When I studied Clinical Psychology in school I didn't care about kids, childbirth, or parenting. So I took no courses in Development Psychology, the Family, or similar topics. I have

always realized that my brain has a limited capacity for learning, and I made conscious decisions to not study some things so that I could have room to learn what I needed to be successful. I think of my brain sometimes as a 2 quart bowl trying to catch information which is rushing past like popcorn flying out of a hot- air popper. There is much more popcorn than my bowl can hold, so in school I let the kernels of Child Psychology and Parenting fly past and hit the floor. This worked. I got my Ph.D. But my head was completely turned around when my son was born by emergency C- section at 30 weeks weighing 1200 grams. Being a Clinical Psychologist was of almost no use to me or my family as we tried to cope with our own emotional trauma. Like many of you parents we felt crazy with the stress we were feeling, and my wife, Lauren, and I did wierd, odd things. I threw much of my old popcorn into the garbage because Christopher's birth changed my life forever.

I gathered new, fresh, gourmet popcorn. I studied every thing I could find about high- risk birth, talked with lots of other parents, thought a lot about what my family went through, and wrote a book. I have learned that even though all parents of a high- risk baby feel crazy, almost all of us are not. Instead, we are feeling the emotional hurricane of incredible stress, and our crazy feelings are normal. These emotions feel lousy, but a high- risk parents' emotions are easily understood as normal stress reactions.

In a workshop later today I'll talk about the feelings of Terror, Grief, Impotence, and Anger in a family. My main message is that these crazy feelings are normal, and as parents we will life our lives best by accepting these feelings- - not trying to ignore them or get rid of them. This morning I will talk about some of the special difficulties parents face during an extended hospitalization. Again my message will be the same. The confusion and emotional upheaval of parents of the long- term NICU infant are easily understood as normal reactions to traumatic stress. And parents with extended tours of duty in the baby wars can be helped most by accepting the terrible reality of what has happened, rather than fighting its realization.

I speak from some ignorance about long- term hospitalization because my son, Christopher, was only hospitalized for 7 weeks. I realize that I share only some experiences with those of you who

have had many seasons in a hospital. My son never spent Christmas or a birthday in the hospital, and I have never suffered through a grade 3 bleed or rehospitalization. So in some of what I say

today I have relied on generous parents who have shared their experiences with me. If any of you feel I am missing anything or want to add something, please chime in during the question period

later. I also see several friends in the audience who are front- line, long- term veterans whom I hope will raise their hands to help if I am off base in what I'm saying.

All high- risk parents must first mourn the loss of giving birth to the perfect baby. I was supposed to have coached Lauren through a Lamaze birth that had little pain and complete

consciousness. We were supposed to be holding hands gazing at our wonderful 7 pound creation snuggled by Lauren's breasts. We somehow were owed some ecstasy. Well, as you know this American dream didn't come true. As Lauren's blood pressure went up from the toxemia, Christopher's heart rate dropped. Emergency C- sections weren't supposed to happen to us, only other people. Lauren was unconscious during delivery, and she was quite afraid she would never awake from the general anesthesia. I wasn't there. It took all of my control to sit in an empty room and pretend I wasn't shaking and urinating on myself.

We didn't get our dream, and we will never have it- - unless birth control fails. But we could slowly adjust to that emptiness. Missing out on the wonder and awe of childbirth became one of those acceptable losses because we had a second hope and dream which came true. We had a hope that Chris would live, come home around his due date, and be close to normal. I believe that

all high- risk parents have this second dream, whether it's realistic or not. And it's a damn tough dream to give up even when your baby has been in the NICU for 8 months with no discharge planned, and you've seen lots of other babies go home.

Ed Pacquette has used the term "DOING TIME" in the NICU when he wrote about his daughter's 150 day hospitalization. And I think that the feeling of being in a penitentiary with a life

sentence is one that is accurate for parents faced with long- term hospitalizations and no good news from the doctors. I'm going to refer to you as "LIFERS" during the rest of this talk. And the

tragedy of parents who accurately feel that they have been sentenced to life in the NICU, is that you're innocent of any crime. It is very easy to understand that parents feel crazy in these circumstances, but again I'll make the statement that these terrible feelings are normal and to be expected. It is the parent who floats through an experience like this without being apparently upset who is in real psychological trouble.

I am going to talk now about some of those extreme emotional reactions experienced by parents facing an extended hospitalization of their baby. As you listen I hope that you will

appreciate that these feelings are easily understandable. I would wish that you parents can use this understanding to more better accept your own terrible feelings. I also hope that the professionals can use this to better understand what the parents are going through, and assist us as we try to cope.

Most high- risk parents experience the roller coaster of emotions of the NICU where hopes rise and fall dramatically depending on weight changes of less than an ounce. During an extended hospitalization most lifer parents have had their hopes dashed repeatedly- - and that's very painful. While not entirely giving up hope for themselves or their baby, many lifer parents learn not to trust good news or encouragement. The motto becomes, "I'll believe it when I see it." For them the roller coaster becomes the pits, or a slow ride downhill.

Sometimes the medical staff sees these parents become despondent or depressed. The staff may wonder what's wrong with these parents. Don't they care any more about their baby. Well,

that's a mistaken judgment, as many parents would point out. It's just very normal for people to do what they can to avoid pain. I expect parents to insulate themselves from further suffering. The

sadness and lethargy also helps some of the parents to accept the terrible reality that their baby may be medically dependent for the rest of their lives.

Even though the roller coaster may become the slow downhill freight, the frustrations for the lifer parent do not get easier. There are constant reminders that some babies do go home from the

NICU. Accepting your baby's condition involves a series of bargains that are never easy. I can accept the loss of the dream of a perfect childbirth, as long as my baby can come home at term. I'll accept the ventilator as long as my baby can get better and doesn't go blind. I'll accept the risk of ECMO as long as my baby will live. I'll accept blindness as long as she can walk, and talk. Or I'll accept Cerebral Palsy as long as he can smile. This acceptance is very difficult, and it is never

complete. But giving up lost dreams and accepting what we have is necessary if we are to resume living our lives with any joy.

These normal frustrations snowball as weeks go by with no improvement in your baby or even a worsening of condition. When the physicians have tried every thing they can, and it hasn't worked- - you can expect two things to happen often. One, is that the parents perceive that the medical staff has given up on their baby. This impression may be totally wrong, or it may be

accurate; but it happens. If Baby Sam has been on the ventilator forever, one more attempt at weaning carries little hope, and Baby Sam stays on the ventilator. The medical staff appears to be

more interested in doing what they can to help the other babies who are getting better- - that's normal. And well meaning parents get more depressed and more frustrated- - that's normal, too. Then the second thing happens.

Some parents (perhaps many) ask themselves the big question again, and the think of a different answer. The big question is, "Why isn't my baby getting any better?" And the new answer is

that, "IT'S THE DOCTORS' FAULT". After all, we need to have explanations for what happens to us. And if I'm doing everything I can to help my baby, and my baby is not getting better- - someone must be to blame- - and that someone is usually the doctors or God. We'll talk about blaming God a bit later. But blaming the doctors is certainly understandable.

The opposite can also happen during an extended hospitalization. When the medical staff has done all that they can with no success, it is natural for them to ask themselves, Why hasn't Baby Sam gotten any better. And sometimes the answer is that,"IT'S THE PARENTS' FAULT". The mother is reinfecting the baby with her breast milk, the parents don't visit enough, the parents visit too much and get in the way, the parents haven't listened to us about handling Baby Sam and they overstimulate him repeatedly. Perceptions like these may be correct or they may be inaccurate, but they are very natural answers to the "Why" question.

I hope that you can see that a long- term hospitalization is a perfect setting for conflict between parents and the medical staff. In my previous life as a Clinical Psychologist I studied the causes and control of anger and aggression. What are the causes of anger and aggression? Pain, suffering, and frustration. What do lifer parents feel? Pain, suffering, and frustration. I am amazed sometimes that there aren't more explosions on the NICU. The setting is an natural.

What can be done about angry parents. Unfortunately, there is not a great deal that parents can do for themselves. Parents are much more angry than they ever show, and it is almost impossible

for parents to make good judgments about when showing anger will have a beneficial effect. (And we are quick to learn that getting mad will mean that we get written about in the charts. Did you

hear what Mr. Hynan did last night? Hm., let's write up a referral to the Social Worker). Sharing angry feelings in parent groups can help when parents realize that they are not alone in how they feel, but there is a danger here. Sometimes, sharing angry feelings can turn into ganging up on Dr. Cold Fish or Nurse Never Cares. This never helps, so I suggest that parent group leaders take care to shift the discussion away from beating up on the doctors and nurses.

There is also a nice way to train the NICU staff to respond to angry parents without getting freaked out. Find someone in your hospital or medical school who knows about stress

inoculation training. This person could be a social worker, psychologist, or psychiatrist. Stress inoculation for anger involves role playing and practicing listening to someone who is angry. During an in- service the trainer would take turns yelling very reasonable complaints at each staff member (neonatologists included, because sometimes parents yell at God, too). This training helps to minimize the usual frightened reaction people have when they are yelled at. And in being less frightened and threatened, the staff members can better hear any legitimate complaints. The trainer can also provide coaching to help the staff members keep open the lines of communication. If you feel that your staff may be reluctant to have this training, remember that time spent in training may time you don't have to spend with attorneys.

So, how do Lifer parents ever come to the kind of self- acceptance that lets them pick up the terrible hand of cards that life has dealt them and go on? Only with extreme difficulty! I wish to warn you that when I talk about self- acceptance and acceptance of the reality of your high- risk baby, it sounds much easier than it really is. It is incredibly difficult to give up our ideal of how our life is supposed to be. For many months after Christopher was home and doing beautifully, I was still very afraid that he would die. I woke up repeatedly at night hallucinating that he was crying, and then I got angry at myself for waking up especially since I was exhausted from doing 4 am feedings. The more I tried to control and suppress my fear, the more control it had over me. I'm the Clinical Psychologist; I should be able to heal myself of this crazyness- - but I couldn't.

It took a few visits from me to see a therapist before I could begin to accept my fear. My fear still comes back many years later, but it no longer controls me and I kind of expect it now- - like an old acquaintance.

The very way parents have to act to survive a high- risk birth makes acceptance difficult. During a high- risk birth parents and professionals tend to focus on one thing at a time. A month of bedrest, an emergency C- section, Apgar scores, intubation, mom gets discharged from the hospital, trips to the NICU, lost 20 grams yesterday, blood gasses, IV in the scalp now, extabation, the breast pump broke, gavage, room air, gained 10 grams, gained 40 grams, discharge planning, coming home, apnea monitors, 4 hour feedings, 5 hour feedings- - well you all know the story.

Even Parent Care conferences tend to focus on one topic at a time. Advances in Neonatology, living with multiples, looking to the next pregnancy, grieving, home respirator care, dealing with

grandparents and siblings, developmental interventions, staff burnout. It is very natural for us to look at the pieces one at a time, but often we lose sight of the big picture. I think of the big picture in terms of the question, "Why are we having babies, anyway?" That's a tough question. The answers are sometimes unknown and they differ for different people. But we often forget

about that question as we deal with a high- risk birth one step at a time.

There were many reasons Lauren and I decided to have a baby. As all of you know people who have children have no idea of what they are getting themselves into. But somewhat naively we had the idea that a baby would bring more love to our family. With this in mind; the overall health of the family is most important, and any one member is only one member.

I'd like to give you a couple of examples of another way I approach thinking about this problem. The first comes from a newspaper article I recently read. It is called, "Mother of quads

offers some advice." It is an interview with a veteran mother giving advice to the mother and father of test- tube quintuplets who were born in Michigan.

"Four of Gayle Methuven's seven children had the flu Tuesday,

and the family's new puppy was chewing on her foot, but Methuven

still found time to offer a little advice to the parents of

Michigan's quintuplets. Methuven...is the mother of

quadruplets...born 21 months ago."

"'First of all,' she said, 'Adhere to the pain cries only....If

you can't get used to the crying, well, good luck.'

'Schedules are a must when they're infants. Feeding, bathing,

diapering, potty. Feeding, bathing, diapering, potty. Feeding,

bathing, diapering, potty. We had it literally written out. You

can't keep it in your head. I can't imagine what it would be like

with one more than what I've got.'

'The husband is a must. He most definitely has to chip in and

help. I got that in capital letters....Norm, he starts work at 6

in the morning and he's out at 2, and that was a real blessing. I

looked forward to when he walked in the door.'

'And then I had my own routine in feeding four babies at one

time,' she said. 'I guess what I'd do with the fifth baby, well,

I wouldn't have the coffee and the magazine in the one hand. One

hand was for one bottle, then I used my ankles and thighs to prop

the bottles for the others. I had the one hand free, but I guess

she won't be able to do that with the five. I don't know how

she'll burp, either.'"

And the article concludes with almost an afterthought.

"'Another thing is to keep the marriage alive. If it is at all

possible, they need to get away...to keep their sanity- and their

marriage.'"

My second example comes from friends of mine. I dedicated my book to "Joey, Rachel, the other unfortunate children, and their parents". Joey and Rachel were a brother and sister who never knew each other. They both died in the first year of their life from a rare genetic disorder. Their parents are my friends, Mark and Cathy we'll call them. They didn't know anything was wrong until Joey was about 3 months old. After he died, Mark bravely told me that they would chance the odds again; and if that didn't work out maybe even try again.

Then Cathy got pregnant again, and had a miscarriage. And a year later Cathy gave birth to Rachel- - who looked so different when she was born. But Rachel wasn't different. You all know of

similar stories, parents concentrating on one step at a time- - learning about respirators and monitors, in and out of hospitals, and grieving over lost dreams.

Well Cathy and Mark divorced a long time ago, and I asked Mark why he thought they split up. He said, "Mike, by the time Rachel had died we hadn't talked about anything together or done

anything together unless it involved Joey and Rachel. When they were gone so were our connections. We became two individuals pouring our energy into caring for our babies. We hadn't been a couple for a long time."

It is tragic to me that many of us have babies to add love to our marriages, yet having high- risk babies often detracts from that love. With the best of intentions we focus on the best care for our babies- - and forget about our families (and the reason we had a baby in the first place). I think that it is very difficult to step back and look at the big picture. We don't think to ask ourselves, "Why am I doing this." But in the long run I believe that a high- risk birth needs to be put in the perspective of what a family wants out of their short time on this planet. And if you want your family to become primary, then the baby becomes only one member of the family.

So I want to suggest to you that part of caring for parents may involve encouraging them to step back and realize that perhaps sometime their baby should stop being the main focus of

their lives. Let's look at the big picture and remind each other to think about why we are doing all of this anyway.

Thank you.