Gemma is now 10 weeks old and weighs 6lbs 13oz! She is getting big and growing quickly.
There haven't been a lot of changes in the last few weeks. We had a 'care conference' for Gemma that included a large team of specialists that discussed her future care. It was helpful to get everyone on the same page and hear what they had to say. They are going to repeat a few tests and see if there is anything further we can check for. They think her condition is extremely rare and maybe only a handful of reported cases in the world.
There is a lab in Germany that we might be able to send some testing off to. Gemma still remains undiagnosed but they are considering performing a muscle/nerve biopsy in hopes that it will give us more information about her prognosis but it isn't something I want them to do anytime soon because she is still small.
Gemma is on a new mode of ventilation that is allowing her to do most of the work herself, she is doing fairly well on it and hopefully it is one step in the right direction. They are going to try and 'wean' her settings weekly to see how much she can handle and we hope that she will grow stronger and stronger.
Last week Gemma was given the clear with her chest x-ray to start EBM (breastmilk) and formula (which contains a higher long chain fat content that they were worried might cause reaccumilation of her chylothorax condition).
In the last few days she has been having episodes of grimacing and desaturating with her oxygen levels so I was worried that the condition came back but she had an additional x-ray this morning that shows that her lungs are clear, so that is really good. It leaves us puzzled as to what is bothering her but hopefully it is just an adjustment to her food changes.
Gemma graduated from 'yellow' to 'green' on the charting system that basically means that she is 'stable'.
Last week Gemma had a repeat brain ultrasound that shows that the asphxyia she had at birth has caused her to have a condition called PVL which is linked to Cerebral Palsy. We thought that it could be the explanation for her condition because it effects motor skills, however it looks like this is an additional condition to add to her list. Gemma is getting an MRI on Thursday which we hope will be able to tell us more information.
We were also told that she is healing from another small fracture on her upper femur but they are concerned that she may have brittle leg bones that could cause her future problems. It seems like one thing after another but Gemma is proving to be quite strong.
Love Amanda, Charlie & Gemma
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