When we brought Antalya home from the hospital after she was born we couldn't understand why so many people had told us to expect very little sleep. She slept 'just like a baby' all through the night. In fact, she slept so well, that it would take both Jason and i to wake her up enough for her feedings. This lasted for five wonderful months. In fact I got so much more sleep during those five months than I did that at any point during my pregnancy.
But once Antalya hit five months, she suddenly woke up and wanted to be fed and rocked several times a night. For awhile I was getting up four or more times with her. We didn't know what started this, but felt like there must be a reason she was getting so hungry and waking up so much, so we did our best to control the amount of wake-ups, but for the most part didn't concern ourselves with it too much until she was a year old.
With lots of work, tears, and prayers Antalya started sleeping through the night again at about 13 months (or sleeping through the night more nights than not). We were finally getting some rest again!
This last year we have had to work through several 'episode periods' of waking up during the night, but have mostly kept it under control. That was until two months ago when it all changed.
Suddenly, Antalya would wake up screaming and unwilling to be consoled, or she wake up terrified and wrap her little arms around me my neck as tight as she could and refuse to let go. Or sometimes she would wake up as if she had just slept the entire night and just want to play. I felt like I needed to just be patient with her, especially since I didn't understand why she was waking up. I knew she had started snoring louder than usual and was a little concerned that the cause of all the wakings was her struggle to breathe. Every night was a sort of guessing game as to how much sleep we would get. These two months have been so long!
The last couple weeks I have been lying down with her or bringing her into our bed in an attempt to get some more sleep. While she is laying next to me I listen to her breathing (remember back in June when we scheduled a sleep study because we were concerned with Sleep Apnea, but Antalya got so terrified with all the wires they were putting on her that we had to cancel). So I listen closing and have found that she takes 3-5 seconds breaks in her breathing often. Sometimes there is only 2 or 3 breathes that separate the pauses. It's been like that for awhile now, until last night when it got so much worse - more to come in a minute.
Anyways, I feel like now I know why she has been sleeping so poorly. I don't know why her breathing has all of a sudden gotten so much worse. But I am grateful that our surgery date is coming soon (only 12 days away). The surgery is supposed to help open up her airways and make it easier to breathe at night. Please pray that it will do just that and our little girl can get some much needed sleep. And please pray that we won't have to reschedule surgery again.
And now, for those interested here is a summary of our night last night (it's not pretty). I wish I could say last night wasn't the norm, but it is becoming more and more the norm.
8:00 Antalya is in bed sleeping soundly
11:00 Jason and I head to bed and find Antalya sitting up her bed screaming. I change her diaper. We take turns consoling her and getting ready for bed. All lay down together in our bed.
11:30 Antalya is starting to dose off - this is both good and bad. She only will sleep right next to me, but she isn't a 'still' sleeper. I get knocked in the head, and kicked in the stomach every few minutes.
12:00 Her breathing is getting bad. I lay there counting 8-10 second pauses in her breath. These happen about 3 times a minute. I start praying she will be alright. I don't know what else to do.
12:30 I'm still awake counting her breathes and getting worried.
2:00 I wake up - at some point I must have dosed off. Antalya is stretched out sideways on our bed sound asleep. I realize I won't get any sleep like this, so I gently pick her up and place her in her bed.
2:30 Antalya wakes up screaming! Louder than the first time. I get her a drink, check her diaper, lay her down and start singing a song. She gets hysterical, wants me to pick her up. I am too tired and need to get some sleep so I tell her goodnight, grab my pillow and head to the couch.
4:00 I wake up, Antalya isn't crying anymore so I head back to bed.
5:30 Antalya wakes up again. I decide to lay down on our monster beanbag with her. This means she will fall right back asleep and sleep soundly for another hour (something that wouldn't happen if we lay down in the bed), but it also means that I won't get any more sleep. The bean bag is so uncomfortable - after a few minutes my back hurts, my shoulder is going to sleep (because of Antalya laying on top of me), and my feet are cold.
6:45 Antalya wakes up and we start our day with me wondering why I even hoped to get any sleep last night.
Maybe tonight will be better, but if not, there is still hope that in a week and a half all this will change with her new and improved airways.
8 comments:
Ok, this may be of little help. Remember Jonathan also has sleep apnea? Well, we were told part of the reason it's so bad for him is due to the low muscle tone. When "any of us" lay down our necks and muscles relax. For those with DS it can be worse on the air way because of more pressure due to the low muscle tone, meaning a smaller air way.
Jonathan has now had his tonsils, and adnoids(x2) out, it is better than it was, but for him it wasn't a cure all.
The CPAP mask does work, like Antalya he never slept...this hurt his growth and development. He is now doing better, and we are after several months seeing a change. On the nights he doesn't wear it, we hear him all night...it awful.
As far as the CPAP, it's not FDA approved for kiddos Jonathan's size...we had to fight for him to get it. And sign a wavier, crazy huh'.
Like I said this may be of little help, but we know our prayers will!
(((HUGS))) to all 3 of you, and we're also praying for you all to get some rest!
Sunny, I am so sorry to hear what you're going through. Does she take naps during the day? I hope so, and I seriously hope you get to take one too! Hows the quarentine time going? We will Keep all of you in our prayers!!! Good Luck.
I am so sorry sunny! I sure hope things get better and we will pray for her and your family!
I am so sorry! It is so hard to function when you don't get a good night's sleep. I hope the surgery will help and hope you don't have to cancel again! jack and I are praying for you.
Oh Sunny, you are super mom. I don't know how you do it. If I miss out on just a couple hours of sleep I'm rotten the rest of the day, and here you are getting virtually no sleep most nights. Our family's prayers are definitely with you and Antalya for this surgery. Good Luck!!
I am praying for you that all goes well and she can get the surgery. I know that it has made a HUGE difference with Leah. She sleeps better and is eating real food and lots of it. I so understand how hard it is to not get any sleep and then try to function the next day and be a good mom. good luck and I am thinking of you guys.
Man what a rough night! I pray that the surgery helps and you can all get some restful sleep again!
Londyn was extremely colicky until she was 18 months. She would scream and scream. She would only nap if I had her in the swing with either the vacuum or shower on. At night she would have to sleep right up against me and some nights it was nice to cuddle but others, I just wanted to sleep. Londyn refused the bottle so Joe couldn't help at all. It's tough when you're tired and sleep deprived. I always felt guilty for feeling frustrated with her being that she was just a baby and trying to communicte with me. I'm so sorry and I do hope that things get better. I'll keep you in my prayers! You're a good mommy!
Post a Comment