Today is Saturday, March 6th and Gemma is 16 days old.
It has been a difficult couple of weeks. Gemma developed chylothorax and has chest tubes in to drain the fluid (just as she was healing from the last set of drains from pneumothorax). The fluid is still draining and we hope to have the tubes out in the next week and hopefully her condition will heal quickly.
They stopped her feeds because the fat in the milk was causing this condition to worsen and when the drains are out Gemma will probably need to go on a special formula.
Gemma also has edema quite badly, so as you can see by the pictures she has retained a lot of fluid and became very swollen. They shaved one side of her head to try and insert a PICC line (an alternate IV line as the belly button line had to come out after she was unable to continue with feeds), however that line didn't work so they shaved the other side of her head (giving her a mohawk) but unfortunately the PICC line was unsuccessful so they ended up putting the line in her arm.
Gemma's Albumin levels lowered so they inserted a peripheral line into the centre of her forehead. They removed the arterial line in her leg but had to replace it in her other arm, so at the moment we aren't really able to hold her arms which is hard for us because it is one of our only means to give her comfort.
Gemma's urine output is a bit better and they have given her another diuretic to assist with her Edema, so hopefully her swelling will come down. She is still on morphine for her pain but perhaps in the next week once her tubes are removed and her femur's are healed then we can discontinue it.
Gemma's vitals have been fairly stable and she has been moving her hands the last few days but hasn't opened her eyes (which is probably from the swelling).
It is absolutely amazing what this little girl has gone through and how strong she is.
Thank you for all of your positive thoughts, prayers and support.
Love Amanda, Charlie & baby Gem
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