On January 22, 2008, we prepped him for surgery in our own special way. Yes, that is a brown Sharpie:
We, as a family, deal in dark humor as a way to get through hard times, and laughing in the dark may help your family as well. Even the surgeons found our approach amusing, although they had to scrub the writing off of his head before they could get down to business.
Take lots of photos before surgery. Yes, your baby will be in a hospital gown, but they will be the last photos you have of your child AS THEY WERE. From then on, all the pictures will be part nature/part art.
I'll let you in on a little secret. Yes, we were worried. Horribly, terribly so. We were afraid that something was going to go wrong, that we were going to lose our baby, that he was going to end up brain damaged.
These are all totally normal feelings.
Let yourself feel them cry it out. Huddle down in the cafeteria with the pager, drink coffee/cocoa/herbal tea and just weep. Trust me, people will understand.
Handing my precious little guy over to those men was one of the hardest things I have ever done, but the folks at Children's Hospitals know this. They let us hold him while they got his IVs in him, got him hooked up and medicated and groggy, and then took him away in his nice warm blankie.
Then, we waited. I typed, Pablo called his family, we had friends who came by to talk to us and keep us company. It seemed like it took forever, even though our nurses were nice enough to call and keep us updated every hour or so. They also took pictures during the procedure, so if you would like to see what the surgery itself looks like, fee free to click here:
Eventually, they buzzed us up, and we ran all they way up to the recovery room. As we waited to be able to run in and see our son, and the first surgeon told us it had gone well, and that the only unexpected thing for him had been that Julian had lost a little more blood than they’d expected, but the transfusion had taken care of that. Then the neurosurgeon told us that they'd run into some unexpected problems after they'd opened Julian up. These are some of the worst words you will ever hear as a parent.
There is no shame in slumping against a doorway or bursting into tears when some totally clueless surgeon blurts things like this out.
In trying to explain, the man said that he’d been a little surprised by how “snug” Julian’s skull was. They’d thought they were doing this surgery way in advance (figured they had 4 more weeks before it would have compressed his brain), but it turns out Julian was out of room in there (they only had about 4 more days). The protective casing between the brain and the skull (the dura) was stretched to its limit, and had been rubbing against the inside of the skull and had rubbed through in a few places. We were thrilled that they'd caught it in time, but our knees buckled quite a bit.
Finally, they let is in to Recovery to go see him, and we looked into every crib before asking for our son. They pointed us back to the first bed we'd looked into, the only baby in Recovery. We'd looked right into his eyes and not recognized him. In hindsight, it was a totally understandable mistake, because he looked SO different, but at the time, I felt awful. what kind of mother doesn't recognize her own baby?
Does he look like the same kid to you? My husband and I joked that they'd just switched babies on us. But when my 2.5 year old came in, she knew him immediately. "Dere's brozer" the declared, and insisted we let her kiss him. We did, and she went home with my mother.
He couldn't nurse for a while and I forgot to pump, so I was super uncomfy for a while, so I encourage you to take breaks while they are asleep. The Tylenol-3 and the Morphine will knock them out, and then you can get a meal, pump, whatever. Also, at most Children's Hospitals, if the child in care is a breastfeeding infant, they will bring the kid's meal to the mom, so that you can eat something without leaving your baby, so you can be better food. :)
They swell. I mean, their eyelids look like grapes, their skin looks like it is going to pop, and they look so uncomfortable, you can't bear it. Remember, though, they are on great pain meds, and if sleeping peacefully, are probably feeling just fine, despite looking like this:
That's the start of post-op day two for Julian. I thought he looked terrible, but he finally started eating, even looking like that, and was only upset when he woke up and couldn't see. When I would touch his face and talk to him, he'd calm down, knowing I was there even if he couldn't see me. They're pretty tough, those cranio kids. They do sleep a LOT though, so bring a book, some knitting, or an iPod. You won't want to go far, but you will get bored and worry yourself into a frenzy if you don't have anything to do.
I made him a hat:
Anyway, he eventually had all of his lines out, was nursing again, and was peeing like a fountain. As the swelling goes down, they pee all that extra fluid right out. By the beginning of the third day after surgery, he'd shrunk himself right out of the hat I'd made him:
Here you can see the nice, clean zig-zag on his noggin.
As soon as Julian was down to just Tylenol for pain control (end of day 3), they packed us off and sent us home. The swelling continued to got down for a couple of weeks, but by Easter, we had the roundest, nicest head we could have asked for.