Kailtin's continuing journey

Before birth, sometime early in pregnancy Kaitline had something cause trauma to her brain. We aren't sure how or what caused it, neither are the docs. The abnormal part to all of this is that she is showing signs of this issue now and it usually isn't there until after birth (hers was there before birth) The issue: Leukomalacia which basically means--that there is a spot in her brain that is dead. The spot is in a small frontal portion of her brain. The issues that come along with this can range. The doc to me made it sound like it was small and that we shouldn't expect the worse but Jason got a different feel so we aren't sure what to expect. The minimum will be some developmental concerns that affect motor and/or intellectual abilities. On the other side of the coin we might be looking at cerebral palsy. Which from what I can gather on the internet means she could have spastic diplegia which could cause her some issues with walking, but she would still be able to walk. The worse case with the cerebral palsy could be quadriplegia which would render her arms and legs useless or difficult to use. So we are bracing ourselves for the worst but hoping for the best.

There is another issue with her brain however (poor girl I know) She has grade 2 bleeding on a part of her brain (which is common with preemies), however the location is the concern. It looked to the docs that she might be collecting spinal fluid above the bleed and if that is the case she will need surgery to fix it, however they are giving it time to see if it corrects itself. It's not emergent, the collection is happening slowly and will con't to do so, so they have time to wait. They say the surgery is unlikely. The are going to repeat an ultrasound in 14 days to see how the spot is doing.

SOME good news is that the hole in her heart didn't close after birth like it should have, BUT they caught it in time and corrected it with medicine (indocine)...if the medicine hadn't of worked she would have needed heart surgery, so that is one surgery she won't need to go through.

The doc did warn us that because she has so many surgeries, etc to be prepared that she will probably get an infection at some point which could cause a series of other problems...I do hope that that won't be the case.

She also has been taken off the dopamine, which was being used to stabilize her blood pressure. She also breathes room air most of the time, although she will keep her tube in until she is through all of her surgeries...

They are going to do genetic testing on her to see if all of her problems are related. It's a simple blood draw to do the testing so we gave the okay because some answer to all of this would be nice instead of hearing about how everything is unknown as to why...

Kaitlin will also be helping out future preemies, she is going to be a guinea pig for a new blood pressure cuff. Right now she has an internal monitor for her blood pressure but the company who made the internal thinks they now have an external that has the same accuracy, so they are going to check her both ways and compare. She already is used to having a cuff on twice a day so they are just going to work in the new cuff with her normal daily activities...

phew...enough for now :)

I know some of you mention coming to visit, as far as visiting Kaitlin i'm afraid only parents and grandparents are allowed in the NICU right now to see her. I don't know if that will change but they want to keep her quiet and sleeping as much as possible so she can heal more quickly.