I have been slacking quite a bit on this blogging thing! I finally heard back from Oakley's doctor! (On April 9th.) The autopsy didn't show anything out of the ordinary so they sent her brain biopsy to Colorado to do further testing on the neurons of the cells to get further explanation as to why the cells weren't communicating the way they were supposed to be. They think that she had Othahara Syndrome AKA Early Infantile Epileptic Encephalopathy. (google it! lol) Although they aren't 100% sure that, that, is what she had, she showed EVERY symptom except for the fact that her brain was perfectly structured. For so long I have wondered how long she would have lived if we wouldn't have taken her off life support. I had a hard time feeling ok with the fact that we wanted to do that without ever asking the question, "What if?" After finding out she may have had OS, I feel so much better about her passing away. Anyone born with OS, does not live a very long life and if they do live, even for a little while, they are kept on anti-seizure medication and steroids to keep them pain free. I did not want a life like that for Oakley and I am so grateful to know that she is up in Heaven, dancing and running around, happy and healthy!
They said it could still be another 4 months before we get results back from the testing being done in Colorado. At first Nick and I were REALLY skeptical about having another baby, knowing this is what may have been wrong with Oakley. They use to say that there were no genes connected to OS, but have since found that there are over 60 genes associated with this syndrome. We could NOT handle the pain of going through that ever again. We discussed adoption and also in vitro. But my heart just hasn't felt right about either one of those, and it may be because its too soon, I don't know. I just have a feeling that we are going to have another baby, they same way we had Oakley! Nick is still REALLY scared and would just rather adopt so we don't have to go through anything again but I have told him that adoption isn't always a walk in the park, and it may be 5-7 years before we even would get a baby.
I went to my family doctor who diagnosed me with PCOS (polycystic ovary syndrome) to talk to him about getting back on the medication I was on to help my hormones level so it wouldn't be so hard to get pregnant so if we did decide to have another baby, my ovaries would be healthy. I talked with my OBGYN and he told me he didn't think I needed to be on it, because I did get pregnant. Well I ruptured a cyst a few weeks ago so I decided to go talk to my family doctor. He told me that it would make feel so much better if I was taking it, so he put me back on it!
We talked with him about our situation with Oakley and how scared we are to have another baby and he told us that he would bet 1 million dollars that what happened with Oakley, would not happen again!!! He explained to us that there are SO MANY chromosomes that have to line up just right for that to happen, and most of the time it is not genetic.
After we met with him, we have been feeling very hopeful! Like I said before, I feel like we are going to have another baby just as we had Oakley, and everything will be just fine! We are still going to have testing done, and make sure we have ALL of Oakley's results back before we try again. Right now, we are putting our faith in the Lord and praying that all will work out!
