The Back Story

       I have started this blog because so many people are asking me about Bailey and how she is doing. I only expect this to increase after she is delivered and in the NICU. Its hard for me to physically talk about it all without breaking down so this is the best I can do for now. I will post updates here and anyone who would like to know whats going on can check here.
       Bailey is currently chilling in utero we are 33 weeks along as of today. She was diagnosed with enlarged ventricles at 24 weeks.The problem was on the high side of moderate. A follow up a month later showed an increase in fluid that has her now labeled as severe and diagnosed with Hydrocephalus. There was no evidence of a problem before the 24th week and her anomaly scan showed her to be perfect with the exception of being a little small. Her size was the reason for the follow up where the Hydrocephalus was found. We have had what feels like a million test run and no cause can be found. She has tested negative for any chromosomal issues, we both tested negative for any illness or virus that can cause the problem, she shows no signs or symptoms of Spina-Bifada and they don't think (but cant be sure) that its something like Dandy Walker Syndrome or a Charii Malformation. Right now they are saying its idiopathic and that she may have had a stroke. They of course won't know anything for sure as far as cause or prognosis until she is born and can have an MRI.
      What we do know is that it doesn't look good and she will most likely have to have brain surgery and have a shunt installed very quickly after birth. She is breach and will not be able to turn and her head is to big for a traditional delivery so we are guaranteed a cesarean birth. Immediately following delivery she will have an MRI to try to pinpoint the problem so that treatment can be started quickly. There is a very strong chance of brain damage although the severity can't be know until the fluid levels go down and her head returns to normal size, when she will get more MRIs to try and locate damaged areas. This can take a week or months depending on how bad she is at delivery. We saw a specialist yesterday who told that the prognosis was good as long as her head isn't swollen or misshaped. Unfortunately he had not seen the ultrasounds... Her head is swollen and kinda shaped like a football right now. So that didn't make me feel any better.
     We were able to check out the NICU, its a level IIIc so she will be receiving top of the line care and we really liked that one nurse is assigned to only 2 babies, so she will be watched well. They do not have facilities for me to stay there with her but I am sure I can find a way to nap in the waiting room so I won't have to leave her there alone.
      We are looking at delivering between 37 and 40 weeks. They don't want to deliver early unless they have to because she doesn't need anymore complications to fight against once she is born and because she is still on the small side. I will be pushing for the earliest safe delivery date in order to try and save her brain functions and additional damage.
       We are preparing ourselves for the worst outcomes as far as brain damage and function but we are still praying for a miracle. Please join us in prayer for her if you are so inclined.