Premature & Health Challenges

The moment you've been waiting for has finally arrived, and you get to bring your premature infant home from the hospital. Even if this is not your first baby, you may have questions about how to take care of your premature infant at home. Preemies are different from full-term babies, and have different needs. Feeding, preventing illness, safety, and general baby care are all a little different for babies who were born early.

Preparing for Discharge

In order to be able to properly care for your baby you will need to gain some practical skills. You will have to learn these skills from the nursing staff in the NICU. Make sure that you feel and are competent in the following skills before you are discharged to home:

• Know how and how often to feed your baby
• Know how to bath your baby
• Know how to soothe and calm your baby
• How to test your baby's temperature and when is it a fever
• Know the details regarding bowel movements, constipation and nappy rash
• Know CPR for your baby
• Find out when your follow-up visit is scheduled with your pediatrician as well as your baby's immunizations

There are however, some guidelines you can use when your baby is ready to go home:

Choosing a pediatrician and making medical appointments

Don't wait until the last minute to choose a pediatrician. In addition to the usual questions, ask whether the doctor cares for many premature infants. Ask when you should schedule the first visit with the pediatrician — usually with a week of discharge from the hospital.

Medical insurance coverage

Call your insurance company and ask to have your baby added to your policy. Also, apply if your baby is entitled to a Health Care Card (Hospital Card) from the Ministry of Health.

Outfitting your vehicle with proper car seats

Before heading home, your preemie will need to be in an infant-only car safety seat with a three-point harness system or a convertible car safety seat with a five-point harness system. Most car seats need to be modified with padding or head supports so that a preemie's head stays in a position that keeps the airway open. Because of potential breathing problems, it's generally recommended that parents limit the time a preemie is in a car seat to an hour or so. If you'll be traveling longer than that, ask your doctor if it is OK for your baby.

Discharge debriefing

Arrange a meeting to review medical care before discharge, confirm follow-up appointments, and allow your time for questions about your baby. All debriefings should include a thorough discussion about caring for your preemie once you're home. Make sure you understand all the instructions and advice, and ask questions. When you leave with your baby, make sure you have the telephone number for the NICU. These professionals can be a valuable resource, especially in the gap between discharge day and the baby's first doctor's appointment.

Avoiding Infections

Expect to live quietly with your preemie at first. Because their immune systems are still developing, preemies are susceptible to infections. Therefore, you need to take some precautions. Visits outside the home should be limited to the doctor's office for the first several weeks, especially if your baby is discharged during the winter months. Because doctors' offices commonly have several kids with viral infections, try scheduling your appointment as the first of the day or request to wait in an examining room instead of the main waiting area. Try to limit your baby's contact with other kids and adults during the first weeks. Most doctors recommend not visiting public places with preemies. And limit visitors to your home: anyone who is ill should not visit, nobody should smoke in your home, and all visitors should wash their hands before touching the baby.

Sleeping

Babies' success at feeding and sleeping is important to their health. Expect your preemie to sleep more than a full-term baby, but for shorter periods. All babies, including preemies, should be put to sleep on their backs, to reduce the risk of sudden infant death syndrome (SIDS), unless your doctor has advised otherwise. Keep your baby in your room for the first few weeks, in his own crib. Make sure your baby rests well away from radiators or heaters and out of direct sunlight.

Feeding

Most preemies need 8 to 10 feedings a day with no more than 4 hours between each — any longer and the baby may become dehydrated. Approximately, 5-6 wet diapers per day show that the baby is getting enough breast milk or formula.

Bonding

Take advantage of these quiet weeks together to enjoy skin-to-skin contact, also known as kangaroo care. The intensive care nurseries encourage parents to begin kangaroo care prior to discharge; the nursing staff can show you how. Research indicates that kangaroo care can enhance parent-child bonding, promote breastfeeding, and improve a preemie's health.

Correct Temperature

You need to make sure that you keep your baby at a temperature that is comfortable and safe. The best way to do this is usually with layers - for example, a vest, a sleepsuit and blankets or a zip-up sleeping bag as necessary. You can easily add or remove an item depending on how warm or chilly the surroundings are. Your baby may get cold very quickly - especially if left undressed, for example after having a bath, also equally important not to overload your preemie with clothes and blankets. Use lightweight blankets - never duvets or pillows, keep bedding away from your baby's face, and tuck it in firmly

Washing your baby

Will depend on how premature and the condition of the skin is. For most babies - whether premature or term - plain water is fine for the first few months of life. This includes at nappy changing - initially you should just use water and soft cotton wool.

If your baby has dry skin

Don't use any kind of moisturising product without asking your pediatrician for advice. You can gradually start introducing gentle baby products and wipes as your baby becomes older and the baby skin more robust.

When your baby's skin is wet

It will become cold very easily. Each time your baby becomes damp and dries off, loses some body heat. Always wash in a warm, draught-free place, and have a towel close by to wrap the baby in and dry afterwards

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Constipation

Is to give a little cooled boiled water between feeds, and to gently push your baby's knees into his tummy one at a time, to help get his bowels moving. However, talk to your pediatrician, who may alter the mix of the formula you are using, or may prescribe glycerine suppositories

Gastro-oesophageal Reflux

What you can do is, to try nursing your baby on a tilt, with the head much higher than the rest of the body. Sometimes the doctor may prescribe a thickener to add to the milk. However, this is not a trouble-free option, as it can cause diarrhoea, coughing and feeding problems. Reflux tends to ease naturally over time as your baby's digestive system grows.

Colic

It is very common in young babies. We do not know exactly what causes it, but it may be linked to an immature digestive system. The problem usually resolves itself after three or four months. Trying drops to help with wind or to help digest the lactose in milk. Changing your baby's diet - either by cutting dairy out of your own diet if you are breast feeding, or by switching to a hyper-allergenic formula, if your baby is bottle fed.

Ways to soothe your crying baby

• Keep the room quiet and dimly lit
• Cuddle your baby or give kangaroo care.
• Take baby for a drive or a walk in the buggy, the movement may soothe them.
• Give something to suck.
• Gently push the knees into tummy in a cycling motion, to help with wind.
• Rock or gently walk around the room.
• Bathe in warm water.

Diarrhoea and vomiting

Usually is caused by a bug. Tummy bugs are common among young children, but they can be serious for babies because of the risk of dehydration. The most important thing you can do is to keep your baby well hydrated through the illness. Breastfeed frequently, or give cooled boiled water mixed with rehydration salts (available over the counter - talk to the pharmacist for advice). Even if you are breastfeeding, you can give your baby extra liquids by cup, spoon or bottle.

Contact your doctor immediately if your premature baby

• vomits more than three times within 24 hours
• has diarrhoea six or more times in 24 hours.
• has fewer than six wet nappies in 24 hours.
• has a dry mouth.
• has a sunken face, eyes, or fontanelle (the soft spot at the top of the head)
• Is very irritable.

A Cold

Symptoms include a runny or blocked nose, a cough and a temperature. It's very normal for babies to get colds, but it can be uncomfortable for them, and they may be irritable or have difficulty sleeping. If your baby seems to be in discomfort or has a high fever, you may want to give some Calpol or Nurofen. You can buy this over the counter from the pharmacist. In premature babies, however, a cold can develop into more severe complications, so if you are at all concerned about your baby, contact your doctor. The common cold can develop into the following, more serious illnesses.
1. Flu It's easy to confuse flu with a severe cold, but if your baby has a temperature of more than 38C and is shivery, may have flu.
2. Chest infections If your baby has a high temperature, wheezing, shallow or rapid breathing, a rapid heartbeat or goes off the food, or if the muscles in the chest are sunken in, may have a chest infection such as bronchiolitis.
3. Ear infections If your baby develops a high temperature three to five days after cold symptoms start, seems very ill and distressed, and keeps pulling its ear, could have an ear infection.

When to go to the doctor

• If you think your baby may have a chest or ear infection or seems dehydrated, or the fever isn't coming down, go to your doctor as soon as possible, as he may need antibiotics to prevent further complications
• Flu is not normally treated with medication, but if your baby is considered to be at high risk, he may be given an antiviral drug. Intensive Health Care at Home

Children can need intensive health care at home after they have been in the hospital for many different reasons due to prematurity. Medical equipment and devices can:

• function as a monitor
• provide nutrition.
• provide oxygen
• help with breathing
• be needed for giving certain medications

In each case, it's vital as parents, to learn about the medical devices and equipment that your child depends on. During the transition from the hospital to home health care, families will have a support network to lean on, including a team of medical professionals — such as doctors, therapists and equipment suppliers. The process of getting comfortable with your child's home health care begins at the hospital. Learn from the medical staff by closely observing how they take care of your child and how they operate the necessary equipment. Be sure to ask questions about anything you don't understand. Ask if you can start practicing in the hospital so you are comfortable by the time you go home. Consider talking with families whose children require similar medical equipment or levels of care.

Training Your Family

Family members should learn how to use and maintain all medical equipment. They also should:

• understand the child's medical condition
• know how to detect problems
• know what to do in emergencies.
• learn CPR.
• know when to call your Doctor

The specific skills needed will depend on your child's condition. The nurses and doctors can help you understand what you may need to know.

Premature birth can affect the way your child develops therefore,

• Early intervention is important.
• Assessments from your healthcare team are crucial in ensuring that your baby gets the right care

Factors influencing your child's development:

• Earlier your child was born, the higher the risks, so you need to keep an eye out for any area where you think there could be a delay.
• Every child develops in their own unique way, and your baby's development will depend on a range of factors, including his genetic make-up, and the environment and influences around him.

Prematurity and growth.

Premature babies start small, and although they do tend to catch up as they get older, children born very prematurely still tend to be smaller and lighter than a term baby in most cases. With extra supplements available to support premature babies' dietary needs, this may change. Due to babies born prematurely,

• Will be considered in a high risk group for developmental problems and likely to have more assessments of their progress than a term baby would. This is because early detection and diagnosis of any potential problems is a key to prevention.
• Many low-birthweight babies are invited to attend follow-up or neurodevelopmental specialists so that the healthcare team can assess the baby's progress and intervene early where treatment is needed
• Follow-up visits will also be scheduled during the first years of their life.
• As well as looking at how your baby is developing, your Doctor will regularly check their weight, head circumference and height to make sure your child is growing as expected.

Understanding your baby's growth chart

You will be given a Personal Child Health Record Book, which has growth charts to help plot your baby's growth and compare it with the average growth for your child’s age.

• Ask your paediatrician to explain these Charts.

Developmental milestones

It's more helpful to view milestones as signals that some premature babies might need extra help. Throughout your child's early life, the healthcare team will observe the development and measure their progress against milestones. These are usually carefully worked out targets based on the average age at which children tend to develop certain skills. For example, 10-18 months is the average age when a child will start trying to walk on their own. These milestones have been designed to help professionals spot problems early.

Early babies are given time to catch u

Milestones will be assessed from the time of their due date, not from the time they were actually born. By the age of two, your child’s development will often even out with full term children, and you can use their actual birth date instead. In very premature babies, sometimes this is extended to three years of age.

Making progress, step by step

Going back to our example of the walking milestone, if your child doesn't start walking at 10-18 months, this does not necessarily indicate a problem, and your child may well catch up later on. The healthcare team will flag it up anyway, and may refer you to a specialist, as in some cases it could be a sign that he could need some treatment or therapy to support his development.

Using milestones to your advantage

You can use milestones to your advantage in two ways:

• to encourage your baby's development. For example, if you know that babies can start to roll over from about two months of age, you might notice your baby trying to flip over and might need a helping hand.
• to spot whether your little one could be falling behind. If there may be a problem in a particular area, you can seek advice more quickly.

Try to avoid comparing your child to others

It's easy to become very focused on comparing your child with other children. Some parents find themselves thinking of milestones as 'targets' that indicate the success or failure of their child. Instead, try to see them as signals that can open doors for you if help is needed. Missing a milestone doesn't necessarily mean that there's any kind of problem.

Premature babies are more susceptible to certain health problems than term babies, so your healthcare team will take special care when assessing your child's development.

Hearing and vision problems

Babies born prematurely are more likely to have problems with their eyesight and hearing, but in most cases treatment is successful and the risk is still low.

What causes hearing impairment?

Problems occur partly because the hearing system may still be developing at the time they are born, making these tiny body parts especially sensitive to noise. Also significant is the fact that premature babies are more likely to experience other conditions and treatments that can lead to hearing problems.

What causes vision problems (ROP)?

Retinopathy of prematurity is associated with excessive oxygen during the early weeks of a premature baby's life. In a term baby, as the retina (the light-sensitive lining of the eye) develops, oxygen is carefully regulated by the placenta. When a baby is born prematurely, it is hard to regulate the level of oxygen it receives. They are also more likely to develop retinopathy of prematurity, which can impair sight, but this can often be prevented if caught early on. Other common sight problems include squints and refractive errors.

Treatment for ROP

To prevent this, your baby will be checked carefully by an ophthalmologist (specialist eye doctor), and if there are signs of severe ROP then an operation will be offered to save your baby's sight. Many cases of ROP get better without treatment, and where the condition does have an effect, the problem is usually minor. This might mean, for example, that your child may be long-sighted.

Cerebral palsy

This is a group of conditions that affect movement and co-ordination. It affects about one in 400 children and is more common among babies born prematurely, with those born earliest being at highest risk.

Symptoms of cerebral palsy

The symptoms of cerebral palsy can range from severe to very mild, and include difficulties with:

• walking
• posture
• learning.

Help for children with cerebral palsy

The condition is managed with support from a range of therapies, including physiotherapy and occupational therapy, and with medication to help with stiff muscles, and sometimes surgery.

Bronchopulmonary dysplasia (BPD) Causes

BPD is a chronic lung condition that affects newborn babies who were either put on a breathing machine after birth who have received high levels of oxygen for long periods of time or were born very early (prematurely), whose lungs were not fully developed at birth. Risk factors include:

• Congenital heart disease
• Prematurity, usually in infants born before 32 weeks gestation
• Severe respiratory or lung infection

The risk of severe BPD has decreased in recent years

Symptoms

• faster breathing than normal
• belly sinking in with breathing
• pulling in of the skin between the ribs with each breath
• more coughing than usual
• panting or grunting, wheezing
• Shortness of breath
• pale, or blue skin colour that may start around the lips
• trouble feeding or excess spitting up or vomiting of feeding

If you notice any of these symptoms in your child, call your doctor or seek emergency medical attention right away.

Treatment

Infants with BPD may need oxygen therapy for weeks to months after leaving the hospital. It is very important for all infants with chronic lung disease to receive enough calories as they recover. Many will need tube feedings or special formulas. It is very important to prevent your child from getting colds and other respiratory infections, such as respiratory syncytial virus (RSV).

Possible Complications

Babies who have had BPD are at greater risk for repeated respiratory infections:

• such as pneumonia, bronchiolitis,
• respiratory syncytial virus (RSV) that require a hospital stay.
• Developmental problems
• Poor growth
• Pulmonary hypertension

Learning problems caused by prematurity

Although some children born prematurely do exceptionally well at school, a premature baby is statistically more likely to develop problems with learning that could require extra support at school. The later the baby is born, the milder the difficulty tends to be.

Behavioural difficulties associated with premature birth

Studies have found higher levels of conditions such as attention deficit hyperactivity disorder (ADHD) among babies born prematurely.

Attention deficit hyperactivity disorder (ADHD)

This disorder affects the way people behave. ADHD does not affect people's intelligence, but may cause learning difficulties. The symptoms of attention deficit hyperactivity disorder (ADHD) are:

• restlessness and fidgeting
• a short attention span
• impulsive behaviour.

Once the disorder is identified, it can be managed with therapies and medication.

If your child is referred to a specialist as a result of delayed milestones, you may suddenly find yourself with a lot of appointments, as paediatricians will often refer your child for a broad range of assessments, to make sure that nothing is missed. These might include:

• hearing and vision experts
• dietitians
• neurologists (specialists of the nervous system)
• geneticists
• other specialists, depending on whether your child has a specific condition.

Your child may also be seen by a:

• physiotherapist
• occupational therapist
• speech therapist

These experts will assess whether any therapies could help your child progress towards the developmental targets. After this initial spate of appointments, treatment will usually become focused on the specific areas needing support, and the process should settle down into a planned course of treatment or therapy.

Parents spend a tremendous amount of time caring for a preemie during the first few months at home. But it's also important to be good to yourself and not underestimate the stress of delivering earlier than expected. Women are supposed to have 6 to 8 weeks to rest and recuperate after giving birth, but a baby's premature birth may reduce that recovery time. In addition, those long days in the NICU take a physical and emotional toll. You might have a wide range of emotions during these first months. If your preemie has serious medical problems you may feel angry that the baby is sick or grief for the loss of that healthy, perfect baby you dreamed of bringing home. As well as feeling joy, love and happiness at the birth of your baby, this period can also be extremely stressful and overwhelming. It is not unusual to feel quite exhausted and unhappy or tearful for several months after having your baby. And as with all women recovering from pregnancy, mothers of preemies may experience the hormonal shifts or more serious postpartum depression. To make the adjustment of living with your new baby easier, accept offers of help from family and friends — they can babysit your other children, run errands, or clean the house so you have time to care for the baby or rest. Treat yourself well by getting enough rest, eating well, and exercising moderately. Seek support and encouragement from doctors, nurses, other parents in similar situations or support groups. And if you're overwhelmed or depressed, do not hesitate to get professional help for yourself so you can fully enjoy your new baby. Try to get some time to yourself…..

Adjusting to your new reality after premature birth

Staying strong for your premature baby is all about balancing her needs with yours. It's important to be realistic: life with a new baby is unlikely to feel the same as life before children. While your baby is in hospital, your daily routine may feel like a treadmill of hospital visits, expressing milk and sleeping. Social activities, hobbies and interests fall by the wayside for a while. You will feel unbelievably tired, and if your baby has health problems you will inevitably feel extremely distressed. There are still little things you can do to help. You won't be able to change the fact that this is a challenging time, but if you take care of your basic needs, you will find it a little easier to cope. You can expect to feel grief and anger – these are the feelings we experience when real life doesn’t live up to the future we expected.

Premature birth is a traumatic experience

Having a premature baby is a huge adjustment and it may take you a long time – and possibly professional help – to accept what has happened. When a baby is born prematurely, parents often feel shocked, confused, abandoned, powerless or guilty. Some feel grief because of what they fear the future may hold, and it is common to try to place blame for the situation on others. Emotional reactions are not always predictable.

Delayed reaction to premature birth

Some parents feel fine initially, and then suddenly feel overwhelming grief and distress several days or weeks later. Others find that a traumatic birth experience may stay with them for months or even years, and may need professional help to move on.

Experiencing grief after giving birth prematurely

It takes time for the mind to catch up with events and accept them. When you do come to accept something, this does not mean that it won’t cause pain any more, but you may feel calmer and able to think about other things too. Many parents experience feelings of loss and grief when their baby is born prematurely, for all sorts of reasons – for example:

• loss of an experience, such as having the type of birth you had planned, breastfeeding or close physical contact with your baby
• if your baby is in the baby unit, the loss of a comfortable, homely environment in which to care for her, and the loss of privacy and a sense of control
• a loss of shared experience with other mums or friends who can’t identify with your experiences, or when reading books, websites or email updates that don’t relate to your situation
• the loss of aspects of your earlier life, such as your career, social life, a full night’s sleep or simply a carefree existence without constant worries about your baby
• the sense of lost opportunity if your baby develops long-term health problems or disability
• a sense of unfairness - why has this happened to you and not others
• if your baby does not survive – although this is rare, very sadly a small number of premature babies do not make it.

Talking about feelings of grief

If you are experiencing grief and loss, it may help you simply to recognise and name those feelings. Talking them through with your partner or a close friend or relative might help. If the feelings become overwhelming, you might benefit from professional support.