Hannah has had a cold for the past 3 days. Just a runny nose and congestion, but it definitely affects her when she is sleeping. She has times when she snores for a bit. But then there are times, like right now, when she is incredibly quiet that I can’t even hear her breath. (And yes, she is still sleeping in the pack’n’play next to my bed…I haven’t made that move yet to her crib. I’m working on it.)
Knowing that sleep apnea is one of the symptoms of her disease, I have been incredibly paranoid that she may have it. I have kept myself awake until almost 3 AM for the past few nights, not intentionally, only because I’ve become obsessed with listening to make sure she is breathing and that she doesn’t have sleep apnea. I can’t tell you how many times I hear silence, and I get up to put my hand on her chest to feel her breathing. Sometimes I swear I don’t, but it is so late at night, I feel like my paranoia and exhaustion is wracking my brain. I admit, I’m not proud of this.
Angelcare Monitor
Today, we went to Babies R Us, and we bought one of those SIDS breathing monitors for the pack’n’play. You know, the one where if it doesn’t feel any movement in 20 seconds it sets off an alarm. It is the Angel Care Movement Sensor. We tested it out tonight since it requires a “firm surface”, and it works great (we layed it on a thin hardback book).
I’m sitting here with the little triangle monitor about a foot away from my head on my nightstand. Hannah is about three feet away from me. She was snoring a bit earlier, but she is incredibly quiet right now to the point that I can’t hear her breathing at all. I’m looking over at the little monitor light, and I see the top light, the one that flickers every 3 seconds to show that it feels movement.
Since I see the light flashing, I’m not getting up to check on her.
I hate, hate, hate this paranoia I have fed into because of this disease! I was NEVER that type of parent before!
It is like I know that sleep apnea is probably going to be coming soon, and I want it to stay away as long as I can because I know the sooner we get the “next symptom,” the quicker this disease is progressing. The longer we can keep the next symptom from appearing, the slower this disease will progress, hopefully.
But I need to sleep. Hopefully this monitor 1 foot from my bed, keeping tabs on my daughter 3 feet from my bed (yes, I know, it is almost ridiculous – if someone told me about another parent who did this, I would have thought overly-paranoid freak as well) will put my mind at ease for now about this.
I have to keep reminding myself, she has an old-fashioned runny nose and congestion. Just like a normal baby.
Oh well, tomorrow is another Cerezyme treatment, so I’ll be spending the day at the hospital again.
It’s understandable that you would be nervous like that. Mothers of children who don’t have any medical issues go through the same feelings so it’s a given that it would affect you 1,000 times more.
I’m glad you got the monitor and I hope it’ll allow you a complete and peaceful night’s sleep.
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I am glad that you were able to get this! I really hope that it helps you to sleep more 🙂 Hang in there!
We have the BabySense monitor (similar to the Angelcare) and LOVE IT. I wouldn’t be able to sleep without it!
so NOT paranoia! I still check Makena especially when she has a cold or is extremely still – and she doesn’t have a rare disease! Anything to get a good night’s sleep for both of you is the best. You know you would want this when you do move her to her crib anyway, so now you can test it out with her close by.
Question is – did you sleep well last night?
I live in Woodlands and some other person e-mailed me a link to your site. If apnea is one of the symptoms of her disease you should be alert (as you are). I had a monitor for my child – hospital probably will give you one by doctor’s prescription– professional monitor. It goes around the chest and will set an alarm off if baby stops breathing. It is nice because that alarm you will hear at any part of your house – very loud – just like in Intensive Care Units.
We had the monitor when he was 2 month old. Unfortunately it was too late for my baby to have the monitor. He is 2.5 now and at 3 weeks old he had an event – probably apnea – that is what doctor’s say. But instead of simply dying he did not breathe for some time and then woke up. Little bit too late. He will not walk, talk, move or do anything and he is blind. He knows the family and might know few words in the future. I see that you have enough with the disease and adding a brain damage to it because there was no monitor might be even harder.
I understand, I did the same thing. But as time went by I realized that she breaths like that. Sometimes lots of noise, others nothing. I had a hard time at the beginning too.
We have this exact same monitor– we use it for Connor’s seizures, since he stops breathing during them.
Connor has figured out that if he stiffens up his whole body and holds his breath, Mommy and Daddy come charging into the room. He finds this very amusing. As a result, we have a lot of false alarms.
On the other hand, we’ve had a couple that weren’t false alarms, so I’d say overall it’s a good buy– for peace of mind if nothing else.
~Jess
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maybe you can get the dr to give you a prescription for a pulse ox machine…that would help you know if she is desatting or her heart rate…
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The AngelCare Monitor was my favorite! Because our daughter was preemie and we had been warned to watch for sleep apnea, this product allowed me to be able to sleep a few hours. We are praying for Hannah and your family daily!