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At last, it is time for you to take your baby home. This is an exciting time, but you may be nervous about being fully responsible for all your baby’s needs from now on. You and your family need to be prepared to take your baby home on oxygen and know what support is available to you.
We all need oxygen to breathe. The air we breathe contains about 21% oxygen and the rest is mostly nitrogen. The oxygen is breathed into the lungs and carried to the rest of the body by the blood cells. When the lungs are damaged, we have to increase the oxygen breathed in so that enough gets through the damage into the blood cells. We can do this by adding a low flow of oxygen to the air that the baby is breathing by putting it into their nose.
Most babies needing oxygen for a long time have a condition called chronic neonatal lung disease (CLD). Chronic means something that it lasts for more than a few days or longer than it should. This condition is usually seen in premature babies whose lungs have become damaged by ventilation and immaturity. Having chronic lung disease means your baby has to put a lot of effort into breathing. This is also important to your baby’s growth and development.
In older infants, lungs can become damaged by repeated viral infections. These will result in scarring and the tubes carrying air into the lungs become narrowed. The baby has to work harder to move air and you can see the chest wall and ribs being sucked in when breathing.
In more serious cases, the babies need more oxygen so they have enough oxygen to stay healthy. However, the damage to the lungs will get better with time as the lungs grow. In some cases it takes a year or more before we can see things getting better, and in other cases, the babies have come off oxygen in a month or two. In the long term, we would expect most babies with CLD to be off oxygen by about 6 to 12 months of age, with a few babies taking a bit longer. Older infants will take longer.
There are two ways of supplying oxygen at home: cylinders and a concentrator.
An oxygen concentrator works by taking in room air and removing the nitrogen. This gives more oxygen and delivers it through the oxygen tube to the nasal cannula to your baby. The rest of the air is returned to the room.
The oxygen company install this and talk with you about the best place for it. The concentrator has to be installed in a well-ventilated area to make sure there is fresh air. The tubing is usually long so you can move around easily. Concentrators do make some noise but are less trouble than cylinders.
The oxygen company will check the concentrator every 3 to 6 months and check how much electricity the concentrator has used and refund you. There is a sponge filter in the concentrator which needs to be cleaned once a week. The engineer will show you how to do this.
The oxygen is delivered through oxygen tubing from the cylinder to the baby. A low flow valve is attached to the head of the cylinder to tell you how much oxygen is being delivered.
You will have portable oxygen cylinders so that you can go out. Always ensure you have enough oxygen in your portable cylinder before going out and make sure your spare is refilled immediately.
There will be a large backup cylinder in your home in case of a power cut or failure which would mean the concentrator wouldn’t work. Do not use this for other purposes as it is important to have it for emergencies
If you live in rented or Local Authority housing, it is important to inform the owner or council that you will be having oxygen in the home. It is also important to inform your home and car insurance of the use of oxygen. It shouldn’t cost any extra.
It is important to inform your gas and electricity suppliers also.
It is important that you have a working telephone in the home for emergencies. This can be a mobile if reception is good.
It is important that you are able to go out of the house with your baby on oxygen. Always check the oxygen level before leaving the house.
Your baby is very likely to get viral infections so you should try to keep them away from anyone who has a cough or a cold. This is likely not possible if you have other young children in the house, but any unneeded contact should be limited. Avoid children’s clinics and hospital waiting rooms, as they are usually full of germs.
Taking the baby into the park or to the shops is ok, but you may have to be strict with friends and family who have a cold or a poorly child with them. Large shopping centres such as Meadowhall are normally a bad idea.
Older infants and children are still vulnerable to infection but need to access schools and nurseries for their learning. Speak to the home oxygen nurse for advice.
These should be carried out as usual. In early winter, it is a good idea to get a flu jab if your baby is more than 6 months old.
This is often a problem as babies with chronic lung disease use a lot more calories than other babies, and sometimes we need to give high calorie feeds. If your baby has particular problems with feeding or vomiting, we may need to give treatment for ‘Gastro-oesophageal reflux’ which is the leakage of stomach contents back into the throat and is more common in babies with chronic lung disease. Sometimes a speech therapist will be asked to advise on feeding techniques.
When visiting hospitals or the GP, you can ask if there is a separate waiting area that you can use. You could also try for the first appointments available. We will probably want to see the baby 4 to 6 weeks after going home. Discuss travelling to the clinic with the home oxygen nurse.
In general, this should not be a big problem. If a baby needs a higher flow rate of oxygen (such as 0.5 litres or more) then they will probably become irritable and restless quickly if the oxygen is not on.
It is better for the lungs to have a large and continuous supply of oxygen all the time, but no serious damage will result from a short stopping period.
It is important for your baby’s progress that they are given the right level of oxygen, as this helps them breathe, grow, put on weight, and support development. If a baby does not get enough oxygen in the blood it can lead to poor growth, poor development, and in some cases lead to high blood pressure in the lungs (pulmonary hypertension), which can be very dangerous.
It is understandable that parents want their baby to look like other babies without tubes, and in time this will happen after close follow up from your nursing and medical team. The paediatrician or home oxygen nurse specialist will tell you the level of oxygen required for your baby.
Oxygen levels should only be altered with the health professionals’ advice. Reducing or increasing oxygen over a long period of time without medical advice can be dangerous to your baby.
The home oxygen nurse will visit you at home to take saturation readings. They will monitor your baby’s oxygen saturation at each visit using an oxygen saturation monitor like those used on the Neonatal Unit. They will leave one at your home for overnight readings and when coming off oxygen. They will visit once you have left the hospital to make sure you are happy with the equipment and then visit weekly to begin with, but less often once you are more confident.
When your baby is very premature we are very careful to get the oxygen level right as there are dangers from high oxygen levels too. When the baby reaches their due date there is little concern about having a slightly high oxygen level. We can only monitor your baby during quiet periods and it is likely that the oxygen levels will be lower during crying or activity, so it is best to aim for a slightly high saturation level.
Before you leave the hospital, you will be shown how to check your baby’s normal breathing pattern and see if there are changes. Here are some points to remember if you think your baby is not well.
Know what your baby’s normal rate is when awake and asleep. If it is increased at rest, your baby is breathing harder and this may hint at a problem.
Be familiar with the way your baby’s chest moves. Notice a ‘drawing in’ between or below the ribs and at the bottom of the chest. This is known as recession. There will probably be an increase in the amount of recession if your baby is unwell or if there is a problem with the oxygen supply.
A change in your baby’s normal colour is a good sign that there is a problem, either with the baby or the equipment. The lips and nail beds are the best areas to check colour.
Listen closely to the sound your baby makes when breathing. If there is a louder sound, or you hear a wheeze or grunt on breathing out, this can also be a sign that the baby is having to work harder to breathe and is normally linked with increased recession.
If any of these changes occur quickly, it will probably be due to a block or failure in the flow of oxygen to your baby. A slow change may hint that your baby is not well
If in doubt, call 999 for an ambulance.
Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.
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