Hearing the word “Home” on the neonatal unit is exciting but can also be daunting. Going home with your baby may have been all you have thought about for weeks or even months. The reality is going home can be stressful and it is important families feel supported. Some babies may go home with complex needs and will require lots of input from health care professionals. It can take time to build up trust with new teams and parents can often be left feeling frustrated and confused by the difference in care.
What to expect from the discharge process
You may get the opportunity to room in with your baby prior to going home. This means you will spend a night or two with your baby in a bedroom which is still on or very close to the neonatal unit. This will give you the opportunity to care for your baby overnight but still have the support of the neonatal staff if you feel you need them.
You may be offered a discharge planning meeting before your baby goes home. This will be arranged by the neonatal staff and is a way of bringing together the teams who will be helping you care for your baby. Some of the people you can expect to be present are: your baby’s consultant; a neonatal nurse; your health visitor; a member of the outreach or community nursing team. The meeting is a good opportunity for you to ask questions so it may be worth jotting down anything you can think of before the meeting. Questions you may want to ask could include: Who will weigh my baby? How will I get my baby’s prescriptions or formula? Who do I contact if I am concerned about my baby? Remember the purpose of this meeting is to support you to take your baby home and no question is a silly question.
Going Home on Oxygen
Taking a baby home on oxygen can be very daunting but lots of babies do leave neonatal care on oxygen and parents are well supported in the community. Before going home from the neonatal unit with your baby it is a good idea to make sure you feel confident in changing your baby’s nasal cannula. Find out where you can get replacement cannulas and stickers, and make sure you understand when and how to order replacement oxygen. If you take your baby home on oxygen you will be supported by an outreach or community nursing team. This means you may have lots of people calling to see you at home. It can take some time to get used to and can be exhausting initially but you do get the hang of things very quickly.
Some babies can go home when they are still being tube fed. This may be a temporary or long term plan, depending on your baby’s needs. You will definitely be trained and confident in tube feeding before you take your baby home. You will also be supported at home by the outreach or community nursing team. Before you take your baby home make sure you have all the names and contact telephone numbers of those who will support you.
Going home doesn’t mean that input from health care professionals ends. You may find yourself managing lots of appointments and visits for your baby. A good idea is to make a list of all the people who may have an input into your baby’s care before you leave the neonatal unit, and make sure you have contact numbers for them. Make sure you have a diary or calendar to log your appointments so you don’t get confused. Equally your baby may go home with very little input from health care professionals and this can make you feel uneasy. You have gone from having a safety net of doctors and nurses to feeling alone. It can help to make sure you know who to contact if you do have concerns about your baby. If this is done before you leave the neonatal unit it may alleviate some of the stress at home.
How can we help?
We offer a peer matching service. If your baby has a particular condition or syndrome, or you are in unique situation, we can match you with another suitable parent who has had a similar experience and arrange contact to suit you both. This service offers an opportunity for you to access informal support and share experience and tips with someone who will totally understand the challenges you are facing. They may also be able to introduce you to more specialised support which they have access to.
If you would like more information on our Peer Matching Scheme please contact us.
Parents can access any of our community support groups and are welcome to bring along siblings. We know coming to groups for the first time can be daunting so parents are also welcome to bring along their parents or grandparents if that helps.
You will find more information on our community groups here.
Our private parent support Facebook group is always open to parents and a good place to access support if you can’t get to groups or are not quite ready to come along. You will always find someone on the group who can offer some advice or even just listen to your concerns. Our Facebook group is a safe and understanding environment where parents can discuss their concerns and fears without being judged.