Kathryn is looking much better today, and we expect to be sending out pictures soon. We've held off in hopes that her appearance would improve, and today that was indeed the case. She's still severely bruised, but her head is less malformed than it was previously. Even the neonatologist was very surprised when he saw her this morning. That's great news coming from a specialist who sees things like this every day. He knows what normal molding looks like, and knew right away her head wasn't right. Keep up the prayers, they're certainly working!
We also learned from the neonatologist that Kathryn's ultrasound on February third also showed excess fluid around her heart. Robyn and I don't remember hearing anything about this before today, and it was the beginning of a long down-swing this afternoon.
We had hoped to learn the results of the MRI today as well, but it's looking less likely as the day moves on. We learned from the neurologist this afternoon that the MRI returned at least one new finding however. They weren't looking for this, but the MRI showed something wrong with the white matter in her brain, and they think specifically it might interfere with the development of her myelin. The short story is that she's very likely to have problems getting messages from the grey matter (thinking part) of her brain to the rest of her body. After consulting with colleagues she was only able to come up with two possible causes for her specific condition, which she mentioned are extremely rare, but didn't want to share them with me until she could narrow it down to one. "Google is not your friend" is what she told us. This is also what we've heard from the Randolphs who, as many of you know, are aware of this first hand. She said they're going to run chromosomal tests specifically for these two conditions and get back to us. In addition, she ordered an EEG which was conducted at 2:30 this afternoon.
So we learned that in addition to everything else, she may or may not have a heart condition and we continue to wait for the MRI, and now EEG, and more genetic tests.
Her feeding has gone pretty well, but because of the size and shape of her mouth, she isn't getting enough colostrum down, so we've added formula to the mix.
We've also had several visitors today, including a few of our caretakers here at Kaiser who are Christians and stopped in to pray with us and offer us encouragement. One of Robyn's delivery doctors who prayed with us also said that since Kathryn is in NICU and might be released to us tomorrow, he can keep Robyn as a patient here for one more day so we can stay close and continue to breast feed. What a blessing this is! Whether or not Kathryn is actually released from the NICU will depend largely on whether or not she can reverse her weight loss. The neurologist said that, because of her condition, she doesn't want to let Kathryn get too far until she's sure Kathryn is completely stable—more so than most otherwise healthy infants need to be.
Your prayers are working, and we've been blessed to see God working such miracles firsthand.
Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter
We also learned from the neonatologist that Kathryn's ultrasound on February third also showed excess fluid around her heart. Robyn and I don't remember hearing anything about this before today, and it was the beginning of a long down-swing this afternoon.
We had hoped to learn the results of the MRI today as well, but it's looking less likely as the day moves on. We learned from the neurologist this afternoon that the MRI returned at least one new finding however. They weren't looking for this, but the MRI showed something wrong with the white matter in her brain, and they think specifically it might interfere with the development of her myelin. The short story is that she's very likely to have problems getting messages from the grey matter (thinking part) of her brain to the rest of her body. After consulting with colleagues she was only able to come up with two possible causes for her specific condition, which she mentioned are extremely rare, but didn't want to share them with me until she could narrow it down to one. "Google is not your friend" is what she told us. This is also what we've heard from the Randolphs who, as many of you know, are aware of this first hand. She said they're going to run chromosomal tests specifically for these two conditions and get back to us. In addition, she ordered an EEG which was conducted at 2:30 this afternoon.
So we learned that in addition to everything else, she may or may not have a heart condition and we continue to wait for the MRI, and now EEG, and more genetic tests.
Her feeding has gone pretty well, but because of the size and shape of her mouth, she isn't getting enough colostrum down, so we've added formula to the mix.
We've also had several visitors today, including a few of our caretakers here at Kaiser who are Christians and stopped in to pray with us and offer us encouragement. One of Robyn's delivery doctors who prayed with us also said that since Kathryn is in NICU and might be released to us tomorrow, he can keep Robyn as a patient here for one more day so we can stay close and continue to breast feed. What a blessing this is! Whether or not Kathryn is actually released from the NICU will depend largely on whether or not she can reverse her weight loss. The neurologist said that, because of her condition, she doesn't want to let Kathryn get too far until she's sure Kathryn is completely stable—more so than most otherwise healthy infants need to be.
Your prayers are working, and we've been blessed to see God working such miracles firsthand.
Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter
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