If you had an experience anything like my family's, you have gone through periods of stress, uncertainty and fear. It is such a relief on the heart to be told it is finally time to go home.
Although your child may be ready for discharge, this does not necessarily mean everything is exactly "perfect" yet. By this I mean your child may be discharged on oxygen. Your baby may have to go home with a NG tube to aid in feeds. There are many things that you may face with the discharge of your baby, which perhaps you weren't expecting. Some children may require around the clock monitoring. Checking machines to ensure they are running, ensuring your baby's breathing monitors are operating properly to warn you in the event of a problem. It can be a scary time. You suddenly go from 24 hour care with trusted experts to yourself, possibly a spouse and hopefully some grandparents on standby.
Whatever the case, it is now time to try to enjoy your new baby, away from all the blinking lights, monitors going off and constant change of people around you. Hopefully your first few days home will go well and won't require a return trip to the hospital.
During my first few days home with the twins, which was almost a year ago, we did not have any visitors, aside from the grandparents, uncles and aunt, who had waited over 3.5 months to meet both of our beautiful boys. We were heartbroken when we were told our parents and brothers would not be able to come into the NICU to say hello and would have to wait until discharge.
**Consider the following and remember each premature birth experience and neonatal intensive care units' policies may be different. Check with your healthcare provider if you believe any of the following can help your unique situation. The information shared below are guidelines and basic details of services that may be an option for your family.**
Very Important Things to Know at The Time of Discharge
You should ask your baby's health care provider who to contact should you have any new questions or concerns once you are home with your baby. Our discharging neonatologist provided this guidance at the time of our discharge and I believe it made us both feel confident I would know who to speak to if I needed advice about one of my preemies.
If your child or children have long term ramifications of the preterm birth, ensure it is well documented and you have copies. Prior to discharge ask your child's doctor to write out a formal prescription for formula if it is medically necessary for nutrient and weight gain, such as a high calorie preterm infant formula.
If your child is discharged into a community care program, which includes nurses, dieticians, occupational therapists, dieticians, etc., make sure you ask them for as much information as possible on what help there may be available for your child.
If/when you meet with a Case Manager from such program, ask them to help you find out if you qualify for any of the following:
Formula costs paid for by government (if your child is prescribed a preemie or higher calorie formula, for instance.)
Respite (someone to come in and watch baby while you have a nap, go do an errand, go out with a friend, etc.)
or any other types of support
If your child is dependent on a technical device, say, for example an oxygen tube, a NG tube, or other life-saving interventions, find out if your area/country or benefits plan offers monetary assistance for the "medically fragile/technologically dependent." Often you will find that because your child needs to have 24 hour monitoring, checking that feeding tubes or other medical devices are connected properly, you may qualify for monetary support.
Your child more than likely will be referred to an Infant Development program, either at your hospital or in your region, or both. If they haven't offered, ask to be referred to meet with a social worker (outside the NICU,) who is the expert and a great resource when it comes to figuring out where you should be directed for all the help you can get.
Canadian examples and keywords readers outside Canada may want to search
Medically Fragile Technologically Dependent: If your baby is on oxygen, monitors, has a shunt that needs monitoring, etc. your baby/family may qualify for something like this.
ODSP (Ontario Disability Support Program) and the Child Disability Benefit (CDB): This benefit provides financial assistance to eligible families caring for children with severe and prolonged mental or physical impairments.
Assistance for Children with Severe Disabilities: Is another type of monetary support, which can provide anywhere from $25-$440/month to a family dependent upon the child's needs/family income. It may include things such as: travel to doctors and hospitals, special shoes and clothes, parental relief, wheelchair repairs, assistive devices, hearing aids, hearing aid batteries, prescription drugs, dental care, eyeglasses.
Special Services at Home: The program helps families pay for special services in or outside the family home as long as the child is not receiving support from a residential program. For example, the family can hire someone to: help the child learn new skills and abilities, such as improving their communications skills and becoming more independent, provide respite support to the family - families can get money to pay for services that will give them a break (or "respite") from the day-to-day care of their child.
Keep in mind the very fact you have a preterm baby may enable your family to qualify for various types of monetary support to help you pay for the unusual costs of parenting such a child. Additional health conditions may be part of your preterm baby's life, which most likely will increase the likelihood of qualifying for some, if not all of these benefits. It is well worth discussing with your child's NICU team before discharge, as well as with those who will support your child along the way after discharge.
When it comes to researching any montery support your family may qualify for, my biggest suggestion is to apply no matter what. If your case manager or a social worker "doesn't think you'll qualify," apply anyway. Ensure you fill in the applications in full and provdie as much medical documentation outlining your child's medical experience from day one. And ensure your doctor who signs off on the application takes the date of diagnosis to the date of birth if many or all of your child's conditions began then. You will most likely qualify for retroactive monetary supports if you end up qualifying for supports.
Good luck to your family!
My tips for the first few days after discharge:
Time to Eat
Ask for family and friends to assist you with preparing snacks and healthy dinners, which can be frozen until you're ready to eat. If you are going to be running around to numerous appointments try to pre-package some snacks in the fridge or leave some granola bars in your diaper bag or in the car. For a while I lived on bagels and a cup of coffee and not much else, while running around every day trying to be on time for appointments.
Ask people to help you with daily dishes and all of those bottles if you end up formula feeding or having to pump to feed. The bottles accumulate very quickly and it's the last thing you want wash at the end of your first few days. If you have multiples, it will seem like you are constantly washing bottles and never really catching up.
Got Hand Sanitizer?
Have hand sanitizer by the baby's bassinet or crib, in the washrooms, at your front entryway. Make sure your family and friends understand the importance of hand cleanliness and don't be embarrassed about it.
If this is your first baby try to nap when the baby naps, so you are well rested and you will feel much less stressed. If you have had twins or more and an older child (or more) at home, well, then, you may not get naps. I have not had many naps in my 16 months off work. My first time around, I always took a nap in the day when my first son did.
Is Your House Beginning to Look Like an Episode of "Hoarders"?
Ask family to help you keep the house orderly or look into hiring a short term housekeeper, until you get a handle on things. If someone asks if they can buy you anything for the baby, don't think twice, and tell them you'd like a few visits from a housekeeper.
I had a messy house in the first few days, which I am told is normal, but really, it is not easy to feel comfortable and functional when sitting in a big pile of mess! Luckily my mother-in-law was able to step in and help with some of the upkeep, especially the piles of laundry of a 5 member household. I had up to 5 strangers/non-relatives coming into my house on a weekly basis, so having a house that looked like a dump really was stressful for me.
**You may also qualify for some monetary assistance to put toward housekeeping, which I will discuss a bit later on in this posting.
Calendar For Follow Ups and New Appointments
Buy a decent calendar with a lot of writing space or get to know your calendar/schedule application of your cell phone. You may have a lot, and I mean a lot of doctors appointments, follow ups, and new specialists coming into the picture after discharge.
My first 6 weeks after discharge included 39 appointments. Yes, you read that correctly! THIRTY-NINE appointments! I was definitely on auto-pilot. Most of my time was spent driving an hour to follow up appointments, filling in paperwork after paperwork in waiting rooms, and waiting in waiting rooms. Bring a book or magazine where ever you go.
Babysitter For Your Older Children
If you have any older children who aren't in school yet, try to get them into part time daycare. Find yourself some trustworty babysitters, if your parents or friends are unable to help watch your kids, while you are running around like a chicken with your head cut off going from appointment to appointment. Don't forget to breathe!
Finally, if you have multiples, try to have a bassinet or a spot for them to sleep on each floor. If you have 2 storeys or more in your home, you will be exhausted doing the stairs each and every time your baby cries or needs to get up for feeding time. I had bassinets in the T.V. room where I spent most of my time, bassinets in my bedroom next to the side I sleep on and then later cribs in their bedroom. For the first 3 months the babies slept by my side in my room at night.
You may be exhausted just reading all these details. The reality is, you will be exhausted, and this is why you need to do your best to look after yourself, so you can look after your baby. :)
Who Might Be Involved in After Care?
Your neonatology team may refer your baby to your region's nursing care service. You may have to have a nurse or other specialist in for a daily visit to ensure your child's health is not deteriorating. You may have a nurse in every few days to take your baby's vitals and check on you.
Speech Pathologists--You may wonder about this. A speech pathologist for an infant?? We started with two different speech pathologists for two different reasons. First reason being for the purpose of ensuring our babies were developing proper feeding techniques, moving food around in their mouths properly and learning to chew. Second reason is for speech. Premature babies often will experience developmental delays and sometimes difficulty in learning to speak at the general milestone age bracket. We started with speech therapy fairly early to ensure if any problems were to come about they would be identified immediately.
Neonatology/Infant Development Programs (Hospital)
Infant Development Programs (Regional)
Neurology, Neurosurgery, Nephrology, Cardiology, Opthalmology, Audiology...
You get the point...
There can be so much involved with taking your baby home after a stay in a NICU. The high needs of the baby don't automatically stop just because you are no longer in a neonatal intensive care unit. The brunt of the work is now on you, the mother or father, and it can be a struggle. I hope that my pointers and suggestions will help you along your new path!
If you, as a proud parent of a NICU Grad, have any questions or thoughts, please freel free to comment or email me directly at firstname.lastname@example.org.