Unmet Expectations

Today was a good day. Baby Z is slowly, very slowly beginning to be weened from his blood pressure medications and from oxygen.   By slowly I mean he is now at 99% oxygen instead of 100%.  And where they usually like to turn down the blood pressure medication by increments of 2, Baby Z prefers to have them turn it down by increments of .5.  We are learning that it is two steps forward and one step back, don't expect anything to happen too quickly. They will get him down and then have to bring him right back up but not as high as he started.  At one point he was completely off the blood pressure medication but apparently that only lasted 15 minutes and then he was right back on it- nonetheless we are celebrating the small things.  Still not stable enough for the CT Scan which will enable us to diagnosis him, but we'll take it.  

He was also a LOT more alert which really made Mom happy.  He had been so sedated I hadn't seen him move or respond to touch since I first arrived at NCMC 3 days ago.  It started just simply.  We arrived in the morning and I proceeded to pull up my chair and sing and talk to him - the norm these days.  And then he started to squirm.  It startled me at first.  Should he be moving?  But yes, of course he should be moving, he is a little boy after all.  Then he started to stretch his legs and roll his feet.  His hand came up off the blanket and stayed upright.  I quickly grabbed his tiny hand - one of the only spots on his body where there is no monitor (they had taken out the IV that was once in it so it was bruised and a bit bloody but bare).  His fingers relaxed and then firmly grasped mine.  FIRMLY!!!  He still has fight in him.  It was wonderful.  As I sang more to him he stretched more and started to show life again.  We then stepped outside for "rounds" - NCMC is a teaching hospital so all the residents and medical students come around each morning to discuss the patient with the attending doctor and strategize for the upcoming day.  It is very detailed and a bit overwhelming but we learning a lot and end up with a good  feel for how his treatment is going.  When I went back inside I was explaining to Baby Z what was expected of him for the day and then it happened his eye twitched open.  Just a crack.  I immediately started to sing my lullaby and it opened again a bit wider.  I started to cry.  He opened it once more and curled up his lips into what almost seemed like a smile and he started to lick his lips and suckle a bit, trying to maneuver his tongue around the two tubes in his mouth.  He remembers me! He remembers what mother's milk tastes like and he could smell it.  It renewed my spirits.  I know he wants to get better, he has to get better.  But this was too much stimulation for such a fragile little man so I had to step away and let him rest.

As I look back on these last few days I realize that a lot of my sorrow is just coming from unmet expectations.  I expected to go to the hospital have a healthy baby and bring him home a few days later in the car seat so carefully installed in our car. I expected to be able to cuddle with him on the bed and sing sweet lullabies to him at night.  I expected to be able to study each tiny part of his body and marvel at the miracle I had been given. I expected to use the play-pen and the bassinet, the bouncy chair and the play mat, the cute striped outfit I had carefully selected and packed to bring him home in.  I expected to get those adorable newborn pictures - we had the photographer scheduled for yesterday - we canceled.  All of these things I was expecting and looking forward to.  Instead I got to spend a wonderful 13 hours cuddling and loving him in the hospital before he was whisked away in an ambulance.  Instead Nathan slung the empty car seat over his shoulder to carry it back to storage the day I was discharged from the hospital.  Instead we folded up the playpen and packed it the trunk of our car to use as Addy's bed in the Ronald McDonald House.  I still sing him sweet lullabies but I am just perched on a chair gently touching his head - one of the few spots available for touching.  I am still studying his body, just from a far and in much, much greater medical detail then I ever hoped.  And I am still getting pictures of him but just not the ones you'd see in a photographer's portfolio.

I have always loved the quote "If we learn to accept instead of expect, we'll have fewer disappointments."  Now I am trying to use it.