Mom of 4 month old, bummed, low compliance, need "therapist"

Just a reminder though, that while 'burying' your head in a pillow, make sure not to cover up the CO2 vent holes... would not be much help if that happened.

Just wanted to respond to your post as I can somewhat relate to you. I don't have sleep apnea myself, but I am the mother of a 4 year old with OSA, a 1 year old who I suspect has OSA, and the wife of a OSA spouse. I know my husband wasn't able to wear his CPAP when we were in the rough time of waking up every 2 hours. He just felt it was too difficult between the nighttime feedings, our older son's persistent wakings every few hours, etc. Time was so short, that even filling the humidifier was too much for him.

The baby is now a year old, and my husband is now going back to regular usage. He feels so much better. Having children is wonderful, but they really can drain your physical and mental resources especially when you are not sleeping. I think when your baby is giving you longer stretches, you will find your coping skills will be better and that it will be easier to tolerate your CPAP machine.

I also want to share that my 4 year old has had both tonsils and adenoids out and his apnea did not abate because his apnea is due to small jaw size and narrow palate. Surgery is not a guarantee that you won't need CPAP.

Hang in there! It is really rough, but it will get better.

It may or may not be too late for this baby (worth a try!) but for your next baby try a book called *The Baby Whisperer*. This book explains how to teach your baby to soothe herself to sleep --naturally and happily (NO crying it out, EVER!)

We didn't know these techniques for our first child and it was THREE YEARS before she slept through the night. Someone put me on to these techniques when I was pregnant with my second, and we started with them the day she cAme home from the hospital. Within six weeks she was sleeping through the night and NEVER woke during the night any more. A miracle!

It's simple techniques if you start ASAP. When your baby wakes you feed her as much as she'll take. Don't let her sleep at the breast or bottle--you don't want her to associate nursing and sleep. I waited to change the diaper until she was falling asleep while nursing because it woke her back up again. And then fed her more so her little tummy had enough. When done nursing try to keep your baby awake--in early days that may only be one or two minutes. Love them, hold them, talk, read a book or sing a song. When your baby is still awake (very important!) but in a calm, quiet state, put her down in her bed, smile and tell her how wonderful she is and that she is so smart she will go to sleep. And then let her!

This worked so well! We only had one or two times she cried after I put her down. I'd pick her up, soothe her, and remind her (and myself) that she knew how to go to sleep and I trusted her to do so. And then she did.

When we used to put this kid to bed, she'd smile, so happy to be in her bed. And she'd sleep. A rested baby and rested parents is a beautiful thing! We never had to "Ferberize" this child--it was horrible we had to with her older sister.

We gradually increased the time between feedings by stretching out the feeding schedule in 5 to 15 minute increments when apprpriate, but always after waking so that her little tummy could go a bit longer.

The acronym is EPS:
Eat (nurse) first thing after waking.
Play until the baby is ready to sleep
Sleep

I didn't have sleep apnea when my children were babies but I don't remember getting very much sleep at the time.
Try as much as possible to get your baby and yourself on a regular schedule.
Forget the surgery. Compared to CPAP the results are poor.
Watch out for that post-natal depression.
above all keep at the CPAP therapy, you are getting some great advice here.

I get more rest from two hours of sleep on CPAP than a whole night of sleep without it.

Looks like we only have one thing in common. Hating the darn machine. I am otherwise healthy, athletic male and recently turned 50. I have been on the machine for just over 2.5 years. Due to obstructive and central apnea doctors have not found a "good" pressure setting for me. I spent one year of this time trying to work it out myself. That was no better. I quit using my machine for a while during which three friends died of apnea. Wife wont let me sleep without it now. She is ths cuddle type but hard for me while tethered to an air compressor. Now we have our timed 30 minutes of cuddle time then the timer beeps and the mask goes on. Have to have the timer or fall asleep and forget to put on. Due to my snoring one of us slept in other bedroom most nights. Either I got tired of her telling me to roll over and stop snoring and left or she got tired of it and left. Every night was a battle of attrician. Now we go to bed, 30 min later on goes the mask and now we end up in the same bed 5 out of 7 mornings as opposed to never without the hose. I bought lots of masks and done a lot of sleep studies. While my apnea is still not controlled it is better and the snoring stopped. All I can say is figure it out so your kids dont get raised by a single Dad. I am sure your husband would prefer you alive and less tired too. Keep trying masks if it takes 20 to get the one that works. Then stick with it. I went from averaging 15 to 45 minutes per night to 6.5 hours a night just because I finally found the right mask for me. Do you mind if I put you on my prayer group list? God seems to listen the more people pray over something.

I really feel for you in this situation. You definitely have to watch out for post-partum depression. Is there any close family member or friend who can come and take over nighttime feedings even once or twice a week? How about weekends when your husband is not working? If not at night how about someone to help out during the day so you can get some uninterrupted sleep then? You and your precious baby will be in my prayers too. Please keep us posted.

CAsleep -

Your post was very moving. Your frustration with your situation is clear. There has been some great advice for you in the replies, and I hope that a few of my thoughts and experiences might also be helpful to you and others who are trying to adjust to using xPAP.

When I think of my own experiences since starting to use a CPAP about seven years ago, I see that I had to make both emotional adaptations and practical adaptations over time. You're clearly wrestling with both of those right now, and that's something you have in common with lots of people. It's not just you. I'll share some of my own experiences and offer you my specific suggestions based on what you posted, and speak to both the emotional and practical issues. This is a pretty long post, but hopefully worthwhile.

For many of us, it's easy to look at adapting to PAP as one big change we have to make in our lives. That was the way I looked at it in the beginning. What I discovered early on is that it's like many of life's other major changes: what looked to me like one big thing was actually something I could get to by doing a series of little things better and better over time. You've probably seen that old quote about how a journey of a thousand miles begins with a single step. Really, the entire journey of a thousand miles is a series of single steps, one after another. The good news is that there won't be nearly that many steps on your journey to being consistent with your CPAP. Some of the steps will be easier than others, but you can get there.

That idea really helped me get perspective on living with a CPAP. Like you and many others here, I was offered surgery as one approach to managing the OSA I had lived with for years before it was diagnosed. I'm not qualified to advise you if surgery is or isn't the right approach for you, but I can tell you why I decided against it for myself. The first strike against it happened when the first ENT I saw after my OSA diagnosis had started talking about scheduling surgery before he had even examined me. Big red flag. I got a referral to a different doctor who discussed the pros and cons of two different surgical procedures and other options, including CPAP. At first, a surgical "fix" for the whole problem appealed to me, but as I looked into it, I discovered what others here have stated: the chances that surgery could eliminate my OSA were about 50/50. For me, that was strike two. Even with the best outcome, a surgical fix would most likely have been temporary. Since it's not always practical or possible to repeat the surgery, it looked like living with a CPAP was just a matter of time for me. Strike three. Rather than go through the pain and recovery of surgery and bear the risks that go along with any surgical procedure only to eventually be on a CPAP anyway, I decided to give CPAP a try.

Honestly, at the time, it felt like deciding between three awful options: surgery, CPAP, or living with the health risks that would build up if I left my OSA untreated. Although I didn't relish the idea of surgery, the idea of "being hooked up to a machine every night for the rest of my life" didn't fill me with glee, either.

Being a single man in my thirties at the time, one thing that I got hung up on was what a drag it would be on my romantic life. I didn't have a girlfriend at the time to ask about it, so I just imagined that every woman I would ever meet would get the creeps about the idea of sharing a bed with a guy who sleeps next to a machine attached to a medical-looking apparatus strapped to his face. I know that this doesn't apply to your situation directly, but I mention it as an example of how the things we imagine are sometimes far out of proportion to what actually exists. I'd bet you anything that your husband doesn't think at all about your mask and machine when he thinks about how attractive you are to him. If he does, what he thinks is probably positive.

If you've ever tried to sleep next to someone who snores loudly all night, you know how difficult it is. Sharing a bed with a CPAP user is really easy compared to sharing a bed with someone whose OSA is untreated. Every girlfriend I've had since starting CPAP has been just fine with me using my CPAP, especially if they've heard me snoring during a nap. Before I had a CPAP, I could count on every girlfriend evacuating herself to my guest room or the living room sofa during the night because she couldn't get any rest with me snoring next to her. Every time. Having dated a couple of women over the years who had snoring problems of their own, I get it. Snoring loudly all night is *so* not sexy when you're the one who has to hear it.

Before I got to the understanding that my vanity was trying to talk me out of taking good care of myself, I had other hurdles to get over. Having to depend on a machine for my health. The hassle of traveling with a machine. Having to periodically go in for follow-up sleep studies. More stuff to maintain. Like the message I was getting from my vanity, all of these issues were far more significant in my imagination than they turned out to be in real life. When I got to a place where I could accept that my health was more important to me than a few inconveniences (all of which turned out to be minimal once I adapted), I could approach it from a different perspective. My imagination told me that it was going to change everything about my life and that nothing would ever be the same. Once I allowed my experience to speak to me instead, my experience showed me that it all came down to a few manageable new things. It reminded me of wearing glasses. When I was first told I needed glasses, I thought of a list of reasons that glasses or contacts would be a total pain. In my imagination, they were all important. In real life, it's not that big of a deal for me to put a pair of glasses on my face... and when I wear my glasses, I see better. If I had let my imagination make that decision for me, my world would be blurry and hard to navigate.

When I read your original post, one impression I got was that a key part of your struggle to adapt to your CPAP isn't about the CPAP itself. Like it was for me, I think your CPAP is a reminder that being a "normal 30 year old and not worry[ing] about this" isn't your reality. I can relate to that. Most of us expect that when we're in our 60s, 70s, 80s, etc., that we'll have to manage some health issues. This is often an abstract idea when we're in our teens, 20s, 30s, etc. Your reality is that you are a new mom who is dealing with all of the demands and joys that come along with it. You're a partner in a marriage. You're lots of other good things, too, I'm sure. And part of your reality is that you have a health condition that requires ongoing management. Not to minimize OSA, your concerns or all the feelings and frustrations you're having around adapting to a CPAP, but in the world of health issues that people have to manage, learning to use a CPAP effectively is a challenge that a lot of people would gladly trade for. I'm sure you've told yourself that any number of times, but maybe reflecting on that can help you shift your perspective on adapting to this change.

I strongly agree with what robysue said in her reply to your post: The fact that you see immediate benefit after you've slept using your CPAP deserves to be the part of this picture that you think about the most. That small machine has the power to change the way you experience your life for the better, and you've seen it work. On the nights when you find a path through the hassle and drama of using your machine, you get a big reward the next day. If you can remember that experience, maybe you can shift your focus away from using CPAP as something you have to do "your whole life," and give yourself a break for not being 100% compliant from the beginning. (I don't think anyone is.) You don't have to figure out how to do it for your whole life. All you have to do is figure out how you can do it a little better tonight than you did last night. You can tell yourself that every single night until putting on your mask is just another thing you do when you go to bed. You'll get to that place if you stick with it and make adjustments to the tangible things when needed.

Those suggestions are all in the emotional realm, obviously. Here are a few ideas about the practical side that I thought of as I read your post.

1) Are you ramping your pressure? I think this is a common feature on newer machines, and I reccomend using it if you aren't already. Instead of being blasted in the face with your full pressure the second you turn on your machine, experiment with different ramp settings. I have mine set to gradually increase the pressure over the first 20 minutes after I start the machine, and it's much more comfortable. If you aren't able to figure out how to get your machine to do that, your supplier should be able to help you do it over the phone.

2) If you're not keeping your machine set up and ready next to your bed, find some way to do it. I see how it could get tricky with small kids in the home, but I bet there are lots of parents on this forum who have found solutions and you have time before your baby will be crawling that far. If you put the machine away every morning, it means that you have to set it up every night. I think many of us can relate to being really tired and deciding not to hassle with something before going to bed. Your CPAP shouldn't be something you can talk yourself out of using that way.

3) Find a way to route the hose in a way that minimizes the chances to get yourself tangled up in it during the night. Before I was on CPAP, I changed positions often during the night. If you're the same way, you'll have to train yourself to sleep differently. Believe me, it's possible. It helped me to visualize my movements as I was drifting off to sleep. Before long, I was rolling over in one spot instead of rolling across the bed like I did before. Now, I don't even have to think about it.

4) I know you wrote that you've found the best mask for yourself, so clearly you understand that the mask is key. I'll echo the advice that ems offered you: try some more masks. In my case, finding the right mask was the make-or-break issue as I acclimated to using a CPAP. If I hadn't gotten the right mask, I would never have stuck with it. At first, they just handed me a nasal mask, and the supplier didn't bother to fit me. I was new to the whole thing, so what did I know? (There are lots of suppliers around who aren't very good at what they do, but that's another topic.) The mask sealed okay, but because it was the wrong size, I started to develop a very painful bruise on the bottom of my nasal septum. The bruise wasn't visible on the surface, but the more time I spent wearing that mask, the worse the bruise got. Eventually, I wasn't able to wear the mask for more than 20 or 30 minutes a night, which is obviously inadequate, and even blowing my nose was extremely painful. Plus, once my machine was up to pressure, I tended to open my mouth, which defeated the whole exercise. I told my doctor about it and he had an appropriately terse conversation with the supplier. The next time I saw the supplier, they actually spent time measuring my face and giving me a number of masks to try on for size and comfort, instead of treating me like I was ordering a hamburger at McDonalds. I switched to a full-face mask, and it made all the difference for me. In looking at the pictures of the mask you say you're using, that mask would present some problems for me. For one thing, having to keep the hose attached to the headgear at the top of the head would limit the positions you could sleep in and make it harder to change positions. Since you tend to be a belly sleeper, maybe the first aspect wouldn't be troublesome for you, but everybody changes positions during the night. One reason that a full-face mask works so well for me is that the hose pivots 360 degrees at the mask. If I want to switch positions, all I have to do is keep the hose running along the space between my pillow and the headboard. Sometimes, I even run the hose over the top of the headboard, and it basically manages itself all night.

5) Your issue with being hyper-aware of the mask on your face sounds really bothersome. To some extent, it's probably reflex for all of us to push this foreign object off of our face as we're sleeping. It really sounds like you're dealing with something more than that, as robysue suggested. I wonder if it would help to periodically put your mask on for a few minutes at a time (without being hooked up) as you do something else during the day or evening. Maybe not while shopping , but for ten minutes while you were watching TV or doing something routine. Try doing that a couple times a day for a while, or a little more if you can. Spending a little time each day with the mask on outside of the bedroom environment and separate from sleep (and worrying about your compliance, worrying about how you will feel the next day, etc.,) might be a way to condition yourself to the feel of the mask. This could be another reason to experiment with different mask configurations. It makes sense to me that some masks would be easier to get used to than others. With some time and the right mask, I promise you will get to the point where you hardly even notice the mask is there.

6) To build again on something that robysue wrote in her reply to you: your OSA and the process of adjusting to CPAP are as much a part of your husband's life as they are of yours. Communicate with your husband! It's an adjustment that you are making together. What I was saying before about this adjustment being part emotional and part practical really applies here. It may help you both if you can agree beforehand that you'll start with one conversation that deals more with the practical side, and a separate conversation that deals with emotional issues. (You'll have many conversations over time, so it's not like you're ignoring one part or the other - you're just agreeing on a starting point, even if the line between emotional and practical isn't always clear.) I know that this can be challenging, especially when emotions are running high (and one or both of you had a poor night of sleep), but it's possible. Maybe a place to start is to let your husband know that having him cuddle you to sleep is very important to you, and that you don't want the CPAP to be an obstacle. Ask him to hop onto the bed with you for 20 or 30 minutes (but not at bedtime), put your mask on (hooked up to the machine, but with the machine off), and you'll figure out together how to make it work. You're a team, so it isn't up to just one of you to figure this out.

7) To avoid the problem of "accidentally" falling asleep without your mask on, I suggest kissing your husband goodnight and then putting the mask on while you're standing next to the bed. That way, you'll already have the mask on as you get under the covers. After you're in bed, turn on your CPAP right before you turn out the light. If you do happen to fall asleep without your mask on, agree with your husband that he can give you a little nudge and politely remind you to mask up. Then, you can both get a good night's sleep.

I know this got to be very long, but I hope it's useful. Adjusting to a CPAP isn't trivial, but it's not climbing Mt. Everest, either. Small steps will get you there if you stick with it.

Thoughts from someone who went through childbirth and the early childhood years undiagnosed, later had a tonsillectomy/septoplasty/turbinate reduction, failed CPAP due to aerophagia, and is now trying a mandibular advancement device... And to say I'm a "light" sleeper is an understatement.

CAsleep wrote:My AHI was on borderline of mild and moderate, but the CPAP helped with my fatigue, greatly. When I don't wear my mask at night, i PAY!!!! I am sooo drowsy, and my eyes won't stay open. It's awful, reminds me of life before I got the CPAP.

This is important.

I used Lunesta for the first year or two, to help me fall asleep with the CPAP on. Once I knew we were thinking about conceiving, I went off Lunesta, because you can't use it while pregnant.

Did you ever use CPAP religiously off Lunesta?

Now that I have children, I have too much at steak to just sit around in a dazed fog all day, like I did before.

Also important.

She seemed to think it was worth a shot, if "I" was willing to go through with it, but warned me it was like 50/50, and the effects would probabloy wear off if I gained weight later in life, or maybe regardless.

What was the surgery exactly? In menopause, women develop apnea at higher rates than pre-menopause, so maybe she/he meant that even if you were cured now, you still might get it later. I don't think that's a reason to not address it now.

I ended up accidentally getting pregnant right before I was supposed to get the surgery.

Oopsie.

I was upset to miss the chance to have a pregnancy and "new mom" phase, where I felt well-rested.

What new mom feels well-rested?!

I know that this forum is very "pro"-"make CPAP work." But, it is so difficult, getting up for nighttime feedings. I have that many more chances to fail to wear the mask (yet, also, to succeed). I have a hard enough time putting it on in a sleepy haze ONCE a night, let alone, after EVERY feeding (11:30 PM, 3:30 AM, 5:30 AM).

Is your husband awake at 11:30? If so, perhaps he could bring the baby to you and you could keep the mask on (or at least stay in bed with mask right next to you)?

Sure, my baby will eventually sleep through the night,

I believe that, barring unusual health issues with the baby, it's up to the parents how long the baby doesn't sleep through the night. More on this in a minute...

Also, we would like to have 2-3 more children.

Are you crazy?! Just kidding.

But, I can't fall asleep with it on, so I wait until I am really drowsy, which normally fails.

Fails why?

I am just looking for support.

Oh. I missed this part on my first read. I'm the wrong person for that. I like to solve problems. Well, since I've invested this much, and I'm dying to give you some advice, I'll throw in some empathy. Soon. (Working up to it.)

Is anyone else in my shoes? Went through the motherhood phase with your CPAP? I guess it could be worse, I could have undiagnosed apnea, then I'd be suffering with no answers.

To say I was tired during the early years with my kids is like saying it's warm in Arizona in the summer. I used to count the seconds until my firstborn's first nap of the day. When he dropped the morning nap, I nearly threw myself out the window. It was really hard. Remember, I was undiagnosed.

I wish I could just be a normal 30 year old and not worry about this. HAve more kids, and not struggle with either cpap compliance, or the negatives of the fatigue. It would be fine, if I was good at putting it on, and it all worked out.

Yeah, it would be awesome. I wish I were a normal 30 year old, too (I'd even settle for being a 30-year-old with OSA who responds to CPAP, which is way better than a 40-something-year-old who does not. This isn't helping, is it?).

Where should I go from here? All I see when I look at my options, are the negatives.

Hormones. Adjustment to parenthood. And sleep deprivation.

I'm a positive person,

Then you will be again. Research shows people's happiness set point is fairly genetically-determined, so you will return to that.

I still want to try the surgery, but am nervous.

Which surgery? UPPP, I can't tell you to do that. Tonsillectomy? Maybe.

I think not eating after the surgery would make me loose my milk supply.

Not eating? I GAINED weight after my tonsillectomy (which I fondly think of as "My Big Fat Tonsillectomy"). Seriously. So many slushies, etc. Do you have to eat hard food to keep your milk supply? Isn't nourishment enough? But can you take pain medication and nurse? If not, you may have to pump and dump. You WILL need pain medication.

I would like to continue to have good supply until he's 6 months, then some milk supply up until my baby is 1 year, because otherwise, I will have to buy formula for the few liquid feedings they still require, which I don't want to do.

This reminds me... It was SO important to me to get to X # of months of nursing, and now I can't even remember how long I nursed for! And my youngest is 8, so it's not like it was two decades ago.

But I still have 7 months to go. Then, I will have to recover with a 1 year old. It all seems like such a hassle.

Everything can seem doom and gloom-y post-partum + sleep deprivation.

Then what if it doesn't work?

Then you tried. Or maybe it will work somewhat. (Again, which surgery are we talking about?!)

What would you do?

I had surgery, but I had a tonsillectomy, not some radical cut off the uvula or shave the tongue or incise the whatever.

I worry with a mouthpiece, I'd still have low compliance. I hate anything on me, while I sleep. It's hard to get me "go down."

Some of that may be due to the OSA. It can create insomnia by shifting peak melatonin times. For what it's worth, I find the mandibular advancement device way less disturbing of my sleep than CPAP. I don't think any of my awakenings are due to the device, even though when I wake up, I definitely notice it.

EDIT: So, I just read through the post in the "sticky" part at the top....called "Dealing with Change." It talks about Denial, then Depression, then Head Acceptance and Heart Acceptance.

Oy vey.

Denying that I will be dealing with this my wholllllleeee life? I think that is what bothers me. No offense, but many of the people on this board are beyond me in years. That upsets me; makes me feel unlucky.

I hate to say this, but people feel better when they do what's called "downward comparing"... Comparing yourself to someone worse off than you rather than those who you see as better off than you.

If I do the math right, that's over 70 years of wearing xPAP.

I'm overwhelmed just thinking about it. On the other hand, your great grandmother didn't have OSA, so you might not live as long.

I want 4 kids.

I'm overwhelmed just thinking about that, too.

I want my husband to find me sexy,

Too tired to do anything (including have sex) is not very sexy in most men's opinions, I'd presume.

Should I just ACCEPT, and WEAR it?

If I said yes, would you/could you do it?

I can't get over the hump. And physically, having a hard time getting comfy wearing it. Like I said, I'm a stomach sleeper. Ideally, I like to be cuddled to sleep, then roll onto my stomach after about 30 minutes. How can I make that work!!!! I can't do either (cuddling or stomach sleeping) while wearing the mask.

Well, there's the cuddling before mask goes on, then the spoon position once it's on (unless he likes air blowing in his face), and I don't know why you can't sleep on your stomach, as I did.

That is why I became a Lunesta dependant, just so I could fall asleep with it on. When I move, it pulls off.

You need the Hozer, a hose hanging system. It shouldn't pull off when you move.

But also, maybe surgery IS the best option for someone like me?

Maybe.

Is it denial?

I never read that sticky, but I don't think Elisabeth Kubler-Ross intended for her stages of grief to be generalized to everything...

OK, here's my plan for you:

• Don't think about the next 70 years, just the next 6 months.
• In the next 6 months, use the CPAP, making accommodations as necessary (e.g., husband stays up until first feed and brings you baby, or you pump and he feeds baby with bottle for the first feed, etc.)
• During these 6 months, research the surgery. I'm betting you're not going to want to be on pain meds while nursing (and it's not like you'd be on them for 2 days, so unless you have a huge amount of milk saved to bottle-feed, you can't continue to nurse through a surgery), so you might as well forget having the surgery until you're done nursing. Since you can pass the time being exhausted or you can pass the time using CPAP, which seems to help your fatigue, you might as well choose the latter. Babies are very boring when they aren't being adorable. It's really hard to be with a baby when you are very tired because it's hard to stay awake for endless games of peek-a-boo.
• During these 6 months, look into a dental device.
• Tell yourself you're only going to use CPAP for 6 months, but during this 6 months, you're going to use it. After the 6 months, you'll make a decision whether to continue, but for these 6 months you are going to try to decrease the exhaustion for yourself and your baby.
• Most important suggestion (and by this I mean that even if you ignore all the rest of my advice, do NOT ignore this!): Run as fast as possible to the nearest bookstore or amazon and buy Jodi Mindell's book, Sleeping Through the Night. If you follow the instructions, your baby will sleep and your situation will improve markedly, and theirs will too. Believe me, CPAP-adjusted or not, if that kid continues to wake you for months or years, you will be a wreck. Also, people fail to appreciate how much better it is for the child's health and well-being to be a good sleeper. YOU have to teach your baby how to sleep, just like you'll teach him/her lots of other things in life.

OK, my carpal tunnel is maxed out. Good luck!

SU, you put your heart and soul into that post! I applaud you!

DoriC wrote:SU, you put your heart and soul into that post! I applaud you!