The 48 hours from Thursday through Saturday morning were basically one long day. Mary was suffering pretty badly, despite the morphine, her red and white blood cell counts were very low. Her platelets were extremely low, and her liver enzyme levels were still high but going down. With HELLP Syndrome most patients will experience extremely excessive high blood pressure levels. Mary was one of very few that did not. She was what the doctors called a “mystery patient”. Every doctor, and nurse that came in from either NYU or Downtown Women OBGYN kept telling us that Mary was extremely sick. The thing was there were no apparent warning signs until right before she came in, and even then it was not apparent right away what she was suffering from. She was very slow to recover, and she was experiencing excruciating pain in her stomach and back for days and could not release any gas from her body which just made everything ten times more painful.
There was something to laugh about at least. Groups of doctors, nurses and interns would come in and ask, “Did you fart yet?” You really need to pass gas for the pain to start reducing at all. Our friends and family were always gathered around when they would come in. If someone did fart, they certainly couldn’t blame it on Mary, because it just wasn’t happening. They would check Marys stomach, just like I tap on a sheet rock wall, to find a stud. Only they were checking to see if her stomach got softer (which it never did). Anyway, this would go on for several days before anything was dispersed, and the pain for her was really unbearable!
Remy was still, and will remain under constant observation in the NICU for several months. Three phototherapy lights, were being used to prevent the Jaundice, she had already developed, from spreading. There was one underneath her, and two above her. The lights made her look purple and the entire cube glows, reminiscent of those teenage years when I thought black lights in my bedroom with glowing posters on the wall were cool (c’mon, I’m not the only one and you know it). She had to wear a Bili Mask around her head to protect her eyes and brain from the lights, with an additional cover over her eyes, just like in a tanning bed. The ventilator kept her breathing day and night. She would fight the ventilator and breath way too fast, especially when she was touched and stimulated, so not only was it helping her breathe, but also helping to regulate her breathing and create a rhythm.
It’s so hard to see your little baby’s lip pushed up against a plastic tube. She had two tubes for nourishment running into her umbilical cord. Her right arm was braced with a piece of foam to keep her from ripping out the PICC, which her antibiotics would go through. Her feet were always covered with gauze or band-aids, because of the constant pricking of blood. Surely, she was uncomfortable but it was all for the sake of her well-being. There were pads on her chest to monitor her heart rate and breathing, which she would grab and tug at times. Everything is connected to monitors that will set off warning beeps, should any of her vitals peak or drop to levels that were not where we wanted them to be. Sometimes the monitors showed question marks and that would scare me.
She seemed to be okay overall. Once you can come to terms with the fact that she has to have these things done, in order to stay healthy and become stronger, it’s not that difficult to watch. Don’t get me wrong, it’s still my little girl, and I cannot wait for her to be functioning independently, but unique situations such as this one require unique perspectives (which really just seems normal to me now). I don’t know that everyday will be a good one. I’ve been told that some days may be three steps back before progress is made in Remy’s development and her getting better. Although, that same thing can be related to everyday life, why should I expect it would be different here, right?
The NICU is unique from any other part of the hospital I ever been to. The nurses and doctors are like mothers themselves to every child in there. Some are stern at times to protect order and protocol; which is monumentally important. Others are always nurturing and soft-spoken all of the time. They are All empathic and understanding. My favorite times to visit are at 9:00am and 9:00pm, when the new shifts would start and all of the doctors, nurses, and interns stand around Remy and discuss her progress. The staff is astoundingly connected to their career and have a knack for helping parents feel as comfortable as possible.