"You cannot live a perfect day
without doing something for someone
who will never be able to repay you."
- John Wooden
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Part Two of Understanding Preemie Parents builds on the information learned in Part One about the normal emotional reactions of a preemie parent. It helps people avoid the many pitfalls that most people fall in when trying to help a parent of a preemie. This information can help improve the way words and reactions are offered to preemie parents, which eases the trauma of the whole experience for everyone.
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What can I specifically do for the parent?
Adjust your expectations.
When a premature baby is born, expectations of everyone involved must be adjusted. If they are not, misunderstandings and hurt feelings can occur in everyone. Adjust your expectations of the parents. Accept that they will each react and cope differently, and you cannot judge what way is right and what way is wrong.
Adjust your expectations of the parents' needs.
Expect them to have a need for privacy. Respect their boundaries and acknowledge these boundaries are temporary. Forming boundaries is often a reaction to danger, done for self-protection. The parents are "protecting" their family and their feelings during this most fragile time.
Once the situation improves, parents will most likely wish to include you more. (Improvement can mean when the baby is close to discharge, or finally home, or after they are settled in at home.) Be patient and take their cues. Respect that their timetable will probably not move as quickly as you wish or expect.
Adjust your expectation of your "rights".
Since you are not the parent, you are not responsible for making any decisions regarding the baby, nor are you responsible for adding input. Parents do not owe explanations for their behavior or decisions, no matter how this isolation might make others feel.
When the baby was born, no one but the parents was given unconditional rights to the baby and his medical information. As a friend and/ or family member, your interaction with the baby is valued, BUT you are not automatically entitled to visitation priviledges. These things are priviledges that the parents grant you, according to their own adjustment, condition, needs and emotions at that specific time as well as the baby's current needs and condition. Do not view their "exclusions" or "limitations" as personal. They are merely temporary boundaries they have set for now (not always). The parents expect everyone to respect their boundaries around their baby and their lives, no matter how they make others feel.
Remember, in your own life you choose when and how to share your personal parts with your friends and family - you too have boundaries. Give parents respect for theirs.
Refrain from advising or judging on a spouse's reactions.
Refrain from judging any reaction from either parent. Just as there is no one "right" way to grieve a death, their is no one "right" way to cope with a premature birth. Each person must find the way that suits their needs, no matter how strange or odd it may seem to another person.
In addition, a parent may act in ways very abnormal for them. They may have bursts of anger or say hurtful things to loved ones that they don't really mean. These things are triggered by stress and are not necessarily a true reflection of their feelings or character.
Revise your role in relation to the baby.
You will have plenty of time to play the grandparent, aunt or uncle. Right now, let the family place the formation of their role as parents as the primary importance. Give the parents time to adjust to this without adding the task of incorporating your role with the baby into their lives, as well. Step aside with the formation of your role until the parents are better established with their own adjustments.
Separate your own feelings and deal with them privately if necessary.
If you are a close friend or family member, you are probably experiencing some of the same emotions that the parents are feeling. It can be hard to separate how you feel from the parents or "hide" it from them. But when you are with the parent, you may need to adjust your reactions and watch closely what and how you say certain things. Offering this type of respect is similar to watching what you would say to any other friend during a time of trauma, such as death. A preterm birth is a time of trauma and great stress.
Encourage the parents to communicate by offering them a safe outlet for their emotions.
Let them speak and share what they feel without fear of judgment or criticism. Allow them to talk without encouraging them to change or alter their feelings in any way or means. Do not tell them a feeling or thought is silly. And even though their thoughts may seem strange or excessive, they are normal reactions that almost all parents feel after a preemie birth. Their feelings are normal, expected and important. Reinforce this and offer yourself as a safe, comforting, empathetic ear. Reassure them that you will accept whatever they share with you without judging in any way.
Understand there is not an instant cure for healing the pain of a parents' emotions.
Much as it would seem to help, neither the you, nor the parent can make these emotional feelings disappear with some "cure". Telling a parent to "get over" the feelings or get on with life only makes them feel as if their emotions have no value. It increases their sense of misunderstanding and alienation.
It will be some time before they can "get over" these feelings, usually many long months before they resolve most of the issues. Give them the time to work through everything they feel and allow the parent to work at their own speed in efforts to find peace.
Offer empathy instead of a solution.
The solution to the entire problem would be for their child to return to the womb, wait out the pregnancy and be born full term and healthy. Obviously, this is not feasible.
Refrain from attempting to offer "solutions" such as these: your baby will grow and you will forget all about this, or she will be home soon and things will be normal then, or just wait until your hormones work themselves out. These "solutions" and others can not and do not solve the problem of having given birth prematurely to a less than healthy baby. It only attempts to lessen the emotional impact of having a preemie.
Instead of solutions, try offering empathy and support. It may help to offer something along the lines of "I can understand why you would feel that way, with all that you and your baby have gone through". Or a simple "I can't imagine how difficult this is for you and I wish there was some way I could help you" is may be all they want to hear.
Communicate that you value all of their feelings, wishes, and emotions.
As odd or absurd as they may sound at the time, never discount a thought the parent shares with you. This is the best way to encourage parents to feel safe talking with you and to offer them support. Show them you value their emotions by reinforcing how you understand the normalcy of their reactions and empathize with their situation. While you may not be able to fully grasp what they are telling you, nor totally understand why they are feeling a certain way, you can offer empathy. This also help them feel connected to others.
Keep up communication, but take the parents' lead on how, what and when to share.
It is important to keep the lines of communication open and share your concerns and worries, but
not to add undue stress to the parents or contribute to, instead of ease, their emotional burden. This means waiting for the parents to address a concern you have instead of bringing it up yourself. This also means accepting graciously what information the parents do choose to offer without asking for more details, or questioning reasons behind their choices, or enacting what if scenarios. These things do increases doubt, fears and double guessing. They do not lend support.
Expect a parents' mind to stay primarily on the NICU and their baby.
Parents are often lost in thought and feelings. They might endure periods of silence, where they seem totally unaware of what is happening around them. They may seem distant quite often. They may try to participate in a conversation, and totally lose track of what is being said. When they catch themselves doing this, they may feel embarrassed or upset. They may start a thought and not be able to finish. They may run from one topic to the next without any pattern. They may repeat certain stories about the birth or baby over and over. They may feel as if they are losing their mind when they do any of these things.
All these things are common reactions to stress. Help them through this. Respond to their worries and their concerns. Do not be offended when they wish to sit in silence. Do not feel the need to make
small talk unrelated to the baby. Let them talk as much as they want about a subject. If often takes rehashing it over and over to come to a resolution.
Do not add extra fears to the parents' stress.
Do not bring up implications of the birth if the parent has yet to mention it. Refrain from
discussing the possibility of poor outcomes and of setbacks, until the parents so choose.
(Examples: development, complications, death.) It is not that they are denying these things, more likely it may just be that they do not want to discuss it openly with you because they are not ready to do so.
Place primary importance on the effects the parents are feeling.
If you are dealing with your own feelings about the birth and baby (especially common if you are a grandparent, aunt or uncle), be sure not to place greater importance on how you are feeling. Do not superimpose how the baby has affected you over how it has affected the parents. The baby has affected its parents' lives more than anyone.
Abstain from unknowingly adding to the parents' grief.
Watch that your comments do not add to feelings of guilt or failure. (Avoid: Didn' t you know this was happening? Whose fault is this? I can't stand to see him in so much pain!)
Help restore some feelings of normalcy.
Acknowledge the baby's birth and treat it as normally as possible. Watch that you do not treat the baby as abnormal. Find something to admire about the baby when you see it or a picture. (Avoid: Why is she so tiny? Does she have all her body parts? I don't know if I could hold a baby like him.) Lavish the attention and gifts that you would if the baby had been fullterm. Lend congratulations
to both parents. Hug them. Tell them you can't wait to meet the baby.
Acknowledge the great difficulty of a preterm birth. Realize that parents are facing many challenges and worries and have not even had time to relax or recover from childbirth. Do not minimize the stress and struggle of the pregnancy, the delivery or the NICU. (Avoid: Gee, I bet it's nice to have the nights to yourself. You are lucky you didn't have to go through the end of pregnancy. I wish I had nights full of sleep when I had a baby. With such a small baby, I bet your delivery was a cinch!)
Accept the parents fears and worries without feeling the need to compare them.
Offer compassion and empathy. Try not to compare it to the worry you feel for your own
children when they are sick. It is very different, for many reasons. They have never had the luxury of
worry-free time with this baby. Often the concerns surrounding a preemie are much greater than those parents usually endure with sick children. There are life long implications from prematurity - it is not life an illness you recover from.
Accept and acknowledge the parents feelings of love and pride for their baby.
Understand that parents still have the normal feelings towards their baby. The love him. They
admire his qualities. They bond with him. They want to brag about his achievements. The baby
is their child, not a doll to cuddle nor a distant relative to occasionally visit.
Treat the baby with the respect you would give a newborn.
Do not compare the baby in size or actions to dolls or animals. While photos are and can be shocking to others, do not add to the shock the parents see on your face with statements of pity or grief for the baby. Find some positive comment to share when proud parents show you photos and videos. Hold back tears or gasps for when you have left the parents' company. Encourage them talk about how much love they feel, the deep affection and how they are bonding. It helps you to see this baby as a valued and very important individual. (Avoid: How can you bond with him whiile he is away from you? Do you spend each day with the baby? What do you do with him since he is in the NICU? She cries kinda like a small mouse!)
Try to understand the time pressures.
Call and check up regularly on the parents and baby, but understand they may not have the time, energy or desire to talk long or call back at all. Do not expect them to hold up previous commitments, even family get-togethers, such as holiday get-togethers. Their primary focus is nurturing their baby, whether it is home or not. Their secondary focus is keeping themselves together. Help them do both by letting them know you accept being lower on the priority list.
Respect the parents' need for privacy.
Take the lead of the parents when deciding how much to become involved with the baby. They may not be able to have visitors to the NICU (regulations), or they may not want them at certain
times. Respect that parents need time to bond with the baby alone, and time to adjust to
everything. Understand that some days are better than others for visits, even from close friends and family members. This is most true when it has been an especially trying and upsetting day for the parent. Accept that they may need time to themselves to resolve what is happening or they may just wish for some privacy to sit and cry.
Help out...
with housework, other children, cooking, driving to the hospital, yardwork, pets, shopping, errands, etc., so that parents can spend as much time with the baby. Help organize others to help.
Put other problems and obligations aside.
Help the parents to put their needs and their baby's needs first. Now is not the time to bring up
past grievances or present disagreements. It is not the time to share that you are feeling left out or isolated from visiting or information on the baby. It is not the time to begin competing for the role of top grandparent. The parents only concern should be for their baby's healing. Focusing on your own needs and wants only distracts them from their duty. This means they may not be able to attend family or work functions at this time, too. Do not press them to do so. It forces them to take an already limited amount of time away from the baby and may leave them feeling incredibly guilty.
Don't abandon the parents!
While the time crunches and pressures of the NICU take its toll on relationships and friendships,
accept that this is a temporary condition. Do not be offended when the parent doesn't respond to
phone calls and visits. They will when they can, which sometimes is weeks away. Often when
the baby gets better and comes home, the parents will have more time for communication. Until
then, don't forget to keep up with them. They need to feel your continued support and love even when they do not have time to acknowledge it. Things that especially appreciated...prepared dinners,
thoughtful cards, small baby gifts, encouraging messages on their answering machine, decorating
the house when discharge time arrives.
Rise to the occasion when they need you.
Often those same parents who you thought were in "hiding" will call when the tough really hits and they need your support. Offer company, prayer, compassion at these times. This is when they need you the most. Don't allow their prior lack of communication to affect the support you offer them now. Remember, it's not that they are shutting people out, it's that prematurity and the NICU have shut them in.
What if I still make a mistake?
Relax. The parents understand that not everyone can do the "right thing" 100% of the time. Talk
with them. Explain your intentions - you merely wanted to help and be supportive, even if it was the ideal way to do so. Then listen to what they tell
you. You may be surprised to know how they reacted to you, and also surprised to know that
they forgive you. They may even have some suggestions that make all this easier on everyone. Preterm birth provides family and friends with opportunities for growth, understanding and experience, not just parents! We all learn from it if we allow it!
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