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The Chaos Reigns
"If we have no peace, it is because we have forgotten that our lives belong to each other." - Mother Teresa

Sunday, February 9, 2014

Layers of the Onion- Part 3 {Sleep or lack there of}

Now we are getting deeper into the Onion...This is the stuff that is.. tougher to peel.

For Jude sleep has been a relatively easy layer, so let's tackle him first.

Jude has been a decent sleeper from Day 1. He definitely went through a large anxiety stage (usual around the hydration piece that I spoke about in my previous post.) We would frequently find him completely drenched in sweat and in a hysterical panic... shaking while screaming "water" "water" from his crib...even when we know for sure he really cannot be truly thirsty. ( i.e. finished 8 oz bottle of milk 1/2 hour before the episode.) So, lots of trips to his room with bottles full of water to rock and comfort him.

Also, he had so much anxiety around sleeping he needed us by his side to fall asleep, or he would become hysterical. This lasted for about the first 8 months home. We finally transitioned him out of this need. 

Well, sleep has been by far the most challenging out of all Gia's struggles. This has been the hardest layer of the onion to peel so to speak. This topic has taken me to the breaking point of insanity. I am going to map through her sleep challenges in brief phases.

Overall, the theme here is Gia is a talented sleep Jedi fighter. She feels sleep is the evil enemy that needs to be conquered. I am hoping Darth Gia soon rejects this dark side and finally declares her allegiance to this sleep force which will finally bring back balance to our family.

The below summary does not include the many hours it takes for Gia to fall asleep at night...or the many hours she lies awake at night.

Phase 1 (First month home.) At night, waking up every 20 minutes terror shrieking with an added 20 minute nap during the day. Crib next to our bed in our room.
Phase 2 (Month 2-4) Waking up maybe 3-4 times a night terror shrieking. With a consistent night terror lasting 1-2 hours a night. Add (2) 20 minute naps during the day. Still crib next to our bed. 
Phase 3 (Month 5) Co-sleeping in our bed. This finally eliminates the night terrors, but in place of it is a 1-2 hour gymnastic routine in the middle of the night.
Swaddling and weighted blanket help her to fall asleep sooner. Nap is finally up to (2) 20-50 minutes during the day.
Phase 4 (month 6-9) Gentle cry it out. Finally sleeps in her own room in her crib. Occasional terror shrieks. (1) 40 minute nap. 
Phase 5 (month 9)  Terror screams return with a vengeance. She is clearly not healed of her sleep trauma.
(1) 40 minute nap during the day.

So, what have we done? Well, at around 7 months of dealing with her sleep struggles, we were at our breaking point (wait... the breaking point was actually at month 1. ) We finally had a sleep specialist see Gia. After our interview regarding Gia's sleep history, the specialist concluded she did not think it was behavioral, and she suspected something medical was going on with her. She recommended getting Gia into a pediatric sleep study as soon as possible, and she told us we were going to make very slow progress with her cognitive development until we finally have her sleep under control. I was thinking more we that we were going to do irreversible damage to her Mother's sanity if we didn't get her sleep under control, but yes, concerned on the cognitive front as well.

So, in December, I spent the night with Gia in a sleep clinic at a local hospital. I was doubtful Gia would even sleep at all for the study. But, surprisingly she did amazingly well. However, I think it was because I was sleeping next to her for the study. I barely slept, but Gia did! Yeah! Success.

It was funny because, the technician told me he was going to hook Gia up to all the equipment after she fell asleep. I laughed and told him there is no way this crazy alert child will sleep through you attempting to wire her up. Trust me. She will shoot up like a rocket as soon as you touch her; hence, why we are here. So, I convinced him it would go much smoother to put everything on her before she fell asleep. It worked, and she complied amazingly well.

A month later.. we finally received the results. (Yes, we had to wait an entire month.)
  •  Gia woke up 4-5 times a night, which is considered mild sleep apnea.  Because her sleep apnea is mild, the doctor does not think this is the source for all of Gia's sleep struggles.  
  • Her sleep architecture looked in normal range. Basically, the amount of time she spent in Stage 1, 2, 3, and REM. Good news. But, I was scratching my head wondering how that can even be possible with her waking up 4-5 times per hour, but I'll believe it, and it is good news on the cognitive front.  
  • The surprising finding was how much she moved during her sleep. They consider 5 movements per hour to be problematic. Well, Gia averaged 26 movements per hour. I had to laugh at this because this child does not stop moving during the day, and she clearly does not stop when she sleeps. (I'll write more on this in my sensory post regarding our never ending jumping Gia.) So, the neurologist and ENT felt this is the source of our issues. Basically, it is preventing Gia from getting a good night's rest. ...and her parents.
The treatment....

The first line of treatment for the apnea and her restless movements was to put Gia on iron supplements. Normal range of ferritin levels in the blood is 7-140 nanograms (ng)/mL for children. When they tested Gia's iron levels, her ferritin was at a 10 ng/mL. I was surprised because I had already started giving her iron supplement 2 months prior to her blood draw, so, I thought her levels would be higher. The ferritin levels need to be at about 50 ng/mL before they hope to see any improvements in the apnea and/or restless movements.  

They also gave her a steroid spray to decrease swelling in her nasal passages to help with her sleep apnea.  

The next steps is we will eventually get a call from Children's Hospital, and they will follow up with some bracelet Gia will need to wear for a week which will give them data on how she is progressing. If the iron/steroid route does not work, they will most likely recommend neurological meds and possibly remove her tonsils.

The environment...

So, where are we now? Well, Gia's attachment therapist thought that maybe her "crib" might be the trigger for Gia's trauma. Maybe she spent too much time left alone in her crib in the orphanage, and she goes into flight, fright, or freeze mode when placed in it. Seems like an interesting theory to explore to me...Sometimes I am too dense to think of these things myself.  I always think God provides what you need when you need it, and I just happen to pick up a free toddler bed on the side of the road a few days earlier. So, I took this as a sign.  

So, I placed the toddler bed back in our room next to our bed. Help us God. And, I put some firm limits around this new situation. For GiGi, this translates to 2 simple words: SLEEP and QUIET....or back to her room she goes. After a few times of shuttling her back to her room for violating my 2 rules, I think the new routine is working. The biggest sigh of relief is she is not waking up terror shrieking in the morning which is a much better way to start to our day. The hope is with some time the security of sleeping next to us will finally help her heal from this wound she has around sleeping. 

We are not there yet, but it is getting a tad bit better. 

We love you Jude and Gigi!! We are just all in need of a good night's rest.