In my head, I try to do a reality check and remind myself that God deserves our constant praise, even when things aren’t going the way we asked for them to go.
Like right now.
I’m praising God for Annelise’s life.
I’m praising God for the things she can do.
I’m praising God because He is worthy of being praised. He loves us and has saved us and we’ll be with Him someday apart from this broken world.
I’m praising him even when it hurts, like now after a really hard night in the NICU.
I’m praising Him when she can’t do things, like her comfortable and breathe easily.
Annelise was sitting pretty for the last couple of days in a spot where she was getting a lot of rest, and we had figured out that she likes to be on her belly, and gets the most air when she’s on her belly... so we were positioning her on her tummy, and she would relax and go right to sleep, and have beautiful oxygen saturation levels for hours.
Last night started this dance of her not looking comfortable when positioned on her tummy, and not able to hold her O2 sats... also having heart rate dips throughout the night. There were a few times where she was crying so hard, and we couldn’t figure out why... everything that had set her up for a nice long nap in the previous days, suddenly wasn’t working at all. The alarms were going off so often that I didn’t get to sleep until after 5am, and I’m up again before 7 because of another alarm warning of dropping O2 levels. Our nurse called others in to brainstorm, and they finally found a position that Annelise would be comfortable in for a bit. They also were wondering about her heart rhythms, so they did an EKG and sent that off to the cardiologists.
I cried to the ENT specialist that’s on call today because the original specialist that she saw is off today because it’s a holiday. Today is Annelise’s due date... and my expectations for today were to wake up to a rested baby girl, do a cute photo shoot with her 4th of July headbands... and it was going to be so fun and much like the day before.
They keep telling me to expect ups and downs here, and I know this down time seems even more so because of my lack of sleep... and if I take a step back, I can recognize that they might just reintubate her with that breathing tube again, but that might be what she needs for now too. It could be just a part of her story, not the entire story. I would really miss being able to pick her up by myself, but I would appreciate knowing that she’s getting all of the breaths that she needs.
The song “Praise You In This Storm” is playing in my head... the verse in particular that says “you are who you are, no matter where I am”. I have many tears, and I know that although God’s not clearing the storm just yet, He’s here with me through it. And I know the storm won’t last forever... but wanted you all to know how Annelise is doing today, and that she could use some extra comfort and rest today. I’m going to get some rest while Kevin stays with her.
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