Thursday, August 6, 2009

I'm Not Ready

For those of you who know us, you know we've had quite the roller coaster ride with our youngest son. My pregnancy was pretty wretched, with lots of discomfort and morning sickness. I missed a ton of work and got more IV fluids and Zofran than I could ever imagine. When he was born, there was some stress on him during labor that required they take him right away and suction and check him over well. He ended up being fine during all of this drama. More than fine, he ended up being perfect and beautiful. We took a deep breath and relaxed a bit.

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!

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 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!



Kathygee1 said...

Of course you wouldn't be ready. That is such scary stuff! Can you just take your time and ease into it when you're ready? What does a little extra monitoring hurt?

I'm so happy that things are looking up with your little one! Sending a big hug to both of you!

tracy @mamacreates said...

Your post made me cry. My friend Tanya said I was born with "extra feelings", something that Zoloft (thankfully) lessens. Without it, I'd be a total mess with worry & anxiety over Ellis. As it is, I can't watch anything where any baby (human or otherwise) is harmed, even if I know the outcome. If I were in your position, I'm certain I would not be ready either. I say, turn off the monitors when you're ready.

And now I have to go back & read your archives because when I bookmarked you, I had it set to a particular post, not your home page & I didn't think you'd been writing since May. I have much to catch up on!

Britni TheVadgeWig said...

But it's good news! And happy news! And I understand the worry and not being ready and what if...

But I wish you all the best, and I'm sure everything will work out. Hugs :)

Stephanie F said...

he's your baby, and you need to do what makes you comfortable. if keeping the monitors for awhile longer feels right to you, then there is no harm in doing so. your instincts have been right so far so why not continue to trust them for awhile?

Jo said...

Thanks for all of the kind words everyone. I know that this is a GOOD thing and that he is doing well. I also know that my anxiety will lessen with time. You ladies are awesome for offering such great encouragement. *hugs back*

Sunshine Mama said...

I'm so glad you put your foot down and insisted that they do testing. I think I'd be nervous without the monitors too. Will they let you keep them longer? Is there anything they can let you keep that will make you feel better? I'm glad, though, it sounds like things are improving.
We love you all.

Laura said...

Oh your poor baby boy! And poor Mommy! I really can't imagine going through all that stuff, it's so hard watching your kids when somethings not right. But yeah...woot woot for all the good news! I agree if you feel like you need to keep monitors, even if it's just for you, then DO IT. It won't help him having a high anxiety mom! Not sure if this would interest you at all but maybe you could look into the Angle Care baby monitor. It has a pad that goes under the crib mattress and it senses breathing and movement and alarms when it doesn't feel anything for 20 seconds. We got it a couple weeks after our first was born because I just couldn't sleep because I would freak out about SIDS and all that stuff and it totally relieved all those fears! I hope everything goes well from here on out!!

Joe @ IrrationalDad said...

... I didn't know babies could get sleep apnea. That is so scary (for reasons all too obvious to you). I hope he passes the test with flying colors.

Cheryl Lage said...

Oh JO, I can SOOO empathize and you have my support and positive thoughts. Our Sarah was diagnosed with diabetes after a crazy bout of tummy flu wherein she dehydrated and the story is too long to recount here. The diagnosis was retracted, but now, even 6 years later when I see certain behavioral shifts or a wan expression she gets I STILL want to check her blood sugar.

Motherhood...we want to relax, but the love is so intense we just can't! Hang in there, Jo! :)

Jo said...

Thanks again everyone for the kind words and encouragement. I posted an update.

Kara said...

I can't even imagine how that would feel! Kuddos to you for surviving it!

kris said...

I know this was a while ago, and that I am late to the commenting party.

So I am just going to say how proud I am of you for forcing the issue. For refusing to accept non-answers. For pressing the doctors and specialists for a diagnosis.

No one else is going to step up and advocate for your child like you and your husband.

Well done, you.

And if you need those monitors to sleep at night?

Use the monitors.

Who cares?

Moms need reassurance.

Love you, babe.