First of all, let me update on yesterday. We had a great morning. She was very, very alert yesterday morning. She had her eyes open (well, one of them at least... the other has been swollen shut!) and looking around and focusing on stuff and following voices. We read books and she seemed to really pay attention and be interested. She was acting like a regular one-month old baby and that was really cool! The nurse even suggested that we hang a mobile over her bed so that she'd have something to watch. Sweet Mama and I went out at lunchtime to buy one, of course! They were able to wean a few drugs down some more (Flolan for PPHN, Morphine for pain, and Hydrocortizone for low cortisol) as well as weaning her vent settings which she tolerated well. We were continuing to increase her feeds (of breast milk) every eight hours. We were having a stellar day!
Then, yesterday afternoon her oxygen saturations began to drop (they call that "de-sating" in the biz). We like that number to be close to 100, and stay above 95. They started drifting down into the 80s and 70s which is a big problem. For the next three hours or so we tried several different things to get her sats back up. They are describing Clara as a "minimal stimulation" baby meaning that she doesn't really like to be touched or moved and noise and lights seem to agitate her. Also, every time she poops/gets her diaper changed she also seems to de-sat. One of the big factors for getting her extubated (off the ventilator) will be her showing us that she can tolerate getting messed with and not letting those saturations drop. Anyways, it turns out that the issue that caused yesterday's episode was that her ET tube (the ventilator tube in her mouth) was positioned a little too low. Once we pulled it out some, she recovered a good bit. However, after being agitated for so long, she had a hard time recovering to the levels she experienced all morning. Also, I think being awake all day long had probably exhausted her. I realized yesterday that she's been sedated for her whole life! She's never had to learn how to fall asleep. And since she had been awake all day, and then gotten all stirred up, I think she was just worn slam out. We gave her an extra dose of Versed (the sedative) and once she sacked out her sats climbed up again. She had a peaceful and restful night (so did her parents, by the way.) Whew. Glad to have that little episode behind us!
We increased her painkiller some yesterday during that episode and we're going to keep it where it is for now while we're still trying to wean things and while she seems so easily agitated. We'll worry about weaning it again later. It was a little sad to see her zonked out again today and not looking around like she was yesterday, but she has had a great day today of sleeping very peacefully. We are still continuing to wean drugs and vent settings, as she can tolerate it, and are continuing to increase feeds too. That's going to be the continued game plan until we can extubate her, which we hope might be sometime next week. We're also still working on diuresis and she's doing a great job with that. She's down to 6.1kg today (13lbs, 6oz) and looking much much better to us, although we still have a long way to go. We removed her foley today so now she's peeing straight into a diaper. I'm hoping that we might remove her UAC (umbilical artery line from which we've been drawing blood for blood gases) tomorrow. The fewer lines we've got going into her, the less chance there is of infection. Plus, once her UAC is out we can start putting some clothes on this little lady! Today we've also been turning her a lot more, in part to keep her skin healthy and in part to help with the fluid. Unfortunately with one of those turns today we found a bad pressure sore at the base of her head under some neck rolls. It's several days old, at least, maybe longer because it's already scabbed up and healing well. There's no infection, so that's good, but it's a really nasty looking sore. It's probably from being in the same position for three weeks while on ECMO and could have been made worse with all the swelling because it's kind of in between some rolls of skin that were puffed up a few days ago. We've also learned with all this turning that she's very happy laying on her left side, but doesn't particularly like being on her right side. Whenever she's on that side her sats are consistently lower. We do have to keep turning her, for the bedsore issue as well as to help get her fluid off, but it's good to know that she prefers one side to the other (Robert's theory is that her "good lung" is the right one and when she's laying on her left side it's up and not compressed. Makes sense to me!). Robert and I got to help with the last turn, which is really quite an event! I really enjoy the moments when I am able to help care for her, even with something as little as positioning.
I think that's about all of the medical updates for today. We will just have to continue slow and steady as we wean these things and give her time to get over her stimulation issues so that we can drop the vent. That will definitely be our next big move! We will have another echocardiogram tomorrow once we've completely weaned her Flolan and see how the pulmonary pressures are doing then.
On this Good Friday we are more acutely aware than ever before of what a huge sacrifice Jesus' life was. We come closer now to understanding the deep pain of losing a child. There are no words strong enough to express what an incredible gift it was that God will willingly gave up His Son on our behalf. We are so thankful for Jesus' life, death and resurrection and hope that in the midst of this Easter weekend that you are reflecting on the enormity of that sacrifice too.
Now for two days of photos!
|Yesterday, still pretty swollen!|
|Today, looking much more svelt!|
|Clara's new mobile, with a lion, a hippo, and a monkey.|
|Precious little fingers.|
|We are so in love with this little cutie!|