Anyone else's baby on an Apena Monitor?

Megan - posted on 05/11/2010

Jessica, our son was finally removed from the apnea monitor after 5 months. We were orginally told that he would only be on there for 2 weeks by the hospital but those 2 weeks turned into months. I finally just decided not to think about when he would be removed as it would just upset me when i thought of it. It took a long time to come to the realization that he will be on the machine longer than what we were orginally told. Every once in a while my husband still would get upset because he just did not get it. We stopped letting the machine control us because yes it was a good thing to have but there were so many false readings it wasnt funny. I understand how difficult the not knowing is and it is hard to be in a situation that noone that you knows has ever been in.

Jessica - posted on 05/11/2010

My little one is on the monitor because shell stop breathing while eating because of reflux. I was very discouraged when I saw the print out and the slew of apneas reported. This is week 3 for her at home and I havent taken her out much, only to the docs. I had been told that by week 44 GA the monitor would be removed, thats no longer the case for me at least for now, but it does sound like that could be the case for you, so I guess ill tell you what I should tell myself, lets just take it one day at a time and hopefully this will soon be over... Hope this helps.

Chelsea - posted on 04/18/2010

I found it hard to fight back tears reading your story. It brought back a lot of memories for me. My son was born at 27 weeks and developed a lung disease and prolonged his oxygen and apnea monitor use. He kept backtracking as well. It seemed like forever we were in the NICU. My son was just over 7 lbs and 4 months when we come home with the oxygen and the apnea monitor. I found it difficult to sleep bc that dang alarm kept going off and my heart would skip a beat every time. I logged all of the alarms on a sheet of paper, saying real or error in leads. The dr told me I was not putting the leads on tight enough. I don't know if you have the same kind of monitor my son had but it was a strap then wrapped all the way around him and velcroed. So that strap has to be put on very tight. It will seem like it is too tight for your baby but it's perfectly safe. Just as long as he doesn't turn blue. lol. We don't want that. The alarms stopped for a while until he learned to tug at them. So we would just dress him in feety pjs and take the wires down through the bottom snaps, so he couldn't get a hold of them, and maybe tuck them under the mattress or sheet if you can and take them out the bottom of the crib or bassinet. I know how frustrating that can be, my husband was ready to throw it out the window. lol. And as to your other problem, it is a hassle strapping that thing on all the time and it seems like your baby will never be normal and things aren't getting any easier. But the day the doctor took him off the apnea monitor, I cried. I was scared to death. If you think about it. most mothers don't have the luxery of having that security. They stay up most nights making sure their baby takes it's every breath. I hated that machine, but it did give me peace of mind knowing he was breathing and his heart was beating every night when I went to sleep, and I slept so much better with it. You will realize that when he is not on it anymore. You will be relieved and nervous at the same time. Just hang in there. My son was on o2 for 6 months and an apnea monitor for 7 months. I promise, things do get easier. I know this was long, but I hope it helped a little. :)

Anna - posted on 03/20/2010

we used a soft head band to hold the leads on. sweat bands.

Cindy - posted on 01/11/2010

i feel your pain! i had premature twins girls on those monitors. they went off all the dang time. after the 1st couple of months, i only put the machine on during nap time or at nite. the problem with that was when my twins slept some how they wound up gettign the wires caught arount their neck. i started monitoring my twins more carefully when i realized that the monitor was a crutch really and a nuicense. i was told "2 week" tops, and 5 months later, the dr tells me they need to stay on for another 6 months because the dr could not get an accurate report. turns out everytime the machine was downloaded, the internal battery was bad and all data was lost. at that point i went nuts in the drs office. now the nurse told me that i as a parant have a right to sign an ama form which is against medical advice form allowing the child to be off the monitor and at the same time, the form protects the dr. it all depends how comfortable you feel and if your son is having the bradiacardias etc. in my opinion, i think that the monitor is good in the beginning, but they are not always accurate. i had twins that would set eachothers monitors off. example: when they first came home from nicu within 3 days the monitors went off 63 times. i kid you not! everytime we checked the twins, they were fine. you can go for a 2nd opinion and keep your own records when the machine goes off. it can be frustrating, but no one can force you to keep them on. if you feel confident enough, just put it on at nite and cut a hole in the bottom crotch of the pajamas to keep the leads out of babies hands. (it really does make a difference) keep him off the monitor during the day an hour at a time. no one knows your baby better than you. i cannot say all will work for you, but that is what i did. good luch

Amy - posted on 01/11/2010

One of my twins came home on an apnea monitor. I feel your pain. I hated that machine but also felt blessed that we knew when he would brady. My son had it for 4 months. It does get better. We had issues with leads and belts. Your nerves are on high alert and your body is probably still realing from what has occured. There is a really good article I will try to post that talks about mom's with babies in the NICU have a sort of post traumatic stress syndrome. I read it and wish I had know at the time, that my body was reacting to an overload and it was 'normal." I also have to say, without scaring you, I have had 2 friends that have brought their babies home and they were not on the monitor and they died do to aspiration or SIDS. I felt like I had a little extra insurance. The one thing I didn't completely understand was that the monitor is sensing the slightest reduction in respiratory function, unlike the "SIDS pads" that just feel movement. One of our NICu dr.s explained that it would be too late for our babies with one of these pads. You may not see a full brady but he may have been taking a small dive and pulled himself out of it. So, this time in your life seems to creep by so slowly and the monitor seems like one more thing you want to throw out the window, but know it could save your babies life. And know many are on monitors much longer than they need to be for liability reasons...You will look back at all of this and think how quickley it passed and how you never want another one of those machines in your house:)

Cari - posted on 01/10/2010

My son is on oxygen and an apnea monitor and has been for a month now. Ask your doctor if you can just have him on the apnea monitor at night-that is what our doctor let us do since we have been getting false readings during the day a lot from his leads falling off or just simply the machine going off because of high/low heart rate. I hate the sound of the alarm!!

Jennifer - posted on 01/10/2010

Megan ~~ I completely understand about saying the right thing to help your husbnad understand what's happening. I am home with Rachel all day and see how healthy she is and how well she does, but my husband isn't. I don't think there is anything we can do to say to help them undetstand just to be there to guide them. I can only say you can write me if you need to talk - I do understand what you are feeling!!

Tonya - posted on 01/10/2010

Our son was a preemie ten years ago and things haven't changes much at all. We had the monitor for 4 months and as others have said it was a very hard thing hearing it go off but a wonderful piece of mind. The scariest time was when I was driving down the highway and the darn things was going off with no where for me to stop safely- fortunately it was a false alarm and the dots were stuck to his clothes-pushed over by the restraints. The darn sticky dots would get stuck to his clothes all the time and set the monitor off but they told us that the belt won't work due to the younger babys are belly breathers and the belt sits too high for that. We were fortunate that we had the monitor when he contracted RSV and the monitor when off every 15 minutes. We thank God for that or we may have never known. The strange thing was that the RSV caused his body to kick in and his apnea was gone right after the virus was gone.

Megan - posted on 01/10/2010

Thank you i do appreciate the support, this has been a hard couple of months

Megan - posted on 01/10/2010

We have the belt and tired it but Nick is still so small that the belt doesnt work right on him unfortuantely and he still manages to pull the lead off by grasping or putting the wires through his toes. So we have taped the leads on like they did in NICU and that seems to work for maybe a day or two til the tape becomes less sticky and he yanks again then you get to hear the loud beeping noise of the machine at 2 am which is always fun!

Nick really hasnt had any occurances since being at home however the company that provides the apnea machine only downloads once every 3 months or when the machine is full therefore the orginal two weeks was never going to be the truth. Unfortunately noone told us that in the hopstial so in my husbands eyes the doctor lied to us(which is not the truth they just didnt know how the company worked). And Nicks peditrican told us he wants two good readings before he will take nick off the machine so we are looking at like 6 months with the machine regardless if he needs it or not.. the only great thing about the machine is it is a piece of mind, i know he is breathing. And the other thing that is hard is that you have a machine that monitors him but the doctors dont even look at the information for 3 months, its hard to put your mind around something that they dont seem to be too concern about.

We only now hook him up at night when he is sleeping or when he is taking naps. We dont carry the machine with us anymore as the doctor told us as long as he is in sight he is fine without the machine as Nick has always corrected himself.

I know it will get easier for me but i dont think my husband will ever find a piece of mind with the machine until he is off. Im ok with the situation because my son is home and healthy and i get to hold him everyday. Its just hard because you want to help your husband understand but there is only so much you can say and nothing ever seem to be the right thing.

Jennifer - posted on 01/10/2010

My daughter is on an apena monitor and has not had any events in over a month. She is on the machine because she is also Oxygen and caffiene because she was born so early. We go back to her respiratory doctoor in Feb so hopefully the O2 will come off then. The comp that we got the machine from gave us a belt that has 2 leads that velcro to it....then we wrap it around her. She can't pull them off and it gives us piece of mind that she can't

It does get easier I can tell you (our daughter has been home for almost 2 months) but it is hard...you can ask our doc to seeif he needs to be on 24/7. we were told that if we were with her we could not have her hooked up even though Rachel had some events she seemed to do better and have less and less when we would hold her or do kangaroo care.

When my husband's family asks when she will be off the O2 and monitor I smile sweetly and say in her own time. We are basicaly on her schedule! They don't seem to understand what we tell them after the doc appoointments.....they just don't see her as "normal" and think both the O2 and monitor are just there for looks ( at least that's what I think).

I still have those moments of will it ever end and will she be off this stuff soon, I don't think that ever ends....but it ddoes get easier because she looks at me and shes home!

Lindsay - posted on 01/10/2010

My daughter was born at 27 wks and was on an apnea monitor for a month after coming home. We ended up using sensitive skin bandaids to keep her leads on. We would open a new pack and within an hour or two they wouldn't stick anymore. It was soooo frustrating! I know how frustrating it can be to finally have your little one home and they are still hooked up to monitors. It does get better. The day you can finally say good bye to the monitor will be so amazing! I loved FINALLY seeing my little girl wihout any wires! Good luck and I hope your little guy will be monitor free soon!