Tuesday

I know this is sort of a random picture, but I will tell you why I had to post it. It's from the night before we left Logan for pre-admission testing (Wednesday night), and it was the first time ever that after feeding Haley-bug and while we were rocking together that she kept reaching up with her hand and touching my face. She just kept touching my chin and my cheek and would hold her hand there. (Unless Grandma tried to take our picture, so Grandma had to hide behind Haley-bug and I had to not look at Grandma so Haley wouldn't get suspicious...) It was so wonderful and adorable, I just want that little hand to reach up and touch my face again.

I unintentionally lied in last night's blog when I said that Bug hadn't had anymore seizures since starting the Keppra. It turned out that she had had two more small seizures during the day, one around 10 am and one around 5 pm. So they increased her dose of Keppra slightly, and they weren't surprised because they start all babies at ~20 mg/kg but most end up needing to be on ~40 mg/kg. They just want to find the lowest effective dose so they work their way up gradually. But after increasing her dose last night, she has now not had any more seizures today, so lets hope she can keep that up!

Last night, post-blog, they also did Haley's brain ultrasound. It did show multiple, punctate (small), areas of either ischemia or bleeding in the outermost edges of mostly the back half of Haley's brain. These are basically 'mini-strokes' and are not too uncommon after being on the heart and lung machine for so long, and after arresting. They can't tell for sure with ultrasound whether they are bleeds or ischemic events, so they won't start her on a blood thinner until they can get a CT or MRI that will give them a better idea. Obviously they have no idea what these mini-strokes will mean in terms of Haley's long term prognosis. Ultrasound is the lowest of the low for image quality of the brain and they can't get as good of an idea exactly where in the periphery they are. Also, even if they knew exactly, they wouldn't be able to say exactly what deficits there might be. They like to remind us frequently that babies' brains have a lot of 'plasticity' and aren't set in their ways yet, meaning that her brain may be able to compensate for damage to one area more easily than an adult brain ever could. Once again, we will just have to wait and see. But they are encouraged by the fact that they are all out in the periphery so far, which is a less critical and densely packed area than in the center of the brain. Wait and see, wait and see...

Today her blood pressure has been rather touchy again, which they said may persist as long as she's so fluid overloaded. It seemed to level out a little bit today, but it is being a bit troublesome again as I type this. Once again, we'll see.

Earlier today she was doing so well on the Oscillator and they'd been able to put its' settings low enough that they thought it was worth a try on the regular Vent. Her oxygenation levels were GREAT after they switched her over, and I was so optimistic, but the blood gases they ran each hour after switching her showed that she was getting more and more acidotic and that her CO2 was climbing (not good). So after 2 hours they had to put her back on the oscillator. They said really they were fine with that and usually they try switching to the Vent a few times before they're finally successful. She just needs to get more of that fluid off because right now she is swollen that her body wall is just too stiff for the regular Vent. She'd been doing really well back on the same low setting on the Oscillator all day until just the past hour or so. Then her stats started dropping along with her blood gases, and they weren't improving even when they bumped up the oscillator. They just took a chest x-ray and it showed the problem: her endotracheal tube had moved down into one of main bronchi instead of being in the corina (the junction of the right and left main bronchi) like it was supposed to be. Basically, only one of her lungs is getting air/oscillated! So now we are waiting on Respiratory therapy to come and readjust her ET tube, and hopefully that will do the trick. Every little bump is just so nerve wracking, and I feel like I'm perpetually holding my breath...

On a good note, they placed a Nasal-Jejunal tube today (a feeding tube that goes from your nose, bypasses your stomach, and places food right into the small intestine) and have been feeding her formula since around noon today! She seems to be tolerating it so far, and hopefully that means we'll have some dirty diapers again soonish! Her urine output has been good today too, and that's just what we need to help get some of this fluid off.

We did have a fun distraction this evening: Katy K, Susie K, and Sydney all came to visit Miss Haley-bug, and then they took us out to dinner at North Star Cafe - YUM! Unfortunately Haley is really only into formula and she declined their offer to join us... ;)

Alright, that's all for now. Things have gotten busy around her suddenly and I hope they quiet down soon. What I wouldn't give for a boring night.