Yay, all of Charlie’s internal organs are now internal again! He had his “ostomy take-down” yesterday and all went well. I think the pediatric surgeon that did both of these surgeries, Dr. Frykman, is a genius. I am so thrilled to say good-bye to that damn ostomy bag that kept falling off and causing all sorts of problems over the last two months. I remember when Charlie had the initial emergency surgery in the middle of the night to remove the perforation in his colon. I was still operating on pure adrenalin, Kendall was still at the mental health facility at Cedars, and our son was still well under two pounds. The idea of doing such a delicate operation on so tiny a baby was terrifying. When Dr. Frykman told us back then that he’d have to wait until Charlie reached two kilos (4.6 lbs.) to put his intestines back together it seemed like that day would never arrive. But here we are, thank God.
It will take Charlie a while to recover from the surgery and for his digestive tract to kick into gear but this is a major step on his road to coming home. Once he is completely healed he will be able to get what we hope will be his last surgery—replacing the reservoir in his head with a permanent shunt that will carry the excess cerebrospinal fluid to his stomach. It’s funny—even reading that sentence three months ago would have made me woozy and now I spit out medical terms all day like I’m a featured player on “ER.” I used to turn away during most of Charlie’s procedures but now I’m right there, holding his head when they tap his reservoir and extract the yellow fluid from his brain. Say what you want about the medical system in this country, I am filled with endless gratitude for the incredible expertise I see every hour of every day and for the literally hundreds of individuals who have been saving my son’s life over and over again for the past 78 days.
Charlie is still a bit out of it thanks to the morphine he’s getting every four hours. When I asked the nurse last night if I could have some she said I’d have to take every single preemie-size dose they have to even feel a slight buzz. Don’t worry, I was only kidding. I may be majorly stressed out these days but I have no plans to break into the NICU narcotics closet! Charlie is intubated again from the surgery but hopefully the breathing tube will come out today or tomorrow and he’ll go back to his nasal cannulas.
Tomorrow Charlie turns 36 weeks, gestationally. That’s considered full-term for twins and it’s what we were aiming for even though his official due date was August 12. Part of me still daydreams about the parallel universe where Kendall and I happily go to Cedars this week and welcome our two healthy boys. But that’s not where we are. Even after 11 weeks I still feel like I’m just beginning to come to, to take my place in the world around me. I’m not there yet since our lives are still based in the hospital and will be for some time to come, but I’m getting occasional jolts of real-world awareness. Some of those are not exactly pleasant since they bring panicked feelings about work, money, and all the other things I’ve pushed aside since the end of April. But fuck it, everything we’re doing now is more important and there will be time enough to resume all previous activities. If I’ve neglected to thank anyone personally for their amazing acts of kindness, if I haven’t responded to phone calls or emails, please forgive me, I will eventually catch up on all correspondence. For now just know how grateful we are for all thoughts and prayers sent our way.