Lis stayed in her inclined pack and play for a couple weeks to help with the swelling. Her heavy duty Tylenol lasted about two weeks (we alternated with regular Tylenol), and she ran out in time for her two week appointment, which is when they should just be on regular Tylenol anyways.
The sleep thing is going to suck for a long time to come. First, they’re in pain; then they’re messed up from the drugs; then, they’re messed up from withdrawal; then, they’re messed up from having no schedule. Now, Lis is messed up from night terrors and OMG. Just deal. Accept help in the form of sleep or breaks or overnights with grandparents whenever possible. Have a friend come babysit during the day while you sleep for three hours.
Don’t be afraid to call the doctor for anything regarding the incision. Call about fevers; call about weird colors; call about weird smells; call about oozing things. Some of it is totally normal. For example, about three weeks about, Lis got this weird white pockets of what looked like whiteheads all around her incision. Some were tiny, some were…not. I called, in a panic, thinking there was infection. Nope. That was the dissolvable stitches breaking down, and Lis was just having a minor reaction to their breakdown. But it was good to call.
Lis went back to daycare three weeks after surgery. She could have gone back two weeks after, but her daycare was closed for summer break. By then, she was pretty much off Tylenol totally. I just instructed them on how to put on the antibiotic ointment (gently and everywhere), and showed them where her new soft spots were. [NOTE: Bonus! Now instead of no soft spot, you get multiple ones!] I let them know about changes in her sleep and scream type (Lis learned that the new “I’m in pain” scream was really effective at getting attention and began using it all the time).
Keep a hat cover the scar on your baby’s head. Make sure it doesn’t rub against the incision. The best ones we found were youth under armor skull caps from Dick’s Sporting Goods. They were big enough to not rub on the incision, and we could actually get the elastic band down around her ears. They are light, but warm. You need hats for two reasons: (1) It’s super important to keep the sun off the scar—it helps the scar heal better. (2) It reduces the funny looks you get and the gasps and the “what did you do to your baby!” comments. Believe me, after the stress of surgery and the stress of not sleeping, the first time someone says that to you or gives you a dirty look, you will lose it.
Also, DO NOT LISTEN to the idiots who tell you to put whatever vitamin cream on the scar, because “it will reduce the size of the scar!” No, MORONS. You want it to scar over. Those creams work by thinning out the scar, which can REOPEN the scar, and leave you and your baby open to infection, which in this case, can be life-threatening. This made perfect sense to me. I cannot even count how many people tried to tell us to do this or even tried to give us whatever vitamin cream it is. Eventually, I got hostile, and it stopped.
The Follow Ups
We’ve had two follow up visits so far. So far, all is well.
There's the two week follow up, which is when you are still shell-shocked, your baby is still swollen, and the incision still looks nasty. It was at that point that Lis was totally off Tylenol with Codeine, and she was down to (maybe?) two doses of Tylenol a day. She tapered off fairly quickly--she just seemed to do really well, expect at night.
The neurosurgeon and the plastic surgeon checked us (Lis) out and declared her to be Doing Great, instructed us to keep up with the ointment, told us not to be afraid of washing her hair and head, and sent us on our merry way.
At this point, it looked like her swelling was gone, though we know now that no, her swelling was nowhere near gone. She just looked so much better that we thought the swelling at least was gone. I would say it probably took until almost two months before the selling was really, truly gone.
We had a two month follow up appointment where essentially the same stuff happened. They encouraged us to scrub at her scar a little bit to get the lose scabs off, since those can harbor infection. Other than that, we were in and out.
Also, at that two month mark, I had the depressing/reassuring experience of having the doctor inform me that it was TOTALLY NORMAL for Lis to be on a complete sleep strike. Here's the reasons she gave: (1) All the narcotics will mess them and their sleep up for quite some time; (2) Their sleep is really disrupted in the hospital; (3) They were in pain for quite some time when they came home, messing up their sleep further; and (4) By the time all these other things fade, BONUS! You have a baby with crappy sleep habits. Good luck with that, was what our doctor essentially said to us. I growled at her, and she laughed. I love that woman.
Okay, fine, you can email me at graceandpressure [at] yahoo [dot] com. Don't all flood me with emails at once, you know. If you're emailing about craniosynostosis, put it in the subject, and I'll respond quicker. Deal? Deal.