Joy and Pain

Joy and Pain

First the pain:

Today should be Gray’s first birthday. He entered the world in a rush, a quick four hours including a useless epidural and Magnesium Sulfate that in combination with my pain made me so out of it that I hardly remember the first hour or so of the miraculous struggle. His Apgar scores were good, he was on CPAP and I got to hold him for a couple minutes before the NICU team whisked him away.

Paul got to visit him while I was in recovery and then they wheeled me down to his room.  Gray looked so helpless in his isolette, bilirubin lights on and eyes covered.  By our second visit in the afternoon he had been placed on a ventilator—his oxygen saturation numbers dropped on the CPAP.  But on the ventilator he was doing ok.  He needed morphine so he wouldn’t work against the ventilator.  He had the tiniest little IV.

They took blood draws from pricking his heels and they were red and raw. 

I had to start pumping.  I won’t get in to the hell that is, particularly when you’re doing it for every “meal”.  That can wait for another day.

The next day we were visiting Gray, getting an update from the team who had been keeping a watchful eye on him.  In that moment we saw blood come out of his ventilator tube.  They rushed in to action and told us that he must have bleeding in his lungs. 

With little time to prepare or truly give “informed consent” we signed a waiver for blood products.  Paul asked if we could be the donors but the resident said there really wasn’t time for that.  We were in such a daze we didn’t really understand that Gray was on the edge of life.

The next step was putting Gray on an oscillating ventilator.  This acted like putting pressure on a wound—air pushed in to him on and off and sounded like a jackhammer, rattling his little chest up and down.

They tried to put in a PICC line three times to give higher calorie nutrition than they could give through the line.  He took some through an NG tube and over several days was finally digesting it. No PICC line needed, no more attempts. 

Gray gradually came off the ventilator and we got to hold him!

The day to day became routine, travelling to the hospital, pumping every three hours, chatting with the nurses.

He got better and better and after 11 weeks between the NICU and Special Care Nursery he came home. Between hormones, exhaustion, general stress , Gray’s daily oxygen ups and downs, and navigating the day to day (making dinner was low in the list of priorities) it was a bit of a blur.  It’s hard to say it is history.  We still have some PTSD but it’s becoming less and less.

And the joy:

We have never felt so much love from our families and friends.  We had meals for days, followers of our Carepage with encouragement and support.  When we had to move out for lead abatement our parents and friends helped us pack and carry and our neighbors let us stash the stuff we didn’t want the movers to touch.  Our baby showers were so thoughtful and bursting with affection.

The kind of affection that they continue to give through hand me downs, care packages, babysitting and checking in. 

My boss was generous with my workload and I was able to hang out with Gray everyday.

We owe the world so very much.  Without you we would not have made it through with the minimal emotional scarring we have now.  At least once a day we look at Gray and feel such pure love and joy and though we don’t express it enough we have love and joy in knowing all of you.