It’s a busy day! Annelise will get more stuff removed today.. the final thing sticking in her is her power picc line. It’s coming out today!
I’ll let you know how it goes tonight🥰
Here’s some photos from this morning. She was wide awake💖💖💖
Evening Update:
The evening update from Omaha includes one baby girl who no longer has anything poking into her skin! She has lots of tape, sensors, and a nasal cannula pushing air into her lungs, but that’s nothing compared to all the hardware that was attached to her in her first days of life! What a difference in three weeks!❤️
It is getting a little easier to emotionally get through the “desat” moments, where her oxygen saturation levels suddenly start to plummet. Since they’ve figured out that it’s an airway obstruction issue, everyone is very careful about how they position her in her bed, and the nurses pass on tips and tricks that they found useful on their shift to the next nurse that comes to join us. This leads to fewer desat moments, as well as a game plan on how to quickly overcome them.
Our heart surgeon came to visit us today❤️, and will keep looking at her heart every few weeks to see how it’s growing... while he was with us we were talking about Annelise’s tiny chin that is making her airway so small... and he mentioned that there is a surgeon in Michigan, who has helped some kids like Annelise by performing jaw surgery, to pull the jaw forward, and give them the room for air that they need. We have no idea if Annelise would be a candidate for such a surgery, but it was interesting to think about us traveling all over the states to pick up surgeries that will help our sweet girl! Getting a tracheostomy wouldn’t be the end of the world. But I would travel to Michigan if that meant we could avoid it!
The neurosurgeon also came to check out her incision from surgery, and spoke about his thoughts that it looks like she will need a shunt surgery in the future, but she’s not showing signs that it’s an emergency now.
People ask me how I’m feeling, but I can’t articulate it lately, because most of what I’m feeling is tired. Rest is the goal for tonight for us all. I do know that through the exhaustion, we’re so grateful to be Annelise’s parents. We were talking and praying with her tonight, and Kevin mentioned how God knew her name even before the earth was in existence. I love that. It reminded me of when we were thinking of names, and my friend told me that too.. that God knows the name of our baby before we name her, and knows everything about her. He knows her and He has a purpose for her. She didn’t come to us by a “fluke” chromosomal “error”... this baby girl is 100% who she needs to be, and her little life has already brought so much glory to her creator. We love her so much!💞💖💞
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