Well, we made it home from our neuro check in Salt Lake. I wish I could say that we got awesome news. However, the neurosurgeon said that Bella's ventricles are slightly larger. So we have to go back in 6 weeks for a reevaluation. If her vents have gotten larger again, they will do an MRI and then decide if we redo the ETV (endoscopic third ventriculostomy) or put in a shunt. I still am praying that she will be able to avoid a permanent shunt but I am also preparing myself that a shunt could be the option we go with, that it might be the best for Bella.
We also saw her eye doctor because she is very cross eyed. She basically said that Bella has vision but she can't say how much Bella sees. The doctor said that Bella will have some visual impairment. We are suppose to go back in 6 months for another check up. However, Matt and I feel that a second opinion is a valid thing so we are going to see a doctor in Salt Lake when we go back in 6 weeks for a neuro check.
We will also be seeing an eye therapist next week. I am not sure what to expect from this visit but I am excited for someone to take a proactive approach in helping Bella with her vision. Our therapist speaks highly of this eye specialist so I will update you next week on how it goes.
Bella still isn't gaining weight great and that is a daily stress for me. And with the news about the cerebral palsy, her hydrocephalus getting worse, her eyes, and the eating, it is safe to say I am a mess pretty much all the time. Someone forgot to tell Bella that we left the NICU and it was ok if she wanted to exit the rollercoaster. I have said it before but it warrants saying it again: It shouldn't be called the NICU rollercoaster ride it should be the preemie rollercoaster. Just because you leave the hospital doesn't mean they let you off the vomit inducing ride that no one really wanted on in the first place. That doesn't mean that I don't want and love Bella and will want and love her no matter what the future holds. BUT if I had had my way, she would have cooked for an extra 4 months.
We have been approved for the synagis (RSV) shots, thank goodness. Bella should be getting her first one sometime this month.
Our prayers are that she will gain some good weight and that her head....well, that God's will be done with her head. And that no matter what happens we will have peace, knowing that it is in His hands.
Bella is here and happy. She smiles and coos and knows that we love her. Thank you all for your love and support. We are so grateful!
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