It’s been a STRESS-filled two days. Yesterday our son Charlie suddenly got scheduled for the surgery they weren’t able to do last week. It happened sooner than we expected because his infection had cleared up and the maven doctor who performs this procedure had an opening and is about to leave town for 10 days. It’s always scary when Charlie leaves the NICU. Just unhooking him from all his machinery and setting up the portable equipment takes forever. This time we were able to accompany him in the elevator to the surgery floor. Leah entertained us in the waiting room for two hours with crossword puzzles and her new toe socks. That calmed us down a bit but we were still terrified. Apart from the actual procedure, which carried plenty of risks, we always worry how Charlie’s little body will handle these surgeries. Finally, the neurosurgeon came out and told us all went well. Charlie now has a ventricular reservoir in his brain which will drain the extra fluid that builds up or allow the doctors to tap the fluid out at less risk than their previous taps into his fontanel (or soft spot). The doctor told us that he saw a lot of scar tissue and other damage in there, dashing our hopes that maybe they were wrong all along about the Level IV brain bleed and it really wasn’t so bad. Not new information, but such stuff has a way of filtering through at various rates of delay. And although the doctors frequently go over the range of issues Charlie could be facing, it’s still way too early to know exactly what the future holds for our son.
When Charlie finally made it back up to the NICU, he was surprisingly alert, his eyes wide open and looking around. We took that as a good sign—that he hadn’t required a lot of anesthesia and was recovering quickly. But the alertness soon turned to agitation. I took Leah home but Kendall ended up staying in the NICU until after midnight, worried that his jerky movements and eye rolling were signs of additional seizures. They gave him more Phenobarbital and he finally fell back asleep. The neurosurgeon told us today that this was most likely just an after-effect of the surgery. When I arrived this morning his heart rate was way too high but that calmed down by mid-morning when I accompanied him to get a CT scan. Again with the unhooking, unplugging, and bagging. Then we found out that there was some emergency happening in the CT scanning rooms and they weren’t ready for us after all which caused my own stats to soar as well as those of the NICU staff who had just spent an hour unplugging Charlie. Oy. A few more crazy snafus happened that I’d rather not go into—I’ll just give you a little teaser image of one point in the CT room when I screamed like a little girl and almost fainted (that was a big hit with the staff!) but everything was okay with the scan and Charlie made it safely back to his comfy incubator. He’s been back on the ventilator for the past two days because of the surgery and scan but we’re hoping he can be extubated tomorrow and that we can soon go back to all that delicious stuff like kangaroo care!
We had our weekly meeting today with the neonatologist who confirmed the neurosurgeon’s findings about the brain damage and again talked about the range of possibilities including therapies that could help. Is this too much information? I bring it up because I’ve been grappling with a big issue for me—my tendency to bounce like a ping pong ball from total denial (“I’m sure everything will be just fine, Charlie won’t have any problems”) to complete catastrophizing about his condition and then back to denial. I’m desperately looking for some middle ground. Accepting the reality that he will not be leaving the hospital as a “normal” baby but will have as yet unknown issues we’ll need to face. We couldn’t love him more than we do, that is not in question, but I’d by lying if I said we weren’t freaked out by the unknown issues and potential disabilities he may have for the rest of his life.
I started realizing today that the messages we constantly get from very well meaning people that everything will be fine, that Charlie will pull through without the slightest problem aren’t that helpful to hear as they were weeks ago. It's starting to feel like these kind and loving people are denying a part of Charlie’s and our reality even though we don’t know yet what that reality is. I totally understand why people glom on to all the positive news I relay here and I’m thrilled that they do so, I’m not reproaching any of the caring commenters on this blog and I love hearing the stories from parents who’ve been through similar situations with positive outcomes. But I’m also noticing how some people cannot tolerate certain types of crises or difficulties. I was recently reading the blog of someone who just lost a child. This person expressed a momentary positive feeling she was having that day and many of her readers were quick to jump on it and tell her how relieved they were that everything was okay now, that she was healed and good and whole. When of course she wasn’t at all. We all do such things. I know I do. As one small example, whenever someone I know tells me that they’re breaking up from a long-term relationship, I ask plaintively, “Are you sure you can’t work things out?” What I’m really saying is, “Please don’t change things, I can’t handle it. Please be happy or it will make me uncomfortable!”
So Kendall and I are working it through. Trying to accept something that is very serious but still undefined. Trying to be very positive and to live in the moment but to also be realistic about what lies ahead. Trying to come to terms with our own perceptions of what a successful, fulfilling life is. Trying to wrap our brains around all that has happened in the past month and a half including the excruciating loss of Oliver. And just loving our son Charlie as much as we possibly can, especially since none of us ever knows what tomorrow may bring.