PIXLEYDUST
  • Blog
  • About
  • Contact
  • Blog
  • About
  • Contact

Keeping Oxygen on a Baby... Everything You Need to Know

2/6/2015

95 Comments

 
Picture"I hate having this on my face!"
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.
PictureThis is what oxygen tubes look like without cable concealers, a tangled mess that goes everywhere!
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:

Picture
Picture
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.

Picture
Benny with Tegaderm Film holding his oxygen in place. It's clear and doesn't pull the skin, so is easier to remove. Photo by Kayleen Walsh.
Picture
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.

Picture
Big tanks, little tanks, tubes, oxygen concentrator + pediatric flow meter. Not what you thought your nursery would look like.
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. 
Picture
You can see the marks left from the "Tendergrips" and why it was so hard to get the cannula off quickly when it filled with water.
PictureCannula hat version 1.0.
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:

Picture
First you need a yarn needle and some thin thread that is not too stretchy.
Picture
You thread the yarn through the yarn needle just like you would a needle and thread.
Picture
Then you sew a short length of yarn on either side of the hat, near where your babies ears will be.
Picture
You cut the thread so that it is just long enough to tie up in a bow, pull it so it's even on both sides, and secure it onto the hat with a knot.
Picture
Finally you tie knots at the end of each piece and this is what you get - hats ready to hold an oxygen tube in place.
Picture
To secure the cannula in place, tie each side of the cannula up to the hat, place cannula in nose and slide hat on, then cinch the tube up under the chin.
Picture
Here 's my sister Josephine showing off the adorable new cannula holding system she made for Benny.
Picture
Benny looking happy, stylish and comfortable in his oxygen 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.
Picture
Picture
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!

Picture
95 Comments
Georgia Ryan
2/11/2015 10:40:32 pm

Taymar,
I enjoyed the photos, helpful hints, crafty innovations to help keep the nasal canula in place, and most of all, your attitude that you wish to help other parents and babies who need oxygen. This might also help some older, somewhat confused people who also require oxygen. See you in July! Georgia

Reply
Arianne
2/13/2015 02:22:28 am

My full term baby had craniosynostosis and de sats (unknown caused and now still on o2 at 5 1/2 months old). Everything you said I feel everyday, although now we can at least have the o2 off during the day, but he has had cranial surgery and us now in a helmet. It's hard, very hard and I understand what you are going through.

Reply
Taymar
4/8/2015 06:55:22 am

Thanks Arianne, I hope your little one is doing well.

Reply
Melanie
10/4/2017 10:09:54 am

Hi Arianne,

I know your post is a couple years old, but my baby was full term, has been on oxygen since 2 weeks due to periodic breathing, and just recently had craniosynostosis surgery at 3 months. It just struck me how similar the stories are. I asked and asked about the two issues being related but all the docs said nope, just coincidence and the two are unrelated. While recovering from surgery we tried room air and his levels didn't dip down, even while he was asleep, so I'm hoping he'll be done with the oxygen by 6 months. What ended up happening with you guys?

Reply
Alana Simmons
10/5/2017 12:55:41 am

I just saw Melanie's post, so that's why I'm responding now. I urge all of you guys with these issues to join the FB group, "my child has sleep apnea" that one of the moms started. Even if your kiddo doesn't have apnea per se, but is still dealing with these issues - oxygen, tape, keeping cannula on, etc. - the FB group is really useful. I feel like it's easier to send queries to other members than on this forum, too.

In answer to your question, my son is 17 months today, still on oxygen when he sleeps and naps, and is still using zippadee zips and the blue sensitive 3M tape. He still de-sats, especially if the cannula comes off, so it still may be a while yet until he can get off the oxygen.

Hope to see more of you on the FB group!

Emily
2/22/2015 02:15:42 am

my 30 weeker will be 1 in less then 2 weeks and is still holding strong needing oxygen. I hadn't known either about the small tanks till a few months ago. I have broken 2 toes and now have a home fill system. I find it easier at home not having to lug around tanks, and the backpack being the best for when we are out. It almost makes me fell like he isn't on oxygen. I'm just so thankful to have him here (my water broke at 17 weeks) that he's worth the lugging. When people ask(which they usually do) I have say that there's nothing wrong. If they continue I tell them he's a miracle and shouldn't have been here and he just needs a little help breathing, but is otherwise very healthy. The tubing is just out why of life. He and I don't know any different. Our family has adjusted and I think it will be weird and hard to let go when he does come off (it comforts me knowing he has it, like a safety

Reply
Taymar
4/8/2015 06:58:18 am

It's funny how we adjust to these things. Our little miracles do make it all worth it, and I suppose we do appreciate them more for all of the extra work it is, like a pistachio or an artichoke. :)

Reply
Philipp
5/12/2015 11:28:37 pm

hey, thanks for sharing your experiences and thoughts! Very inspiring and helpful! I am actually working on my MA degree on how to improve oxygen therapy for infants and their parents... since this patient group is usually left out in the market... I study product design in sweden. Would it be possible to contact you during my project via email regarding some questions and ideas I have? Thanks!

Reply
Katie McDonald
3/27/2016 07:38:35 pm

Has your research come up with anything new??

Reply
Taymar
12/18/2017 01:07:55 pm

I contacted Philipp but haven't heard anything back, not sure if the email went through. I'm hoping to reach out to more product developers to get better products developed, is you know of anyone interested in that kind of work please put them in touch with me. I have a contact form on this site, and my cell phone number is 619-990-5773.

Rebecca, RN
10/29/2015 07:55:23 am

I LOVE the hat idea!! I am taking care of a 6 month old with oxygen - in the home. She keeps rubbing off the various tape products we've tried. Tegaderm, duoderm, medipore tape... Would love some other tried and true suggestions!

Reply
Taymar
3/31/2016 04:43:02 pm

Thanks Rebecca! The hat is so simple and helpful. Another product I've discovered recently that works well is Nexcare tape. It doesn't seem to rip up the skin like the other kinds of tape. I am going to update my post soon to include it. Here's a link to it on Amazon in case you are interested, it is also available at any pharmacy: http://www.amazon.com/Nexcare-Sensitive-Skin-Tape-Count/dp/B00B4UDXBI

Reply
Jeni J
1/19/2016 07:33:07 pm

Thanks for sharing your journey with Benny. My son also has Down syndrome and requires oxygen 24/7. There are times when he has not needed it, but more than not, he is on it. I have all those same feelings. I have used the 02kidlids for a while now, but DH has been complaining that he wants something different. He bought a baseball style hat. I was looking for ideas of how to attach ties or fasteners to the side.
Most of all I'm glad I stumbled on your post because I don't feel so alone tonight trying to make life easier for my little guy and for all of us!
Hugs mama!!

Reply
Taymar
3/31/2016 04:51:36 pm

Thanks for reading Jeni. If you have any pictures of your baseball style hat cannula holder I would love to see them! You can find me on Twitter or instagram as tmpixley. :)

Reply
dimpi shah link
2/24/2016 04:18:32 am

thanks for sharing such information with us for more information please visit : http://www.angiplast.com/

Reply
Lisa
3/19/2016 08:06:35 pm

Thank you so much for sharing this information. I came home with my 35 week old 2 weeks ago. She has a small heart defect and because we're at high elevation she's on oxygen. It's looking like she's going to be on it until she's at little past full term. I can't tell you how much I appreciate your tips appreciated tricks. It's not atppreciatendn easy process. It's good to know I'm not the only one out there trying to find a better way to deal with a tough situation.

Reply
Katie
3/27/2016 07:43:11 pm

Lisa, Are you by chance in Denver? I am trying really hard to build a support system here :)

Reply
Katie McDonald
3/27/2016 07:40:43 pm

Thanks for sharing. I need to figure out this hat thing. I think we might be in the same area. I am in Denver and dealing with Apria has been quite a nightmare. Right now I am literally taping the tubing to my baby girl with medical tape because they are out of most of their supplies.

Reply
Lisa
3/27/2016 08:53:14 pm

Hi Katie. I'm in Colorado too. I'm so sorry for what you're dealing with. I've struggled with Summit and thought about switching to Apria. I'm glad I didn't. I was able to find a lot of support on a Moms Facebook group for my area. One of the moms is a NICU nurse and has helped me a lot. Pease feel free to pm me on Facebook. My user name is Shutterbug Lisa.

Reply
Taymar
3/31/2016 04:40:00 pm

Hi, there are a lot of great groups in the Denver area. Have you contacted the Rocky Mountain Down Syndrome Association? They have a list of all the groups in the area. I am happy to meet with you sometime too, and to share resources. I recently discovered this tape from another mom in my local Down syndrome group and it is great! I need to update my post to include it as it doesn't rip up the skin and is available at regular pharmacies and even grocery stores like Kingsoopers. It's called Nexcare and is blue. Here's a link to it on Amazon: http://www.amazon.com/Nexcare-Sensitive-Skin-Tape-Count/dp/B00B4UDXBI

Ally
4/5/2016 04:06:21 pm

Oh my gosh, Apria is THE WORST!!
We had O2 for a short time when my daughter was born, now back on for a couple of weeks. This time we have Major Medical Supply and so far it's a much better experience. We are also in the Denver metro area.

Reply
Taymar
4/20/2016 12:39:11 pm

Apria really is the worst! Good to know that Major Medical Supply is a good alternative option, thanks for sharing.

Megan Whitfield
10/24/2017 08:42:22 pm

Hi, I know this is a little old but my 1 year old has been on oxygen for the last 4 months. We had her sleeping in a baby lounger so she didn't roll around and mess with it for the first couple of months.... moms with younger babies this might also work for you. The one we used was the "daydreamer". Now that she's older and we've moved her to her crib it's been a nightmare...she is all over her crib and rubs her face in the mattress to get the cannula out. I so paranoid that she will get wrapped up in it that I usually just leave it off if she messes with it to much.its too bad the health care folks don't do a better job training us on these things.... I live in Denver too and agree that Apria is really bad. If you all have found a good support group i would really appreciate it. We are supposed to start cpap soon which will be a whole other can of worms. Pretty overwhelmed!

Reply
Jodi
4/7/2016 08:20:00 pm

I'm so happy to have stumbled on this post! My little 4 month old also has Down syndrome. He has pulmonary hypertension secondary to bad sleep apnea. He's been on oxygen for two months for nighttime/naps but we were just told
recently that he needs to be on 24/7... For at least some period of time. I've been feeling so overwhelmed about how I'm going to deal. Leaving the house feels like such a burden, I'm worried we won't be able to do all the things we were able to do before. During our first trip out we got quite a few comments from I'm sure were well-meaning strangers about my "sick baby". Your post has given me some ideas---but seriously I appreciate someone validating my feelings that "this kinda sucks..." Thanks again for the honesty :)

Reply
Taymar
4/20/2016 12:38:06 pm

I'm so glad that this post helped you, thank you for your comment. I hope it has gotten easier for you. Know that you are not alone.

Reply
MK
4/17/2016 09:16:49 am

Great article thank you!

Reply
Dani S
4/19/2016 07:26:07 pm

Between nexcare tape and an O2 kid lid, so far we have been able to keep the cannula on my 12 week old with sleep apnea. This morning I woke up to him having the cannula around his neck and he managed to get his arms out of his swaddle sack. I don't think we are going to be able to swaddle much longer. Do you have any suggestions to stop him from pulling the cannula off? I'm dreading his hands being free at night!

Reply
Taymar
2/7/2017 01:14:31 pm

Hi Dani, I imagine you've found a solution by now, but it is definitely a tricky thing keeping oxygen on at night, and it's scary when the baby gets tangled up in their tubes. I ran the tube down the front instead of the back so if he did get the cannula off he wouldn't get strangled. Putting socks on little hands can help prevent the cannula from getting pulled out, but it is a challenge. Did you find any solutions that worked?

Reply
Dani link
2/7/2017 05:47:23 pm

After we couldn't swaddle anymore, we started using a zippadee zip. With his hands covered, he has a harder time pulling it out. I had to sew a buttonhole in the bottom of the zippadee zip so it could run down and come out the bottom. When he started sitting and standing in the crib, he ended up wrapping the tubing around his neck even when the cannula stayed in his nose. Is Benny still on oxygen?

Molly Hanson
6/8/2016 10:31:11 pm

I'm so glad I found this blog! We live in Denver too and my 7.5 month old still wears o2 at night. He has trachamalcia and has had o2 since 8 weeks. I feel so lost sometimes about what to do and wish there were support groups locally for his condition or just for babies wearing o2. Maybe I missed it seeing it in other posts, but if there's something, I'd love to know. He is still swaddled fully so he won't pull the canula off, but keeps waking up due to wanting to roll over. I'm at a loss what to do. Any suggestions?

Thanks!!

Reply
Taymar
6/9/2016 07:31:00 am

There is not a support group for families of babies and children on oxygen that I know of, but that's a great idea! I'm moving from Colorado myself, so I encourage you to start a group yourself. You could set it up on Facebook or just create an email account and then ask your medical providers to share the info with other families. If you decide to start one and let me know I can help spread the word.

As far as your infant not liking the swaddling, it's getting really warm for that. Have you tried just putting socks over his hands at night so he can still move around freely without taking off the cannula? It's a challenging problem and I wish there was a better system for babies and toddlers on oxygen.

Reply
Sarah
1/7/2017 02:13:41 pm

Have you tried love to dream arms up swaddles? They work for me (mostly)

Rachel
8/25/2016 07:19:04 pm

Hi Molly, I was reading this great blog and wanted to introduce myself since it seems like I'm having a lot of the same struggles you are. My son has laryngomalacia and had surgery on his airway and now is on oxygen 24/7. He's almost three months old, and I'm having the same issues with swaddling. He's pulling his arms out of the sack and somehow removing his cannula at night. Have you found anything that works? I'm in Colorado Springs.

Reply
Dani
8/25/2016 11:41:43 pm

Hi Rachel,
We have had the best luck with the Halo swaddle sacks so far. On occasion my 7 month old can get his arms out, but it is rare. Our pediatrician wants us to wean from swaddling, and she recommended the zipadee zip. She thought the design might limit his ability to pull the oxygen off while still allowing him some movement. We haven't tried it yet, but plan to soon.

Alana Simmons
1/8/2017 01:01:51 am

Hi Molly - I'm wondering if you're still swaddling your son plus if he's still on the oxygen. I'd love to be in a support group or email chain for other parents of babies on O2. My email is alanaiturbide@yahoo.com if anyone wants to reach out.

Reply
Lyndon
6/29/2016 05:30:27 am

Thank you for this post. Dealing with the same issues!

Reply
Karina
10/4/2016 07:01:30 pm

I enjoyed your post. Try ultra thin duoderm under the tegaderm. It's less harsh on the skin than just tegaderm. I just ordered the sensitive grips for my daughters cannula. I was hoping they would be less harsh on her skin but sounds like it may not the case from your blog. We will see.

Reply
Alana Simmons
10/24/2016 12:31:34 am

Thank you so much for doing this post. It is very encouraging to know that we aren't alone.

My son is 5.5 months and has sleep apnea and laryngomalacia. He was on full time oxygen from 2 months to 4 months, and now is on it during naps and sleep. His sleep recently has been awful because he hates still being swaddled, but I haven't found a way to get him to leave the cannula alone. Our swaddle is the best I've found, though - Anna and Eve (https://www.amazon.com/Anna-Eve-Swaddle-Strap-Large/dp/B014SJ21RS)... Hopefully that helps someone. We also use the 3M Nexcare tape - quite an improvement as to the impact on his skin from the other medical tapes.

I'll try the sock idea on his hands, but he already gets easily overheated. Do you have any other ideas so he can't pull the cannula off? During naps, he even pulls it off while sleeping.

Reply
Dani S link
10/24/2016 08:18:09 am

Hi Alana,
My almost 9 month old is on oxygen for naps and bedtime for sleep apnea and tracheobronchomalacia. I dreaded the day we had to stop swaddling him. I have found that the Zippadee Zips keep him from pulling off his oxygen. They are a little pricey in my opinion, but that has been our solution to losing the swaddle. My only complaint is that they zip from the bottom to the top. If the zipped top to bottom, I would probably run the tubing inside down his back. He keeps the oxygen on pretty well, but my concern now is that he will wrap the tubing around his neck with all of the rolling he does. Good luck. If you want, you can reach out to me through my blog. It isn't up-to-date in a blogging sense, but I can definitely be reached through it. Good luck!

Delicatedani.wordpress.com

Reply
Sara
6/30/2019 07:12:18 am

Hi! My baby was a premie and at 38 weeks we needed up back at the hospital to find out my son has Laryngomalacia as well and sleep apnea. He’s 41 weeks now so 1 week post term. He’s on oxygen 24/7. Can you share some information on your experience please? The doctors are telling me it should go away by the time he’s 2 years old but I am having a hard time adjusting to it

Reply
Becki
10/31/2016 12:03:12 pm

Thank you so much for posting this blog! I'm in tears from several days of replacing cannula tape every few hours as my baby keeps ripping it off in frustration. I am going to go make those hats right now! I hope that your baby is doing much better now and is off oxygen.

Reply
Alana Simmons
10/31/2016 10:43:32 pm

Hi Dani -
I bought a Zippadee zip, but as you said, they don't zip downward, and my little guy wears a pulse oximeter at night on his toe. I'm going to try to switch the zipper around for now. I did contact the company, and they are working on a Zippadee zip that zips down diagonally. I was told it should come out in a few weeks (fingers crossed)!

I'm so worried about taking him out of the swaddle and him pulling the O2 off (can't use the zz until I get the zipper direction fixed)... But, the swaddle is causing other issues of him constantly keeping his arms and shoulders back - even when he's not swaddled! So, we have to do it as soon as possible. If you think of any other solutions, please let me know!

Reply
Dani link
11/1/2016 02:02:40 am

That would be wonderful if the company comes out with a zipper that goes down. I considered making one, but I have been short on crafting time since going back to work. Just this past Friday night my fear came true. I came home from working night shift to find my little guy with the oxygen tubing wrapped around his neck 4 times. Talk about scary! I'm just thankful he was okay. Let me know if you see the new style zipadeezip released!

Reply
Hazim
12/17/2016 08:16:59 am

Thanks for sharing.. I also have a child with oxygen supply and I share the same problems with the adhesive tapes.. doctors still can't figure out the reason he desats.. my God give us all the strength to cope.

Regards, Hazim

Reply
Alana Simmons
12/22/2016 01:38:35 am

Here's an update about my now 7.5 month old. He had another sleep study but still has central apnea (and some, but much improved, obstructive), plus he is still desatting. So, we'll stay on the oxygen at least until he's one year old.

We are no longer swaddling - we actually are going to physical therapy due to some developmental issues from swaddling too long, mostly involving him keeping his hands at his side as if he were swaddled even when he should have them out. (He looks like a seal on tummy time!). The zippadee zips are working well, although my mother in law sewed a new zipper that zips downward on each one so we could take the pulse ox cord out the bottom rather than up through the neck. He still does knock the cannula out with his little arm stubs, but it is much better than having his fingers free.

He still sleeps next to me in a bassinet but is just about too big. I'm hesitant to transition him to a crib because I don't want him rolling around and getting tangled in either the cannula tubing or the pulse ox cord. Any ideas there?

Also, he is jolting himself awake every hour to hour and a half from the apnea and I have to either feed him or give him a pacifier to go back to sleep every time. I'd love to hear what others have done for this issue. I'm not functioning well.

We still use the 3M sensitive skin tape every night. It occasionally comes off or. Evokes loose, but it beats the sore skin and harsh results of the stronger tape removal each day.

Thanks again for sharing. It's good to know there is a community out there dealing with this challenge for our little ones.

Reply
Alana Simmons
1/8/2017 12:56:09 am

Reply
mccclain
2/4/2017 07:41:20 pm

Hi,
First, Benny is a beautiful boy! And 2nd- thanks for being so honest. I came across this researching ideas for keeping the cannula IN the nose as we are really struggling with this. I will try that Tegaderm Film!
I have 2 suggestions: an oil for tape removal and Owlet pulse ox for peace of mind. Will go into detail below.
My son went home from the NICU on oxygen back when he was 3 months old and it was scary then but we could still swaddle and he slept nearby. Now at 14 months he has just gone back on oxygen for sleep apneas and desatting which I was devastated about. I feel your frustration as most people don't get how hard just the basics are, like putting him down for a nap. He also has an older sister and twin sister, thankfully her breathing is fine but it's exhausting just getting through the day. Anyway I do have 1 tip for the sensitive skin. I use a dry coconut oil spray that I got for my dry skin but tried it for him. I spray a little on my fingers, rub it over the tape, then spray again on fingers and rub into his skin as I peel the tape back. He doesn't seem to get upset by this and his skin is less red. Although I was going to have to go back to tender grips AND tape as he is older and strong and can pull everything right off. We have tried 5 diff. tapes all along the tubing vertical and horizontal by his ears, but he can pull it right off and get the cannula tubing around his neck. Having and older active baby with plastic tubing in his crib is terrifying and the sleep clinic Drs. just keep telling me no baby has ever strangled themselves with it... but that doesn't really help me relax. I watch the monitor and pulse ox numbers obsessively.
My other tip isn't about the tubing but everyone using oxygen should get this, the Owlet pulse ox and heart rate monitor. It's pricey but amazing, I could not sleep until I had this and have checked it at my Dr office against their pulse ox and it is accurate. It has saved my son already 3 times by alarming when his oxygen went below 80. We would have had no idea but the alarm sounded, we had to rub his back hard and crank up the oxygen for a few minutes but he came back up. I now can watch the numbers from the Owlet app on my phone and know as soon as it hits 93 or lower to go in and check. And every time he has pulled the cannula out and its just above his nose. It makes me have some peace and able to sleep small amounts at a time. This company seems new (maybe 3 or so years old) but I wrote them and said every NICU should be sending parents home with this instead of us stressing and watching to see if they turn blue (which my son did a few times when he first came home, ER visits and back into NICU- terrible thing to see).
We are really looking for a better tape or something to secure the cannula at this point and hoping he comes off oxygen at the next sleep study in a month or so. Good luck to all dealing out there!

Reply
Dani link
2/7/2017 10:05:06 am

Hi there!

I have had our Owlet since our little guy was 7 weeks and we found out about his sleep apnea and need for oxygen while sleeping. I would not get any sleep without it!

I see your little one is 14 months now. Do you find that the owlet is starting to get small? My son just turned a year old, and I am concerned he is going to grow out of it soon. There is a new monitor coming out called the Neebo that has a wrist strap that they say should fit up to an average 5 year old. I'm nervous to order it though because it hasn't been on the market yet. We have another sleep study in March, and if he doesn't need the oxygen anymore, I might be ok without him wearing it, but if he does still need oxygen, I really feel I have to have a monitor.

Reply
McClain Robertson
2/7/2017 10:23:13 am

Hi Dani,
Sorry thats a long time dealing with oxygen! I ordered to size 4 sock from Owlet and it works well, even maybe a little big so we also put him in a sleep sack or cut a hole in the side of the footie PJs when its cold :)
I suggest calling to order as the sock isn't $ but the shipping is. They were super helpful as they don't sell it in store so gave me a promo code to use that discounted the shipping by I think $16 because I wanted it overnight. Let us know if you try the new monitor, although I am really happy with Owlet and will prob. use it for a while. Good luck, these bigger guys make keeping the cannula on such a battle!

Dani link
2/7/2017 10:39:42 am

Hi McClain,

We have actually been using the size 4 sock for a few months now! How big is your son? At his last appointment a month ago, my little guy was 21 lbs. It certainly is difficult to keep the cannula on as they get bigger!

You mention using a bunch of different tapes and securing near his ears. You may already do this, but how about tape on his cheeks right near his nostrils? We use the blue 3M nexcare sensitive tape, and we have to put a piece on each side of his nose, and near each ear. He wears a zippadee-zip too. He does occasionally mange to get the cannula off still, but I find he has a harder time finding a place to grab onto with the tape in those spots.

I did end up placing a pre-order for the monitor just a few minutes ago. They only have so many for pre-order, and the amount is down to 3%. It also looks like the price will go up to $319 regularly, while the pre-order price is $200. They aren't supposed to start shipping until April though.

If you do want to check it out, I have a referral link that you can save $10 (I would also have $10 taken off my order price, just so there is complete disclosure). This is the link: https://neebo.io/g1gu/neebo10

Good luck to you as well!

Reply
McClain
4/6/2017 07:47:05 pm

Hi Dani, How is your son doing? I wanted to let you know owlet just came out with a new sock that is open over the toes, -and can be used on either foot and fits so much better. Walker is now over 23lbs and it's worked well. And exciting news in our home- as of today his pulmonologist said he's ready to be off oxygen! I feel like a little kid on Christmas morning I've been so happy and excited. But I also feel much better going into tonight with the Owlet on! -and we did an overnight pulse ox test thru the Dr 2 2 weeks ago with no oxygen and although he dipped into the 80s he came back up quickly. They said he still has sleep apnea and will hopefully grow out of it but can recover well. Hope this is it for nasal cannulas and all that crap. And hope you have the same soon too! Wish I could attach a pic but don't see how. My husband got the cutest little cake to celebrate tonight :)

Reply
Taymar
4/11/2017 09:33:26 am

Congratulations on getting Walker off oxygen!! Great news about the Owlet sock, we were one of their beta testers early on, so it's great to see that they are still improving their product. I'm not sure how to attach a picture either, I would love to see one. I'm working on setting up a group for this topic to make it easier to share tips and pics, I will keep you posted.

Dani S link
4/11/2017 07:12:36 pm

That is wonderful that Walker can come off oxygen! Raylan had a sleep study that showed a significant improvement in his sleep apnea, but he still will need the oxygen for sleep. I will definitely look into ordering the new version of the sock. I ended up cancelling the pre-order of the other monitor because it got pushed out another few months. For anyone interested, I did create a Facebook group that you are welcome to join! I think it will be a great place for connecting. https://www.facebook.com/groups/142644329580028/

Sara
9/12/2017 11:03:59 am

thank you all for sharing - i am in denver too and dealing with altitude oxygen. all these tips are sooooooo helpful. just requested to join fb group too.

ArI
3/16/2017 02:47:54 pm

I am glad I found this! Every group thread is from years ago! I love some of these ideas thanks everyone. Our issue however is that our daughter is now pulling the prongs out abd down into her mouth and sucking/chewing on them from teething. I try to offer her different things but it's like the cannula is her security blanket instead of just her thumb. Anyone else having this issue? Emery is our baby girl and she was born at 25 weeks and has had oxygen since we came home from the NICU in Nov 2016. She had a pda ligation and has pulmonary hypertension from that and only needs the oxygen whole she sleeps.

Reply
Taymar
4/11/2017 09:30:50 am

Hi Ari,
Benny used to do that too! Keeping that cannula in the nose is so hard, especially at night when everyone needs to sleep. Have you tried using some of that Nexcare sensitive skin tape at the nose? It doesn't rip the skin up as much, so that definitely helped us for nighttime oxygen. I also wondered sometimes if Benny was getting oxygen when he sucked on his cannula, and that was easier for him than getting it through the nose. Is she stuffed up at all? We would spray saline in Benny's nose until it ran out the other nostril, and then suck everything out with a nose frida, and that helped keep his nose clear. If she's just sucking because she's teething, and only likes the cannula, maybe you could try giving her another cannula that's not in use to suck on? I know it's tough, hang in there!

Taymar

Reply
Kerry
4/6/2017 04:00:17 pm

I'm in Northumberland in the UK - my daughter is on home oxygen after being born three months early. Thanks for all these tips, they are most helpful. I'm desperate for her oxygen not to look as obvious. I'd be grateful for any tips on securing oxygen tanks when travelling by car if anyone can help! Xxx

Reply
Taymar
4/11/2017 09:46:09 am

Hi Kerry! I hear you on wanting a more elegant oxygen solution for babies, and it is something I have been working on and will keep you posted on. I found using a cute hat to hold the tubing in place helped with the cuteness/visibility factor. As far as car rides, I found the smaller oxygen tanks with the backpack helped with mobility for short outings. You might have to request it from the oxygen supply company, they did not even mention it to us as an option we found out from a friend, so that might be the case for you as well. For longer outings in the car, a larger tank and some kind of portable pulse ox like the owlet sock is helpful. You can just prop the tank below the car seat in the space where feet would normally go. It is all a huge pain, and thankfully most likely very temporary. Hugs and congratulations on your new baby girl!

Reply
Sarah
10/29/2018 01:28:44 pm

I know this a bit old now - not sure if anyone is still using this thread. When you say the owelt is a "portable pulse ox" - can you use it on the go (like actually in the car)? I have heard mixed things but am about ready to trash the table top pulse ox we got from the home medical supply company.

Taymar Pixleysmith
11/1/2018 05:00:39 pm

Hi Sarah, yes, the owlet is completely portable. It's a little smart shoe the baby wears on their foot and you connect to it via an app on your phone. It was such a relief to have a portable, easy solution for monitoring your baby's oxygen levels, I highly recommend it.

Christy
6/1/2017 08:46:00 am

Hello we have a 9 year old on oxygen ( his whole life). We use this tape called mepitac it is the only thing that doesn't mess up his very sensitive skin. Just so you know fortunately as they get older it gets little easier because he can know carry his on o2 tank in a backpack... he is on small flow and I found these small tanks about the size of 20oz soda bottle and they last him couple hours. He can go out now and ride a bike by himself.

Reply
Taymar
6/7/2017 04:34:59 pm

Thanks for sharing that Christy, I have not hear of Mepitac, I will have to look into that. Good to hear that he can be independent on oxygen.

Reply
Melanie
6/25/2017 09:57:52 am

Hey there, I know this post isn't too recent, but just wanted to say thank you so much for all this information! We just had to put our 2 week old on o2 a couple days ago and have been feeling so upset and daunted by the prospect of dealing with it all. It's such a relief to know there are ways to make it easier. We are going to try the nexcare tape and hats today. I'm also excited to know there are smaller backpack o2 tanks! I was so sad that I wouldn't be able to wear him with the oxygen. Thank you again so much!

Reply
Taymar
8/16/2017 02:58:49 pm

Hi Melanie, so glad to hear that this post helped you with your own oxygen journey. Thanks for sharing!

Reply
Alana Simmons
6/25/2017 04:59:06 pm

Some of us are still here! Be sure to join the FB group Dani started (link in a few posts above)... we keep each other updated on the sleep studies and statuses of our little ones, plus discuss traveling with O2 (now done 3 trips on 2 different airlines!)... I personally didn't find the hat that useful, but we still use the Nexcare tape. My son is almost 14 months now and our recent study shows he still needs the oxygen... good luck to you!

Reply
Taymar
8/16/2017 03:01:27 pm

Hi Alana, that's awesome that you started a FB group! I hear you on the hat, I found it worked really well when Benny was smaller, but as he got more mobile and the cannula could slip around more easily we had to also use tape.

Reply
Angie Uma
7/21/2017 08:08:50 pm

I'm so glad I found this blog, I started feeling very depressed and lonely, didn't even want to talk to close friends because no one can understand my situation. Long story short, my baby girl Olivia was born full term via c sectiin on May 22, 2017 with pulmonary hypertension and small holes in her heart. After two weeks in our local hospital she didn't show any improvements and we were airlifted to Gainsville, Shands Children's hospital. She underwent cardiac catherization procedure to find out what the problem was without any success. She was put on various medications such as steroids via iv injections, antibiotics, other medicine I don't remember, and all kinds of tests like EKG, Ct scan, x rays, you name it, she had it all, and still no clue of the cause of hypertension. One of the pulmanologists suggested she has a lung desease, abnormal surfactants, so they started a treatment for that particular desease, meanwhile sending her blood to the genetic institute in Boston. Her condition was "stable" at the hospital with the help of oxygen and some medication so finally, after 5 weeks in both hospitals combined she was sent home with the oxygen ventilator, and other equipment to monitor her heart rate and oxygen level, also on three different medications, one of them cost over 6 gramd. Little we knew our troubles were far from over when we received genetic test result from Boston. Turned out she didn't have what doctors thought she had, instead she has a lung desease so rare, there are only about 200 cases are known in the whole world since this desease was discovered in 80s, it's called alveolar capillary displasia with misalignment of capillary veins. The doctor who broke the news to us looked at us funny and told us there is no cure, no studies about the desease, it's 100% fatal, and he is not sure why she is still alive because usually infants only live a few days and are diagnosed post mortem. The weird thing is, she looks super healthy, she eats like a champion, gained almost 4 lb in two month of her life, her diaper content is normal, she is very active and on track with her development. So here we are, having a normal looking baby at home on oxygen and one of the medicines, the expensive one, that we had to pay over 2 grand out of pocket for a 60 day supply, tens of thousands of dollars in bills for staying 5 weeks in two hospitals, and still don't know what the future holds. The only treatment is a lung transplant, and it's only 50% chance of survival and normal existence afterwords. They also considered doing biopsy, but it's a very dangerous procedure for such a little baby. I still have my suitcases in a closet nearby just in case we have to go back and stay for awhile. I'm most certain that after my 4 month maternity leave is over with, I would have to quit my job because no one will be comfortable caring for a baby on oxygen, even her own grandma. I will be worried sick about her too, she can't even catch a cold without being hospitalized because she won't be able to breeze through her nose. My husband already started working second job to pay all the bills and we are selling some property to pay for medical bills. And we have two older boys, one in elementary and one in a middle school, that I have no idea how we will be managing dropping off and picking up from school s. Having that damn outdated oxygen equipment is so inconvenient and frustrating. You think, with all the modern technology they would come up with something wireless or lighter in weight so it's easier to manage. We had to get a double stroller to fit all the pieces in, she has 15 pound oxiden concentrator, flow monitor metal box, monitor that constantly goes off because she kicks her feet or repositions her body, and long cords with heavy power adapters. Try to load it up in and out of the car! Besides, someone needs to stay with her on the back seat to monitor her equipment and watch her, so forget about me getting out of my house any time soon for anything unless my husband is home. There is no way I'm taking her anywhere on my own with all that crap attached to her. Besides, I hate it when people make comments, any comments, even nice ones will irritate me. I'm glad I read some tips about how to keep her cannulas in place, what kind of tape to buy, because she hates it a pulls it off every day. That's why our bassinet doesn't work for us anymore, we have spent hours at night holding her hands, standing over the bassinet. The only solution that works for us is a co sleeper bed that we put between us in our king size bed, so we can hold her hands when she pulls a huddini, frees her hands and pulls her cannulas off over and over and over. That way we can keep a close eye on her at any time. We found one on Amazon that is kind of oversized so she can grow in to it, she is a big baby, very long. There is no way I'm letting her sleep in the crib. So this is my story, we are very new at this, just figuring everything out and

Reply
Taymar
8/16/2017 03:08:12 pm

Hi Angie,
I'm sorry I missed this comment for awhile. I hope you are doing okay with your miracle baby. Your story breaks my heart, the pressure you must be under with medical bills piling up and a lack of support. There may be support that you can get that you are unaware of.

First of all, you may be eligible for Medicaid assistance, even if you have private insurance. This depends on what state you live in, but we were able to apply for and receive a Medicaid co-insurance that took care of the additional hospital bills.

Secondly, there is something called respite care that you are most likely eligible for. This will pay for a nurse who can come to your home and give you a break so that you can have a good nights rest and some time off.

I'm sending you virtual hugs right now, you are not alone.

Taymar

Reply
amna link
8/16/2017 04:49:49 am

I wanted to come back and write you a comment saying how thankful I really was for this post and tell you YOU SAVED OUR CHILD. Last year our surviving DS twin (who was born 3 months early and spent almost five months in NICU) finally came home on oxygen awaiting for heart operation. We took her home without being trained on how to react to emergencies, no information was given just relaid on what I observed first hand during her stay in NICU. We were so happy that finally we'll be home and live normally at least for a while. Before being discharged I read many articles on home oxygen care and this post came up. I took note of what you said here: "Unfortunately, Benny was nearly drowned when my husband accidentally tipped the water over into his oxygen line." THAT happened during the first 5 minutes we were home. I just entered the bedroom carrying my baby in my arms and a backbag with small oxygen in it. I just sat down and decided to put the bag on the floor and thats when it happened. I immediately heard the water going into the tube and removed it from her nose. Yes I was panicking but I acted on the information I read here that this could happen. It was longest 4 minutes of my entire life. but thankfully we connected her to the oxygen generator. she spent 3 and half wonderful months at home before she caught an infection that sent her to PICU for four months,got better then got a tracheostomy and heart fix was too risky so she was on comfort care the last 2 months of her life. she passed away April 2017.
I just came to say thank you. I always thought how that line you wrote helped me continue to read and educate my self more about her case. I also warned a fellow DS mama whose baby was going home on oxygen and sge ran back to the ER because it happened too.

From the bottom of my heart Thank you <3

Reply
Taymar
8/16/2017 02:57:15 pm

Thank you for sharing your story. It made me cry to hear about your loss, but I'm so glad to hear that by sharing my story I was able to give you two more months with your precious daughter. I am currently working on some ideas for creating better oxygen wear for babies, as well as to create a better online community and more support for parents around this topic. Thanks for inspiring me to continue working on this important mission.

Reply
Erin
9/8/2017 05:32:05 pm

I'm so thankful I stumbled across this article! My daughter spent 30 days in the St. Louis Children's Nicu for obstructive and central apnea of prematurity, though she was considered term at 37 weeks. She was desat and have bradycardia while feeding and resting. I cried every day while there and blamed myself for the possibility that my Type 1 Diabetes may have something to do with it. They finally sent us home but with oxygen and a pulse oximeter. I still get very emotional and frustrated with it all. I took her to the pediatrician recently and got my first look of pity from a friend. I know it was not meant to hurt me, but you said it perfectly. You want someone to say how cute they are, not ask what's wrong with them. I'm interested in your tape tricks. She constantly rips of her cannulas and the stickers are so harsh on her skin. I'm going to try Tegaderm tonight since that's what I already use on my diabetes sites. She's been on the oxygen for two months now and will be for at least another month until her next sleep study. I pray every night for good results and a normal life, though I know it could be so much worse. Thank you for this blog post!

Reply
Oxygen Concentrator Hollywood link
10/23/2017 04:39:38 am

Without making efforts you will not able to know about how to use such oxygen tanks at home. It seems like you have a good experience of using this oxygen tank on regular basis.

Reply
Alana Simmons
10/23/2017 09:57:58 pm

I first want to encourage all of you to join the "My Child Has Sleep Apnea" FB group Dani started. It is super helpful on keeping each other informed in a bit of a less cumbersome way than this blog posting.

As an update, my little Harrison is just about 18 months. We don't have our 4th sleep study scheduled yet as he still desats if the cannula comes off (or I forgot to turn it on, which happened once when I couldn't figure out why his sats were low in spite of checking that the cannula was in his nose multiple times... duh!), so we know he's not yet ready to be off the O2. We recently saw a geneticist who is really pushing us to get a brain MRI to see if that will indicate what is wrong. They said it's not usual for a child to need oxygen for apnea this long. Harrison also has low muscle tone in his legs, which is concerning to the doctors.

We are doing early intervention (which each state offers... feel free to message me on FB for more info). They come and work with him twice per month on developmental issues. We also see a private PT twice per month, too. He started crawling at 14 months and is close to starting to walk... we think the PT is helping.

We are looking at starting speech therapy soon as he hasn't said any words yet. The doctors think the lack of oxygen could be impacting the rest of his development, or perhaps whatever is causing his sleep apnea is also causing the developmental delays. We will be doing some genetic testing, as well.

With regard to the O2, we still use the blue 3M sensitive tape. It doesn't irritate his skin when we take it off every morning. He is on both a prescribed pulse oximeter and the Owlet (largest size should fit him for at least a few more months... we are on the Neebo wait list.). We are using the zippadee zips still, as well, where my MIL sewed a zipper that zips downward instead of upward so the pulse ox cord can come off his toe without going out his neck. The issue with the zippadee zips is we are in between the L and the XL sizes... l is too small, but XL is humongous!

The cannula has wrapped around my son's neck a few times since we transitioned him to the crib from the bassinet about a month ago. I've found that if I start wrapping the cannula around his waste instead of his neck, then it prevents the neck strangling issue when he rolls since it just goes around and around his waste. (Not comfortable, I'm sure, but much better than around his neck). I hope the rest of you are doing well. We are looking at staying on the o2 at least until he's 2, if not longer if the stupid apnea doesn't resolve...

Reply
Megan Whitfield
10/24/2017 09:29:56 pm

Alana, my lil one just had genetic testing and is also in the DDRC early intervention program. Hope we can catch up on Facebook because I think we have a ton in common with these kiddos. I know the genetic
testing thing is super stressful and I'm sorry you have to go through it. Skye was diagnosed with a really rare genetic condition which was a bit shocking at first, but now things make sense and we know how to help her and what to look out for.
We have started taping the cord around her waste too and it definitely works better which means I sleep better too!
Stupid apnea is right!

Reply
Megan Whitfield
10/24/2017 09:15:43 pm

Thank you so much for starting the Facebook group and this discussion! I just requested to join. Only wish I had seen this sooner, so many awesome tips I could e used months ago!! Our little Skyler was diagnosed with severe obstructive sleep apnea at 7 mo.(she also has some central apnea). She had surgery for laryngomalacia when she was 9mo but the doc found tracheomAlacia on the scope as well.
I have felt so alone until I read this, I don't think anyone else really understands how disruptive it can be. I was waking up to an alarm to check on her every hour for the first 5 mo and was a total zombie. Our pediatrician wouldn't give us a pulse ox and told me the owelet was unreliable.
I think everyone above has covered the tips I would've shared.... for the littler babies, we used a daydreamer sleep bed so Skye wouldn't squirm around as much and it was awesome until she got too big. I didn't worry about her getting wrapped up nearly as much as I Do now that she's in her crib. Does everyone use saline at night before putting the oxygen in? This helps a lot too and is really important when they have a lil cold
On top of the apnea.
We have been practicing with the cpap now for a couple of months and have another sleep study coming up.
Kinda makes me wanna cry but we will get through it. Hang in there ladies!!

Reply
Emma
12/13/2017 01:22:09 pm

Hi,
We have had our son on oxygen a lot in hospital but always come home without it. After a 6 week stay we're going home on oxygen at night. I totally get how devastated you must have felt going back onto oxygen. It's hard to be upbeat all the time and actually I think it only helps those around you to deal with your situation, not you! Thanks for the wonderful tips here. xx

Reply
Taymar
12/18/2017 01:06:22 pm

Hi Emmsa, I'm glad that this post was helpful for you. Keeping oxygen on your little one is a challenge, glad this could make it a little easier on you.

Reply
Jennifer
1/31/2018 09:39:23 pm

Just wanted to thank you for this blog. We were so overwhelmed when we learned we’d have to take our daughter home from the hospital on o2, and i first found this thread then. She’s now 4 months old and based on her most recent sleep study has improved greatly but needs to continue on o2 at least a little while longer. As we’re searching for solutions for how to keep her cannula on overnight now that we have to move away from swaddling, I came across this thread again and just wanted to let you know how helpful it is now, and it was then- when things were just a little too intense for me to even think to post!

Reply
Taymar
2/7/2018 11:27:21 am

Thanks Jennifer, it warms my heart to know that this blog post has helped other parents dealing with keeping oxygen on their little ones.

Reply
John
4/25/2018 07:12:06 am

I am deeply moved by your upbeat attitude and your carefulness. Benny is a adorable looking baby and I hope everything goes well for him and he can just run around enjoy stuff without those awful tubes. Sometimes we are made to endure hardness just so we can enjoy the bright side of live more. You are a strong woman and I am very proud of you and Benny.

Reply
Tracey S
5/18/2018 04:28:38 am

Our baby is 9 months old and we just started the oxygen weaning process, and I loved seeing a normal little baby face..... then a recent sleep study showed he has to go back on. I totally get how you feel. Thanks for all the tips. I’ll definitely be googling the nose gel... I didn’t know they made such a thing.

Reply
Ananya
10/10/2018 06:25:48 pm

Hi, Could you please tell me what is the nasal gel you used? And how do you apply it? Thank you.

Reply
Alana Simmons
10/10/2018 11:14:13 pm

We used Ayr nasal gel and just dabbed a bit in my son’s nose. His nose does a lot better now that we have a humidifier hooked up to the oxygen so the air he’s breathing is a bit moist. Also, be sure to get on the My Child Has Sleep Apnea Facebook group for wonderful support from other parents with similar concerns and questions!

Reply
Vv
4/3/2019 05:51:37 pm

I have a preemie on oxygen 24/7. Theses are some things that work for us. Use skin prep pads prior to application of any tape, tender grip, etc. it reduces the redness. Sew small velcro tabs on sleep sacks to put tubing in to keep away from face. Put the tubing going down the back instead of the front. Sew muslin mittens with elastic at the base (they are cooler than socks).

Reply
Holly Alexander
7/1/2019 03:06:05 am

Hello thanks for you’r tips they’re really helpful my baby boy was born at 25 weeks and is still in NUCU at the moment but will soon be off the vapotherm and on oxygen at home I have been terrified and worried thinking about what will happen and how it will work we have a big dog and 2 other kids so am stressing about where it will go and will it be safe 🤦‍♀️ I know how u feel she. You’re fed up of explaining g yourself ! So many people ask I forget who I’ve updated already and what they already know !! It’s tiring! Btw your baby is absolutely gorgeous 😊

Reply
Amiw
5/16/2020 11:39:36 am

Hi, yes, your post is helpful, even five years later :) My four month old has Down syndrome and CHD and is on oxygen. I have been hoping all along that she would come off soon. But, I have finally decided that I need to accept that it might be awhile, and in the meantime find out some things that work better than staying in the house all day because she is on oxygen.

Reply
Jessica Thompson
6/17/2020 08:08:24 pm

This is a lifesaver!! I stumbled upon this page after my son tore our last tendergrip bandage off his poor red cheeks. The cap stays in place and my son is much more comfortable. Thank you, thank you, thank you!

Reply
Taymar
6/20/2020 08:19:41 pm

Yay! So glad you found this and it helped you.

Reply
Curtis
7/17/2020 01:57:24 pm

Thank you for your info. Our little one is Tri 21 and has heart issues as well. How is your little one doing today? This is such a scary time as he is 9 months old and we are preparing for his fifth procedure (this one open heart)...

Reply
Rachel
11/2/2020 01:39:37 am

Thank you for sharing! We are now finding out our oxygen situations might be a longer term thing than we were initially lead to believe. So excited to try out some of these ideas and read the rest of your blog for additional DS insight.

Reply
Martin link
1/1/2021 08:52:29 am

Thanks for tthis blog post

Reply
Brooke Powell
8/18/2021 10:40:43 pm

Thank you for your realness. It does suck to have a baby on oxygen, there is no other word, I haven’t left my house in weeks. Reading your blog made me cry in a good way. Maybe I’ll actually leave the house tomorrow. Thank you. I need this community

Reply
Taymar
8/19/2021 06:04:05 pm

Hugs, I'm so glad my post helped you. Thanks for taking the time to let me know.

Reply
Kayla
6/25/2022 09:34:58 am

Hello!
Thank you for the helpful advice and support. I made a hat for my almost 2month old. He has been on oxygen since week 2. I am so excited to give his skin a break! However the hat won't stay in place, and thus removing his nasal cannula. Is there something I am missing? How do you keep it in place when he is moving his head and touching his face. I do keep gloves on him bc he pulls his cannula out and rips the tape off his face. I really want this too work! Any ideas or tips would be appreciated!

Reply
Taymar Pixleysmith
6/30/2022 04:39:34 pm

Hi Kayla,

Sorry it took me so long to get back to you, I had to unsnarl some stuff with my website. One of the issues that can happen with setting up the hat to hold the cannula is that if the hat material is too stretchy it can make it too easy for the cannula to get moved around. Try attaching strings to a hat with a firmer material. I also found that fastening the cannula tightly under the chin allows you to really keep it on well, and then stringing the rest of the oxygen tube down through a shirt and pair of leggings, or a pair of footie pajamas that snap, so that the tube isn't dangling out where the baby can snag it and pull it out of his nose Please feel free to text or call me at 619-990-5773 if you have more questions, I really want this to work for you, it makes it sooo much easier!!

Reply



Leave a Reply.

    Archives

    April 2022
    November 2021
    January 2021
    August 2020
    January 2020
    October 2019
    March 2019
    February 2019
    October 2018
    March 2018
    November 2017
    September 2017
    August 2017
    June 2017
    December 2016
    November 2016
    March 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    March 2014
    December 2013
    October 2013

    Picture

    Author

    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!

    Categories

    All
    3D Printing
    Agencies
    Asylum
    Baby
    BDW
    Books
    Breastfeeding
    Cooking
    Crowdfunding
    Dairy Free
    Disabilities
    Down Syndrome
    Down-syndrome
    Education
    Eugenics
    Film
    Freddie Gray
    Fundraising
    Gluten Free
    Health
    Heart Defect
    Heart-defect
    Inclusion
    Interview
    Mentors
    Music
    Native American
    Oxygen
    Parenting
    Portland Oregon
    Pregnancy
    Racism
    Rants
    Relationships
    School
    Social Justice
    Special Needs
    Stanford
    Start Up
    Technology
    Thyroid
    Valentines Day

    RSS Feed

copyright 2014 Taymar Pixleysmith
contact | about | portfolio