Certain Uncertainties

Just got off the phone with Michelle at Boston Children's. She left a message yesterday asking me to call her back, and for some reason I found it really hard to do so. I knew what she was calling about. Were we canceling surgery on the 23rd for sure? Justin is convinced it is the right choice for now, but I hesitated. I want so badly to be sure that we're not hurting her by waiting, not causing permanent harm to her lungs like Dr Manfredi feared last September when they first found the leak. I've learned to respect the worry in a doctor's eyes. I saw that look in Dr Miner's eyes during NICU rounds at PCH when he was the lone voice counseling against our then-team's plan of substituting a shortage of the usual TPN calcium by giving calcium citrate via peripheral IV back in May 2011, when tiny week-old Audrey was one of the 4 worst injured babies in the PCH NICU by the calcium fiasco. Her hand still bears a deep, ugly scar from the burn that ate away her flesh and took 3 months to heal. We should have listened to our guts and read the signs then, and gone against the easy course. Is this another one of those times; are we being foolish to cancel and think it's OK to wait? Or is Justin in fact protecting her from unnecessary surgery, potentially numerous followup dilations and another extended separation of our family?

So this morning I procrastinated calling Michelle back until she finally called me again. I apologized and tried to explain my hesitation, thanked her for her work to set up these appointments, and finally did cancel. I should feel elated and relieved. Right?

In November Audrey was eating by mouth extremely well. In December, whether due to a series of viruses or other reasons, she stopped eating by mouth almost entirely. Not for lack of wanting. Last week she was virtually 100% dependent on her g tube. And then, it shifted again and she has been steadily eating more and more by mouth until last night she blew me away by jumping up and down with excitement begging for cucumbers. I was very hesitant at first, and carefully gave her the smallest, thinnest slice to nibble. She had one or two brief "stuckies" where she coughed and gagged and worried us, and then amazed us by finishing it and begging for more, eventually eating not one, but 10 slices.

Wow. This girl just refuses to be defined.