He did confirm for us that the baby will need to be transferred to the downtown Children's Hospital at Egleston on either the day she is born or the very next morning. The need for this is based on the current condition of her heart and the skilled team available at Egleston that will be able to stabilize her heart. This is important in order to allow her body to mature until she is at least 6 months of age when she will need her first vascular surgery. Dr. Wrubel will round on our daughter in the hospital and likely order an MRI of her brain before she is discharged home. He and the team of physicians will then decide her future plan of care with the information provided in that MRI. Because the baby will need to be transferred to the Children's hospital downtown and there is no where close for me to deliver near that hospital, Dr. Wrubel suggested I deliver where my OB is because my existing relationship with her is important. He felt confident in the capabilities of our hospital's neonatal team to be able to prep the baby for transfer.
He again reiterated that it is impossible to determine what limitations the baby will have based on the MRI alone but he did feel confident about the fact that her images show no other signs of concern (other concerns could be enlarged head, enlarged ventricles, hydrocephalus or hydrops for examples). He said that yes she is likely to have some deficits but what kind and extent will not be known until she is here, until another MRI can be performed and until she grows and develops. He expressed that she will begin receiving therapeutic care very early on to help combat these issues and described how plastic a baby's brain is. So for example, say the area of the brain that is designed for fine motor skills of the right hand was damaged then the brain can't send the signals to that damaged area of the brain. Plasticity means the baby's brain might start creating whole new pathways to a healthy part of the brain that will be able to control the fine motor skills of the right hand. Therapy will then enhance the development of those new pathways. Finally, he did agree that she is predisposed to a higher risk for seizures based on her confirmed brain damage but he felt that her risk was not considerably higher than that of the general population. So while he couldn't guarantee what condition she'll be in he gave us the sense that she just might come out of this with manageable conditions.
Jan 9, 2015--Today we had a regular follow-up with our high risk doctor and he was pleased with the decision to deliver the baby at our original hospital (the same hospital where I was admitted and Heath works at). He will talk with the other doctors to finalize some delivery details but he would like to aim for week 39 for delivery with continued regular visits to monitor for signs of distress. He will have us meet with the Neonatologist (NICU doctor) to discuss the plan for our baby's arrival and transfer. We were also given the name of the Care Coordinator that will help us start to set our daughter up with therapeutic services and other needed aid. Finally, our regular ultrasound was performed and the doctor noted that the vessels in the brain looked a bit better. That the flow did not seem as high as it had in previous sessions. He warned us that position could be playing a roll in the changes seen today and ultrasounds are not nearly as specific as the MRI but again it was nice to hear the word "better"!!
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| Most recent 3D picture of our sweet girl (that's her foot right in front of her chin) |
So needless to say Heath and I are in higher spirits this week and chalk a lot of this good news up to the constant prayers and love coming from our support team! We love you all!!! Keep the prayers, love and positive thoughts coming our way!
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