While lugging a supplemental oxygen tank and monitor around with your baby is difficult at first, it’s not as scary as it sounds!
It can be pretty scary bringing home a baby on supplemental oxygen, but would you believe me if I told you we went camping with BOTH of our babies on oxygen?
Yes, life can go on, even with the added difficulties of caring for babies on oxygen.
You don’t have to be tethered to the tanks, or overwhelmed at the thought of going somewhere.
While it will take longer, it is so worth getting out with your babies to save your own sanity!
I’m going to give you some tips and tricks to go out, and still feel involved when you bring home your babies on oxygen!
Why might a baby be sent home on oxygen?
Some babies are born prematurely, and their lungs don’t have enough time to mature.
While suffacant shots are options at some hospitals (these help babies lungs develop), at others this option isn’t available.
Every baby is different – some are born “late” for pre term babies (ours were 35 weeks) but may still need oxygen. We live in a high elevation area, and so our babies lungs took a lot longer to develop than expected.
Some babies are born early, but do really well and are able to wean off of oxygen.
A lot of times, this may be the best option if it is the only thing keeping your baby in the NICU. With the right training, you can do this care in your own home and finally get to bring your sweet baby home!
You can check out the March of Dimes info here for more medical information!
What equipment is associated with being sent home on oxygen?
After being in the NICU, you’re probably curious how in the world they condense that equipment down to be transported!
Usually, you will receive the following before discharge from the NICU
- An oxygen tank or two. If you only get a big one, make sure to ask for a “travel” one as well to make going out easier! There is usually a service that the hospital will find prior to being discharged that will make regular deliveries of oxygen to your home, and pick up empty tanks.
- A pulse oximeter set up. This includes a monitoring device as well as the “wrap” that goes around their foot or hand to get their oxygen and heart rate readings. The monitor is often rechargeable and lasts hours!
- Extra tubes and canulas. These need to be changed out for sanitary reasons, so it’s good to have plenty on hand.
- “Face Stickies” or tape to keep the oxygen tubes in place on their face. You can NEVER have too many, because as they get older, they start to pull at their tubing alot and the stickies lose their stick!
I’m scared I won’t know how to operate this equipment at home!
Don’t worry, we were too!
Most NICU’s will have “room in” night with your baby(ies) that will be a crash course in using the equipment.
It will likely be sleepless for you, since typically babies “desat” (go below a set number for their oxygen saturation levels) most during deep sleep and eating. That means everytime that alarm beeps off, you’ll have to get used to checking on your baby to make sure all is good, then dismissing it.
Take this time to ask as many questions as possible!
Also, be sure to do the room in with the equipment you will be using at home.
This means using YOUR oxygen tanks, and YOUR pulse oximeter that you will be discharged with and using in your home.
It’s good to practice keeping track of everything and operating everything correctly while there is lots of help around!
How will I go anywhere or do anything “normal” with my baby on oxygen?
Well, you won’t be able to do things “normally” – but you can still do things!
You can request extra long tubing so that you can carry your baby alot farther without having to take a tank.
While no two families setups are exactly the same, you can generally put your things into a diaper bag or backpack when it comes time to travel out and about.
A word of advice on traveling – avoid high traffic areas such as grocery stores and the like! Especially if it is during flu season! Your doctor will likely say this as well, but it’s worth noting.
If you must travel somewhere during these times, be sure to bring a muslin to cover their car seat with and plenty of sanitizing spray and wash.
Think strolls around the neighborhood, to the local park, or such. We always opted outside because germs from coughing and sneezing were less likely to linger in the open air.
If it is wildfire season and there is smoke in the air, ask your doctor.
While ours OKd camping with some smoke in the air, each baby is different and has different needs!
Here are some tips on how to get out of the house with a baby on oxygen
- Get a good stroller set up – We had a Joovy Big Caboose, and it was perfect for our twins! It had plenty of space below the seats to store their oxygen tanks – it could even hold big tanks for times we wanted to be out for awhile!
- Find a comfortable backpack or diaper bag to put your gear in – This is great for carrying the “travel” tank and the oximeter. I loved this set up while baby wearing. I really missed on that bonding experience with my twins, and wanted to make up for lost time. I used a front carrier and put all their gear in the back so that I could do simple things such as chores while still spending time with my baby!
- Review your diaper bag before going out – You want to make sure you have extras of everything! The most common item needed is face tape or “stickies”. These get pulled or messed up the most, so it’s good to have plenty on hand. You may also want to carry an extra tank as well, in case something happens to the one your bringing or you’re just out longer than you thought!
How do I wean my baby off of oxygen?
I am no medical professional, so please consult your doctor!
I will, however, tell my story!
After monitoring their oxygen levels, and knowing what their normal was, we weaned them off in the following stages
- We slowly lowered the amount of oxygen they were receiving over all until they were at the lowest setting
- During “active” times, such as play, we removed the oxygen. We still kept their stickies on to reattach it after, but we wanted to see where they were at during optimal times. When they were able to maintain over 90 on their oximeter (this was the recommended level told to us by our doctor – your babies needs may be different!) then we increased the number of times they were without oxygen during play.
- While eating, which is often a time of desatting due to the difficulty of eating and breathing, we started to remove the supplemental oxygen. Again, this was while monitoring their stats.
- The last activity, and hardest, we weaned them off of oxygen from was sleep. Deep sleep is scary, especially once you see those stats drop. Our girls struggled to maintain 90 during this time, so we consulted our doctor about this. She said no one knows what the “normal” oxygen levels are for babies during sleep, as healthy babies are not monitored. She said it’s normal for even grown adults to dip (we were dipping as low as 70s!) and to not worry about it. With that in mind, we decided they were ready. PLEASE consult your doctor when it comes to this!
If you want peace of mind after weaning your baby off oxygen, buy an owlet monitor!
Every mom, especially those whose babies have been to the NICU and had such hard battles worry about their babies. That’s why I LOVE the owlet monitor It’s a special “sock” you put on your babies foot that monitors their heart rate and oxygen levels. It connects to your phone as well as a base station and has a VERY audible alarm when there is an alert (such as a super low oxygen saturation)
We were concerned with how accurate these were, so we actually attached the owlets to our twins feet as well as their hospital issued pulse oximeters. They ended up being extremely accurate, which gave us even more peace of mind.
My only nag about the Owlet, which many NICU and oxygen supplementing moms have brought up, is that the oxygen level alarm doesn’t go off until it hits 80. That is very low, and most parents will be used to a 90 level being considered the minimum.
I don’t mind, as my babies still desatted while in deep sleep. I didn’t need to know everytime they hit 88, so for me this was fine. Just keep that in mind before you buy!
While they are a bit pricey, they do have payment plans that approve most people.
There are also amazing foundations such as Knox Blocks that donates Owlets to families in need. I have also known some moms in NICU groups to pass the peace of mind along and give their owlets away for very cheap or free to families who need one!
What is life like with a baby on oxygen at home?
Here’s the scoop – you are likely looking at this page because your doctor has suggested your baby may be able to come home, but will need supplemental oxygen.
If you’re like me, that seemed way too intimidating, and scary thinking about the fact that YOU will be in charge of regulating their oxygen, and possibly making the choice to wean them.
But trust me – it’s SO worth it to bring them home!
Life with oxygen tanks and monitors will become your new norm.
You will become a pro at operating everything you need to, and will learn so much about your baby.
Your baby will likely get better faster when home.
No more bright lights, gloved hands, limited holding time.
Best of all, if your NICU was away from family and other children, you no longer will have to split up time between everyone!
Don’t be scared – embrace the change, and adapt!
Take your baby home, ask as many questions as you need.
This is just a chapter, and soon you will look back on it and be thankful that you got to bring your baby home instead of having them be left in the hospital for months longer for a service that you could do yourself!
Feel free to reach out to me if you need reassurance, have questions, or leave a comment with other positive tips for new oxygen moms and dads!
P.S. If you also are expecting twins, or they are already here, check these out!
- How to bedshare with twins safely and get even more bonding time (which really helped me after the NICU and oxygen!)
- Learn how to tandem nurse twins, and how to figure out what breastfeeding items you actually need!
- Do you already have one or more childen at home? Find out how to get kids excited about the new baby(ies) here!
- If you’re curious, find out how twins are different than a single… it’s not as bad as you think!
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Great article, lots of useful information if your baby comes home on oxygen!
Thanks! I hope it helps you or someone you know!
Our little girl is going home today on oxygen. They were saying not to use any lotions/creams with any oils or petroleum. Any suggestions on lotions to use? Or creams for rash?
Hi! Sorry for the late response Kali! I hope your little girl is doing good! I wonder if they were saying that because then the face stickies wouldn’t hold as well… with that being said, we didn’t really use lotions when they were on oxygen on their face. I’d do the rest of their body, but avoid the face. I felt bad having to constantly reapply the face stickers, and the oil could make it not hold on as good. We used boudreaux butt paste on an as needed basis for rashes, and they seemed to do well with it! -Stacy
Thank you for this post. My wife and I are freaking out bit because after more than 3 months, our daughter will be discharged but with oxygen care at home. We are hoping of course to wean her from the oxygen therapy.
Hello Joseph!
I’m happy it was able to help you! It’s definitely scary at first having to be in charge of something as important as her airflow, but it definitely gets easier and best of all… she’s home! I wish your family a speedy weaning process! – STacy
I know this is several years old, but petroleum and oxygen together is flammable! That’s why you were cautioned not to use that on your baby’s face!
I’ve since read that the petroleum has to n come into direct contact with the o2 (like putting petroleum in the nose) , it can cause burns, or perhaps a flame). But putting lotion on your baby’s body, head, and even a little on the cheeks won’t hurt.
Thank you for the reassuring words! About how long did it take to wean your twins completely off of the oxygen?
About a month I think. Have the owlet was really reassuring that they were still ok once we had to return their pulse oximeters and everything back to the rental company. I asked my pediatrician about dips at night and such, and she said there really is no known norm because healthy babies aren’t hooked up for monitoring 24/7 for weeks on end like ours are/were. So that made me feel a little better when I’d see the 80s (the owlet doesn’t actually go off till it hits 80 I think, which is frustrating at first because you’re used to a much higher “standard”. Our was 90 for the pulse ox with settings from the hospital). ARe you trying to wean off of it soon? Email me at [email protected] if you want some support with any of that… it can be scary leaving that security! -Stacy
Hi Stacy, I just wanted to stop back by and thank you again for writing this story, it really helped me see the light at the end of the tunnel when I was at the lowest point, and now our little guy is totally off oxygen! It’s been a little over a month, so we were on a similar timeline. Our pediatrician told us we could have done it a couple weeks ago, but he left it up to us and we finally cut the cords a few days ago and his O2 sat was still great so we got rid of the oximeter this past Tuesday. Anyway, thank you again!
Thank You so very much for this article. It is so helpful and definitely reassuring. Praying to go home with our babygirl very soon. September 1st will be 3 months. Thank you and God Bless you All!
Hey Elaina
It will come one day and then all of what you’re going through right now will feel like it was a different life. 3 months is so long, you’re so strong for going through that! I hope she is able to come home soon <3. You're welcome, and God bless you too. - Stacy
Hi! My son was born at 26 wks. He came home May 4th on oxygen, that was the only thing keeping him in the NICU! He came home on .12 liters and we were not given instructions to wean. His pulmonologist said that he just wants him to hang out on that tiny amount till he grows out of it. He set up an appointment for us to see him so he can reevaluate our sons dependency of the .12 liters of oxygen. He said that he might just take him off if he’s ready. Since you’ve had babies weaned off of oxygen, I was wondering how long they had to stay on oxygen? I’m worried that it’s going to take forever to get him off of oxygen since we aren’t actively weaning him at home. I guess I’m just looks for some reassurance that he won’t be on oxygen forever lol thanks for listening !
He was born 12/31 and came a month after his due date. I probably should have added that lol
Hi Kat! Congrats on your sweet baby boy! Oxygen was the only thing keeping our twins in the NICU too! My girls were on oxygen for around a month, but they weren’t born quite as early as your son (35 weeks). With that being said, don’t look up stories of babies who end up being on oxygen for a long time. It will only freak you out (not that there’s anything wrong with that!)
Just make it your norm, and it will be done soon. I know it felt like it for me, and for a while, we didn’t even take any pics of them because I just kept waiting for for the tubes and wires to be gone. I regret that (I only have a couple of pics in the NICU, and maybe 3 from at home for that entire time). It won’t last forever – just get a backpack for his pulse ox, make sure you have a travel tank and try your best to still enjoy him to make that time pass faster.
I was still able to baby wear my girls by just putting their tanks and monitors in a backpack while I wore them on the front. It helped alot to establish that bond I felt I really missed out on from them being in the NICU, and it also made me “like them” more since getting that time with them felt nice, and wasn’t just another chore (like replacing stickies, tanks, staring at the numbers etc.)
As for the weaning off of oxygen, I think our pediatrician was a little more leaniant with us than what’s typical. She used to be a NICU nurse, and said that the norm is definitely to do “check ins” but felt comfortable letting us try to adjust the levels and use to wean. Not sure why, but to be honest it might be kind of nice to not have to change the levels and feel responsible for weaning and determining if your child has enough oxygen. So perhaps that is just to remove stress for you! I bet he’ll be good to go by that check up! -Stacy
I see your post is old. But it’s so nice to read it. You start to think you are alone in having your baby on oxygen. Did you need to do any sleep studies? We had a sleep study done to see if our son could come off oxygen and they gave us our results (a big fat no). The lowest he dipped was 85 and for a max of 7 minutes before it pooped right back up. Articles that I’m finding say that perfectly normal babies dip and have periodic breathing as well. He is premmie born at 35 and a half weeks. I’d like to start weaning but that hasn’t been given as an option by the respirologist. Instead we are going for a brain ultrasound and lung x-ray. He is gaining and looking so healthy now at 11 weeks old.
Hi Jill,
It can definitely feel this way – I know I did every time I saw other’s pictures of their babies and such… We didn’t do any sleep studies, our ped (who was a former NICU nurse) let us sort of wean on our own. I’m not a doctor, but 85 sounds perfectly normal. Mine went in the high 70s and our pediatrician still said that was ok (especially if he is only dipping for 7 minutes!) Ours were born at 35 weeks too <3. Please find a different doctor to get a different opinion. We feel super lucky after hearing others stories that our doc gave us flexibility with weaning the oxygen. Please email me at [email protected] if you'd like to talk more. All the best, Stacy
My grandson was born at 35 weeks and was in the NICU for eight days and came home on oxygen. He does fine when he is awake but will dip into the 70’s when sleeping. My daughters doctor said that was too low and to put him back on it. He’s on 1/32. What did you do when your twins dipped into the 70’s? My daughter also lives in a high elevation area.
Hi Terri!
We just let it be. Our doc said that since no one really monitors “healthy” babies over time, there is no way to know that they don’t already do that (dip into the 70s). We got owlet socks for ours and had them wear the sock at the same times as their pulse ox such so we could check for accuracy before we decided to completely wean them off. The owlet was peace of mind that they just wore at night. We still kept two extra mini oxygen tanks for a bit after we weaned for things like long car rides (the position of their neck can be a serious issue). I hope this helps, and I hope your grandson is doing well! – Stacy (p.s. these are just my experiences, I am not a doctor)