Briefly, the facts. After a week and three days of deferring labor with various drugs, the doctors decided early Saturday morning that the births could wait no longer. Kris had dilated to 5-6 cms and there was clearly some unknown problem that they were just prolonging. I was called at 5:30 AM and I ran every red light from Fishtown to 8th and Spruce to make it. After a procedure that seemed quicker and less painful than my wisdom tooth extraction, Nicholas Harrison (previously Mr. A) and Alexander Owen (aka "B") were in front of our eyes. Tiny fellows: both 14.5 inches long, Nick was 2lbs 8 oz and Alex was 2 lbs 5oz. Both wrapped their tiny hands around the tip of my finger and in an instant every conception of the idea of love that i had ever previously felt was dwarfed by an emotion so profound that all I could do was cry uncontrollably. While fumbling with my iPhone to take a picture of them.
A few hours later, after they were intubated and strung up with dozens of wires, Nick was transported to CHOP so they could monitor and deal with his CCAM. Kris was sent back to recuperate. I sat in a chair. For about 27 hours.
This part is hard to write, but these are the facts and I have to deal with them. Yesterday Nick had a seizure and was given a head ultrasound to see if he was bleeding in his brain, something that premies are at risk for. Indeed, he was bleeding on both sides of his brain, both in the ventricles and in the brain tissues itself. Of the four levels of severity that bleeding can take, his was grade 4, the worst. I don't think this has anything to do with his lung issues, but then again that probably didn't help. The doctors think this may have started in utero. As one can imagine, the prognosis is not good. The likelihood of him surviving lung surgery, or surviving it without sustaining even worse bleeding is slim. And even if he did survive, they tell us that the neurologic damage he is going through now will be devastating. He will have cerebral palsy and may never develop cognitively beyond the level of an infant. It is likely that this week we will be asked to make a decision about whether we want to continue him on life support. I don't know how anyone can deal with an ethical issue of this magnitude, but we will make this decision this week. (I ask the religious among you to withhold your moral judgement or ethical suggestions, because I will most likely say mean things to you in return, and I don't want to do that.) We will know more as the week progresses.
On the other side of this fucking see-saw is the boy Alex. I am so frightened to entertain a hopeful thought about this kid, but by all measures he is doing very well for an infant born so early. He is breathing on his own and everything looks good for now. He is receiving medicine to deal with a common premie condition called PDA or something that I don't understand, and once that is resolved he can begin feeding through a tube. Kris has been to see him several times and her usual stony disposition has melted away into a display of maternal love so tender that I almost fainted. Of course, Alex is still critical and it will be some time before we can truly start to feel some sense of calm. But today we are allowing ourselves a slight feeling of hopefulness.
There's so much more I want to say. But I need a shower, and a nap, and maybe some lunch. Thanks again to everyone who has sent messages, visited, offered their help. We have never felt so loved. Whatever the outcome, we will get through this because of you guys. Special note: NO THANKS to the Philadelphia Phillies, who have repaid my support by going 1-8 at home during my time of need. I'll remember this, guys.
Trying to retain some levity here. Bear with me. I love Kris, I love Nick, I Love Alex, and I love you.
Thanks for the details and descriptions. They are a great window into what you are going through. I am thinking about you guys all the time.
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