It is normal to be disappointed after a preterm birth because the parents "missed out" on having their hopes fulfilled. Parents must work through disappointment at their own speed. Also, having something "good" happen is not likely to "make up" for the disappointment they feel.
Disbelief
Discouraged
Disgust
Doubtful
Embarrassed
Envious
Excluded
Failure
Fear/Terror. Fear of the unknown, fear of losing their baby, fear of a disability, fear about becoming parents before you are ready. You may fear what is going to happen years down the road. You may even fear what others will think and say when you tell about your new baby. Fear is a normal reaction to such the scary and frightening ordeal of emergency, premature birth. Fear will resolve with information and knowledge, although you may tend to be fearful in during other times as your baby progress - follow-up appointments, future pregnancies, etc.
When you experience a great deal of fear regarding your baby's health once they have come home and are doing well, you may be suffering from the "Vulnerable Child Syndrome". This is commom among parents of preemies - they continue to constantly fear for the health and even life of their baby long after these fears are valid concerns. Talking to a therapist and your baby's pediatrician can help resolve this kind of fear.
Guilt/ Blame. Many parents find themselves going over and over the pregnancy, looking for something that caused this premature birth. You may blame yourself for your baby’s condition. You
may blame your body for letting your down. You may feel guilty for not being able to give your child the start in life you had intended. It takes time for the guilt to subside as you come to realize that these things just happen and, usually, it is nobody’s fault. Read Guilt for help on this emotion.
Hopeful
Hurt
Intimidated
Not only can it be physically difficult to parent in the nursery, with all the machines, wires, and people, but it can be intimidating as well. You may feel less skilled than the nurses at caring for your baby. You may feel as if you have to ask permission every time you wish to do something. When you first visit your baby you may feel as if the nurses, doctors, and other parents are all watching what you do. It is hard to feel such a loss of privacy during such a private time in your life. Do not be afraid to express your emotions to the nurses, or even cry. Most parents go through these feelings at one time or another when their baby is hospitalized, and the medical staff all understand you are dealing with a very difficult situation. You may be scared to ask questions, because you may be negatively labeled by the staff. While these feelings are valid and real, know that the hospital’s goal is to help your baby get well, and help you gain confidence in caring for your baby. Do not be intimidated by your lack of knowledge - everyone was once a first-timer! They all had to learn at some time or another!
Isolation. When you give birth prematurely, you tend to spend lots of time not only recovering, but in the hospital visiting your baby. Not only do you become physically isolated from your friends and family, but because most people do not understand what having a preemie involves, you may find yourself isolated emotionally as well.
You may find yourself easily angered at insensitive comments made about your baby and the pregnancy. This, too, is normal. To help friends and family understand all that is happening, you will be called upon to "teach" them about the world of preemies. This is not an easy task and often your information does not mesh with prior misconceptions they hold about the NICU and preemies. When this happens, you become even more frustrated as they negate your information.
To counter isolation, find people who understand what you are dealing with. Some friends are able to "stretch" and grasp what you are feeling. Support groups at the NICU, other parents and graduate parents can all ease your sense of isolation. Your nurses are also a great source of support during times of isolation. Your partner or spouse also understands and needs to talk to overcome their own sense of isolation.
For help in dealing with people who cannot understand what is happening or how you are feeling, see A Home for Your Thoughts .
Jealous
Jittery
Joyous
Judged
Loss. Parents grieve many losses when they have a premature baby. They lost the end to a pregnancy, the chance to celebrate a new birth, the opportunity to go through a healthy delivery and bond immediately with the newborn. They have lost contact and understanding with friends. They have lost control over their life. Most importantly, they have lost a very important dream, one that carries much significance and touches every facet of their life. The pain of that is very real and takes time to heal. Give yourself that time to recover from your experience. Read Holland for help.
Misunderstood
Nervous
Powerlessness/Impotence. When you find yourself in a strange and unfamiliar environment, with new people telling you what your can and cannot do, you can feel very powerless. To add to that feeling, you might not be able to take part in very much care of your baby for the time being. If you talk about these feelings with your baby’s nurse, she can help find ways for your to be involved. Soon you will find yourself feeling very confident in these surroundings.
Overwhelmed
Pressured
Protective
Resigned
Sad
Scared
It is normal and natural to have fears about your baby. It is absolutely normal to fear they may die. It is also normal to be scared of talking about this fear. This fear can keep you from feeling very attached, or bonded, with your baby. If you feel this way, please talk with a nurse, family care coordinator, social worker, or chaplain. It will take time for the fear of death to ease up and disappear, but the nurses and social workers are there to help you if you are feeing this way. It is important for both you and your baby to form a loving attachment with each other, even though they may be very sick.
Shocked
Sickened
Stressed
Surprised
Unimportant
You may feel that the nurses get to spend more time with your baby than you do. Know that while you feel uncomfortable now, these feelings will go away. Spending time with your baby will help ease these fears, as will talking with the nurses about your feelings.
Unsure
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