Ella had a pretty good night last night, that is up until about 4am. At this time she started to get agitated and became so upset that nurse Michelle had to bump her oxygen up to 700ml just to calm her down. She took her time weaning it down, and shortly after morning shift change it was back to 500ml.
We don’t know for sure what caused this episode, but we think it may be related to a change in her continuous feeds during the night. Her food was increased to 30ccs per hour over 8 hours, up from 25ccs per hour. Tonight they’re going to try venting her halfway though to see if this helps (thanks Janet!).
Ella had an intermittent fever throughout the day as well, and continued to be fussy up until 3pm. Tina and I were concerned that this was a sign of what we’d seen in the past when she’d been switched to getting diuretics through her G-Tube. Her saturations didn’t look good and her heart rate was elevated, visual indicators that Ella’s not feeling well.
After talking it out with the nurse practitioner we noticed that her oxygen flow had drifted. It had dropped to 300ml! This would make a big difference in her saturations, and sure enough, when we bumped it back to 500ml, her numbers came back up. This didn’t happen right away, but took some time.
The Bun slept most of the day, probably from all the drama earlier. Her numbers improved in the evening and she seemed a bit more comfortable too. She even gave nurse Michelle a few smiles when she stopped by to say “hi”. We hope this means that Ella is starting to tolerate her diuretics through her G-Tube. The next couple days will confirm this for sure.
One thing that’s kind of fun is that Ella’s bed was upgraded. It’s like going from a double size mattress to a king size. It’s so big her swing can fit in it too! Nice for her to have the extra space. Just wish it was a little bigger so we could crawl in there and cuddle up with her =).
I also want to share something that totally blessed me tonight. The last 36 hours have been emotionally tough and I’d really felt raw. I’d been praying for the Lord to deliver some peace and comfort. While we were there tonight, I happen to start up a conversation with a couple that’s been across from us for the last two weeks. You’d think with my big mouth, I would’ve got to know them the first day we saw them there, but it’s tough because you want to be sensitive to the people around you and respect their privacy.
Well, I’m bummed we didn’t talk with them sooner, but I’m glad we’ve connected now. What an amazing Spirit filled Christian couple! They’ve been praying for Ella over the last couple weeks, and just talking with them was so comforting. Praise God for His providence in how our paths crossed. Such a blessing!
Please continue to pray for our baby girl. This transitional period with the diuretics is so critical. Please also pray that Tina and I receive wisdom and discernment for our girl’s next steps. We continue to trust the Lord in all these things.
P.S. When we arrived after shift change, Janet was holding our girl. There’s a short video below that captured the moment.
P.P.S. We haven’t talked to Liz or Rusty, but we have exchanged a couple emails and are keeping up with Par on his blog. Sounds like their easing into the swing of things back in Birmingham, and baby Par is progressing well. He’s eating good (holy leche Batman), and watching movies with his parents. Such a blessing to see him doing well! Praise God for that wonderful little boy!
