Thursday the 18th

Lots to process today.  We’re still scheduled for a VP shunt surgery on Monday at noon (10am California time).  At rounds this morning they were questioning whether to reintubate Annelise earlier than Monday when she will need to be intubated with the breathing tube anyway for the surgery.  They decided to leave her be for the weekend... but we were told that she could be reintubated at any time if it becomes necessary.  They were talking this way because she has had more and more problems with breathing, and basically she only likes the faceplant now, and will have long episodes of not being able to keep the oxygen saturation in her blood at acceptable levels whenever she is shifted to not be straight on her belly.  It’s worth it to keep trying to reposition her, because it’s not good for anyone to stay in one position too long, but it risks stressing her out.  Today she was able to have a nice cuddle with me for awhile, then her feeding tube slipped, got pulled on, which made her spit up, and it was the end of the cuddle party at that point.  Took awhile to get my heart rate back to normal after that!  Makes me sad because very soon it is going to be so much more difficult to hold her with the breathing tube in.  I was hoping for a long time holding her today, but it didn’t turn out that way.
When she was weighed tonight.... she was promoted to 2 kilograms!  (4lbs, 6oz) This means that the ENT specialists will get involved now and determine the next steps as far as her breathing.... since it’s getting more difficult for her to breathe and not easier... nobody will say it’s definitely going to happen, but people are making sure we are prepared for her to need a tracheostomy.  I’ve been sitting here for so long trying to figure out what to write about how I feel about a tracheostomy... and I just don’t have the words yet.  I don’t want her to get one, even 1%.... that’s a true statement.... but also, if tracheostomies weren’t a possible medical intervention, I’d be writing about how I’m praying for someone to invent a way for babies with airways like Annelise’s to have some procedure done where they just get the air that they need... that’s also true!  I’m already mourning the loss of our ability to get up and go anywhere, because of equipment that we might need.  But then the next minute I’m remembering the time not long ago when I didn’t know if I would know Annelise at all... and here she is 5 1/2 weeks old... and if we bring some breathing accessories home with us with a trach... that could be the start of our lives at home with a growing daughter!  That’s the answer to my prayers right there!
So I’ll continue to pray for wisdom, and we’ll continue to know that we are loved and seen by God, and He made Annelise, and knows what’s going to happen, the same that was true when we first heard the news about Trisomy 18.
This post deserves some fluff and good stuff too!  Check out the cutest unicorn stuffed animal that was given to us by a fellow heart mom whose daughter Ellie was here a few months ago having her heart repaired by Dr. Hammel also.  Ellie’s mom sewed a zipper on the unicorn with a heart inside, and we are so lucky to have such a sweet handmade keepsake.  So thoughtful and adorable!