Nothing but Smiles at CHOP Today!

After a completely normal Conroy morning including cereal, grapes, trains, Mickey Mouse Clubhouse, and coffee at Beanwood complete with walk into town (call me insane, if you don't know me by now, you should have known I'd be at Target and also walking around within 48 hours of discharge) we headed out to Joe's parents to drop Patrick off about 1. We got to CHOP not long after that. It was much easier to maneuver inside today and we got right to her.

As soon as we got settled, I headed to use the restroom and by the time I came back, there was already a pediatrician speaking with Joe. She introduced herself to me and updated us on Maura. Today was a bundle of smiles. Basically all of her cultures and tests for infection came back with the big negative. Therefore all of her antibiotics have been stopped. They said there is a possibility they'll fit her in for her MRI tomorrow at 10 am, but they didn't know if she'd still be all wired up to the EEG equipment. The nurse had told neurology that she would call if Maura was no longer wired...but when the doctor heard that, she called the neurologist and Maura IS scheduled for definite to get that MRI at 10 am as long as there is no overnight seizure-like activity. They'll remove the EEG wires so she can go. They just want to run the EEG longer because she is no longer on phenobarbital either.



After not seeing any kind of seizure-like activity on her video EEG at all since they started it at 7 o'clock last night, they decided to removed the phenobarbital all together and not give her a dose today (She was only getting one dose a day). They are hoping that it makes her less sluggish than she has been as sleepiness is a side effect of this drug.



She's eating today! She took 20 CCs of breastmilk this morning. The nurse said she was feisty about it too! About 2 hours later, they tried again, and gave her 20 CCs but she only took 15 (and the nurse felt bad because they have to let go of that 5 CCs because it's in the bottle already.) They are using NUK nipples because they are shaped more like mom. They think she was still a bit sluggish today but this is improving.



At around 2:30, the nurse said she wanted Maura to eat again between 3 and 3:30 and asked me to pump so that we could feed her fresh breastmilk. Let me be clear, the only reason we can't nurse right now is because of the EEG and video monitoring, but that should be gone by tomorrow. Basically, she has something like 12-24 probes stuck to her head with petroleum jelly and her head is wrapped with a cut off sock to keep it all on to monitor her brain activity. Picking her up right now would be really en-cumbersome and difficult considering the wires and she wouldn't be able to be monitored via video.

So anyway, I asked for a pump, where I was given directions on what to do and I never have to ask again. Pumps are a free for all. If I see one, I can grab it, as long as it isn't in someone's personal space. If there isn't a free one, all I have to do is ask for that one. There are usually several pumps floating around and you just grab one, and clean it. The nurse showed me how to do that. She also showed me where the privacy screens are. I feel like a pro at this pumping business. Thank god this isn't my first! Everything is hands on. I bring the milk, I put it in the fridge, I label it, I take what bottles I need, I take what pump stuff I need (tubing/flanges/etc).

After I pumped, we made a 15 cc bottle for Maura and she took it. We added another 10 CCs to it, and she consumed that too. The plan for the day only stated to do 20 CCs each feeding. The nurse figured it doesn't hurt if she'll take more... She took all 25 CCs from Joe. It was the most amount of milk she had taken YET! She took it from us, with our coaxing, tickling her toes, talking to her, getting her to latch. That's what we want to see!

So today brought spectacular news. The only thing going in her IV is fluids right now. She's getting ONLY breastmilk NOT formula. She is showing NO signs of seizures at all. Let's hope all of this continues!

We'll head back tomorrow for longer than today.


On our way home, we saw a double rainbow over 295. Today really doesn't get much better!