An update via Facebook statuses

Here is a series of updates from my Facebook statuses. More to come! :)

Wednesday evening:
Evening update: Waverly slept/rested much of the day. She's been on bipap all day. We tried her on nasal cannula but she was working too hard to breathe so quickly put her bipap pack on. Around 5:30 during a breathing treatment she threw up a ton. We deep auctioned right after and got a lot of formula out of her lungs
So she is now not getting feeds and is on iv fluids only. Definitely a setback. Hopefully tomorrow we can get GI docs in here to try to figure out why she's struggling so much with digestion (may be a stomach bug on top of it all).
If you can pray for me too I am feeling nauseous and not great tonight. Trying to decide if I should go home (which would mean leaving her overnight-we've never done that before) just in case I've got something starting or risk staying here and being sick here (ew and yuck). Pray for wisdom and clarity in what to do. Thanks!

Thursday: 
Not much new to report from the day. I am feeling much better than I was last night, and although it broke my heart to leave her, I think my body recovered better by getting a full night's sleep. She was in great hands (and I texted whenever I woke up in the night to check!). She's still on the same amount of breathing support-bipap all day. She was getting backed up with her formula in her tummy again, so it looks like we may be changing her formula, which means taking her off the ketogenic diet (that helps with seizures) and back on regular formula. This could be good for her digestive issues, but we are unsure how it will affect her seizures. So the big prayer request would be for wisdom and guidance on if and how to do this switch, and that her body will accept it well and she won't begin to have an increase in seizure activity. Also pray for her lungs to continue to heal from the pneumonia. She's a tough girl!

Friday: 
"Mama, I wish there were 2 mamas. And the real one could stay here with us, and the other one could be at the hospital with Waverly."

Today's update. She is doing well with weaning her oxygen thru the bipap. Hope to try heated high flow oxygen thru the cannula tomorrow. We tried to increase her continuous feeds today and this evening she threw up again so it's back to a slow drip. We may start to transition to a new formula tomorrow.

Saturday: 
Kathryn woke up coughing and now has a fever. I'm struggling to understand it all and be ok with this.

Today's update: Waverly was on heated high flow cannula twice today and did well with it. (She was on bipap the rest of the day.) They are starting her transition to her new formula-slowly increasing it while decreasing the old formula. They are also working on sloooowly increasing her feeding rate (had it up to 15ml/hour this evening-slow!). She threw up early this morning at 6a.m. but hasn't since. Her lungs are sounding pretty good. I am back home again tonight and our wonderful therapist Laura is keeping her company tonight so we could put the big kids to bed as mommy and daddy and wake up with them in the morning before the week gets all crazy again. Also thankful to Krisha for coming this morning and helping to clean the house, as she knows how much it helps my anxiety to have the house at least a little in order. And thanks to Sandra for keeping the sick kiddos this evening so Johnny and I could spend some much-needed time together this evening. I've had plenty of tears today, but also more blessings than I deserve. We are so thankful for all the wonderful support we have when we are pulled in a hundred directions and going through a lot. Praise You, God, for your grace and mercy. Things to pray for: that Waverly would tolerate the increase in feeds and new formula, and that we would not see an increase in seizures. For Kathryn and Jackson-she still has a fever and coughing/sniffles, he's just got a drippy nose and some slight coughing so far. Strength for our bodies to stay healthy. Thanks everyone!