Z transfers to Scottish Rite

July 12th Z was transferred to Scottish - it did not start off very well at all. She did not like being taken from my arms which she had just settled into for a nap and then she did not appreciate being strapped down to the stretcher. She became quite irritated which made her clamp down thereby restricting her airway - she couldn't breathe which made her more mad. Richard and I tried to calm her and soothe her as we watched her rosy lips and skin turn a terrifying shade of deep purple. She broke out into a terrible sweat with beads collecting around her eyes and on her upper lip as she wailed and wailed, her hair quickly became plastered against her head all the while Richard and I desperately looking to her nurse and the transport team to DO something!!! She has had fits before, but never fits that made her this color for this long. The transport team checked her pulse ox which read between 23 and 43 (not good AT ALL), they changed the pulse ox, hooked it up to her wall monitor, hooked it up to the transport monitor, gave her a respiratory tretament (which she hates) and still her lips stayed the color of a ripe eggplant. Her beathe sound was markedly different, she usually sounds a little rapsy and wheezy - but this was a desperate need for air, she just was not pulling air in. Her nurse got on the phone to get an order from the doc for sedation, thinking that it was her fit that was causing her such distress. A member of the transport team unhooked her oxygen tank and hooked her up to her wall O2 and an instant rush of O2 startled her and suddenly she was pink and in a matter of moments she was calm. SHE NEEDED OXYGEN!!! Apparently her O2 tank had not been dialed correctly and she was only getting a tiny fraction of the support she needed. The whole ordeal lasted at least ten minutes and reminded me just how fragile she is.

Soon she was calm, sucking on her paci and holdng my hand as we started down the cooridor. She seemed to really like the ride on the stretcher and she got to feel the hot Atlanta air for the first time. I climbed into the back of the ambulance - they normally don't let parents ride back there but I think her previou purple shade had the transport team just a tad nervous. She did great on the ride over, just sucking away on her paci, squeezing my finger, and staring at the lights on the ceiling of the truck. We hit a bump as he pulled up to the hospital which caused her to cough, then reflux, then spit up. She recovered quickly and we wound our way through the hospital hallways until we came to the NICU. Northside has become our second home after nearly 7 months in residence so entering this new hospital was like stepping off into another country. The language is the same, but the accent is different - the docs are different, the nurses and RTs are different, the policies are different - the crib and the scale and monitors all look like outs, but they aren't the same.

The admitting nurse began asking the transport nurse questions about Z which I answered out of habit. I knew the answers and didn't have to look them up. I was so nervous about Z being there where they don't know her. at Northside even nurses who haven't taken care of her previously know all about her, her likes, her dislikes, her fits and how to help her. So...I had to fill in the gaps and be her voice. Not that she hadn't already told the transport team quite a lot about herself...Her primary nurse at Northside wrote out a page long synopsis all about little Z so they would know about her tendencies and preferences which thankfully the admitting nurse was receptive to. Z did much better with the transfer from stretcher to scale to crib. She only got a tad fussy but quieted and fell asleep.

About an hour later the anesthesiologist came in to review her chart and write orders for tomorrow. Z was fast asleep and the anesthesiologist grabbed the stethescope to take a listen and woke Z up when the cold metal touched her bare chest. Z, like her mother, does not like to be awakened unnecessarily and she got fighting mad. I asked if I could pick her up and I did. I tucked her into the crook of my arm, got her paci in her mouth and she settled back to sleep. As I sat and rocked her it finally dawned on me - I DO know this baby, MY child. All this time I've been worried that her nurses know more about her than I do and that I'll need an instruction manual from them when she comes home because I'm not there with her every single day like I used to be. I'm constantly being brought back to that day when she was in Pod E before moving to the Garden when she had a fit and a new nurse who had taken over mid-way through the shift asked me what she liked, what calmed her? At that time we couldn't even touch her so I couldn't answer - that hurt my heart so deeply that I did not know how to calm my child. But now I can! I won't need a Z manual - I am her mother and for the evry first time in months I finally felt like it. I knew more about her, I knew what to do, I knew the date of her PDA surgery, the date she was extubated then reintubated and then extubated again. I knew when her last infection was and what they treated it with, I knew how many blood transfusions she's had and that she hates her breathing treatments, dirty diapers, and getting hot. I knew all these details in my head because I AM her mother and it is my job to protect her and nurture her and love her. And...I DO know how to do this for her.

At Northside she is so closely attended to by her nurses (thank goodness) that I am often quick to turn her over to them when she has fit thinking that she will be soothed quicker by them and feeling insecure about my abilities to help her. But here at Scottish I was needed to calm her because they didn't know how and I did!

It is very difficult to feel like a parent when your child is in the NICU. You often have to ask permission to be with and to do things for your child which is not a natural way of parenting. I've said in the past that I often feel like the hospital lets me borrow her from time to time but that she isn't really mine. This whole experience really calls into question "how do you define a parent when you don't have the traditional 'formula' to follow?" I've struggled with this on many levels because I had a picture in my mind of how this was all going to go - how I would have these perfect, fat round, almost term babies who would just have to stay in the hospital for a couple weeks and then come home and take their bottles and cry and sleep and I would rock them and sing to them and they would look at me with adoration in their eyes and I would be sleep deprived but it would be wonderful. We all know this is not how things worked out for us but as Richard and I looked at our little warrior princess today, we wouldn't trade it for anything.