Today has been one of the most difficult days, Gemma ended up having a bit of a relapse, her vitals were quite high today and her body started swelling. Gemma has edema (fluid retension) and she has been quite unresponsive since yesterday. I started listing my concerns yesterday but the nurse wouldn't listened to me, I tracked down a few doctors today to tell them that I was really concerned, they didn't really know what to tell me so I finally had a neonatologist (head doctor) come over and realize my concerns (which proved to be right - mothers know best!) and he is worried that she has an infection and wants to start antibiotics right away. They did a chest x-ray to find out that she had fluid building outside of her lungs and had to put in other chest drains (just as she had finished healing from her previous drains from pneumothorax). Gemma has minimal urine output because of the edema so they have given her diuretics. They are doing a lot of testing with her lung fluid, blood and urine to see if they can find some answers. They might have to insert another IV line (PICC) into her arm or scalp and put her on other fluids for a while. They have stopped her feeds and are giving her TPN.
Tonight her heart rate and temperature are really high so we are trying to let her rest. They have increased her morphine dose and ventilator settings again for her to be comfortable.
Just when we think we have taken a step forward we end up going a few steps back.
Today has been extremely emotionally draining and stressful. It is so hard to see her suffering and not have any control over the situation. It is such a helpless feeling but she is such a tough little girl.
Thank you for your thoughts and prayers,
Love Amanda, Charlie & baby Gem
Love Amanda, Charlie & baby Gem
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