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Post-NICU 101 Common Challenges and Practical tips for Parents of Premature and/or Sick Babies after the NICU By Gigi, founder of Families Blossoming (March 2010)

It is no secret to parents of babies born early and/or sick that the NICU is abnormal - not matter how much the doctors and nurses try to make it feel as normal as possible for its distraught parents. It is a surreal environment with different, almost otherworldly, rules of its own. Parents adhere to these rules which can include such things as:
1)Only being able to touch their child through little portals in the incubator
2) Watching their baby hooked up to every sort of apparatus imaginable
3) Being constantly surrounded by lights, monitors and alarms
4) Seeing their baby cry a sound-less cry because he/she is ventilated
5) Mothers pumping their milk and feeding this milk to their baby via a syringe
6) Watching their baby being rolled away for yet another potentially life-saving surgery all the while knowing that it may very well take his life

These rules are an incredible shock to the system - and yet somehow, someway parents tend to find a way to adapt and survive the many days, weeks and sometimes months in this strange world. When they finally go home, many parents find that the very thing they envisioned as being the end of a long journey (i.e. leaving the NICU) is in many ways only the beginning.

In this article, I would like to share with you a few of the common challenges parents of premature and/or sick babies tend to face after they have left the NICU as well as some tips on how they can begin to effectively cope with each one. Bear in mind that not every single issue will be addressed because just like every baby born prematurely and/or sick is different (how many times have you heard that?), every parent and the manner in which they cope is just as different.

NICU Separation Anxiety: After spending several weeks/months in the NICU, "D-Day" (Discharge Day) is finally here and parents can hardly contain their excitement. Sitting alongside their feelings of euphoria though are also very real feelings of fear. Parents ask themselves questions like, 'Can I really take care of this baby?' 'Do I know what I am doing?' 'What if something bad happens?' After being surrounded by the safety and expert knowledge/skills of the NICU doctors and nurses in hospital, parents feel utterly lost and afraid now that they have their child on your own.

Tip: The key thing for parents to remember is to trust themselves. During their time in the NICU, parents had an in-depth crash course in how to take care of their child and from the moment they stepped into the NICU, they were learning, albeit unconsciously at times. Eventually parents learned when to be concerned and when not to be and most importantly, they learned to look at their baby, as this often told them more than any monitor could. Their intuition proved to be very valuable and parents frequently provided that link of continuity between all of the NICU nurses, doctors and specialists involved in their child's care. At home, parents need to continue to couple the real knowledge they acquired in the NICU with their own parental intuitiveness and innate understanding of their baby. Parents already know the what, when and how of caring for their little one.

Medical Avalanche: Even though they are at home, many parents continue to be intimately connected with the medical profession and feel like they and their babies are still in the hospital. This is because many babies continue to have ongoing medical issues that require constant monitoring and/or treatment intervention. These can range from apnea and feeding and/or digestive issues to breathing and cognitive issues. Many babies go home with oxygen, apnea monitors, NG and/or peg tubes, etc. and almost all come home on some type of medication. A lot of babies require frequent, often weekly, hospital/clinic visits and follow-ups, especially during the initial days/months after the NICU. For babies with more complex needs, home nurses can become the family's live-in guests. Yet despite having the support of these home nurses, many parents can continue to feel completely overwhelmed and snowed under by the medical assistance their child still requires.

Tip: To steal the concept from the famous Serenity Prayer - Manage the things you can, let go of the things you can't - and know the difference. Parents: let the health professionals do their job with your little one (s) and you do your job as mummy/daddy. I am not implying that parents don't remain vigilant regarding their baby's care - to the contrary - but I'm just saying do not lose sight of your primary and most important role - that of loving parents.

I cannot stress this enough. Too many parents continue to 'look at the monitors' even when they come home, rather than looking at and playing with their babies. It is when we can stop this very understandable practice, that we begin to truly start seeing and really parenting our little ones.

Developmental Concerns: Some parents will know prior to leaving the NICU that their child has some developmental issue and/or special need, i.e. cerebral palsy, Down syndrome, cystic fibrosis, etc. For many others, it maybe unknown diagnostically, but even in this case, parents usually have a strong and innate ability to know when something may not be quite right. They notice such things like their child not looking at them directly, not holding up his head or sitting up, not appearing to notice if a pot crashes suddenly to the floor, or just that their child acts a bit funny/differently to his peers. In both instances, the shock, weight and anxiety of this reality and/or potential reality can be crushing for parents. Concern for how they as parents can/will cope as well as how their children will cope is a constant worry.

Tip: Know that it is ok to feel crushed because your hopes and dreams for your child are not panning out to be like you had imagined. In some ways it is similar to the grieving process - and parents grieve the thought of what could have been. This acknowledgment of these feelings is vital. It is also important for parents to remember that although their child's life may be different to what they had envisioned, it is still a pretty special life. Parents should seek out help and support at the first sign of a problem so that intervention can begin promptly. Services such as Early Invention can help your child in his overall development. Trust your intuition and get help, when needed.

Relationship Disconnect This is a sensitive but key area to discuss. Having a child born early or sick is physically, emotionally, spiritually and financially exhausting from day one and it often continues once you are home. The time in the NICU required such a strong focus on their baby, that many parents forgot their own personal and couple needs. The sheer exhaustion and trauma of the NICU- if not discussed and dealt with in a timely manner - can lead to separation and divorce for many couples or at the very least, create a major point of contention in the relationship. "Recent research has shown that anxiety levels in mothers of premature babies are higher than mothers of term babies, at both 14 days and 14 months after delivery. [This leads] many parents, especially mothers [at a higher risk of experiencing] depression, anxiety and post-natal stress disorder (PTSD). Parents of preemies [also] have....feelings of fear, helplessness, grief and loss of the 'perfect pregnancy', even after their baby is out of danger and [is] thriving."(Bliss, Counseling Service, UK).

Tip: This time in parent's lives can either be a stepping stone or a stumbling block in their relationship. It will very much depend on how they approach the situation. If appropriate, seek professional marital help. In addition and/or in lieu of this, it is crucial for both parents to remember that they have lived and are living this experience together and that they are both on the same team. Nobody else, not their parents, siblings, friends, etc - can truly know or understand the minute-by-minute life in the NICU or the persistent concerns and tasks parents have once coming home. Parents have lived it, felt it, wept, laughed, worried, etc together and are continuing to do so. There is no need to explain the NICU experience or its after-effects, to one another. Parents should capitalize on this wealth of 'togetherness' that only the two of them share. It can often be one of their greatest strengths as they go through the daily routines and challenges of their after-NICU life.

THE AUTHOR: Gigi is the mother of an ex-24 week preemie and the Founder of Families Blossoming. gigi@familiesblossoming.com - Skype: familiesblossoming - Website:www.familiesblossoming.com

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INFORMATION FOR PARENTS ON PREMATURE BABIES provided by the BLISS charity (Summer 2009)

Everyone hopes their pregnancy will be uncomplicated and free from emergency. Few people consider the possibility that their baby could be born many weeks before the due date and need to be given special care for the first few day, weeks or months after birth. However, the reality is that around 82,000 babies are born sick or premature each year in the UK.

Babies can be born prematurely for many different reasons:

Pregnancies with twins, triplets or more babies are very likely to end early.

Pre-eclampsia occurs in about 10-15 per cent of first time pregnancies and is responsible for at least 15 percent of all premature births.

About a third of premature births occur for no apparent reason. Often they happen with little or no warning.

Stressful events can start labour early. However there is no evidence that normal day-to-day stresses of living can bring on premature birth.

In some cases the mother's waters break early, starting the delivery process. If labour starts while a baby is less than 35 weeks, the doctors may give drugs to delay the labour for a day or two or to help the baby's lungs to mature quickly.

What to expect

If you are shocked when you walk into the neonatal unit, you are not alone. It is very likely to be different from almost any other place you have been, and you may have just experienced one of the most traumatic episodes of your life. The room is full of monitors, high-tech equipment and the frequent sound of alarms. But all of the staff know that you are under stress and are there to help you as well as your baby.

Many of the babies in the neonatal unit are extremely tiny and immature. The equipment that surrounds them is designed to keep them warm, to monitor many of their body's functions and to support their breathing.

Depending on how early your baby is born or how unwell he or she is, you may be shocked when you see him or her for the first time. Premature babies may appear thin with little body fat and look different from most term newborn babies that you may have seen before. This is simply because they are at an earlier stage of development as they were born early. If your baby is very premature, he or she may only be the length of your hand and may well sleep for almost 20 hours each day.

Your baby

Remember that in the middle of all the stress and heartache, you have given birth to a baby. This situation might not be what you had in mind for the first few days of your baby's life, but it is still alright to be congratulated and celebrate the fact that you have a new member in your family.

Coming to terms with what has happened

In many ways you have just suffered a loss. Although your baby is alive and being looked after, you may feel you missed out on a normal pregnancy, or worry that you can't go straight home with your baby. Many people find this to be an emotional time, and find that the support of family and friends helps them in some way.

The next weeks and months are likely to have days of stress and worry, so it is good to find people who can help you people that you find it easy to talk to. Some people find it easier to talk about their feelings and worries to someone who doesn't know them.

Medical problems

A premature baby has the basic problem of no longer being protected inside the mother's womb and some of the treatments can bring about their own stress for the baby. In addition, the baby may have some weaknesses or problems that were part of the reason why he or she was born early. Some of these can have significant long term effects.

Apnoea of prematurity - Babies born preterm often have a pattern of breathing in which there are short pauses. Occasionally, these pauses can be prolonged and the baby needs to be reminded to breathe with gentle stimulation. In most cases this problems get better once the baby reaches a corrected age of 34 weeks.

Chronic Lung Disease - Babies who are ventilated for long periods of time may get Chronic Lung Disease depending on the level of ventilation or oxygen they need or if they develop a chest infection. The baby may need additional oxygen support for a while when they go home.

Brain haemorrhage - The tiny vessels found in some areas of a developing baby's brain can sometimes break, causing some bleeding. These small haemorrhages appear to cause no long-term problems. Larger bleeds can occasionally occur and doctors will monitor this by carrying out regular ultrasound scans. These larger bleeds limit blood flow to certain areas of the brain, therefore those areas will not receive enough oxygen. The cells in this area will die, forming a cyst. Exactly how this may affect the baby will depend on where the cyst is.

Infections - It is hard for low birthweight babies to fight infection and so it is a common problem. Infections are caused by germs collecting on the tubes and lines used on your baby.

Heart defects - Babies with unusual heart problems may need to be urgently transferred to a cardiac centre or may be looked after in your local neonatal unit, either until they are big enough for surgery (not all babies will have to have surgery) or are followed up in the routine cardiac clinic.

Patent ductus - A common problem for very premature babies is that a connection between the vessels supplying blood to the body remains open. This connection is open when the baby is in the womb but should close at birth. Your baby may be given drugs to close the connection. On rare occasion an operation may be needed.

Making decisions As the baby's parents, you have a major role to play when critical decisions have to be made about treatment. The doctors and nurses will advise what is best for your baby, but you will be expected to be involved in making important decisions wherever possible. This may be difficult in the case of emergency decisions that need urgent action. In general you should expect to be informed when any important decisions are being considered.

Help and support

You can call the Bliss Family Support Helpline on 0500 618 140 and talk to a member of our team. Helpline staff will listen to you and try to answer any questions you may have. Bliss also runs Parents 4 Parents - a network of parent volunteers whose babies have been in neonatal units and are bale to offer telephone support to other parents in a similar situation.

Discussing your feelings with other parents can also help. Many neonatal units run a group where parents meet to share their experiences or simply have a coffee and a chat.

our GP may be able to refer you to a counsellor. You could also ask a member of staff at the neonatal unit if there is a counsellor or psychologist available to talk to parents and offer support.

Various voluntary organisations such as wpf Counselling and Psychotherapy, MENCAP, the British Association for Counselling and Psychotherapy and Threshold Women's Counselling Service are worth getting in touch with.

Having a premature baby in a neonatal unit is a very stressful experience. Looking after yourself will help you and help you look after your baby. Make sure you eat, rest and take time away from the unit.

For more information visit www.bliss.org.uk or call Bliss' Family Support Helpline on 0500 618 140.

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'HOW TO HELP CHILDREN WITH DYSLEXIA' by Usha Patel of the Raviv Practice London (April 2009)

Parents with children suffering from dyslexia and other learning difficulties are right to be angry with MP Graham Stringer with his unqualified remarks about dyslexia and dismissing it as 'cruel fiction which leads to crime'. Whilst it may be expedient to blame crime on dyslexia it does nothing to explain how this condition occurs in the first place.

As a Raviv Practitioner, I work with many children with dyslexia and the fact is that these children want to be able to read, and want to be like their peer group in their abilities. This is only natural. When they can't learn in the same way as other children, their self esteem takes a knock and they lose interest. Alternatively, they may focus on only the things can do with ease. The creative industry is full of dyslexics who can create or design almost anything, but find reading a massive challenge.

So what is dyslexia and how can it be helped?

As humans we do not have an innate ability to read, write, spell or do maths. All of these things have to be learnt . Our linguistic ability has only developed relatively recently, in evolutionary terms, over the last 30-40 thousand years. The ability to read and write has developed even more recently – over the last 5 thousand years. So, it follows that oral and written abilities are at an early stage of development in the evolutionary cycle of brain.

Before we can read, we need to have certain foundation skills in place. These skills utilise three key centres in the brain, the motor, the visual and the auditory centres. These centres need to be in good communication with one another before effective physical co-ordination can exist. They work together with the nervous system in sending messages to rest of the body. For these messages to be transmitted correctly, the brain needs to relay it in the correct sequence and along the fastest circuits. Sometimes the brain message transmission fails to occur correctly due to developmental gap or development delay. This can results in motor related problems such as delayed speech, dyspraxia, or poor coordination during infancy. Often, these symptoms are dismissed as being a 'late developer' and the learning difficulties such as dyslexia only become apparent during the school years.

The reasons why these developmental gaps or development delay occur is not yet fully understood. Causes can be numerous and can include trauma at birth, trauma in the womb, missing a stage in development during the early year and genetics. What research has shown is that those with dyslexia process information in a different way from those with normal learning abilities. This information processing method is not as effective as non-dyslexic readers and takes up far more energy and time. If dyslexics are spending a huge amount of energy trying to understand the written word then it is not surprising if they neither look forward to or enjoy reading.

How can dyslexia be helped?

Dyslexia Action and other organisations involved in helping those with Dyslexia all acknowledge that conventional teaching methods do not necessarily work. They recommend a structured, multi-sensory, cumulative, approach.

The Raviv Method is a relatively new therapy. It is a motor sensory therapy which uses multi-sensory techniques. It is done on a one to one basis. As a practitioner I have seen many children go through this therapy with good success. The movement based exercises are completely removed from the academic set up of the classroom. This is a refreshing change for the dyslexic learner who has possibly built up a resistance for formal teaching techniques.

The movement based exercises stimulate the visual, auditory and motor centres simultaneously. This in turn helps create new neural pathways offering better communication between these key centres and laying the foundation for the pre-school skills which were never properly developed before. Once the movement based exercises can be performed with ease, the building blocks are in place to progress to the next stage.

Dyslexic readers often complain of seeing letters and words jumping around. This is because they perceive them as three dimensional objects. Instead of seeing letters as two. dimensional with a top, and bottom and left and right sides and a fixed orientation, they see them as three dimensional objects without any fixed orientation. Hence dyslexics often see and write the letters 'd' 'b' 'p' 'q' the wrong way round. The therapy goes through various stages to help establish an understanding about the relationship between phonology and the written language. Once the reading system is in place, the child can then go on develop other skills such as comprehension, logic and numeracy..

Many children who complete The Raviv Method become really enthusiastic about reading. Their reading ability goes up as does general academic abilities. Those with AD(H)D and other similar genetic conditions may need to continue doing the simple movement exercises after the therapy because their brain wiring needs constant renewal . The Raviv Method is not suitable for all kinds of learning difficulties. However, I have seen improvements in the vast majority of the children I see. Like any therapy, for a successful outcome there needs to be good commitment from both the parents and the child over the duration of the programme of around 24 weeks.

Once the child is happy about reading, spelling and writing, all that needs to be put in place is a system which pulls them up to the level of their peers in a drill like fashion.

Children can then start the Fast ForWord series of computer programmes, which can be done at home. This software is a scientifically designed by neurologists for those with special needs and not to confused by the commonly available 'Brain training' software. It is successfully used in over 30 countries with further reading gains of 2 years in as little as 7 months. It focuses completely on cognitive skills needed for reading,writing and spelling: memory, attention, processing speeds and sequencing.

This dual approach being offered is a successful partnership and has seen many children on the road achieving much more then their parents had ever thought possible.

THE EXPERT: At University I studied Architecture and from a early stage wanted to work on buildings that would make a difference to peoples lives. I specialised in schools, hospital and clinical buildings both in the UK and abroad. My work as clinical planner meant I had to do a lot of research into how hospitals worked in detail. I was exposed to an assortment of health specialist from psychologists, paediatricians to pre-mature baby care nurses. The research I did was always changing as new and better equipment became available to care for the sick. I worked in my chosen profession until I was expecting my daughter. After my daughter's birth I was looking into how babies develop and the all important mile stones in terms of physical development. I embarked on the Raviv Method programme to gain a better understanding of what to expect during the early years of my child's life and how to make sure the essential skills were nurtured. Once finishing the training I decided I should become a practitioner myself. To develop my skills and gain experience I worked on a voluntary basis at a local primary school. My voluntary work lasted over a year working with a wide range of learning difficulties such at dysgraphia, dyselxia AD(H)D and dyslexia. As the confidence grew, it was a natural progression to start my own private practice. Being a Raviv Practitioner is incredibly satisfying in that no two cases are the same. I am constantly having to research on how best to adapt the programme for different types of learning difficulties. The satisfaction of seeing children grow in confidence and develop the all important cognitive skills to start reading for enjoyment can be compared to the excitement and joy of seeing your own child take their first steps. To contact Usha Patel - Raviv Practice London - Telephone: 07766 837 616 http://www.ravivpracticelondon.co.uk

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'MANAGING ADHD (Attention-Deficit Hyperactivity Disorder) POSITIVELY' by Sue Atkins, parenting expert and author (March 2009)

As a Parent Coach and former Deputy Head teacher I have read the new report and recommendations by NICE (The National Institute for Health and Clinical Excellence) with great interest. There are an estimated 365,000 children in Britain diagnosed as having ADHD (Attention-Deficit Hyperactivity Disorder) which means they find it hard to concentrate, have extreme difficulty in sitting still, and find learning or concentrating very challenging too. These children are also very easily distracted and restless, have great difficulty remaining in their seats and find it difficult to wait their turn. They find it hard to play quietly or follow instructions, and often shift from one incomplete activity to another constantly interrupting others. For these reasons they also find it hard to make and keep friends at school and often suffer from bullying because of their disruptive and unruly behaviour.

Children with ADHD also suffer from very low self esteem and self confidence. It is therefore no wonder that parents of children diagnosed as having ADHD often feel despair, isolation and guilt as ADHD can make family life very difficult, frustrating and stressful, leading to many difficulties in family relationships.

The encouraging recommendations from this NICE report are that parents should be supported and given practical training and help in managing and caring for their child's ADHD, and that the use of strong drugs like Ritalin should be used more sparingly.

The needs of a child with ADD/ADHD can overwhelm families and make home life chaotic - but they don't have to. Parents can use strategies to influence and channel their child's behaviour and can use exercise, the natural environment, and possibly diet to alleviate and reduce their symptoms.

Living in a home that provides both love and structure is the best thing for a child or teenager who is learning to manage ADD/ADHD.

Parents need to develop patience, compassion and a positive, confident attitude to handling their child's behaviour. It also helps for parents to join a support group to talk, discuss and share successful strategies that work so they don't feel alone or isolated.

Tips for family life:

It is important to remember that your child with ADD/ADHD who is ignoring you, annoying you, or embarrassing you, is not acting wilfully or rebelliously.

Having ADD/ADHD is extremely frustrating and frightening for children as they want to fit in, to sit quietly, and make their rooms tidy and organised. They want to do everything their parents and teachers want them to do but they don't know how to. So if you keep this in mind, it will be a lot easier to respond to your child in positive, supportive ways.

One key attitude I work with parents to develop is the ability to genuinely believe in and find positive ways to support their child.

Here are some helpful tips to believe in and practically support your child:

1) Recognise and praise everything that is positive, valuable, and unique about your child. Look for their creative talent, their kindness, their ability in music or sport and praise them openly and often.

2) Trust and believe that your child can learn, change, mature, and succeed. Believe with strategies, techniques and perseverance you can help them mange their condition positively.

3) Let your child make mistakes and learn from them, but be there to comfort and support them when their mistakes upset and distress them.

4) Encourage and nurture their self-esteem by your unwavering love, approval, and support when things go wrong.

Managing your child's ADD/ADHD

Children with ADD/ADHD generally find it difficult to think and plan ahead, organise themselves effectively, control their impulses, or follow through and complete tasks. That means you need to take over as the administrator or manager, providing extra guidance while your child slowly acquires executive skills of his or her own.

Your most important attributes in this process are common sense and a positive attitude. Common sense will tell you which behaviours to work on the most, when to negotiate and when to stand firm, and how to head off problems before they start.

A positive attitude will help you see the small, praiseworthy successes that can add up to permanent improvement in your child's behaviour.

Tips for managing your child's ADHD:

1) Communicate - be clear and concise when communicating with your child. Give instructions one step at a time and make requests one at a time.

2) Be consistent - what you expect one day should be what you expect every day. Don't give in just because you're tired or the child is nagging. Be firm, be fair and be consistent.

3) Set a good example - show your child the behaviours you'd like to see. Be a model of patience, healthy habits, good manners and be organised. You are a role model in all you do, act and say, no matter how old your children are they take the lead and example from you.

4) Anticipate and avoid problems - know your child's triggers and what situations lead to problems. Become adept at heading off trouble before it starts.

5) Negotiate and consult with your child - try to avoid barking orders at your child and start a dialogue, and be open to what your child has to say. It creates respect and independence if you learn to listen attentively.

Using Rewards and Consequences to Promote Good Behaviour

REWARDS

1) Make a chart with points or stars awarded for good behaviour, so your child has a visual reminder of his or her successes.

2) Reward your child with privileges or activities, rather than with food or toys.

3) Change rewards frequently. Kids with ADD/ADHD get bored if the reward is always the same.

4) Immediate rewards work better than the promise of a reward in the future, but a system where small rewards lead to a big one can also be effective.

5) Remember, hugs, smiles, and praise are rewards, too.

CONSEQUENCES

1) Spell out rules and the consequences of inappropriate behaviour in advance.

2) Use time-outs and the removal of privileges as consequences for misbehaviour.

3) Take or keep your child away from situations and environments that trigger inappropriate behaviour.

4) Let your child know how you feel when he or she misbehaves.

5) Always follow through on what you say. Do what you say you're going to do, whether in reward or punishment. It is far better in the long run.

Remember, ADHD is not all that your child is - with the right attitude, support, nurturing, routines and boundaries, and diet who knows what your child can go on to achieve.

The future belongs to those who believe in the beauty of their dreams.

OUR EXPERT: Sue Atkins is a parent, a parent coach and the author of "Raising Happy Children for Dummies" one in the famous black and yellow series. Chapter 10 is all about alternatives to smacking and has lots of ideas and practical discipline strategies from toddlers to teens. To find out more about her work and to receive her free monthly newsletter packed full of practical tips and helpful advice for bringing up happy, confident, well-balanced children go to http://www.positive-parents.com