Finding a New Normal

Each one of us has had to find our new normal as well as finding our new normal as a family of four now! The hardest part has been the lack of sleep! The whole open heart surgery thing really screwed up Mila's sleep! Part of it I'm sure is/was just waking up scared, and the other part I'm pretty sure is that she got used to being picked up every single time she even whimpered while in the hospital and when first home because we were afraid she was scared or in pain and we wanted to comfort her. While in the process she forgot how to get herself back to sleep without us and was waking every single hour. We'd rock her, put her down, only for her to wake up right away. When we finally got her down she'd wake up another hour later. So we've been working on teaching her how to get herself back to sleep little by little by little, while at the same time trying to give her the comfort she needs. We're making progress! She only woke up once last night where she needed help getting back to sleep. She woke up a couple other times and whimpered/cried for a minute or two and got herself back to sleep. The best part is that she was soooo happy this morning because she was finally well rested! We're hoping the progress continues.

If there is one thing I NEED in life, it is sleep! I'm a typical 8-9 hour a night sleeper and we got way spoiled with Zoya who sleeps 12 hours overnight and has pretty much since week 2 home! I could probably function on 5-6 hours, but certainly not on 3 hours added up by 20 minutes here and there. Let's just say you might have found me crying in my cold car in the garage at 2am one morning. Shawn has been so fabulous and has been strong when I couldn't be. He has taken a big hit on his sleep, all while working full time and I soooo appreciate it! We're working together trying to muck through this transitional time and trying to find some sort of a schedule-ish type day that works for Mila (and us).

When you consider all Mila has been through in the last 3 months, she is doing great. I mean the poor girl was taken out of the only home she's ever known, traveled half way across the world, saw lots of doctors, had airway surgery only 3 weeks after being home, and open heart surgery one week later! Whew! How did we make it through all that???? What a whirlwind! God surely carried us through and continues to do so. If someone would have told me this would be our path and we'd adopt a baby who would have so many medical needs, I would have said NOPE! We trusted God and followed him on the crooked, twisty-turvy path he laid ahead of us piece by piece. I never thought we'd be strong enough to make it down that path, but here we stand....rising with God by our side.

I can finally, just now, start to think about Mila's future a bit more. Seriously during that time we had to literally take life one moment at a time and simply could not see past the stepping stone we were currently walking on. Looking back I picture Shawn and I standing in the middle of an empty land with stepping stones only behind us, trying to see ahead but not being able to because of the heavy fog. Moment by moment, the Lord reached out and took our hands leading us to the next stone. The night I was alone in CICU with Mila I was soooo tired and stressed after a long rough day. She woke up for the 78th time and I just stood by her bed praying for God to lay His hand on her and comfort her because I was too weary to keep at it by myself. At that moment I so vividly felt God's hand on my shoulder comforting me. I prayed for Him to comfort her not me. But there He was beside me when I felt I couldn't carry on another minute alone. I surely felt His presence at that time more than any other time I can remember. Peace washed over me and I could feel so many prayers being said for Mila and for us. I treasure that memory because it comes to mind each time I am weary and feel like I can't make it to the next moment and it reminds me He is our strength and with Him we can get through anything even when the moment seems absolutely impossible. Mila-bean is teaching me so much already and helping me find a strength I never knew I could tap into.

Mila's last night in the cardiac step down unit! Zoya was soooo happy to see her sister again! And I'm pretty sure she was just as happy NOT to be the patient for once and be able to run through the halls and ride the elevators up and down just for fun!

They let us put a portable monitor on Mila and take her around the hospital. It was so nice to do something as a family of 4, even if it was eating dinner in the cafeteria together! (Mobile was a Christmas present)

Safe at home, right where she belongs!

Needing some PT to work on her pill bug (potato bug) pose...she curves to the right. My PT friends if you have suggestions until PT starts (soon) that'd be great! Yes her spine was xrayed and they said it looks okay, slight curve but they think it's all positional and related to her poor sleeping pose due to the airway issues.

My Mila-bean

She looks like a red head in so many pictures but not so much in real life...can't wait to see what color her hair turns out to be!

Girl loves her beads just like her sister!