Hospital stays – helping to make sense of it all

Hospital admissions for any procedure can be a time of great stress and disruption to your family. You may be feeling worried about the procedure, the anaesthetic or the recovery afterwards. There is stress around the logistics of looking after all your family while you are in hospital, and how you will all cope during this time. It is normal to have these feelings.

This may be your family’s first experience of a hospital system and can feel very confusing, with lots of unknowns. Family members are exposed to many new experiences, and at times it may feel that you will never make sense of it all.

Cleft New Zealand believes strongly that prepared, calm parents are in the best position to support their child and whole family through this experience

To follow is information on what to expect when you accompany your child for surgery.

Helpful Guidelines for Hospital….

Each hospital will of course vary in their schedule and timings, but generally most procedures happen in a similar way. For detailed information about your hospital refer to the District Health Board.

Pre-Admission

You will usually be informed of your surgical date approximately 2 weeks prior to surgery. If you need a longer period to plan, please contact the Cleft Co-ordinator.

You and your child may be required to attend a surgical preadmission clinic, 1-2 weeks before the operation date. If you do not receive an appointment, this check will be done when you are admitted for surgery on the day prior to surgery.

Important: If your child becomes unwell before surgery you need to visit your GP and pass on any concerns to the hospital.

Preadmission clinic’s purpose is to check your child’s health and therefore their readiness for surgery. This check is carried out by a House Officer.

Please note: The Plastic Surgeon is NOT present at this appointment.

Admission Day

You and baby will be settled into your room on the day prior to or the morning of surgery.

A staff member will come and introduce themselves. Nursing staff will complete a standard admission/patient history form and record your child’s temperature, pulse, weight and your child’s normal routines. If you haven’t had a preadmission appointment a House Officer will assess your babies ‘fitness’ for surgery.

Some wards accommodate one parent/caregiver only so make other arrangements for extended family to stay elsewhere- the Cleft Co-ordinator can help you with this.

If your surgeon requires them, a nurse will bring you a pair of arms splints, and show you how to use them.

The night before the Surgery is very low key. Settle yourself and baby into the room as soon as you are comfortable and we suggest you make the room your own, with your baby’s own familiar things. Continue on with baby’s normal routine and keep baby and yourself as calm as possible. Staff will come and visit, but there is no set time for this to happen.

Your nurse will be able to tell you when your baby’s surgery is scheduled. They are therefore also able to let you know when your baby is allowed to have their last feed. Then it’s time to rest up for the big day ahead.

Day of Surgery

This is a general description of what to expect on the day of surgery, but because each case is individual, there may be variations to this:

• Your baby will have nothing to eat or drink from 6 hours before surgery.
• Your nurse will tell you when the last feed for your baby should be, remember to wake up to give them this last feed.
• Your baby can be bathed and dressed in warm pyjamas. For surgery you can use the hospital supplied pyjamas.
• Nursing staff will complete a standard check list e.g. temp, pulse, breathing rate
• Your baby will be assessed by an Anaesthetist to ensure that they are well for surgery. It is a time when they can answer your questions.
• Your Surgeon may also visit prior to going down to theatre.
• Consent forms will be signed if they have not already been. Please ask questions if there is anything you are unsure about or don’t fully understand.
• Arm splints are placed in your baby’s cot with an extra nappy. Cleft New Zealand provides the arm splints, and the nursing staff will give these to you the night before surgery.
• A premedication may be given if the anaesthetist feels it is needed. This is to settle your baby.
• One caregiver may be allowed to accompany your baby to theatre with the nurse. At this time, please listen to the instructions of the theatre staff. It is important that you are able to leave when asked, allowing the staff to continue the preparation for your baby’s surgery.

After surgery

Your baby will be brought back up to the ward once stable and if you want to meet in recovery, let your nurse know.
For palate repairs you may have a special nurse for the first few hours back in your room to monitor your baby’s vital signs.

What to expect?

• For a lip repair your baby will look different so be prepared for mixed feelings.It is normal to feel a variety of emotions which can take you unawares – it is good to share them with someone you trust.
• Your baby will be quite sleepy. It may take a number of hours for them to be wakeful.
• They may be wearing arm splints.
• They will have a leur (needle) in their arm or foot which is used to administer pain relief, medication and fluids. Generally this leur will be splinted – meaning they will have protection around it to ensure it stays in.
• They will have a vital signs monitor on their finger. This reads the levels of oxygen in their blood.
• For lip repairs they may have a steri strip over the scar lines.
• They may have a bit of swelling around their nose and eyes, this will reduce over the next few days.
• There may be a little bit of blood around their nose and mouth.
• Some babies will not be hungry and others will be starving. Your nurse is there to help you monitor this. It is important for your baby’s recovery to be able to give them fluids so re-establishing feeding will be something nursing staff will monitor closely.
• Sometimes after palate repairs, babies prefer solids but they are only allowed very soft pureed solids. Sometimes it can take time for your baby to drink the same quantity they did before the surgery, but their appetite will return.

We’re here to Support you…

If you have any questions, please give Cleft New Zealand a call as we are here to support you emotionally through this time. PHONE

What Hospitals provide …

This is what most hospitals provide but it is a good idea to confirm first with your Cleft Co-ordinator or your Hospital’s Patient information.

• Bedding is provided for both you and your baby. The babies have a special ‘cleft’ cot, which is raised at the head end, and one parent has a bed and bedding provided.
• Pyjamas are supplied for babies, and it’s a good idea for them to wear the Hospital pyjamas to theatre.
• Arm splints are provided for your baby if your surgeon requires them. Your baby MUST wear these all the time after surgery for 3 weeks. This is so that no damage is done to the repair. PLEASE bring these back with you to your post operative clinic (approximately 6 –8weeks after surgery).
• Meals are provided for your baby, but it is a good idea to bring some of baby’s favourite foods. REMEMBER pureed only.
• Some brands of formula are available , but your baby is more likely to drink what they are used to, so you should bring some of their usual milk to the hospital.
• Sterilising facilities – It is a good idea to bring your own. Include a bottle brush and container to wash in if you do not want to use the public sink. NB; you shouldn’t be putting your teats and valves in Milton. (they will disintegrate quicker)
• Pain relief such as morphine and Paracetamol are provided.
• 3 meals per day may be provided for one caregiver staying with baby. There is usually a kitchen on the ward with a microwave, and tea and coffee making facilities. Check with your Cleft Co-ordinator.
• There may be a washing machine and dryer on the ward which could have restrictions due to Infection Control policies –ask about this first.
• Shower facilities are provided for parents – hospital towels are available and baby baths are also provided.
• There are some hospital pushchairs available, but your baby may feel more secure in their own, so you can bring it into the ward.
• There is a phone in your room, calls can be forwarded to your room. You can not make outgoing calls from this phone. If you want to make a short local call, this can be done at the nurses station.
• If you use disposables all the time, please bring your own as supplies can be limited at times depending on demand.

Check the Hospital Rules beforehand

Here are some general guidelines…

• Visiting hours vary but are usually 2pm – 8pm. This is so that you and your baby can get the rest that you need.
• Parents and grandparents can visit at any time.
• All hospitals and grounds are a no smoking area
• Dummies are not allowed following lip and palate surgery. 

What to bring from home…

The idea is to make your baby and yourself feel as comfortable as possible so when you are admitted to hospital the night prior to the surgery, settle in and continue your baby’s normal home routine. Other parents have given us feedback and collectively we have found the following helpful.

• Bring your baby’s normal feeding bottle and brand of formula. If expressing you will need to bring your own breastpump.
• Bring their favourite foods. Remember SOFT PUREED only for 3 weeks
• You will need lots of tops and bibs for both baby and yourself. A lot of dribbling goes on. It is a good idea to have button down tops for baby, so you don’t have to pull them over their head.
• Bring any medication your baby requires.
• Bring some snacks for yourself.
• Bring your own toiletries
• Bring your own pushchair and/or a front pack. It is tiring to carry a baby around.
• Leave all valuables at home, this is a public hospital.
• It is a good idea to write any questions you have down. That way you will remember them.
• If your baby is soothed by music, bring a CD player, cassette and their favourite tracks.

Think about how you are going to share the care for your baby post surgically. Make sure everyone in the family gets some sleep and some breaks.

FINAL CHECKLIST FOR HOSPITAL…

• Normal feeding bottle
• Steriliser & bottle brush
• Formula
• Breastpump
• Baby’s favourite soft /pureed food
• Snack food for me
• Baby’s clothes
• Baby’s bibs
• Nappies
• Baby’s favourite toys, books and comforters
• Music
• Pushchair and/or frontpack
• Baby’s medication
• List of questions
• Cell phone or Phone card (for outgoing calls)

If you have any other suggestions, please feel free to tell us about them.

CARPARKING

This varies at each Hospital so it would be wise to check first what you are entitled to, where to park, and what it may cost to avoid stress on the day.

Discharge

• Your nurse will advise you of the pain medication to continue with and the dosages.
• Before you leave the hospital get a contact number to ring if you have any concerns.
• Your surgeon will advise you on any cares for the suture line. If you have heard of any scar management techniques, check this out with your surgeon first.
• Arm splints need to be worn for approximately 3 weeks.
• Maintain feeding pattern as advised by your surgeon.
• Maintain pureed food for a further three weeks
• Keep sharp objects, toys, clear of the cot to avoid trauma to the mouth
• Try and keep away from places to avoid catching a cold e.g. playcentre kindergarten.
• Attend an outpatient appointment in approximately 6 weeks. This is a combined clinic. You will receive notification of this clinic in the mail.

PLEASE RETURN YOUR ARM SPLINTS WHEN YOU ATTEND THIS CLINIC – we use them for other families.

At Home…

This can be a stressful time for the whole family and it often takes time to recover from the surgery and to re-establish your family’s routine. Baby will be getting used to a new mouth and may not be sleeping or feeding as usual.

Anaesthetic can knock even adults around, so babies will also be feeling a little out of sorts, but you will all come out ok at the other end. It can often feel that you have a brand new baby in more than just looks, but remember that you know your baby best and the wee person you know will come back a little more each day.

However, if you are feeling overwhelmed try and focus on the positive benefits of the repair and remember this will not last forever. Maybe share your feelings with someone you trust or write them down- it can often feel like a release.

Patience and adaptability are good strategies, but sometimes you just need a break so make sure you have a support network that you can call on when you need to.

Call us…

If you would like someone to talk to, ring Cleft New Zealand on 0800 4 CLEFT. All of us are parents of children born with a cleft, so understand some of what you are experiencing.