I know many of you have been waiting patiently for an update, sorry to keep you waiting, but thank you.....Ive got lots of news, its been a busy day!! I met with the neurologist this morning, he reports that Brinley has had a large stroke on the left side of her brain, which has caused her symptoms and seizures which have been occurring on the right side. They believe the stroke to have happened at some time while I was pregnant (in utero), but have no reasons or causes why. It is not rare but sometimes just happens for some fluke/freak reason. Her symptoms started about 24 hours after birth which is pretty typical for the seizures. She continues to be quite stable at this time but are still in the acute phase of the post stroke. She does move her hands and legs and act fairly normal as a newborn would despite her sleeping all the time with the seizure medication. She requires some occasional oxygen at night but holds well without it through the day. She has had a few seizures but only 1 that was visible. We will continue to monitor these and adjust her medications as appropiate/needed to control the seizures. These may continue short term or life long, or resolve, we just wait and see. There are many unknowns about her long term outlook of physical/cognitive functioning and deficits as only time will tell if she will have some and what they will be. Will know based on mile stones and growth/development. The neurologist will be back in tomorrow to see her and discuss anything further as we need. We met with the neonate doctor then before lunch and discussed her current status and care. She is doing well considering. She is tolerating her tube feedings very well and all other vitals look good. I had to speak up a little with him regarding the continued waiting and unknown over the past 24-36 hours, since her CT was done Tuesday night and the stroke showed on there but no one informed us until this morning with the neurologist. Weve just been waiting for what seems like no progress or changes in plans or her care. Since her labs and vitals have otherwise been normal. With that info shared weve made some great progress today. Brinley has recently gotten her big umbilical IV lines out, her EEG monitor dc/d, and has increased her feedings. She now has a peripheral IV with no fluids at this time. We will continue with vitals and monitoring. She will be getting an MRI of her brain today and an ECHO of her heart. If she tolerates her increased dose of feedings, she may be able to start oral feedings tomorrow or over the weekend. We will get to snuggle her again hopefully tonight which is a HUGE step and exciting for us!! So, we have answers and we are making progress which is great, even if there are still a lot of unknowns and waiting for progress in our future. It may not have been excellent news or diagnosis but we at least know now the cause and can continue to move forward with care, healing, and growth. She will continue in the NICU for the next 1-3 weeks depending on her progress with feedings, oxygen, growth, and overall status. As long as she continues to progress we may be able to move back to Allen or get discharged, all just depends. I will try to keep you updated as much as I know/can! Thank you all so much for your love and support and continued thoughts. Its been quite a difficult 3 days! We can continue to hope and pray for good outcomes, progress, as we can.
Posted on: Thu, 14 Aug 2014 21:01:51 +0000
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