SUPPORTING PARENTS
By: Becky Hatfield

I appreciate being asked to speak to you today. I wished that I did not have to follow Helen... she is not an easy act to follow. I also want you, as an audience, to know how much I admire Helen Harrison. She has become one of our country’s foremost advocates for preemies and their parents. I publicly want to thank her for her work and dedication.
I feel that all of us here today are making history. Only one other time have I felt the “magic” that I feel today. It was 1984, in SLC on October 11 th-13th. That was when Parent Care met as a group for the first time at the Hotel Utah. What we have here today in Cobo Hall in Detroit Michigan is just as extraordinary. I hope you all feel it, take it home with you and that you will remember today for years to come.
I would like you to know why I am here. Some of you already know me. For those who do not, I am the parent support specialist at the University of Utah Hospital in Salt Lake City, Utah, USA. I have the opportunity of working with families experiencing high risk pregnancy or those families having a baby born critically ill requiring care in our NCU. I co-ordinate the parent support group and work closely with the perinatal staff of our Hospital. I have been doing this for a long time. Parent to Parent was the first support group of it’s kind in the United States. We started in early 1975. At that time I was a volunteer. Parent support is not just a job for me. It is a passion. There are three reasons for that passion and my reasons for being here. Alison, Rachel, and Grier, my children. On August 12 th 1974, my husband Gary and I were becoming parents for the first time. Water had broken and labor had started; 12 weeks early. We were very confused and frightened. There had been no prenatal classes to prepare for the much anticipated natural childbirth; there had been no time. I was not far enough along in the pregnancy. I did not know what to do, and I was very frightened about labor. Gary did not know how to help me, but he was allowed to be there and that was important to me and to Gary, because not too many years ago, fathers were not allowed in the delivery room during a premature birth.
August 14 th, 36 very terrifying hours after arriving at the hospital. I had been given drugs, first to stop labor, and then in induce it because of decelerations in the baby’s heart rate. It’s 9:36 AM. A girl. She did not cry. I will never forget how Gary gently squoze my hand and brushed the hair off of my forehead, and together we cried. I didn’t get to hold my baby. We didn’t get to talk about whose nose she had, or count her fingers and toes. Gary didn’t get to carry her to the nursery. She was rushed away from us at birth, by strangers. The Doctors and Nurses just shook their heads. We had no chance to get to know the little person who had just entered our world. We assumed she was being cared for... but se weren’t there. W could not care for her and I felt as if I had abandoned her. Sad feelings for what we had anticipated as one of the most joyous occasions of our lives together.
There were no cigars and no flowers delivered. No one sent congratulatory notes. There were not baby gifts. There was no celebration. Phone calls were few, and those who did call didn’t know what to say.
Our baby was transferred to the Newborn ICU at the University of Utah Hospital in Salt Lake City, Utah. When the Doctors said that the transport team was there and going to take our baby the University, I decided that she must already be dead, because I did not know what an NICU was. 23 years ago there were no pictures of preemies on telethons, in magazines, or on 20-20. I thought that they were taking her away to do experiments on her, because I knew they did a lot of research at the University of Utah.. We were then able to see her in the transport isolette. I could not touch or hold her, but I did see that she was alive and the Doctor from the NICU explained where they were taking her and that they would all they could to save her life.
This was not the way it was supposed to be. Gary was running from one Hospital to another trying to tell me what was going on... dealing with the questions from family and friends and holding down a job... we had to have that insurance,... not much for him to deal with huh?... I, in contrast, sat quite alone and empty, in my hospital room, listening to the other mothers with their new healthy babies.
After 98 roller coaster ride days in NICU, my first baby, Alison, came home with us. She is still quite medically fragile, but bad lungs are something we can death with. We are so fortunate that she can walk, talk, and smile. She is 23, 24 next month, and has just received her Nursing degree. She will be married on September 16 th. She is a miracle, and I thank God for her life every day. After her birth, I was anxious to help start our support group at the University of Utah Hospital. I hoped, that no one would ever have to feel as alone as we felt when going through the NICU.
My second child, Rachel, now 21 was also a high risk pregnancy. We were terrified again, when I went into labor at exactly 27.5 weeks, the same day as I delivered Alison. We then spent 12 weeks in bed, not daring to do anything I shouldn’t because I didn’t want to see the NICU as a parent again. It felt wonderful, when after her term delivery, I got to hold her, and believe me I did count her fingers and toes. I realized how different and incredible it was having a full term healthy baby. It was a day of celebration.
Our third child, a son, Grier, now 16 and 6 ft.2 inches tall was also a challenge in getting here. I began bleeding and contracting at 7 weeks, not yet a confirmed pregnancy. I was told that the only person that could do anything for this baby at this time was me. if I stayed down and took it easy I may be able to carry this baby a ways longer... not having much hope of a live birth. I spent the next 29 weeks on bedrest, my water broke and we delivered Grier at 34 weeks, thinking that every would be okay.. it’s 34 weeks! Lungs collapsing, intubation and an air transport to the University of Utah Hospital... and it’s funny because this time I was relieved... knowing that he was where they could care for him. I felt ike a failure as a woman, a wife and a mother, because after all of that time on bedrest - 203 days - I had failed everyone again. We took Grier home after 21 days in NICU. I felt like the luckiest woman in the world. I still feel that way, and I guess I am...

My assignment for this time period is Parent Support. I would like to begin
with a definition of support. It is taken from Websters New World Dictionary.
Support means: 1. To carry the weight of; hold up 2. To encourage; help 3. To advocate; uphold 4. To maintain (a person institution, etc.) with money or subsistence 5. To help prove, vindicate, etc. 6. To bear; endure


When a family is experiencing a high risk pregnancy and birth, there are many kinds of support available. Please know that I may have left off some support people, unintentionally, the list is virtually endless, but these are some that I thought of...
  1. Support from family - parents, siblings, grandparents
  2. Support from friends, neighbors
  3. Support from Medical staff, your Doctors, nurses, practitioners
  4. Support from clergy/church
  5. Support from specialized professionals; psychologists, therapists
  6. Support from educational materials, books, videos, television the Internet ...
Last but not least...
  1. Support from parents who have been there... parent support groups


We heard in the last session, and we know from personal experience, the extreme emotional impact having a baby born critically ill can have on a family. I am not going to go into that. My task is support. I would like to focus on parent support groups. In the last 20 plus years the emergence of such groups as my own group Parent to Parent, Preemie-l, the Alexis Foundation... I could take all my time to just list the groups, but their existence attests to the fact the parents helping parents does make a difference in the difficult, painful NICU journey.
I would like to acknowledge and thank the members of preemie-l and my support group members that shared their feelings about support with me. I asked for input. How people feel about parent support. Reasons why parent support is important. I asked for specifics as to why support groups are important, how support groups helped in the NICU course and why parents got involved. I will not mentions specific names simply because most responses were duplicated several times. But again, I thank all who did respond, for your time and your input. It was very helpful.


Why Support Parents
The point of this talk to stress that support is essential in the NICU. It doesn’t matter where that support comes from. All families have different needs. That is what must be realized. Just as every baby has a different care plan, so should every set of parents.
For many new parents in NICU, traditional family support systems are sufficient and very comfortable. These families are fortunate. If you have a good relationship with your parents, grandparents, and siblings, and feel that they truly understand your predicament maybe a support group is not something that is needed. Also, some parents are very private. They do not feel comfortable sharing their deepest feelings with strangers. It is important to be able to talk to someone. To find someone to listen, and often a family member is that support.
If your immediate family is not that supportive some NICU families turn to close friends or neighbors. Also, some of us in this mobile culture may not have the luxury of family being a stone’s throw away. I may live in SLC and my family may live in Florida., or I may live in Connecticut and my family may be in California. You may feel closer to those you work with or live near. A very moving comment, by Ed Martinelli was when he posted to preemie-l, “Imagine the relief of coming home and finding that someone mowed your lawn while you were at the hospital” A neighbor that cares enough to take over such a task, or offers to make dinner or tend the kids can be a lifesaver. Small tasks become very important and supportive in the crazy world of NICU.
Many families state that support from Medical staff is the most important support. They feel that if the doctors and nurses understand how they feel and what they are going through, that is enough. Also, that may be the only support available in the Hospital setting. Some of you contributors stated that there was no support group available. That the staff were supportive and helped you survive the ordeal. I think that many times the bedside nurse that you see every day is an incredible source of support. I continually try reinforce to the nursing staff at our hospital how important their role to families really is. That for many parents, the nurses literally teach us how to parent our preemie. Medical staff support is essential to us NICU parents.
Some of us also find tremendous support through our chosen Church or through the Clergy. The fact that NICU’s allow this support, and many provide it, is critical in helping us cope.
Some of us find we need more intense support from specialized professionals. As a support coordinator, I know that sometimes parents emotional needs are far beyond what I, or my support group should handle. Social workers, therapists and psychologists are available and should be used when necessary. We also have Crisis Workers in our Hospital, and often they are called to our Unit to help a family “get through” a crisis.
Another very valuable source of support is educational materials. Many parents want to have all of the info they can get in print. We give, through fund raisers and donations, every family in our Unit with a baby under 32 weeks, the book Newborn Intensive Care, What Every Parent Needs to Know. Any family with an older baby, or one that is very sick also receives this book if they would like it. We have many other books available. We also try to have videos, magazine and journal articles that are parent friendly. I also have 2 Internet Newsletters available, as well as our own... and a list of Internet resources for those that need or wish it. Many of the Internet resources are very valuable to families. They can get support, as many of us do with preemie-l, in the comfort of their own homes, on their own turf and on their own time. Families cope better with knowledge. They need and want to understand.

Now I would like to talk more about Support Groups and Support Group Basics
There are many different support groups.. As any of you know that try to do fundraising...there are support groups for everything. Basically, the two most common for preemie families - still in the NICU - are the Hospital based or the Community based support group.
As I said earlier, I co-ordinate a Hospital based support group. I am on staff at our Hospital and am a part of the medical care team. I attend rounds, discharge meetings, care conferences... I am the liaison for Parent to Parent. I work with staff, the new parents in the Unit and also the support group members. With permission, I give input to the staff, as to how new parents are doing. Our group has been fairly successful. I wished that every NICU had a parent support coordinator. I was fortunate to have parent support from Parent to Parent and from the Parent Coordinator when my son Grier was born prematurely. The group, and the coordinator who was my very good friend Sandy Garrand, literally helped me emotionally survive this second NICU experience.
What I am giving you today is very basic. I would be most happy to talk to anyone about setting up, or maintaining a support organization at any time. Maybe next year, this conference could have a session on both of those topics.
In our Hospital based group I get referrals directly from NICU and L & D each morning. I check to see who is admitted and make my contacts from there. I either make one on one referrals to one of my volunteers or encourage the new parents to attend our weekly group meetings with graduate parents.
I think the benefit of a hospital based support group is that there is someone on site, there to meet new families right from the start of the experience. We try to contact new families within 24-48 hours of admission. Sometimes that is not possible. But to talk to a family in the early stages of the experience seems to help. Sometimes, as you will remember, right at first a lot of parents don’t have questions... simply because they just don’t know what questions to ask...so we just talk to new families.
We also have a lunch for antepartum, or bedrest patients each Tuesday. These moms are wheeled to a large room, their hospital lunches from the cafeteria are brought to them there and we have lunch. Others that attend are a graduate parent, a Social Worker, a clinical nurse specialist and myself. This gives the new high risk mom a time to look forward to “getting out of her room”. It also gives her a connection before she ever delivers. She knows someone who has been through what she is going through and also some of the other support people in the Perinatal area.
Our group, Parent to Parent has a Board of Directors, bylaws, a formal address and phone number and regularly scheduled meeting times. We have Parent night once a week and membership/board meetings once a month. Sometimes these meetings are well attended, sometimes they are not attended. But parents know someone is there for them.. These meetings are in the hospital, during shift change and only for about an hour. We do not hold them in the NICU. Parents get away from there for a few minutes, talk, cry, vent, and go back to be with their infant. Hospital based seems to work for us.
All Hospital based support groups are not the same. Each Institution has it’s own set of rules and regulations. Some groups have paid coordinators like me, some have Nurses and social workers who fill that role.
Community based groups can also be very effective. I am not an expert of community based support groups, so I will give you just a little bit of info and hope you can meet with some of the Community based leaders in the audience if you wish more information. The groups that I am familiar with are very diverse. As each Hospital is different, so is each community.
The Community Based Group I am most familiar with has volunteers that will go to several Hospitals to meet new families. They have as many as 10 Hospitals they work through.
Some of these groups are funded through the Hospitals that they serve. Some are funded through Grants or Foundations. Some get help from other Non-Profits like the March of Dimes. Some are literally funded by the volunteers that run them, and quite a few are funded in a combination of more than one of these sources. These groups are usually given a referral from a staff person in a referring NICU. This could be a social worker, a nurse or a Doctor. They may have meetings in a community building, they may rotate to different hospitals. They may have one coordinator, they may have one in each facility or hospital that they serve.

Even though every support group is unique, there are some very common elements that will help the group sink or swim.
One of the most important things for any support group to do is set goals. Whether your group is Hospital Based, Community based or Internet based... goals are essential. Set some short term goals. Have several. They can be as simple as finding a place and a time to meet. Another short term goal could be having a successful reunion each year, or having something for the new moms on Mothers Day, or for Dads on Fathers Day.
Then set long term goals... what is it you want this group to do or where would you like to be in say - 5 years or 10 years. A long term goal could be setting up and funding a library in your NICU.
Some volunteers would rather focus on a short term goal... something they can complete and maybe move on afterwards. Others may wish to focus on the long term goal...to continue to make a difference for future parents. Short term and long term... these goals are equally as important for support groups.

It is also very important to remember to re-evaluate your group. Things change in time... what Parent to Parent did 23 years ago is very different from what we do now. I could have never envisioned Preemie-l, or the Internet, back then. Supporting families is what it is all about. You’ve got to be willing to change with the times...you’ll be much more successful.

Another important factor in having a successful group is to network. A new group can learn so much from an established one. Also, established groups can get enthusiasm and new ideas from the new groups. This kind of meeting, where you are sitting today, helps us know what is going on in other NICU’s throughout the world. This kind of forum or meeting is invaluable to support group leaders.

Who Benefits from Support
High risk pregnancy or an NICU experience threatens a parents self esteem.
Very often the pregnancy is labeled abnormal, high risk or “a problem”. All NICU parents have felt, to some degree, the grief over the loss of the dream of the perfect pregnancy or the perfect newborn. What should be a natural, fulfilling experience often becomes one of uncertainly and fear resulting in a critically ill baby.
Many NICU parents feel a loss of control over their lives at present; and also what the future will hold for their infant or the possibility of future pregnancies.
Attitudes regarding the role of parents in the NICU began to change for the better in the mid 1970s. Health care professionals recognized that excluding parents from the NICU was detrimental to the well being of the infant and the family unit. As NICU’s became more family focused (now referred to as family centered) it was realized that parents had unique needs that were not being met by professionals, extended family members and friends. These parents might do better if they could talk to someone who truly understood how they felt about what they were going through... another NICU parent.

I would like to share with you, some quotes from parents. These parents had no support group, but still talk about how important support would have been for them. As I said earlier, I will not use names, but I will use first initials...
N said: “We were not aware of any support group while (our baby) was in the NICU. However, the nurses, physicians, social worker, etc. provided so much support to us. It was after we left the NICU that we felt terribly alone. We could have really used help out in the ‘real world’. If it was so hard for us, I can’t imagine what it is like for a family with a baby who has more serious physical problems.”
P said: “I would say that a parent support group would have been very important when my son was born. My parents didn’t want to hear about (him) because they didn’t know what to do. My mother-in-law was always crying and I had the impression because of this, that I had not the space to cry, to tell my own feelings and I felt so lonely. Nobody was there to listen to my worries, concerns and answer my questions.”
T said: “We didn’t really have a support group at the hospital where (our baby) was born, but we made a support group among several moms and dads who had very small preemies and were in there for a long period of time. We were all working parents so we would meet every night at the same time to see our babies and we would talk about things that were bothering us. It really helped.”
The next Mom had no support group, but has been very active in parent issues since their child’s hospitalization. A said: “ My husband and I didn’t have access to support groups at the hospital our son was at. In fact they are just trying to form one now, and we’ve been asked to help on their board of directors. This is 5 ½ years after my son was born. I have been active with preemie issues since my son’s release, and through the last couple of years I assisted with co-writing a transitional planner, and have edited other materials regarding premature baby issues. “ She also stated that she is currently editing a book and doing a lot of research on preemie as well as maternal issues. She says, “I have tried to continue to be a support as a resource, since that was something my husband and I would have appreciated. I know how important it is to have somebody you can ask questions of and ask for information and resources. That is why I try to pass the experience I have on to other who need it.”

The next quotes are from parents who confirmed the importance of NICU support, and how a group helped them cope.
K said: “There were many times that I felt alone and that no one really understood. Having someone else who has gone through it or is going through it sure made a difference for me. I was able to talk to other people going through the same things and the same emotions. It gave me hope”
Another K said: “When you are going through the NICU experience it seems surreal - you live in a high tech world with a totally different language and it seems unbelievable that the world outside the NICU is unchanged...Your friends and family try to be supportive - but don’t really understand... the parent support group is where you can talk to parents going through the same thing as you, as well as parents who have been there and lived through it. Seeing the “big kids” who were once in the same place as your little one, gives hope - much more than words. It’s okay to express your fears and hope and to celebrate little successes that wouldn’t register as a ‘success’ outside.”
B said: “I think it is important to know that other parents have gone through what you are going through presently. I feel that finding out that feelings are very common among preemie parents validates your feelings. Support is important because you are thrust into a situation where you are not the one in control, and knowing that you do not have to bear your burden alone can make the burden easier.”
“While in the Unit, I always wondered what my baby would look like when he was discharged, was he going to ‘look’ normal? It was hard to picture a cute little baby boy when he had transparent skin, and tubes and wires all over him. Seeing former preemies helped. Visualization was something that was important to me then”
She continued “The support group was a safe place where we could share our feelings and not feel threatened either by ‘don’t have a clue’ comments or people not understanding what we were talking about... like medical terminology, excitement in the small milestones.”
L said: “It was wonderful to me because it was the only people I felt ‘normal’ with during the ordeal. I never had to explain what CPAP was or how the pulse ox worked. I never had to answer questions like ‘what did you do’ that caused my daughter’s prematurity. I could just be myself and focus on my child and ...helping our family get through it... I would have never survived without knowing that we were not alone in what we went through.”
K said: “I attended 3 meetings while (my baby) was in the NICU. They helped IMMENSLEY. I think mainly because I had parents to look to for guidance, ones who had been through what I was going through... Sadly, it also gave me a time to compare and say, you know it could be worse. We exchanged loads of tips on dealing with relatives, which the nurses and social workers just couldn’t do. It is important for emotional health of the parents, the grandparents and the marriage. I think it is one place where parents can express their fear and concerns without fearing judgement from staff.”
The next group of quotes are from parents who are involved in support groups and why they feel that their efforts are necessary. Also, how being involved in support groups has helped them deal with their own experiences.
L said: “ After quitting work, I needed something meaningful to do! It was also a pay back for all the help and support I received from a support parent. It helped re-affirm the fact that I SURVIVED and I’m okay!”
J said: “I guess for me it is basically my way of giving a little back and also I feel better about making others feel a little less scared because I was pretty scared and alone.”
B said: “I want to be there for them and let them know they are not alone in their feelings. I feel I am giving back something to the hospital. I feel the public has so much to learn about us preemie parents and our children. I had the privilege of helping to start our group. Some of our members have felt the need to ‘move on’ to other things. I, for some reason, have never gotten to that point.”
D said: “giving to others, helping others is always a payback in the fact that it makes you feel good. It gives you self esteem and makes you more outgoing. You can make valuable friendships that you treasure. I gained a lot of knowledge from (my support group). I’ve been able to go to conferences and learn from other parents and medical personnel, authors, etc. I have gained understanding of how others must feel and the kind of problems they are facing. Nobody is always right - not a Doctor, Not a teacher - you have to go on a feeling. I have learned that other parents have, but it always helps to share - what you’ve learned, what they’ve learned - that you are not alone. It is ALWAYS a pay back. You can be helping, but gaining at the same time.”

L said: “ I think that it is important to support other families, because I’ve been there. I have been at the isolette day after day, and looking at my baby for the first time, and remembering how terrible that I felt. How I felt that it was my fault, and thinking that I was all alone in this. It is important to have people there for you, and for me to be there for them!”
P said: “I had wished at that time that (my baby’s) birth could help somebody. That it would not be worthless, all the things we went through, that somebody has not to go through all of this alone... I became a member of (my support group) five years ago. I think I helped some parents but the person I helped the most was me. I was able to reconcile with myself, and I am still involved in the association.
C said: “I have benefited greatly from the satisfaction of knowing that I have helped another parent travel through the grief process to the point where they let the child of their dreams ‘die’ and accept the child that they have. In doing this I realize that I have overcome and continue to overcome obstacles and disappointments of raising a daughter with a disability.”
S said: “I met a former patient with her baby of 5 months, who HAD gone through a similar situation of bedrest and hospitalization. This graduate mom must have thought I was a basket case, because all I could do was cry and look at her baby - what a total relief to see one that was OK, thinking some day I want to do that for someone else. To help them feel even SOME of that kind of assurance that in spite of how hard it is to get through ... there is an end! I kept thinking, If I can just get through this, I promise I will help others to know that they can too. I find that sharing my experiences keeps my life in perspective - remembering what is the most important thing - my family. It reminds me each week of how blessed I am to have my son and my daughter. The personal growth in me since my experience compares to no other in my life. I learned that service to others is the key; giving myself to others helps me to forget about myself, and reminds me daily that I have so much - even though it is hard - all I have to do is visit some other mom who is having a hard time and I end up feeling better about helping her and about myself.”
S said: “ I feel that parent support has most benefited me because it gives me an opportunity to continually work through the issues of my own experience. I also have benefited because I find that ALL of my emotions and feelings are shared by many different parents. My compassion and emotions towards others who share my experience continues to grow. Many times I have felt anger and frustration because my family doesn’t always understand my experience and continuing fears. I find comfort in knowing that others may not feel so alone because of my support and involvement with them. If I can help one family through the pain and loss of having a premature infant and give them the knowledge that I truly care about them, there is no greater gift I could give or that I could receive from parent support.”
K said: “ I became involved to help my self heal. Also, to lend help to others, especially ones who dealt with rough problems like marriage difficulties and insane in-laws.... you know those topics that seem to be taboo. To help better understand the workings of families when dealing with preemie birth, and to meet others who I could discuss my child with freely, ones who understood the lingo and concerns of an “older preemie”
She then concluded: “If I can prevent one mom from coming as close to going over the edge as I did, I feel like I am doing something incredibly worthwhile.”

As I said earlier in this talk, some parents are very private and say that they are uncomfortable sharing their personal feelings with strangers. NICU is a difficult time, and I hope that a parent support group is never “shoved” down anyone’s throat as the “best” way to cope. One mom, S, explained her feelings as follows... “with my first preemie, I don’t know if there actually were meetings... I was too wrapped up in the horror of my of situation to talk to other people going through the same thing... but when I became aware of the fact that everything a parent said or did became nurses notes, the hospital became a very, very hostile feeling place to me. Everyone was pleasant and ‘appeared’ sympathetic, but if you were stupid enough to express your concerns, you’d soon find that the next shift of nurses, was asking pointed questions, and ‘quoting’ concerns that you had given to someone else. The time in NICU gave me a fishbowl feeling, that to a private person like myself was almost painful. I made a point not to say anything to anyone in the hospital because I didn’t know or trust anybody I met through the hospital setting. When my second daughter briefly wound up in the NICU, I clearly recalled the situation from the first time and made a point to say nothing... Strangely, I became (my baby’s) primary nurses’ project. She pushed and pushed the parents group, which of course made me all the more unwilling... every time she asked I would politely smile and say - how nice that you have that group, I’m sure it’s wonderful, right now, I feel being with my daughter is what I’d really like to do Thanks! And she’d try again and again... I think there are probably lots of people like me who ‘get through’ the crisis before they begin to process and cope with what happened, also many people are shy in person...
Then “S” then stated something very important... she continues...”which is why this virtual community (preemie-l) is such a wonderful alternative to support group meetings.”
S, needed support, and found the kind of support that was right for her. She found Preemie-l and some of you in this room.

I would like, for just a minute, to talk a little more about our hosts for this meeting, Preemie-l and the Alexis Foundation. I would like to join all of you in thanking them for making this experience possible. These groups are the ultimate in support for families in NICU’s throughout the world. I would like to make sure everyone knows what they are all about. Not everyone in the audience subscribes to preemie-l. Not everyone knows what the Alexis Foundation is all about. I would not feel that my talk were complete without mentioning the unique support these groups offer families, staff and laypeople everywhere.
The Alexis Foundation is a non-profit Foundation that provides support, educational and informational services for parents and families of prematurely born infants and children. They promotes both public and political awareness of the problems that preemies and their families face and they advocate for premature children to ensure that they receive the best medical and educational services available.
The founders of The Alexis Foundation are parents of premature twin girls born ten days apart. Alexis Sayers was born on January 29, 1994 at 24 wks. gestation, weighing only 1 lb 6 ozs. Kaitlyn Sayers was born on February 8, 1994, at 26 wks. gestation, weighing only 1 lb, 10 ozs. The Foundation was named in loving memory of Alexis who fought for her life for 27 days until her tiny body could fight no more. It was created in honor of all premature infants who fought the battle to survive, even if they lost. The Foundation helped a family whose tiny baby spent his first months on my turf, in the NICU at the University of Utah Hospital. I applaud them for what they do, and what they stand for.
Preemie-l . I don’t know where to start. For those of you who do not know, and if you all know... please humor me and be patient for a few minutes longer... Preemie-l was started by Gary Hardy and Anne Casey after the birth of their premature son, Vincent. Preemie -l is an incredible support network, consisting of a web site and an e-mail based, as well as a message board type, discussion forum that exists only on the Internet.. The group includes not only parents of premature babies from throughout the world, going through the NICU experience presently, but many parents of premature babies as they grow up and face the challenges of life after the NICU. I can think of no better source of support. I wished that every NICU throughout the world (and God knows that includes my own) had Internet access for the parents in their Units. I am glad my friend Michael Hynan, told me about preemie-l. I can not longer imagine not having them as a resource in my NICU.


(Conclusion)
Having babies in the NICU changes lives forever. It has for all of us... That is why we are all here today. In the years that I have been offering parent support, I have gotten so much, more than I have ever given.
Through all that has happened to all of us, we’ve become educated. We have learned things we never imagined learning. We have attained a great deal of knowledge. It is amazing how much we had to learn in the weeks or months that our babies were hospitalized. We have read books, articles and have courageously surfed the net. We have learned a lot from the medical world... but we, as parents of critically ill infants, have learned a lot about life.
We have learned about compassion... real compassion, feeling the pain that others feel. How can we not feel compassion for someone in whose shoes we once walked..
We have learned about fear... being afraid is not always bad.. you can grow from being afraid...
We have learned about strength and courage - not only from each other, as parents going through NICU... but from our children... think about how much you have learned of strength and courage from your children.
We have also learned about grieving... for the actual heartbreaking loss of an infant... for the loss of the dream we had of the perfect birth experience, for the perfect baby... for the movie setting outcome... for the perfect life... we have learned that grieving for the loss of the dream is normal and natural. The fear, anger, and the returning anxiety, are all normal feelings that accompany such a loss.
We have learned how to be patient, we have had too... bedrest, NICU, re-hospitalizations, Dr. visits, waiting for answers to questions, results of tests... evaluations... maybe she’ll be better next year...we have all learned how to “hurry up and wait”.
We have learned how to listen... to each other. To the parents that we support, to the families that care about these fragile babies... but also to the professionals... medical, insurance and educational professionals. We also know that some of what we have had to listen to, is not what we have wanted to hear.
In addition to listening we have also learned to speak out. We have become advocates... for our own children in our personal experiences. We have also become advocates for others in our communities.
We have learned a lot about relationships... family, neighbors, friends and professionals relationships. They are all connected, important, if not essential in getting through what we have had, in what we do.
We have learned to appreciate what we have. I so appreciate my husband, Gary, who is more supportive than I ever deserve...my children and their health... and literally for their lives.
We have also learned a lot about love... the kind of love that is unconditional... even if our baby isn’t perfect or if our lives are upside-down... we love. Sometimes more so because of the struggles.
We have also learned about friendship. You all know that going through what we have has shown you who your real friends are. I have had the opportunity to meet all of you as a result of having a critically ill newborn. In my own warped way, I guess I am glad that I have had this experience. Some of my dearest, most cherished friendships are with those I have met as a result of my experiences. I do know for a fact that I would not have been here speaking to you today if I had not once been a terrified parent in the NICU.

As I look around this room, there are old friends, new friends... we all share one thing... our experiences in NICU. We share a love for preemies, for our own families, hopefully for ourselves. We also share the fact that we survived so far. I thank you for having me here today... for patiently listening to me and most of all I thank you for having the courage to be here.









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