By Heather Cresswell, NP
Many premature babies who need care in the NICU will need help with breathing or oxygen levels during their stay. Although not all babies need oxygen, this can be a normal part of an NICU journey.
Sometimes, home oxygen may be a good option if a baby is otherwise ready to go home but will need oxygen for some time (for weeks, months, or longer). Home oxygen is given through nasal cannula —very small, thin tubes that sit in the baby's nostrils.
Some babies with medical complications may need different kinds of oxygen or breathing support, but for this blog post, we will focus on oxygen by nasal cannula.
Why do babies go home on oxygen?
Babies who go home on oxygen usually:
Have premature lungs and have needed help with breathing or oxygen for many weeks or months;
Are at least term, or close to term corrected age (it is close to or past their due date);
Do not have pauses in breathing or sudden drops in oxygen or heart rate (sometimes called "spells").
Meet Lincoln—A Home Oxygen Pro
Lincoln was born at 24 weeks gestation. He spent almost six months in the NICU.
For some parents, it can be shocking to hear that their baby will need home oxygen. But a mother's intuition made it less of a surprise for Lincoln's parents, Alexis and Grant. When Lincoln was only three weeks old, Alexis asked his NICU nurse how long he might be in the NICU. At some point, the nurse mentioned that some babies need oxygen at home. "I just knew it," Alexis said. "I don't know why. I just had a feeling that would be our journey".
Alexis was right. After a long NICU journey— and all the ups and downs that come with it— Lincoln was almost ready for home. The only thing holding him back was that he still needed oxygen. Lincoln's parents and his NICU team decided it was time for him to go home, and home oxygen would get him there.
Preparing for Home Oxygen
Even though it wasn't a complete surprise, taking Lincoln home on oxygen was scary for his mom. "The idea of taking him out of the NICU where nurses are checking him all the time, and the whole team was there to answer our questions, was scary," Alexis shared. "I didn't know a single mom who had taken a baby home on oxygen. I'd never even seen a baby on home oxygen". Lincoln's parents and the NICU team got to work, preparing for Lincoln to go home.
What to expect when getting ready for home oxygen
Getting ready for home oxygen can involve a flurry of activity. The NICU team will contact a home oxygen company, which usually works directly with the family to provide the needed equipment and education. Equipment is delivered to the home or sometimes to the hospital. Equipment and supplies will vary, depending on each baby's needs.
Home oxygen equipment
Oxygen concentrator. A device that separates oxygen from the air and delivers it to the baby through oxygen tubing. Concentrators are usually the main oxygen source at
Compressed oxygen. Oxygen tanks contain compressed oxygen in the form of a gas. Small portable tanks are used when it is not convenient to use a concentrator –for example, when a baby is out of the house for appointments or enjoying activities with the family.
In case of power failure, it is important always to have oxygen tanks handy, even if you have a concentrator.
Pulse oximeter (oxygen saturation monitor). Some babies will have a pulse oximeter at home. This monitor can be worn continuously, or can be used to "spot-check" the baby's oxygen levels.
Other supplies:
Nasal cannula and oxygen tubing
Tape or securing method to hold the nasal cannula in place (such as tender grips)
Probes (the part that goes on baby’s foot) that connect to the pulse oximeter
Logistics: home oxygen equipment and supplies
Arranging home oxygen equipment can be a lot of work at first and sometimes comes with some costs for the family.
Generally, the home oxygen company will deliver the oxygen concentrators and tanks. It is important to have this equipment in place at least a day or two (or more) before discharge home. Be sure to clarify what the home oxygen company will provide and what they won't. For example, do they supply nasal cannula? The answer may differ between companies.
Pulse oximeters may need to be rented by the family, or may be provided by a provincial service. Ask your NICU team about the process if your baby will need a monitor at home.
Parents may need to arrange some supplies, such as special tapes, to hold the nasal cannula in place. It may be a good idea to ask if the NICU can provide a few to start. Parents can order most supplies.
Cost of Home Oxygen and Supplies
Each province and territory has different programs that offer funding for home oxygen. The amount of funding may vary depending on each province and their criteria. Generally, provincial programs will cover home oxygen equipment, but families may have to cover some of the costs in some situations. Private benefit plans may also help with expenses.
Coverage for other items such as pulse oximeters, nasal cannula, and special tapes may also vary depending on where you live in Canada and your benefit plans.
Before taking your baby home on oxygen, ask your NICU team and the home oxygen company what funding is available and the next steps.
Almost Home
Lincoln's mom has an important tip for parents: spend as much time as possible in the NICU caring for your baby. "Being involved in Lincoln’s care from day one, learning how to do things, asking questions, and being part of his care team really made it easier for us."
Most NICUs will have an option for parents to stay with their baby in the hospital for a night or two before discharge. This may be in a private NICU or "care-by-parent" room. Bring your home oxygen equipment to the hospital to practice, and ask for help from the NICU team if any questions arise.
Before taking him home, Alexis and Grant stayed with Lincoln in a care-by-parent room. Alexis found it very helpful: "Having that night to use our home equipment, knowing that the NICU team was just a call button away made it so much better. It was very helpful to have that time to really get to know the equipment".
Information checklist before going home:
If you are taking your baby home on oxygen, there is some information you will want to have on hand. Ask your NICU team to provide any missing information:
A list of follow-up plans, including referrals to any specialists, expected appointment timelines, and contact information.
Home oxygen company information – ensure you know who to call if you have any questions about home oxygen equipment and what to do if you run low on supplies.
If your baby will have a pulse oximeter, what oxygen saturation is acceptable, and what should you do if you notice a change in your baby's oxygen levels?
When should you seek medical attention for your baby? Where is the best place to take them?
Next steps (if applicable) for any funding applications or equipment rentals, and who you can call with questions.
Tip: Ask your NICU physician or nurse practitioner to provide you with the necessary certification to get an accessible parking permit (requirements will vary by province).
Home Sweet Home
Alexis remembers some challenges adjusting from the NICU environment to having Lincoln at home. "At first, I didn't want to take Lincoln off his oxygen monitor for a second, even though we had been taking him off in the NICU, and we knew it was okay. In hindsight, I think that was a mistake." Things got easier once Lincoln's parents got more comfortable with home oxygen. "I made slight adjustments and found ways to make home oxygen our normal."
Finding some of her favourite supplies and baby items for Lincoln also helped.
Some of Alexis's tips:
Look for "Tender grips" for securing the oxygen tubing to the baby's face, and use warm water to remove them when they start to peel off. Alexis found these gentle on Lincoln's skin while holding the tubing in place.
Look for sleepers and sleep sacks with openings on the bottom. Feed oxygen tubing down the back of sleep sacks and out the bottom so the baby can't play with the tubing or get tangled. Kyte Baby is a brand Alexis loves for Lincoln.
Look for sleepers with zippers that open from the bottom. This zipper makes it easy to access an oxygen saturation probe, and when closed, the zipper can be used to keep the cable snug, keeping it in place even when babies kick (Alexis loves Zippy Jamz).
It's Going to be Okay
Alexis wants parents to know that even if home oxygen is scary initially, it gets easier. "I really felt home oxygen was going to define my maternity leave and everything we did. Once I decided that that wasn't the case, life just got so much better. Home oxygen is just something that is coming along with us".
Tips from a pro preemie mom:
Celebrate the wins, even if they don't look the way you expected.
Know that it gets easier, and you'll figure out what works for you.
Lincoln is now 22 months old (18 months corrected). He still needs oxygen at night but is off during the day. Alexis and Grant are hopeful that Lincoln is making his way toward ditching the oxygen tubing altogether. But there's no rush. "I always said Lincoln was my little turtle: slow and steady," Alexis said proudly. "I just think that my son is the toughest little dude. I wouldn't change anything. When he grows up, I can tell him how much he overcame and that there's nothing that he can't do– because he did so much when he was so small.".
Resources
If you are a parent of a premature baby, check out the Canadian Preemie Parent Support Network on Facebook:
Heather Cresswell is a Neonatal Nurse Practitioner and health writer. As a nursing student in 1995, Heather discovered the NICU during a clinical placement and never looked back. She has spent her entire nursing career (more than 25 years and counting) caring for NICU patients (premature babies are her favourite!). When not caring for her tiny patients, Heather is also a health writer and is happy to contribute to the Canadian Premature Babies Foundation.
Heather lives with her family in Burlington, Ontario, and is a proud mom to one son.