Baby girl Gemma is two months old today (39 weeks corrected) and they are now calling her a 'term baby' (I was due on April 21st). She is 5lbs 7oz and has gained over 2lbs since birth.
Gemma has been through so much in her short life, resesitated at birth, bilateral femur fractures, two cases of Pneumothorax and Chylothorax, quadruple chest drains, morphine for four weeks, three 2hr attempts at PICC (IV) lines with a successful PICC line that was left in for 5 weeks, arterial lines (blood work line), peripheral lines (line for blood products), NG tube for feeding, reintubated (new ventilator tube) and ventilated for almost two months.
Gemma has overcome most of her battles and not only remains strong but continues to grow and show progress. At birth Gemma showed no signs of spontaneous movement and minimal alertness, she was very hypotonic and the consensus is that she has a neurological muscular disorder. An MRI and brain monitor showed 'normal' results, then she was tested for Myotonic Dystrophy and SMA, both came back negative. The EMG (nerve/muscle conduction test) shows that she has a severe nerve/sensory disorder, however they have not yet ordered anymore testing and she remains undiagnosed.
Gemma now has longer periods of being awake, bright eyes that are focusing on objects, moves her arms against gravity and since her femur fractures have healed she is able to have some leg movement. Physiotherapy is very impressed with the work Charlie and I have done to improve her flexibility and range of motion. Gemma is gaining 'real' weight now that her Edema is gone, they have increased her feeds and she is going on EBM within a few weeks!
It is so great to see her without all of her tubes and lines and now that these conditions are behind her, Gemma faces her biggest challenges. There is the uncertainty of her future ventilation and nerve disorder. It is hard to know what she will be capable of, she has an extremely rare condition and it causes everyone a lot of frustration not knowing what to do, what to try or what to expect.
A 'care conference' is being organized for next week where all the specialists involved in her care will meet to discuss her future. It is worrysome as we have heard some very negative opinions but hopefully something positive will come from it and allow for all of us to be on the same page.
At this point we are focusing on all of the positive that Gemma has accomplished and take things day by day.
Love Amanda, Charlie & Gems
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