7/22 Evening Update

Shunt surgery is done, and went well according to the neurosurgeon! Praising the Lord for lending His peace in anxious moments.  My worst-case-scenario tendencies were definitely overshadowed this afternoon by the confidence I have that God’s hand is all over Annelise’s life, and that He brought us to this place to have surgeries just like this so she can heal and be cared for by professionals who see her value and worth.  They are getting her settled back in the NICU now, and her nurse will call us when we can go back to see her. When we see her, she’ll be intubated, with that dang breathing tube back in.  Our prayer is that she wouldn’t fight the breathing tube, that it wouldn’t irritate her, and that she won’t gag on the thing.  We hope without having to spend so much energy breathing, since the tube is doing all the work of breathing for her now, she’ll continue to grow and get even more rolls and chub and strength!
We spoke with the doctor about the results of the scope before her shunt surgery.  She has a floppy epiglottis, and a very small jaw.  The ENT specialist said that there are surgeries available to fix the multiple issues one at a time, but there is no way of knowing for sure if the procedures will lead to a clear and functional airway.  If she gets the jaw surgery, for example... there's still the issue of the floppy epiglottis.  He said the tracheostomy isn't a magical easy option, but of the options that are available for Annelise, he would recommend the trach.  They will try to wean her down to not needing a ventilator, and he didn't promise anything, but said that he believes she does have a good chance of only needing the trach, without having to have the vent attached all the time.  We like the idea of her being able to breathe and grow now... and when she's much bigger, perhaps she will get the muscle tone in the throat that will help her... or something else will change for the better as her anatomy grows.  Or at any other time we could revisit the jaw surgery option if we find a surgeon who has had success with it.  We’ll continue to ask for prayer for wisdom, as this is the first time we’ve had options for a surgery.  All the other issues were very straightforward that she needed the specific procedure to save her life.
I can’t wait to go see our brave and tiny but mighty 6-week-old!💕🤩💖🥰
The big specific prayer request is Lord, please heal this baby girl and keep away any infection.  Zero, none, nope, don’t want any.