The night included some sleep, but Annelise doesn’t stay comfortable for long lately. She wakes up and tries to lift her head and move around. For a baby who has general low muscle tone... her neck didn’t get that memo... she’s strong there!
She got some holding time with me from midnight to 1:30 to try and calm her. It worked for awhile until it didn’t and we put her back in her bed. She was comfy for a few hours and has been keeping everyone on their toes this morning, searching for her most comfortable spot to get to sleep in.
I got about 3 1/2 hours of really good sleep last night... so a nap is definitely in my future today! My body is overloaded from being so tense while Annelise has been so uncomfortable. I’m listening to music and filling my mind with how amazing it is to have these days with Annelise... how she’s part of God’s plan, and how He is here giving us the strength we ask for to get through this rough patch. It’s like Kevin said... maybe God’s letting us have Annelise and go through struggles with her not to show that we can do it, but to show that He can do it.
We’re trusting in His promises and His perfect timing to get us through this morning and day.
Evening update:
Introducing... Annelise’s blooming personality! 🥰. Her nurse made a comment that she’s a “straightforward little lady” and doesn’t waste any time telling somebody when she doesn’t like something. If she doesn’t like how we placed her in her bed... she does her best to move herself! She has been lifting her head up and back to a position that I don’t think looks comfy, but she seems to like it because she keeps doing it! Now, in the process, since she has that tongue that gets in the way of her breathing easily... if she moves her own head, she often gets into a position that limits the oxygen delivery, and then the oxygen saturation in her blood goes down, the alarm on her monitor goes off, and a nurse hurries into the room to help her. I think we figured out a way to place her that will make it a little more work for her to lift her head, so hopefully she’ll stay put for a little while and get another good nap tonight.
Sleep finally came for Annelise today 💖😴💖
She had quite a few good long naps, and when she kept crying, Kevin got to hold and comfort her, so she slept some more on Dad 🥰😍
I love that Annelise is comforted by human touch, and seems to respond to that connection by relaxing💖
I got to go to the Rainbow House and get a good nap, and even watched some “Fixer Upper” while I did some laundry. The laundry included a new tiny dress for our cutie. Bath day is tomorrow, so I’m hoping she’ll be feeling good and want to play dress up tomorrow! If not tomorrow, then another time soon.
Annelise lost 10 grams today, but a big win is that her head circumference stayed the same! No increase!👍 Praise the Lord for the way He’s sustaining us and giving us the peace we ask for, so we can continue trying to live in the moment and just love on this baby girl! I had moments today of getting way ahead of myself and worrying and even being sad about future things that haven’t happened.
Counting the blessings that we have going on today is helpful in bringing my brain back to the moment and away from dwelling on worries about the future. While I could easily make a long list of things that I’d like to change.... we have a full column under the “blessings” heading too. At the end of the day, I’d much rather look back on the time I spent with Annelise and know that I soaked up all her precious squeaks, sweet cuddles, watching her be cared for by her amazing dad, her bright eyes, and even all the poops that mean her insides are working the way they should!
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