Gisele seems to be in less pain lately. She's had lots of calm awake time so it's been really nice being able to visit with her and not needing to console her the whole time she's awake. When I was outside her door earlier, trying to let her sleep, I saw flailing arms and feet and when I went in all she wanted was attention. She hears me talking outside and it's like she's saying, "Excuse me, I'm right here!!!" Lol. It's nice to see her acting like a normal baby. :)
    She might be going to the CPAP ventilator today and if she does I'll be able to hold her again. We haven't held her since the first week of March. I'm really looking forward to it.
    An MRI was done on Monday to make sure her brain was in good condition and could manage the functions of her body should she undergo another operation. Dr. Ahmad was happy with the results. He said the brain size is fairly decent, with "minimal loss" around the outer edges. He said he could barely tell there is any loss at all. He said despite everything (that has happened and is happening) her brain appears to be growing at a good rate. With the areas that got damaged he said he does not see a big loss. He also commented today that she looks very alert and seems in good mental condition.
    An MRV was also done to check the blood flow in the brain and it's good. Hematology stopped by today and said the clots are no longer problematic.
    Dr. Ahmad has assured us that he's doing everything he can to make sure he finds out what is causing the Chylo so it can be effectively treated. The challenge is that it's a rare condition with many possible causes. The team has already tried all conventional treatments and has gone as far as surgery with obviously no success. It's correct to say we're in uncharted territory. There's not adequate research/studies/information on how to stop the Chylo at this point. He is reaching out to specialists that might offer different ideas about what it could be caused from due to the niche they work in. She had a high resolution CT scan today to check for one possibility. I'm sure there are other exams that will come along in the future.

The steroid has helped make her need for respiratory support go down. She needed quite a lot of support. There are generally four kinds of respiratory support machines in NICUs, and lately she has been on the highest level called an Oscilator. Today she was put on the regular Vent. We're all very happy about her progress! 

My misunderstanding was about the purpose of the steroid. They think the drug will help her lungs further develop and improve, but it's not also intended to directly heal the Chylo. After less than 24 hours she showed a very encouraging response to the steroids. They said that it's possible that removing the stress on her body of having respiratory difficulty could allow her body to use that energy to resolve the Chylo. So it could be an indirect benefit. There is not research stating that's been a direct healer of Chylo, but it could give her the upper hand in healing. Hopefully in a few days she'll be able to graduate to the CPAP which means no annoying tube down her throat.


To Dr. Ahmad, and all her doctors: Thank you so much for everything you do for our little one. You guys are truly amazing and we really appreciate you guys!

Her doctors want to try steroids because they believe it's possible her lungs are underdeveloped in some way that is causing the output. They're going to start as soon as possible. Today or tomorrow.  Small chance it might not work but it sounds very promising. It'll be a ten day course so we'll see what happens. I'm excited about the possibilities.