Glow Worm - March 8, 2011 - March 15, 2011

The nursing staff have been wonderful to Anna and our family.  I cannot count the times the staff, including those JR and I had never met before, told us that Anna is one of their favorites.  We even have nurses that just stop by our room to see how she is doing.  Nearly every time we walk into the room, there is a little surprise for us.  We have found all sorts of treasures: handmade Anna signs with flowers and hearts on her door, handmade note cards with Anna's footprints, model clay with her hand prints, pictures of the family with Anna, new Anna goals on the white board.  We are so very lucky to be surrounded by people who care.

The most common word I hear from the nursing staff when they describe her is "feisty".  Anna is a fighter and she is strong for all that she has been through.  Anna was born in a not so glamorous place and she has been fighting for her life ever since. 

By observing Anna, I have often thought that she doesn't act like she is sick. She is active and loves to move her head, arms and legs. It is also very common for Anna to look nonchalant during emergencies.  It is as if she doesn't understand what all of the fuss is about when she pulls out her ventilator tube or when her stats begin to drop. During those moments she calmly looks around while the nursing staff, me, and JR rush over to her. When her stats drop, I think mine do too, except that I probably look like my stats are dropping.  She is stronger than me.

The monitor that she is hooked up to is like a television screen. I focus on the three large numbers that change constantly:  heart rate, respiratory rate, and oxygen rate. Each rate is preceded by a moving squiggly line. I have sat for hours in her room just staring at that monitor.  Every 15-30 minutes or so, her alarms go off.  When I hear the ding, ding, ding, I immediately look at her oxygen rate because this is the only one of the three numbers that goes under or over her settings.  When I hear the alarm and see that her oxygen rate is high (good), I breathe a sigh of relief.  When I hear the alarm and see that her oxygen rate is low (bad), I have noticed that I hold my breath (Why I do this, I have no idea). Sometimes it takes a minute for her to go back up to the level she needs to be either by herself or with the help of the nurse adjusting the machine supported oxygen.

On Tuesday, March 8th, I walked into Anna's room for the first time that day.  I put my usual baggage down:  purse, beach bag full of books that will go unread and paperwork that will not get completed.  At the same time, I asked Nurse Michelle for an overnight update. I walked over to the incubator and in mid sentence I stopped what I was saying.  I covered my mouth with my hand and gasped, "She has clothes on!"  She had been naked and in a diaper since she was born so the nursing staff could keep an eye on her and watch for any abnormalities in body movements, coloring, etc. This was a milestone.

Anna was dressed in a little preemie outfit that was about 3 times too big for her and she was swaddled in a pink blanket and had her little knit cap on.  The only comparison I could think of was a "Glow Worm".  If you grew up in the 80's or had children in the 80's, you know what this is.

As I looked at her,  I could feel my lip quivering and my eyes begin to water.  Nurse Michelle told me not to cry because I was going to make her cry.  She told me that JR knew about this earlier that day and neither one wanted to tell me because they wanted it to be a surprise.  I was so surprised.

On Tuesday, March 15th, I was able to hold her with her clothes on while she was swaddled in her blanket.  This was the first time that I felt like I was holding a healthy baby even though she was still with all of her tubes and wires. It crossed my mind that maybe we would not be in the hospital for too much longer. She was doing so well.