Baby Emma Update 10.6.09
Extra prayers & notes of encouragement are needed for the Crew Family as they go into what will surely be a tough week ahead. Thanks to Emma's Mom, Sophie for keeping us all updated on her lil angel's recovery. Below is an update from her that she sent over this afternoon:
Day 18. Still here in the PICU. Yesterday was a tough day as we were reminded by the (sweetest and kindest) resident doc who has been with us since day one, that Emma's brain damage is 'extensive'. We're not accepting that. The only thing getting us through every single long hour and day of this nightmare is hope. Yes, sometimes my hope seems to get thrown on the floor but I pick it right up again. We are trying so hard. The docs had to reinsert a new drain and ICP monitor. her 'bolt' has been removed from her skull and a new hole was drilled into the right side of her skull to remove CSF from the ventricles of the brain. Currently the drain is turned off but they would open it if her ICP levels get too high. Ty and I were not happy with this decision but we need to trust that the docs know what they are doing. We just don't want her body to become dependent on dumping CSF rather than reabsorbing it. If this becomes the case, she would need a permanent 'shunt' installed to drain the CSF into her belly - for the rest of her life, every time she falls or gets a fever: Xray. I guess that is just the least of her worries at this point though... 'Emmy' has been moving her left side a lot - we already know that her right side has been affected as it is significantly weaker (left side of brain controls right side of body from neck down). Emmy opened her right eye today for a few minutes - just barely cracked open but enough to put a huge smile on our faces. She did this yesterday for a few minutes and I swear she moved her eye to look at Elmo that I held up for her. Today she didn't move her eye to try to follow us though... praying her vision is not totally gone (Em has Retinal Hemorrhaging). The docs want her to begin 'waking' so they are decreasing her meds little by little and if all goes well, she will be off of the ventilator in a couple of days - if all goes well. It's really 'Two steps forward, one step back' for us. As she wakes, fear and nervousness are setting in.... we pray to God that she has not lost what it is that makes Emma our 'Emmy', our sweet, sneaky, snuggly, funny, intelligent, witty little girl. We miss her eyes - her big sparkly eyes. Those things light up a room... so much that each time I look into her eyes, I want to grab my camera and capture such sparkle. We miss her little dance - all you have to do is start singing Lalalalala... and she starts dancing to Elmo's Song. She loves music - she points to the stereo and gets excited. We miss her new walk... she would take a few steps, look down and smile, and take a few more steps, look down, and keep going... We miss her cuddles - she knew how to cuddle like nobody else. We miss that she greets Pumba (Ty's Wild Boar Head that hangs in our garage) each time we enter the garage door by pointing and saying 'M-ba'. We miss her so much... Please God don't take this away from us. Please continue to pray for our sweet little girl. The next few days are supposed to be 'very uncomfortable' for her as she wakes. Please pray that she awakens completely, painlessly, and with minimal permanent brain damage.
-Sophie & Tyler