3 On The Way: And Ahead of Schedule
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About this ebook
Be moved by the experiences of a mother who delivered her triplets prematurely in a foreign
country, with the help of the NIDCAP method, in the Neonatal Intensive Care Unit. It is not intended as an advice guide, but it does tell the story of several years of experience for her, her husband and their three babies.
Are you afraid of finding out that you will have a multiple pregnancy?
Do you know what it means to have babies born prematurely?
Can you imagine what life will be like for you and your babies in the Neonatal Intensive Care Unit?
Do you have any idea how exhausted you will feel during the first year?
Have you heard about the consequences of burnout and chronic fatigue?
In this book you will also find answers to your questions about what a high-risk pregnancy and an emergency caesarean section can be like, as well as different concerns such as premature birth and neonatal care, psychological support networks and the monitoring of babies so that they can grow up in the best possible way.
As parents, we are often faced with major changes in our lives, and a myriad of different and contradictory emotions and feelings manifest themselves due to the big event.
Find out more:
Necessary care for the mother during a high-risk pregnancy and in the postpartum.
The optimal neonatal care needed for premature babies and the help of the NIDCAP method.
Some complications and miracles that can occur in these fragile and sensitive babies.
Tips on how to be an active mother in the NICU.
The importance of follow-up in premature babies.
Important topics such as chronic fatigue, burnout and sleep deprivation, as well as resilience and positive mental attitude.
You will value your new conscious motherhood through direct contact with your baby.
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Book preview
3 On The Way - Mónica Vírchez Figueroa
3 on the way, AND AHEAD OF SCHEDULE!
Original Title: Llegan 3 ¡Y antes de tiempo!
ISBN: 978-84-122619-2-9
1st edition: 2020
© 2020 Mónica Vírchez Figueroa [email protected]
© 2020 Gratia Editions
Translators: Grace Wintergest
Edition: Valeria Le Duc
Editorial Design: Karina Flores Cover: Ángel Ruiz and Karina Flores
The partial or total reproduction by any mechanical or electronic means, without the authorization of the author and the publisher, is prohibited.
NIDCAP PROGRAM
WITH PREMATURE BABIES
3 on the way,
AND AHEAD
OF SCHEDULE!
Monica Virchez Figueroa
frn_fig_002Contents
frn_fig_003FOREWORD
Listen and be guided by your child
Beating the odds
Trajectory
INTRODUCTION
CHAPTER 1
Starting the new adventure
Family planning, news and surprise
First trimester of pregnancy
Care during a high-risk triplet pregnancy
Complications
Possible causes of prematurity
CHAPTER 2
Passing the first test
Maternity
Second trimester of pregnancy
The Neonatal Unit
CHAPTER 3
The long-awaited event
Emergency C-section
frn_fig_004The respected birth
What is prematurity?
Attachment
We are mammals
CHAPTER 4
Transfer between hospitals
Co-sleeping
My children and the NIDCAP
The maternal role and the paternal role
Positive touch contact
The language of the newborn according to Charlotte
Infant massage
CHAPTER 5
Special situations in the NICU
Parental Grief
Grief process
Postpartum care
CHAPTER 6
Process prior to hospital discharge
Optimal neonatal unit
Ivana and the Brazelton Program
Thomas Berry Brazelton
Preparing to leave the hospital
CHAPTER 7
Philosophy of developmental-centred care
What is the NIDCAP Program?
Family-centred care
Benefits of NIDCAP care in early development
The family
CHAPTER 8
Hospital Discharge
Arriving Home
Baby Bassinet
Installation and adaptation at home
Postpartum Depression
First Months at Home
CHAPTER 9
Second Semester at Home
Playtime and Routines
First Time Leaving the Country
Burnout notice
First year of age
The Importance of the Father
CHAPTER 10
Schooling
Nursery
Transition from nursery to preschool
Four Year Follow-Up
How to help them develop?
New relocations
Primary School
Tracking the triplets
Secondary Education
CHAPTER 11
Continuous Monitoring of the Premature Baby
Possible long-term sequelae
The importance of family and the environment
Continuous monitoring
CHAPTER 12
Resilience process
Burnout (emotional hypersaturation)
Mental Health in Mothers of Preterm Multiples
How to support parents in the hospital
Trauma
Post Traumatic Stress Disorder (PTSD)
The presence of the psychologist can help
Parents’ needs
Sleep Deprivation
Chronic fatigue
Fibromyalgia
Resilience
How to develop optimal resilience
Tips for future parents of multiples as parents and as a couple
CHAPTER 13
Parent Associations
Premature Association
Importance of the parent association
EFCNI European Foundation
Decalogue of rights of the premature baby
CHAPTER 14
Conclusions
Psychological and Social Support Network
Mental health
Acknowledgments
Bibliographic References
Resources
NIDCAP centres
Glossary
Appendix
frn_fig_005FOREWORD
frn_fig_003Listen and be guided by your child
Birth stories are infinitely fascinating. For every woman, giving birth is a transcendental experience. The stories of mothers who gave birth prematurely are extraordinary and I feel privileged to have listened to so many and to learn from both mothers and fathers about how they faced the complex emotions and physically demanding responsibilities that come along with having a baby in need of neonatal care. How do they handle it and how can we help them develop the resilience they need, not only for the first days but also for the weeks, months and years to follow?
Mothers tell us that their most important sources of support are their partner, followed by their family, and finally, the medical professionals who care for them and their baby, but it’s not always this way. What happens if you’re alone, in a country far from home where the language spoken isn’t your own? And if managing the anxieties of your well-intentioned friends and family becomes an added charge? What happens if there’s a conflict within the family? Facing parents who believe they know what is best is hard at any time, but even more so when your defenses are low and they cannot know what you are going through. Suppose that the feelings you’re juggling double or triple with twins or triplets, each on a different journey. We need to allow parents to carve their own paths during their stay in the neonatal care unit and provide emotional support until they find their place in the community, not only for babies deemed high-risk
but for all families who want and need it.
The separation of the mother and her child is traumatic for both; international organizations such as the World Health Organization and the European Foundation for the Care of Newborn Infant rightly insist that parents should have unlimited access to their babies and be as committed as possible to providing all the love and care that is part and parcel of being a parent. Despite the evidence demonstrating its importance for the future of the baby and the family, this is still far from a universal practice, even in countries with adequate resources. The separation creates a situation in which parents are found stripped of their power by professionals who have the knowledge and control, establish rules and far too often act as guardians. It takes bravery to challenge this position. Every family needs advocates to help them through the system.
Health professionals know it is their duty to advise the family, but too often all they do is distribute large volumes of printed information that is never read. Mission accomplished! Parents may feel inhibited when it comes to asking questions, and even more so when their questions or doubts are not clarified because they have been too stressed to absorb the information. They are not sure if they are being painted the true picture or they are afraid to be perceived as difficult
and this may have an impact on their baby.
Good communication means asking as well as telling. What do parents really want to know (not just what professionals think they want to know)? Can we use meaningful language instead of hiding behind the jargon of the neonatology club? Do we sit down and engage in a personal conversation or do we stand before them in intimidating groups? Parents need to trust the communication and also the culture of the team. They perceive the rivalries and disputes that lurk in the background and that render them more vulnerable and vigilant.
One of the main platforms of resistance training is what we sometimes call responsible selfishness,
meaning taking care of oneself. Mothers are often encouraged to go home and rest when they most want to be around their babies. As one mother said, having to leave her baby felt like an amputation. The minimum that must be provided is: a comfortable seat next to the baby in which she can sleep if she needs to, access to clean water and nutritious food. And when parents choose to leave, perhaps to have some privacy and snuggle up every now and then, that’s okay too. Family rooms are increasingly being incorporated into neonatal units to make the continued presence of parents a reality, but they also need to be able to be alone and have privacy. Parents learn from each other and need opportunities to build those relationships. The breast pump room is often their sanctuary. Loneliness is a common condition for new mothers, and many parents fear venturing back to their community when their baby leaves the hospital. After the hospital discharge, it can help to reach out to other parents so that those relationships can flourish – being with others who have shared similar experiences is a relief.
The arrival of a new baby always changes the family dynamics, but when their arrival in the world is too soon, and clouded with uncertainty about the future, the prospects are more complicated. Much emphasis has been placed on caring for mothers, but lately more attention has been paid to fathers. Fathers are also vulnerable to anxiety, depression, and post-traumatic stress disorder. We must update the traditional idea of a father in the role of the strong provider who manages to be more interested in the data on the monitors than his own baby. Some units now offer father support networks. A well-supported partner is what the mother needs. And if there are other children in the family, how does one choose where to invest their energy? In the little newborn who clings to life at the hospital, in their other children at home, distraught and disoriented by your absence, or in the cloud of anxiety that floats over the family? This is a balancing act that neonatal units need to consider, offering opportunities to welcome in siblings (who may also be able to help with the babies’ care).
There is no single way to be a parent, but there is a primary principle: to listen and be guided by your child. Perhaps one of the most important ways to help a parent build their resilience is to listen to them without judgment, to give them space to reflect on their situation and what their baby is communicating. Each baby is special in their own way, and if the parent is encouraged to simply be with them, they will learn who the baby is, and will discover individual particularities and characteristics that must be understood and cared for. In this book, Mónica recalls the frustration of hearing her babies referred to as the triplets
, which led her to pen portraits of each one of them, to help us understand how different they were. Likewise, it is wonderful to see how their differences led them to evolve into three unique and glorious young people and how each one took a different path to become the adults that they are today.
INGA WARREN
Senior trainer of the NIDCAP Program and Director of the UK NIDCAP Training Centre.
Co-director of Family and Infant Neurodevelopmental Education (FINE) program.
Honorary Research Associate at the University of London College Hospitals NHS Foundation Trust.
Consultant at Bliss.
Founder of Early Babies.
Author of Caring for your Baby in the Neonatal Unit.
Beating the odds
The premature birth of a child, even when parents are warned that their child may be premature, is a stressful event. They may have prepared for it, but it is often even more overwhelming than they might have anticipated. Now, imagine you are dealing with triplets born eleven weeks before the C-section. Will they live? This is a book about a family starting with a high-risk pregnancy and neonatal care until they are discharged. Often times, the story stops there for obstetricians and neonatologists. But coming home to all three babies is an important milestone and the beginning of a round-trip journey for this family and their triplets, throughout childhood and into adulthood. It is the story of a mother, Monica, and her triplets, and what a journey it has been! From continuing with tube feeding and oxygen at home, to burnout and postnatal depression, the journey continues through early developmental follow-up, right up to the beginning of elementary school. Then the shift to secondary school and the challenges of adolescence, making friends and building relationships with peers. And all this while trying to accommodate six home moves in ten years. The story of this book ends with the triplets’ transition to adulthood. And despite a common beginning, how different they have turned out to be as individuals.
There have been many tensions and sacrifices throughout this journey, such as the fact that the marriage would not survive, but both parents continued to take care of their two daughters and their son. There has been pain, worry and doubts. But the most important message is that of resistance: how to beat the odds, how to face and overcome obstacles, and how to share their experiences, as well as everything they learned from going through them to give hope to others who are in a similar situation.
Monica and her children are the testimony that one can overcome and create something for the benefit of others — an association for parents of premature children in Spain and in collaboration with all of Europe. May this book bring hope to many parents who have given birth to a premature child or multiple babies.
frn_fig_007DIETER WOLKE
Ph.D. Dr rer nat h.c .; Professor of Developmental Psychology and Individual Differences at the University of Warwick, Stradford upon Avon, UK.
Trajectory
Prematura is a Spanish association of parents that is part of the European Foundation for Newborn Care (EFCNI), made up of parents of babies born before term or with complications in conjunction with specialist doctors. It arose in 2006 with the intention of optimizing the treatment and development of premature babies throughout their childhood and adolescence, as well as offering lived experience to all families that need it.
Mónica Vírchez has participated in the development and growth of the Premature Association for 20 years. From the beginning, she has connected the association with other parent organizations both nationally and internationally, promoting a fruitful exchange of experiences between affected families and professionals.
In 2006, she attended the first parents’ meeting in Rome, organized by the EFCNI Foundation. She has been part of this organization as a member of the parent advisory board from 2015 to 2019. In this position, she has been involved in the European standards project for neonatal care and newborn health, where she has collaborated in the expert group on the follow-up and continuing care of the premature baby. Her skills and knowledge, backed by her personal experience as a mother of triplets and premature babies, and professionally by her degree in psychology specializing in prematurity, has qualified her to develop a standard for the care of the baby with a high quality follow-up for newborns born prematurely and facing significant challenges in their future.
The European Standards for Newborn Health Care were officially launched in November 2018 at the European Parliament in Brussels and endorsed by more than 150 health professional societies and official European organizations.
In 2015, the Congress of Joint European Neonatal Societies (JENS Congress) was created. It is the first medical congress where representatives of parents and patients actively participate in sessions and workshops, and allowed parents and health professionals to cooperate and establish a supportive relationship, in addition to working together.
These are just two examples of the changes we can observe in the relationship between parents and medical experts. Monica wants to continue her commitment to the parental perspective, as she is convinced that respectful cooperation between parents and professionals will result in sustained, high-quality care for premature or sick babies. She therefore promotes and supports professional parenting groups as president of the Premature Association and a long-time member of EFCNI and, last but not least, as a mother of triplets who were born prematurely.
frn_fig_008SILKE MADER
Co-founder and President of EFCNI
European Foundation for Newborn Care.
Out of respect for the anonymity of professionals and hospitals, the original names in the book have been changed.
To my triplets: Tania, Fiona and Dídac, with all my love, thank you for being here.
To their fairy godmothers: Ivana, Charlotte, Joyce and Megan.
When a newborn grips his father’s finger for the first time with his little fist, he’s got hold of him forever.
GABRIEL GARCIA MARQUEZ
frn_fig_009XAVIER KRAUEL
INTRODUCTION
frn_fig_003I’ve thought at length about writing this book and it took me several years to decide to do so, and to be able to finish it. Marc and I are Mexican and have lived outside of our country for several years. At the end of our professional careers and jobs in Mexico City, we made the move to England, where we had the great luck and blessing of welcoming our triplets. Because of Marc’s work, we have resided in different places over the years, with countless moves, experiences and adventures in the company of our three children. As a psychologist, I had always worked in nurseries, kindergartens and doctors’ offices. Since having my triplets, I have been greatly inclined to all issues related to motherhood.
Being parents of multiple births and babies born prematurely is a great adventure into the unknown. It involves a lot of care, both for the mother during pregnancy and in the long-awaited delivery, and even more so when babies are born prematurely. It takes a lot of dedication, time and readiness to be able to raise three babies at the same time. Parents encounter great changes in their lives and emotions, and they face the feelings that occur before the great event.
This account of my experience as a mother of premature triplets has been a project that I started years ago and have only now been able to complete. I have journeyed through a unique adventure that has marked my life intensely. In these lines you will find the experiences of a mother who had her premature triplets in a country that was not hers, with the NIDCAP Program in the Neonatal Unit of a hospital in London. I describe my high-risk pregnancy and myriad experiences over the next twenty years.
It is not an advice guide, but it is my lived experience with a psychological support network and other lessons learned in a country other than my own. Both the babies and us are warriors who fought to survive this difficult experience of uncertainty, doubts, confusion