Friday, June 7, 2013
Day 8 NICU
They also weaned her back down on some O2 today. She was at about 45% and now she's down at around 40%. This is not the first time we've tried this but the change happened midday and by the time we left her blood gases still looked good and saturation was very high. The one frustrating thing about her ventilation is that on the high frequency oscillating vent they don't want her breathing on her own, "fighting" what it's doing for her. She keeps putting in a bunch of breaths of her own, which is counter productive and increases the likelihood of getting air in her bowel as she swallows it. Feels kind of funny, hoping that your child will stop breathing.
Fentanyl is the big thing we haven't been weaning. In fact, she's been getting extra here and there when she gets wiggly and tries to cry. These fits tend to make her heart rate go way too high and more fentanyl brings her back pretty quickly. She's clearly having some sort of discomfort/distress at those times but we can't figure out what. I'm suspecting that until she can get weaned down on the fentanyl to about half of what she's on they won't want to do surgery because their additional pain relief options will be limited. I'm not in any hurry. If she can get rock steady before surgery she'll be that much more likely to pull through without trouble.
She looked so good tonight that it wasn't even stressful to leave her in the care of the nurses while we came home to sleep and spend time with sweet Willow. After we left, Q's parents went by for a visit so it was nice getting a mid-evening report that she was doing well.
In the sad news of the day, a CDH boy whose story I've been following online and who
was born about 24 hours before Clarity, at almost the exact same gestation, passed away today. He was having some sort of electrical heart problems they hadn't expected that were causing arrhythmias and those challenges plus the CDH were too much for him. It was a pretty shocking blow for me and sent my anxiety over baby girl through the ceiling. They're just so fragile. Thankfully the other little one, a girl, who was born a couple days after Clarity is doing well. My thoughts just keep going back to that little boy's family, hoping they're finding some comfort in their grief to get them through tonight.
Tomorrow's another day of sitting and watching out beautiful girl, trying to send her strength and love. We're over a week in without any major surprises. Let's just keep our fingers crossed that it will stay that way.