Day 21

...and making so much progress! Our big girl is moving up and out of ICU to the rehab floor this afternoon!! She is officially off the CPAP and receiving hi flow air through a nasal cannula. She is snoozing after her CPT (chest physiotherapy) - don't be fooled by the medical terminology- it's just a fancy way to describe a nice massage. It helps to get the secretions in her lungs moving.

Next steps are to get situated in her new room and work on weaning the air flow and eating again. She will meet with a swallow team to be evaluated on how well she can swallow and tolerate bottle feeds either today or tomorrow. Big steps. Jimmy and I are thrilled with her improvements, however have to admit we are a bit exhausted. Just a quick update and we'll post more later. Big hugs to all :)

Out cold

I just finished holding our baby girl for about an hour and it absolutely made my month. After only dreaming about it the past few wks and now actually being able to do it - just sends a wave of warmth over my body. It's just how it shd be.

She was completely content hangin out w/daddy the whole time until she fell asleep. Now she's out cold. No medication...hopefully down for the night. Things really seem to be getting better for our baby, and we can't begin to thank god enough, as well as all of you for your prayers.

More tomorrow...

The best medicine

I've had my hands full up until now, hence the late post. I got to hold Alex this morning which made my day. Jimmy and I both miss holding her so much and we are so excited she is at a point where we can start doing this again. She was awake for a good 45 minutes and opening her eyes (as much as she could anyway) . Her face is so puffy lately. Her eyes were almost swollen shut yesterday but they are getting better.

She had a good night with nurse John and is doing well today. They started her feeds again, via the tube in her nose and so far so good. Things are looking up and we are in good spirits. We love sharing good news with everyone and are so glad we have so many to celebrate with :)

I wanted to add this photo, cuz it's hilarous. -Jimmy

Resting

Alex is still hanging in there. She's been snoozing most of the afternoon. She looks like a little angel resting so peacefully (although her halo is riding a little low).

She's still breathing great on her own today -

...and she had a restful night, which means the chances of her needing to go back on the vent are really slim. So we have true progress :) The next challenge (for the docs) will be how to feed her. The continuous air pressure inadvertently sends air into her stomach, and there's a suction tube in her stomach that lets that air out. So food in her stomach wouldn't really stay put. We'll let you know how all that goes. Thanks for all the prayers and kind posts.

Pretty good day

We had a pretty good day today. She slept most of the day, and her stats have been good. We hate to even post it, because it seems like every time we post something good about her progress, we have to follow it with something not so good. But I guess after over 2 weeks, it's about time she starts pulling out of this. All our prayers are working - but we're not out of the woods yet. We just need her to stay strong, and clear of all that nasty mucus.

We had a couple of bittersweet moments when she was awake. We heard her cry for the first time in weeks, which was sweet because it was cute to hear here raspy little voice, but hard to endure because she was crying. But it wasn't long & she was right back to sleep.

So we're hoping she has a good night. We'll let you know how things are tomorrow.

Our feisty little trooper

Big update this morning. At around 11am our little bugger decided she didn't want to be on the ventilator anymore and forced it out. Before that, she had been making some steps toward breathing on her own - so this is where we wanted her to be anyway, although a little sooner than the docs felt comfortable. So she's now breathing completely on her own, with some pressure support from the CPAP which blows continuous air through her nose. This keeps her lungs & airway open, it does.

So things aren't looking so dark today. Let's just hope & pray that our little princess keeps it up.