Happy 3 week birthday!

Morning update:

Hello from Omaha!  I woke up praising God for rest last night for both Annelise and myself in the hospital. Word from her team here is that next up will be a consult with an ENT specialist.  She lost a few grams of weight last night, and her head circumference did increase slightly, with a head ultrasound showing that her ventricles have increased in size...  it’s not enough to be an emergent situation at all, just something to keep watching at this point.
She does look comfy on her tummy in her little bed, and that makes me so happy!  Just trying to take in these moments and breathe... since things seem to change quickly around here!  She’s doing great right now🥰. And she’s 3 weeks old today!🥳
Here’s a fun comparison pic of her and one of Kevin’s baby pics.  I think she has his eyes!🤩😍😄

Evening update:
I forgot to tell you all that Annelise’s “blood gas numbers” early this morning came back and her C02 levels were pretty good! 🥳👍
I got to have some good cuddle time with her this afternoon🥰😍, then the ENT specialist came by today to do a scope and check to see what’s going on in her throat/airway.  He found that she indeed does have a cleft palate, that she has a small chin, and low tone... there is a fancy word for the low tone... but I forgot it, and most people refer to it as a “floppy airway”.  He said her tongue is taking up too much space in her tiny airway.  That’s contributing to all those alarms about her O2 levels throughout the day and night.
The ENT mentioned that Annelise will have her own story, apart from any similar case of trisomy 18 that they have seen.  I appreciate that perspective!  He also said though, that it is a very real possibility that Annelise will need a tracheostomy and a trach tube placed in order for her to be able to breathe better.

Specific prayer requests are for her muscle tone to get stronger, and for her growth to increase the space in her throat for her tongue AND air too.  ENT is going to give her some weeks to grow, and then reassess.

Annelise had a great day overall, Kevin got his job started remotely, I got to visit with cousins who spoil us with thoughtfulness, now hopefully we all sleep!