Norwood Anniversary

Clayton had his Norwood four years ago today.  What an emotional day.  We went down to the NICU at about 6:30am to say goodbye.  He left around 7am for the OR and returned to the CVICU early in the afternoon.  When the surgeon returned, he was optimistic.  One of the fellows we knew really well from Colin's stay came in to assure me that Clayton's anatomy looked nothing like Colin's.  He had been in the OR in all of Colin's surgeries, and I could tell he was very sorry we were back.  He too was very optimistic, which meant a lot to me. 

Clayton definitely didn't have the easiest Norwood recovery, but compared to Colin, things went very well.  I think there was only one frantic middle of the night "get down here" call.  It did take almost two weeks to get his chest closed after surgery, due to his tremendous swelling, which was obviously traumatic to me, but they were eventually able to squeeze him closed (graphic, isn't it?).  He was released from the hospital on June 4th, and we went home to Fairfield, CA on June 6th.  I can't describe how lucky I felt to be taking a baby home. 

These were Clayton's daily meds when he first came home.  Meds were at 6am, 7am, 8am, 11am, 12pm, 2pm, 10pm, 11pm, and 12am.  I drew up 24 hours of meds at a time, usually between the 8 and 11am doses.  That was also the time of day that I recorded Clayton's weight and oxygen sat.  A couple weeks later we were able to shift the midnight meds to 11pm, which we thought was fabulous.  I think I might have killed myself by now if this was still the schedule.  Some had to be compounded.  One had to be ordered from a pharmacist in Phoenix because he was the only person in the US to compound that specific med.  Some had to be refrigerated.  Some were light sensitive.  Some interacted with each other and had to be given at very specific intervals to keep from having a reaction.  Oh, and there was the feeding (by pump of course), changing, bathing, regular newborn stuff to tend to as well.  It was definitely survival mode.  Luckily, at the time we didn't know any better.

Clayton's meds today.  8am, afternoonish, and 8pm.  No one needs refrigeration or is light sensitive, and everything can be purchased at CVS, which makes everything easy.

I've just been a little nostalgic lately about how far my boy has come in the last four years.  It certainly is remarkable.