A long Sunday 7/14

We had a day full of stare-downs with the heart rate/oxygen saturation monitor again today.  While I’m getting more desensitized to the ordeal now... since she so often drops in O2 sats... I know the drill... the nurse comes in and checks for her positioning, maybe helps get some junk out of her throat... or sometimes they just walk in the room and the numbers return to normal on their own!  But even though we’re becoming familiar with the scenario... it still raises my adrenaline a little each time it happens.  So after multiple repeat alarms... it’s a stressful day!
Dealing with the emotional intensity without much sleep caught up with me today. I’m just plain exhausted.  I hate leaving Annelise though.  It’s nice when struggling with something, to find others that know about those struggles too.  A woman who has a 16-month-old with T18 has a Facebook page that I follow... and she posted a video that mirrored my feelings today as she was getting ready to go out of her house to have a day to herself for her birthday.... she talked about the thought that she knows is silly, but it still creeps in to her mind when she goes out... the thought that her daughter will one day die, and the errands and doing stuff for herself can wait, so she should get back home to soak up every moment that she can with her daughter.
Kevin and I were just talking about this tonight.  Trying to figure out what is healthy and what isn’t for us in this season.  Being in the moment and treasuring all the cuddles we can get with Annelise is healthy... but treasuring ALL of the moments to the point that sleep is being ignored for fear of missing a moment is not healthy.  I appreciated the other Mama’s Facebook post today including her solution to the anxiety that comes up around leaving her daughter for a time... Proverbs 3:5-6 “Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight.”
God has put so many people in our path to help us both tangibly and emotionally.  Kevin and I can see how the Lord has been setting up our support system for this moment in time long before we even knew we were pregnant!

The days and nights aren’t easy.  Annelise cried for hours today before finally being able to sleep, and her sleep has been interrupted by, in my opinion, way too many episodes of her heart rate and sats plummeting together.  The good news is, she’s sleeping now, and she has bounced back after every “episode”, and she gained some weight!  Welcome to the 4lb club, Annelise Faith!🎉🥳 Her head circumference increased a tiny bit, but not much today.
Prayer for tomorrow includes a conversation with the neurosurgeon about the results from her head ultrasound, blood gas tests, and a stim test in the early morning.. which tests whether or not her body can make cortisol in response to stress.  Praying for peaceful sleep for our whole family tonight, and further wisdom about how to navigate self-care in this season.  Even in these valleys, God is so present in our days, and for that, I am grateful and in awe of all He does for us little people whom He also creates on purpose, just like he did Annelise.💖