Ashe Background

Ashe Background

Wednesday, December 30, 2009

Big Day

The thing in her nose is a feeding tube. She gets every other feeding through it because she starts to get too tired when she has to use all of her strength to drink out of a bottle. Sometimes it takes her 10 minutes to down a bottle and then other times she has the hardest time staying awake.

On Tuesday Eric and I meet with the Neurologist, Neurosurgeon and the Pediatric NICU doctor. Eric and I were extremely nervous about meeting with these doctors but it had to be done. Especially since we have been getting different diagnosis/prognosis from all of them. It helped having them in the same room where they were able to discuss her issues and basically add their expertise. We were shown the actual MRI pictures, the fetal MRI pictures that were taken while she was in my stomach and the ultrasound pictures. Now I first have to explain that from the very beginning we have been given a 50/50 chance and the majority of our questions are answered with "We just don't know". From the images that they showed us we can see the sides of the brain and then the middle area were the fluid filled ventricles are. As I stated before, the Neurosurgeon didn't seem too keen on putting a shunt in and was able to explain his reason with the MRI images. He is basically stuck in the middle on whether to place the shunt in. First, we can tell there is too much fluid and that there is tension in the brain so a shunt is probably needed but on the other hand he doesn't think there is enough tension which leads him to conclude that this is the worst it is going to get and a shunt which is known to fail a lot will lead to unnecessary surgeries in the future. However, he has shown us that a part of her brain is missing on the MRI but appears to be on the prenatal MRI. He thinks it is due to the fluid pushing it out of the way which makes a shunt a good idea. He had asked two other neurosurgeons to weigh on it and one was all for the shunt and the other said to hold off until it looks like the fluid is increasing.

We were disappointed because we thought the doctors would of had a clear plan on what to do and which plan had the best outcome for Lexie. However, we were told that WE would be the ones to decide on whether to get the shunt with the majority of our questions being answered with "We just don't know". Eric and I have been going back and forth about this and we have weighed each option to basically find the lesser evil. You have no idea how hard it was for us to come to a decision not being sure if it is the best decision. It is agonizing seeing how this is our daughters life and the horrible feeling that we will endure if we happen to pick the wrong option. I deeply believe in my gut that we are choosing the best option for her and one that we can live with. Years down the road, I know we will always question what her life would of been like if we would of placed a shunt in her. Therefore, our little girl will be having surgery tomorrow where a shunt will placed in her teeny tiny head. We pray that we have made the best decision for her and only hope that she agrees with us. We know that Lexie will in no way be a "normal" child with a "normal" life. We are prepared for any mental/physical disabilities she may have no matter how sever they may be but are just thankful that we get to enjoy each day with her hoping for the best. Because as you can tell from her pictures she is just too cute to resist!

1 comment:

katieowens said...

Destiny & Family,
You guys have been through so much already! What a hard decision to have to make but you are doing what's best for your beautiful little girl. Praying that she comes home soon!!!If you need anything, please call. I would be happy to have the kids come over if you need it.