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Feeding and First Steps

As a parent or caregiver you have a unique and in-depth knowledge of your child; no one knows your child better than you. You are an important part of your child’s team so never be afraid to ask questions – the team is there to help and no question is considered too small or unimportant.

In fact the medical team needs that personal knowledge you have of your child to help them make the best decisions for care. As a parent you know what each cry means; how your child communicates when they are tired, hungry or unhappy. You know the best way to settle them and offer comfort. No one else can do these hugely important tasks quite like you do or as well.

First Steps

Here’s a checklist of practical steps to take in those first few weeks to get your baby’s health, wellbeing and future treatment well under way…

  • Make sure you have a copy of the BLUE BOOK and use it to record all the details for your baby, and as a quick information reference. This comprehensive book highlights points you might want to consider, and questions to ask at each stage of care. By writing down your questions you’ll find it easier to get all the information you want from a meeting with professionals.
  • Print out a copy of the MILESTONE CHART and use it to guide you through the stages to come.
  • Ask for a Speech Language Therapist to visit you and if you require specialised feeding bottles they will organise them. This should be easy, it it isn’t give us a call on 0800 4 CLEFT  (0800 425 338)
  • If you have decided to express milk, we suggest an electric breastpump to make it easier. Hire from your local pharmacy, or your maternity unit will have a list of suppliers.
  • Arrange for a member of your Cleft Team to fill out the Child Disability Allowance Form. You will need to take the signed form to Work and Income New Zealand.
  • Ask for a Paediatrician to do an assessment of your baby – this is to rule out any other health issues
  • If you haven’t already met them, go to a Combined Cleft Clinic and the team who will look after you and your baby. They will be able to answer your questions and give you an outline of your baby’s Care Plan.

What to expect in those first few months…

PR SEQUENCE
Apnoea monitors may help to ease your anxiety at night. Ask your cleft unit for some advice on whether you require this and where to get it from. Over the first year many of your baby’s swallowing and choking issues will disappear as their bottom jaw grows.

ORTHODONTIC PREPARATION
Cleft lip & palate babies may need some pre-surgical orthodontic preparation, such as ‘Taping or a Bonnet’ to move the lip into a more centralised position, or a ‘Plate’ that is worn in their mouth to move the tissue in the mouth into alignment. Both these preparations make it easier for the Plastic Surgeon to achieve best results.

ENT & AUDIOLOGY CHECKS
The cleft unit will organise for your baby to have their hearing monitored. This is a precautionary practice as our babies are prone to middle ear infections which can affect their hearing if left untreated.
For more information go to Medical Facts.

Feeding -You have choices

Feeding your baby need not be a problem and can be just as satisfying and rewarding as with any infant. Most importantly it should provide nourishment and be a pleasurable experience for both parent and baby.

Babies born with a cleft lip may be able to breastfeed.  Those babies born with a cleft palate may find it very difficult to establish breastfeeding as they find it difficult to suck.

Whatever your final decision regarding feeding will be, it needs to work for you, your baby and the rest of the family.   Sometimes there is alot of emotion around this decision. Remember to talk to people and find the support you need to make the right decision for all of you and feel OK about it.

Find more detailed information on feeding options here. 

Expressing Breastmilk

If you are not able to breastfeed, you may still choose to express breastmilk and give this to your baby in a specialised feeding bottle. Expressing is a skill different from breastfeeding and it takes a bit of time and practice to establish a good supply.

First Days

In the days following birth, your breasts will produce Colostrum (a thick yellowish fluid) which is packed full of nutrients and antibodies. It may be too early to start with an electric breastpump as your nipples will be quite tender and Colostrum is more effectively expressed by hand. This is probably the first time you have done this and it will take a while to learn the technique. Be prepared to let a nurse/midwife or lactation consultant demonstrate the best method. Initially you will only be able to express a few mls. at a time – this is quite normal and the volume will increase with time. Every drop you express is precious so make sure your baby gets it.

The idea is to express whenever your baby is hungry – you are mimicking the normal feeding pattern so this will mean expressing as often as you can. At this stage your baby will probably be fed using either a teaspoon or a small cup. If your baby is hungry consider giving him/her some formula to keep their strength up. It is important to stimulate your breasts to bring in the milk (an important trigger is supplied by putting your baby onto the breast to attempt to breastfeed, hand expressing will also help). You and your baby may enjoy spending time together either attempting to breastfeed or letting your baby lick/play with your nipples. This can be very frustrating as right from birth a baby wants to be able to breastfeed and can smell the milk but can’t understand why they can’t get to it – try directly hand expressing into their mouth.

When the milk arrives

Within a few days you will notice an increase in the amount expressed and a change in colour from the yellow Colostrum to a milkier colour. As the volume of milk expressed increases, using a teaspoon or small cup no longer becomes practical. You should by now have been seen by the Hospital Lactation Consultant (if you haven’t, ask to speak to one), your Plastic Surgeon and referred to a Speech-Language Therapist who will advise you on bottles to feed your baby with. At this stage you might like to consider either purchasing or hiring a breastpump.

Breastpumps

If you are serious about expressing milk, it is worth investing in an electric breastpump rather than a manual one. An electric pump will not only shorten the amount of time you will spend expressing, it will also help to keep your supply going as they are supposed to mimic the way a baby feeds.

There are two different types of electric pump available in New Zealand:

Mini-Electric Pump can be purchased from Chemists or baby care shops and will only express one side at a time. They are ideal as a back up to a larger pump or to take out (they use mains electricity or AA batteries). A double mini-electric (by Medela) is now available in NZ. These pumps are not designed for long-term expressing so don’t rely solely on one of these.

Larger Pumps which allow you to express from both breasts at once, can be hired from a Chemist –just call F&P Healthcare customer service on 0800 800 631 for your nearest stockist. Your local hospital or Parent Centre may also have similar pumps available for rent. It is well worth shopping around and negotiating if you can, stating that you are feeding a child with a cleft and expect to be using the pump for many months. Prices vary widely. You will also need to purchase the tubing and plastic cups– check with your local support group to see if anyone has a set they no longer need.

The disadvantage of these pumps is that they are large and do require a power source. However,the big advantage is that you can express both sides at once which saves time and helps to stimulate your supply.

A word of caution – these large pumps rely upon mains electricity, so in case of power cuts you will need either a mini-electric pump with batteries, or hand pump which you are confident using.

A continuous supply

In the early days when you are engorged with milk getting enough to feed your baby may seem relatively easy. However, as things settle down your body will come to terms with the fact that it does not have a nice, sweet smelling baby to extract milk. Instead you are using a noisy, cold electric pump and you will probably find your milk supply dropping off.

There are many herbal remedies you can try (speak to a herbalist personally before trying anything, some ideas are: Blessed Thistle, Lactogogue tea, Fenugreek, Brewers Yeast, and Fennel). There is also a drug available on prescription in New Zealand called Maxolon that may increase your supply (it can also make you more tired though).

The most natural and effective method is to apply the same principles that are used in breastfeeding to increase supply

  • Increase the number of times you express each day. As a general rule try to keep in line with the number of feeds a baby of that age would take – in the first few weeks this is a minimum of 6-7 times in 24 hours. Practically this works out to expressing every three hours during the day, plus (if you are up to it) once during the night. Nighttime expressing during the first two weeks is ideal due to high prolactin levels at this time. To increase supply you may need to express every 2 hours for a couple of days. This will seem very hard work and requires a lot of self-discipline but does pay off.
  • Plenty of rest, nutritious food and lots of liquid (try to always have a glass of water on hand when you are expressing).
  • Look after yourself – you are doing a very important job and it is hard work. Be prepared to ask for help when you need it – your partner, family, friends, Plunket, etc.

Storage Guidelines

Breastmilk storage guidelines seem to vary widely between publications but here is a conservative guideline you may find useful- Breastmilk should retain its nutritional and immunological properties for a few hours at room temperature, up to 8 days in the back of the fridge (not on the door), and for up to 4 months in the freezer. Always label with an expressing date, time and expiry date. Frozen breastmilk should be thawed either overnight in the fridge or by placing the container in some lukewarm water.

A microwave should not be used as it causes damage to milk components.

Helpful Expressing Tips from other Mums

  • Get in a comfortable, warm position before starting to express – try to relax into it.
  • Do something fun and relaxing – watch TV, read a book, surf the net! Distract yourself from the inconvenience of being attached to the pump.
  • Massage the breasts, both before pumping and whilst on the pump. This will increase the volume and give a higher fat yield i.e. More calories.
  • Picture in your mind the milk being released.
  • Warm up the breast tissue before pumping – a warm flannel or wheat-bags are ideal.
  • Look at your baby whilst expressing, or have a photo and/or an article of clothing which smells of your baby nearby.
  • To aid letdown, make a tape of your baby crying (or listen to the real thing!)
  • If expressing off one side at a time, try propping your baby up on the other side to stimulate the nipple. Requires a lot of coordination but both you and your baby may enjoy this close time together.
  • Try hand expressing direct into the baby’s mouth – this will help stimulate your supply and can be close to doing the “real thing”.
  • Express until your breasts are empty – this stimulates your body to produce more. It is well worth expressing off the last few drops by hand to be sure that the breasts are completely empty.
  • Take one day/week at a time – you will know when the expressing is getting too much and it is time to wean onto formula. Follow your instincts and don’t be pressured by others views – this is your body and your baby, do what is right for you.
  • If supply drops off, spend a weekend “re-lactating”. Get some help for the baby/other children and concentrate on eating, sleeping, and pumping.
  • Cut out caffeine and, as it will reduce your supply.
  • As with breastfeeding, drinking alcohol is not recommended.
  • Freeze any excess milk – you never know when you may need it! If you have given up expressing by the time your baby has its operation, you may be able to give thawed breastmilk post-op (check freezing guidelines first).
  • If you have other children be aware of the effect expressing milk has on them – it is very time consuming. Perhaps try spending time with them whilst expressing – with some practice and ingenuity you will be amazed at what you can still do whilst on the pump!
  • Try to get in contact with other Mums who are expressing or have done so recently for emotional and practical support.

Other sources of information:

Lactation Consultants-You should be seen by a Lactation Consultant whilst in hospital, if not speak to your Lead Maternity Carer and insist on seeing one.

Cleft New Zealand-Make contact with other mothers who have/are expressing milk for the cleft lip/palate baby.

La Leche League – Breastfeeding mothers support group – see your phone book for local contacts.

Gastric Reflux

Whatever method you use to feed your baby and whatever food (breast or formula), you may experience your child regurgitating a lot of its feed. Most babies do spill some of their feed so don’t immediately assume it is reflux without a professional diagnosis.

Reflux is due to a weak sphincter muscle at the lower end of the oesophagus near the stomach, which does not close properly, allowing gastric juices to flow back up the oesophagus. Milk and acid spills out the baby’s mouth and in the case of children with cleft, the nose as well. Babies can also suffer from silent reflux ,which is difficult to diagnose because baby does not experience milk spilling, but has all the other symptoms associated with reflux.

Symptoms for both types of reflux may include:

  • Difficulty feeding.
  • Continuous crying.
  • Unable to settle.
  • Dramatic change from happy when being carried upright to very grumpy when being laid down due to the pain of gastric acid flowing the wrong way.
  • Baby only takes short naps compared to other babies of the same age due to pain and hunger.

See a health professional – Get onto it really early – discuss your concerns with your Plunket Nurse or Doctor and ask about using Gaviscon or a food thickener to help lessen the amount brought back up. There are also various drugs available on prescription which may help – talk to your Doctor. A cranial osteopath trained in the treatment of babies may also be able to help.

Handy Reflux Prevention Tips from Parents

  • Prop baby up after eating for at least 20 minutes.
  • Use a reflux formula or thickener if expressing.
  • Try feeding baby small amounts often.
  • Do not be afraid to get medical help for the problem.
  • Do not be afraid to try different things, as every baby is different. But do give things a little time to work.
  • Do not lie them straight down or sit them on your knee to burp them. Place a towel over your shoulder and gently rest baby so their body is straight with their head on your shoulder and pat them or rub them gently on the back.
  • At bedtime raise the head end of the cot and “short sheet” the cot or use a “Safe-T-Sleep” (available from baby equipment shops) so that baby doesn’t slide down the bed. Always sleep baby on his/her side so that any reflux can drain away and remember to alternate sides at every sleep. A clean cloth nappy under baby’s head saves on sheet washing and provides a clean place to lay their head each time.
  • A foam wedge can be useful for a child in a bed. It allows the upper body to be slightly elevated but the bed to remain flat thereby reducing baby sliding down the bed.
  • A small sip of cooled boiled water after a reflux attack also helps baby clear their mouth and gets rid of a nasty taste. If they have a dental plate fitted, don’t forget to clean it regularly, especially after each feed and after an attack.
  • Plastic-backed bibs are essential! Make your own with PVC raincoat material and towelling – make them big and they will be useful for solids too! Also take extra clothes for baby when you go out, reflux babies don’t stay clean long and it pays to take at least a clean top for yourself too!
  • Persevere with tummy time between feeds – protect flooring with a towel or cloth nappy. Gaviscon or Reflux formula helps reduce the burning pain of reflux and makes tummy time more bearable.
  • Wet wipes or a wet cloth in a plastic bag are handy to always have with you when you have young children. Wash out bibs and clothes as soon as possible to avoid staining.
  • Have a sense of humour, and develop a loving relationship with your washing machine!
  • For further advice and support you could look at the New Zealand Gastric Reflux Support Group’s website

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