One Week Old - Finally Full Term!
Today was a good day here at CHOP! Maura is scheduled for an MRI at 6. It's all about timing. She has to be fed before she goes down. They papoose her up and hope they don't have to sedate her. Hopefully, they'll get all the information they need and can do it all without sedation.
They've got her phenobarbital levels where they want them and she hasn't had any more seizures since yesterday at around 7pm. I'm not sure what measurement exactly we are talking, but she came in on a phenobarb level of 30 originally. It made her VERY groggy, so they took her off it. Then as it worked its way out of her system, the seizures returned. So they put her on a very small dose, less than 10, and it didn't work, more seizures. So when I called last night, they told me she was going to be getting more than she started with, I was disappointed. The 30 made her very groggy, what would a level between 40-50 do?!
As soon as we got there this morning, we saw one of the neurology residents we met over the weekend. He explained that babies get accustomed to the levels of phenobarb and become less groggy. That was a bit of a relief. We did see that today as well. She was more active, doing the things normal babies do, stretching out, scrunching up, snuggling into her little papoose thing. It was really spectacular to see her being a regular baby!
I think I mentioned it before, but we are also doing something called mouth care. Basically, I get to swab breastmilk in her mouth, on her lips, and inside her cheeks so she gets a taste for it as she is currently only taking milk by feeding tube until they are absolutely sure they have the right level of phenobarb. She responds really well to it! We got a decent amount of awake time this afternoon where she just looked at us and rooted for milk. She'd get that happy milky smile when she tasted the milk and she'd react warmly to our touch. It's really great!
We didn't get off to a good start. My ipod is currently missing. We were about to go across the Walt Whitman Bridge when I looked down at my feet and saw that the ipod cord was literally hanging out the door :/ Joe pulled over, but of course, the ipod was NOT hanging out of the door It's JUST an ipod. We won't die without the ipod. It isn't the end of the world. Maybe it will show up. But when we got to CHOP, I walked up the stairs, and realized, I completely forgot ALL of Maura's milk that I pumped last night. 8 oz...approximately 5 feedings for her tonight, sitting in my fridge. I cried. Thankfully, I've already built up a days storage in the milk freezer there (in addition to a bottle and a half in the milk fridge there) as well as the 6 oz I pumped while I was there...so 4 feedings for a total of 5 non frozen feedings for the day (if that makes sense) and if they needed more reserve, they could pull from the freezer, which they may not even need to do! Tomorrow, she'll have a GREAT stash of milk!
We'll also be finding out the results of that MRI most likely tomorrow. Chances are they won't be reading it tonight as she goes at 6 (though they could!) and they generally like to say 24 hours. Hopefully quicker!
So this is a big test. We are praying that they find nothing at all wrong in her brain! Please keep her in your thoughts and prayers as she is probably there right now!
They've got her phenobarbital levels where they want them and she hasn't had any more seizures since yesterday at around 7pm. I'm not sure what measurement exactly we are talking, but she came in on a phenobarb level of 30 originally. It made her VERY groggy, so they took her off it. Then as it worked its way out of her system, the seizures returned. So they put her on a very small dose, less than 10, and it didn't work, more seizures. So when I called last night, they told me she was going to be getting more than she started with, I was disappointed. The 30 made her very groggy, what would a level between 40-50 do?!
As soon as we got there this morning, we saw one of the neurology residents we met over the weekend. He explained that babies get accustomed to the levels of phenobarb and become less groggy. That was a bit of a relief. We did see that today as well. She was more active, doing the things normal babies do, stretching out, scrunching up, snuggling into her little papoose thing. It was really spectacular to see her being a regular baby!
I think I mentioned it before, but we are also doing something called mouth care. Basically, I get to swab breastmilk in her mouth, on her lips, and inside her cheeks so she gets a taste for it as she is currently only taking milk by feeding tube until they are absolutely sure they have the right level of phenobarb. She responds really well to it! We got a decent amount of awake time this afternoon where she just looked at us and rooted for milk. She'd get that happy milky smile when she tasted the milk and she'd react warmly to our touch. It's really great!
We didn't get off to a good start. My ipod is currently missing. We were about to go across the Walt Whitman Bridge when I looked down at my feet and saw that the ipod cord was literally hanging out the door :/ Joe pulled over, but of course, the ipod was NOT hanging out of the door It's JUST an ipod. We won't die without the ipod. It isn't the end of the world. Maybe it will show up. But when we got to CHOP, I walked up the stairs, and realized, I completely forgot ALL of Maura's milk that I pumped last night. 8 oz...approximately 5 feedings for her tonight, sitting in my fridge. I cried. Thankfully, I've already built up a days storage in the milk freezer there (in addition to a bottle and a half in the milk fridge there) as well as the 6 oz I pumped while I was there...so 4 feedings for a total of 5 non frozen feedings for the day (if that makes sense) and if they needed more reserve, they could pull from the freezer, which they may not even need to do! Tomorrow, she'll have a GREAT stash of milk!
We'll also be finding out the results of that MRI most likely tomorrow. Chances are they won't be reading it tonight as she goes at 6 (though they could!) and they generally like to say 24 hours. Hopefully quicker!
So this is a big test. We are praying that they find nothing at all wrong in her brain! Please keep her in your thoughts and prayers as she is probably there right now!
Labels: Maura Fern, NICU
posted by Caroline at
10:33 PM
1 Comments:
What a precious little girl!
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