Maura's Mother's Day
Well, Maura backpedalled a bit today. At around 9am, she had a seizure. They are absolutely sure it was a seizure because they saw it on the EEG, in particular, in the right frontal lobe of her brain. Before this, they weren't seeing anything at all, and were near about to take her off the EEG and send her on home! On one hand, I'm sad that she did it, but I'm also glad because it means that anything that happened over at Virtua WAS seizure activity and it CAN be controlled.
They put her on phenobarbital again. They lowered the dose significantly so that she isn't so sleepy and will eat. When we got here, the nurse was about to feed her but was using a regular nipple and not a NUK and I requested the NUK, and she had a minor incident with her oxygen sats dropping and all of a sudden they wanted to monitor her feeding and wait a few hours before trying again. They also wanted to limit her actual feeding to a nurse just to monitor it. It could have been as simple as milk going down the wrong way or something else.
While we were there, two neurologists came to see us. As they've been monitoring her since Friday and had not seen anything, they weren't so sure there was any problem, until this morning. They explained that this is not something that causes long term issues. They may put her on phenobarbital and send her home and recheck it in a few weeks.
Right now, they want to run the MRI, which has been pushed back a bit. Perhaps tomorrow night or on Tuesday they'll do it. They want to continue to run the EEG 24 hours past any seizure behavior.
They may never find anything. It may be just that she's not done cooking yet and needs to have phenobarbital for a few weeks to let her brain continue to develop.
As I finished pumping, I was told that I can do something called mouth care, where I swab breastmilk on her lips and her tongue and her gums and she was rooting. She was looking good and the nurse said she could start feeding her earlier than they were going to. She said I could change her and take her temperature and get things going so that she could feed her. Well, I changed her, and she had another seizure. This one was very much like one of the seizures I saw over at Virtua. She had a very rhythmic cry and tensed up before falling into a gaze. They called neurology right away to take a look at it so they could assess it and they'll get her pheno level and report back and adjust it.
Unfortunately, they didn't like what they saw and are worried that if they were to feed her without the correct level of phenobarbital, she could have a seizure mid feeding and then aspirate breast milk into her lungs. This earned her an NG tube! Basically, it's a tube that goes into her nose to feed her so that she can have breastmilk. This allows her also to expend less energy to eat, but still get the necessary nutrients that she can only get from breastmilk. They HIGHLY encourage it.
While it seems like she's backpedaled a lot, which she has, it isn't all bad. Having the seizure proves that the other episodes were definitely seizures. For now, they'll put her on meds, find a good level to control them, and see in a few weeks how she is (after she comes home, not a few weeks in the hospital here at CHOP) She has also gained weight. She was down to 5 lb 5 oz and today she was up to 6 lbs 2 oz. She is no longer under the bililights. She is also "waking up". We've seen her move more than ever before today AND we've seen her with her eyes open a lot. She's also shown quite a bit of normal newborn fussies. These are good signs. This is what we want to see...
So for now, we just manage and see what she does on the EEG and the MRI in the next two days. If they find nothing (fingers crossed), they'll find her a good level of phenobarbital and she will probably come home.
Oh and Maura gave me a mother's day present! Some footprints! Arts and Crafts right here in the N/IICU here at CHOP too! Boy do we feel lucky!
They put her on phenobarbital again. They lowered the dose significantly so that she isn't so sleepy and will eat. When we got here, the nurse was about to feed her but was using a regular nipple and not a NUK and I requested the NUK, and she had a minor incident with her oxygen sats dropping and all of a sudden they wanted to monitor her feeding and wait a few hours before trying again. They also wanted to limit her actual feeding to a nurse just to monitor it. It could have been as simple as milk going down the wrong way or something else.
While we were there, two neurologists came to see us. As they've been monitoring her since Friday and had not seen anything, they weren't so sure there was any problem, until this morning. They explained that this is not something that causes long term issues. They may put her on phenobarbital and send her home and recheck it in a few weeks.
Right now, they want to run the MRI, which has been pushed back a bit. Perhaps tomorrow night or on Tuesday they'll do it. They want to continue to run the EEG 24 hours past any seizure behavior.
They may never find anything. It may be just that she's not done cooking yet and needs to have phenobarbital for a few weeks to let her brain continue to develop.
As I finished pumping, I was told that I can do something called mouth care, where I swab breastmilk on her lips and her tongue and her gums and she was rooting. She was looking good and the nurse said she could start feeding her earlier than they were going to. She said I could change her and take her temperature and get things going so that she could feed her. Well, I changed her, and she had another seizure. This one was very much like one of the seizures I saw over at Virtua. She had a very rhythmic cry and tensed up before falling into a gaze. They called neurology right away to take a look at it so they could assess it and they'll get her pheno level and report back and adjust it.
Unfortunately, they didn't like what they saw and are worried that if they were to feed her without the correct level of phenobarbital, she could have a seizure mid feeding and then aspirate breast milk into her lungs. This earned her an NG tube! Basically, it's a tube that goes into her nose to feed her so that she can have breastmilk. This allows her also to expend less energy to eat, but still get the necessary nutrients that she can only get from breastmilk. They HIGHLY encourage it.
While it seems like she's backpedaled a lot, which she has, it isn't all bad. Having the seizure proves that the other episodes were definitely seizures. For now, they'll put her on meds, find a good level to control them, and see in a few weeks how she is (after she comes home, not a few weeks in the hospital here at CHOP) She has also gained weight. She was down to 5 lb 5 oz and today she was up to 6 lbs 2 oz. She is no longer under the bililights. She is also "waking up". We've seen her move more than ever before today AND we've seen her with her eyes open a lot. She's also shown quite a bit of normal newborn fussies. These are good signs. This is what we want to see...
So for now, we just manage and see what she does on the EEG and the MRI in the next two days. If they find nothing (fingers crossed), they'll find her a good level of phenobarbital and she will probably come home.
Oh and Maura gave me a mother's day present! Some footprints! Arts and Crafts right here in the N/IICU here at CHOP too! Boy do we feel lucky!
Labels: Maura Fern, NICU
posted by Caroline at
8:43 PM
1 Comments:
Hi! I saw your post at Soule Mama's blog. Just wanted to wish you a very Happy Mother's Day of your precious sweet girl and boy! Prayers and positive energy for a thriving baby girl to bring home soon. Blessings to your family.
~K
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