Then Jamie started having these episodes of unresponsiveness - times when I would wake to check on him and think he was not breathing and he was cool and unresponsive to my touch. VERY SCARY. I can't even tell you.
At first we dismissed as him being a deep sleeper, because he would wake up when you stimulated him (generally by picking up and rubbing him vigorously and calling his name). He would look at you and be completely normal. However, after the third and most severe episode) we insisted our doctor investigate these incidents. We were referred to Mayo Clinic, where they said he was having ALTEs. I blogged about this here and again here. (In fact, if you REALLY want to know the nitty gritty...just search for ALTE using the search bar in the upper left corner of my blog. All posts related should be tagged now.)
We insisted on and received a home monitor so that we would know if he had any episodes. He set off the alarms a couple of times due to low heart rate. I felt vindicated. Here was proof that I wasn't crazy and that my son was doing SOMETHING, even if we couldn't tell why. He was diagnosed with reflux, which could have been causing what was happening with him. We were told that we needed to add another monitor to the routine, a pulse oximeter that would monitor his oxygen levels to see if he was desatting. I didn't get much sleep, which probably triggered this post. I also started counseling due to my overwhelming fear and anxiety that my son was going to die in the middle of the night.
I was not convinced that reflux was the cause of my son's condition. I felt that there was something going on. We continued to investigate and were referred to different departments where different tests were performed. Finally, we met with Dr. K., who is a pediatric neurologist and head of the Sleep Center and a polysomnography was scheduled. On May 15th, we took my son for an overnight stay at Mayo Clinic to see if they could determine a cause of the ALTES. Polysomnography = sleep study, just so you know.
Here are some pics that Brad took with his cell phone.
Don't let this picture fool you, they really didn't torture him. He just hated being still and the glue was smelly.
He even got to watch a Veggie Tales movie, which completely enthralled him. It was so cute.
On Demand movies FTW!
On Demand movies FTW!
I was very sad to see him covered in wires. Poor baby. He did so well! The techs were amazed by the amount of data they got, as usually this age is...difficult.
After the sleep study, we met again with Dr. K. I was so apprehensive about the appointment because I just knew that he was going to look at us and shrug and tell us that everything looked normal and that he didn't know why Jamie was having the episodes.
Much to my surprise, Dr K. told us that Jamie has sleep apnea! (Ok, so amazed is a strong word, we actually theorized in the beginning that it might be sleep apnea but the docs were like ...NAH, that can't be it! Sleep apnea in a full-term baby is not likely! All I have to say is ....huh. Next time I'm raising a stink. Mamas and daddies KNOW stuff you know.)
Specifically, he has what looks to be CENTRAL sleep apnea. That would be the rarest of the three types. Figures. Basically, his brain forgets to tell him to breathe. Which is scary. And when I was waking up in the night and finding him cool and unresponsive...well...I might have averted tragedy. Uh...ok. (Insert me trying not to throw up at this point.) Anyway, the good news is that Jamie is older and according to Dr. K., his 'arousal reflex' has developed, meaning that when he stops breathing his brain says, "Hey! You aren't breathing, wake up!". The arousal index number was satisfactory. The reason I'd been finding him cool and unresponsive was because this reflex doesn't appear until babies are four months old or older so when they stop breathing, nothing is there to tell them to start again. Another issue was the fact that his oxygen levels were dropping to the mid-80's when he has an apnea episode. Anything below mid 90's is worrisome. Lack of oxygen is never good and can cause cognitive issues. Luckily, he's showing no signs of delay - in fact he seems to be ahead of the curve mentally. He is a bit smaller than average weight-wise...no way to tell if it's a result of the apnea issues though.
So, plan of action was to basically continue monitoring using pulse oximetry and apnea monitor. How handy...we already had both of those! Because he was rousing himself during apnea episodes, there was no need to add supplemental oxygen (CPAP) and we are very thankful for that. Dr. K. also asked us to do an additional overnight oximetry at home using one from the clinic just to confirm the sleep study findings, which we did...and it did confirm that he is having apnea episodes where he has desaturation.
Today we saw Dr. K. again for a follow up appointment. Tonight we are again using the 'take home' oximetry unit to see if Jamie is showing improvement. Tomorrow Dr. K. will call us to tell us if Jamie is still having apnea episodes and if so, if he is showing that his oxygen levels are dropping when and if he does. If Jamie shows improvement, then Dr. K. says we will no longer need to use the monitors at home and they can be discontinued.
Good news, right? Baby boy is ready to be independent and not in need of all of those wires and machinery and nonsense. Woot woot! Right?
I'm. Not. Ready.
I'm not ready to stop monitoring. I'm not done being scared. I'm comforted in the middle of the night by being able to look over and see the glowing red number that tell me that my son is still alive. Those episodes scared the shit out of me. I can't even tell you how it feels to think your baby died. I'm so grateful he's with us and I thank God for it over and over again. I can't imagine what people who actually lose their babies do. I don't know that I could survive it. I'm a basket case and my boy is still with us.
I thought I was over this. I thought I felt better and more assured that he is FINE. He's happy and healthy and growing and strong and smart. I am taking care of him and keeping him safe. There is no need to worry. I can't help it. I still do.
I'm not ready. Someday I will be, but not now.
*sigh* Guess I'd better make another counseling appointment. I still have work to do. I need to get my crap together because I'm relatively certain that Jamie will put his foot down if I try to make him take his monitors to college. Don't even think I haven't considered making him do it!