Having a baby who needs oxygen really sucks for many reasons. First of all, the baby hates it because it's so uncomfortable with a hard thing in their nose and tape all over their face and a tube tugging all the time. But much worse is the fact that your adorable baby now has something covering their cute little face...something that makes them look like they're sick. So instead of people saying "What a cute baby" they ask "What's wrong with your baby?" and that just sucks.
When Benny first got prescribed oxygen I really freaked out. At first I just despaired that there was no way we could do this. Then I pulled myself out of it and tried every different method of keeping the cannula on his face that I could find - paper tape, tender grips, cannulas that claimed they were softer on a babies face...none of them worked very well. Benny hated it, I hated it, our whole family hated it.
Finally I reached out to everyone I knew who had ever had a baby on oxygen. Since we live more than a mile above sea level, that’s actually a lot more people than you might think. I got a lot of advice.
One mom shared that to keep from tripping over the long oxygen tubes running from the concentrator in an upstairs bedroom to her living room she used cable concealers and multiple tubes.
We were very excited about this idea, and my husband immediately ran out to a home improvement store and bought a kit.
Another method someone showed me for dealing with the great oxygen tube tangle problem is to use a pacifier clip to hold the oxygen tube at a loop at your belt buckle like this:
Soon after these great discoveries, a very experienced Oxygen Mom came over and showed me all of her tricks. She showed me how to cut up pieces of Tegaderm Film and apply it at the temples and behind the ears to keep the nasal cannula in place. This was much easier on his skin than the "Tender Grips" bandages, which ripped his skin off when removed, making him scream in pain and leaving bright red painful circles on his sensitive newborn skin.
She also showed me how to snake the tubing down his outfit so that it wouldn’t get caught and accidentally strangle him.
She told me that I could request small tanks and a backpack from the oxygen supply company, which allowed us to be much more mobile. (Surprisingly the oxygen supply company hadn’t bothered to tell us or supply us with one until we requested it. They had only given us giant tanks to lug around) With the little tanks we felt liberated. We were even able to use slings and front carriers and go for walks.
An emergency hospital stay led to some further insights on how to make Benny's oxygen use more comfortable.
While we were there a nurse told us about a nasal gel we could put on his nose to keep it from getting too dried out. We also discovered that having a humidifier on his oxygen line really helped with his comfort.
We asked if we could take home the bottle they had used in the hospital to add to his line at home. Unfortunately, Benny was nearly drowned when my husband accidentally tipped the water over into his oxygen line.
After that we decided to take it off until we could get a proper system. During the drowning incident we also decided to come up with a better system for keeping his nasal cannula on. My sister Josephine was visiting, and helped me to modify some of his knit hats so that we could tie the tubes up over his ears and then cinch it under his chin. This had the effect of keeping the nasal cannula in place and the hat on at the same time. It was also easy to remove, so that if there were ever another incident where we needed to remove the cannula quickly we could.
The first hat that I modified I simply cut a couple of holes on either side of the hat and used pipe cleaners to hold the tubes in place. It worked really well and also looked really cute, but I was afraid that the pipe cleaners might accidentally poke his head if I used them at night.
I happen to live by a yarn shop, and Josephine stopped by to see if she could find a good material to use. The shop owner helped her select a yarn that was not too stretchy, so that it would stay in place well, and a yarn needle.
Sewing the yarn onto the hats is really simple and only takes about a minute to do once you have a yarn needle and yarn. We shot a little video to show how, but the files corrupted somehow, so I’ll have to reshoot it and post it later. In the meantime, here are some pictures with directions on how to create your own cannula holding hat:
Soon after we created the modified hat system, Benny had to take another emergency trip to the hospital. Everyone commented on how cute and functional his hat was!
We also made another discovery. He happened to be wearing a pair of snap down footy pajamas the day he needed to go the hospital. We discovered that in the snappy pjs, he was able to remain clothed despite having tons of wires and tubes running all over him for monitoring. This discovery came in handy later when he had heart surgery. We stocked up on snap and button down pajamas beforehand, as well as leg warmers. It's silly little things like this that can make a hospital stay so much more comfortable.
Knit hats get loose after a day or two of wear, so if you try the hat system I recommend either making many knit hats and washing them often, or using a sun hat. If you are not the DIY type, there is a company that sells hats, o2kidslids.com. We bought a hat from there as well, and it worked great other than that I hadn’t ordered the right size, so it was a bit big on Benny.
With all of these tricks, I quickly became a pro at keeping Benny oxygenated in style and comfort. Still, it was a big relief when he finally started keeping his levels up on his own. How easy life seemed without all of the tubes and tanks and machines that came with the oxygen.
Recently we got a call that Benny’s sleep study had shown his oxygen saturations levels dropping below 90 over half of the time. Our doctor recommended putting him back on oxygen full time for a month.
I was devastated. We had all enjoyed the freedom without oxygen and the idea of having to do it all again seemed like torture.
Today is the first day I’m going to leave my house with Benny since having to put him back on oxygen. I am bracing myself for it as I had really been enjoying just having a baby. A cute, healthy-looking baby. A baby whose health condition I didn’t have to explain if I didn’t feel like it. A baby who came just with a diaper bag and a car seat, not all of the normal baby stuff plus a backpack, tanks, tubes and all the various oxygen tank accessories.
This was one of the hardest blog posts I’ve written because I really wanted to be cheerful and upbeat about having a baby on oxygen, but I don’t feel that way. Having any kind of baby is hard. Having a sick baby just sucks. It doesn’t mean I love Benny any less because he has health problems, it just means that sometimes I have days where I just don’t want to go outside. I don’t want to explain to the kind, curious strangers that no, my baby wasn’t a preemie, that he has Down syndrome and is recovering from a heart defect and that’s why he’s on oxygen.
But he does and they will, and maybe my going outside with my baby and his oxygen tank will help somebody else feel like it’s okay too. Maybe my writing this post will help other parents who are going through this to know that they’re not alone, and that it is doable even if it does suck.
I hope so. Please let me know if you have any suggestions for parents who have a baby on oxygen that I didn't include here, and if you know parents who could use this information do share this with them. Thank you!
I took Anatomy in high school, but I guess I wasn't paying much attention when we learned about the heart. No matter how many doctors I talk to, I can't seem to get a good grasp on my baby's heart defect and pulmonary hypertension.
Yesterday my mother-in-law sent a letter to my older son explaining why his brother needs the constant low-flow oxygen he has recently been prescribed. It is the best description I've ever read:
Hi again Caspian!
I wanted to tell you a story about why your brother needs oxygen, and what the doctors will be fixing in his heart when he gets a little bigger....
Think of Benny's heart and lungs as a little house, with a furnace to keep it warm. It's cold outside, and Benny's little house has a door, and a window, and that furnace. Because it's cold outside, Benny likes, and needs, to have a warm little house.
Benny has to go outside frequently to get supplies--food, air, and wood for his furnace. Every time he goes outside, he opens the door and then closes it behind him, so the house won't get cold.
But Benny's door doesn't close quite right. The door to YOUR house opens only one way on its hinge, and it closes tight when it closes. Then to open it, it takes some effort.... you have to turn the knob, and pull it open. And when the wind is blowing hard outside against it, even in a storm, the door doesn't blow open on its own. It's SHUT, and shut tight.
But Benny's door to his house is more of a swinging door. It sometimes moves BOTH ways, and if there's a big wind outside, the pressure can blow it open and let the cold air in, even though Benny wants his house to stay tight and cozy warm. Sometimes that door is just not tight.
Also, Benny's window doesn't quite close. The glass doesn't go all the way down to the bottom--there's a few inches that are always open. The window wasn't measured absolutely correctly when it was made. So cold air is always coming into Benny's little house.
That makes the furnace work overtime, and harder than it should.
In the real world, Benny now has oxygen--which you can think of acting in Benny's little imaginary heart and lung house as being an extra heater. It takes some of the burden off his furnace in keeping his house warm. It also acts sort of as super fuel for his furnace itself, and protects it from getting overworked.
When Benny has his surgery, the doctors will do two things:
1. They will create a bottom to Benny's constantly open window. They'll put another piece of good, strong glass in that window, and then it will shut tight--not letting in any more cold air all the time. When the window has to open, it will open. When it has to shut, it will thus be able to shut. No more always a little open, letting in cold air.
2. They will fix Benny's door. No more swinging open with big winds outside. They will fix it so that it will only open ONE way, and when it closes it will shut tight. When the door has to open to get supplies, it will open, and then shut tight afterwards....not only to not let in cold air constantly, but also to not let those supplies roll away by accident.
So then, instead of Benny's little house being cold all the time-- because cold air is always coming in from the window and door that don't shut tight-- thus making his little furnace work so hard, and constantly, to help keep the house warm----with a repaired door and window, his furnace can work normally, like it should, and not so hard all the time. Also, Benny's house will be warmer and more comfortable. Everything will be easier, and more comfortable for Benny, once that door and window are fixed.
So until then, the oxygen will help his little furnace--take some of the burden off it by acting as super fuel for it, and also by acting as an extra heater.
It isn't heat, though, that's the issue--it's oxygen. Benny's heart and lungs need some help right now to circulate oxygen to his body. Our hearts actually have (what you could call) windows and doors between its chambers (the four "rooms" inside our hearts). They have to open one way, and one way ONLY,and they have to shut tight, and not open up backwards with pressure against them. Those doors and windows are called heart valves.
So the doctors will fix up Benny's heart, so that his heart home will stay nice and cozy warm, and his real body will be able to obtain and distribute oxygen well. Then when he gets older, and learns from you and your parents how to run around and ride a bike and swim, his body will have the energy and oxygen to do all that. The doctors know all about how to fix things. Benny just needs to get a little bigger first, before the surgery, and the oxygen he's using now will keep things going okay until that time.
You of course can't explain all this to Benny, but when you talk to him,you can tell him that even though sometimes having to have oxygen is blech, it's really helping, and it will be okay. He'll always have someone nearby to take care of him and keep him company.
So, big brother--I hope school is fun--your clubs, your friends, your teachers. Send us an Email and tell us when you get a chance.
Grandma and Grandpa
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!