12/20/19 - It's beginning to look like Christmas!

Thank you to anyone who ever donated blood!  Annelise was on the receiving end of a blood transfusion, and she is feeling better because of it ❤ She had been getting more anemic, compared with last week's test.  Before the transfusion, most of the day was spent being fussy and grimacing like she was uncomfortable.  It was a long day.  It takes so much out of me to watch her be sad and not have a good way to help.  These doctors and nurses and RT's are working to keep her as comfortable and healthy as possible.  We are still waiting for results from cultures to come back to find out more about what's going on.

There were two very bright spots in the day!

Tim and Kathryn came to visit Annelise while they are in town.  Put tears in my eyes to see my sister with her cute baby bump, carrying my baby niece in there!

The other fun visitor was Julie Clause!😆
My friend Julie stopped by with In 'n' Out and Christmas decorations for the hospital room!  Christmas lights are good for the heart.  As are great friends❤❤❤❤

We got here on Saturday, so it's coming up on a week in the hospital. I will keep you posted on what we find out today!

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12/19/19 - Fever carries on

When you have a fever and don't feel good, it's nice to just relax and watch some TV.❤

Looks like we will be staying inpatient for a bit longer.  They suspect she has pseudomonas, a bacteria in her trach... causing the fever ☹ Apparently it's very common, can be treated with antibiotics, and so far respiratory wise she   has some more goobers than usual, but still very manageable.  The annoying part is that we got into a routine of how to manage them at home, and here in the hospital we have to be on someone else's schedule and can't just do whatever we want.  Shows me just how far we have come though!  All that hard work at home made us really know our girl and what she needs.  I've been living at the hospital with her so I can pass it on to the people caring for her.  They are doing a great job too.

12/18/19 - new fever

Annelise spiked another fever today, which prompted more tests to look for an infection somewhere else☹  No updates have me optimistic that all is clear.
Tentative discharge tomorrow if all stays well.  She is tolerating her feeds... and I'm grateful for her care team here.  Now we wait to see what they say!
Thank you for praying for us.  We've seen Annelise brave through her first return trip to the PICU.  We give all Glory to God, her saviour, great physician, the one who made her perfect for us, just the way she is!   So grateful to be this little fiercely sweet fighter's parents❤

Dec 17th - Pilots bring presents

Pilots came to the PICU to deliver cheer and stuffed animals to the kids!  They loved on Annelise, and we got to share some with them about Trisomy 18, how we found hope and help at Children's in Omaha for her heart repair, and how more and more parents are advocating for interventions that were previously denied based on diagnosis alone, and receiving them, because our kids are worth it!  Annelise slept through it all😆.  But that's okay, we are starting her feeds today and she can use some rest so her body is ready to tolerate the heck outta that feed!
Q

December 16 - 27 weeks old

What a difference a day makes!
Plus antibiotics and a central line with fluids..... Annelise still has moments where we can tell she has pain, but so much less intense than yesterday!
Thank you Lord for antibiotics and smart doctors!
We will be here until she shows us that her guts are working again.

12/15 She's Awake!

She's awake!❤  Now I want her to go to sleep so she can get MORE better!😍😍😍

12/15 update

They did it!  We are waiting for her to wake up now.