As I’ve written this whole thing, there have been random thoughts that popped into my head. In no particular order, there are [I will periodically come back to this and add to it]:
The Hotel. We had the excellent luck to have a hotel right by the hospital. Even though we are only about 30-40 minutes away from riley, we got a hotel room that was five minutes walking distance from the hospital. It was a huge benefit. Mama Vor slept there during the night, and Vor and I kept our extra stuff there. I would sleep there during the day, and Vor would take quick naps. We would shower there, and we got good food from their restaurant. If you have the means to have a hotel room, instead of running back and forth between home or staying full time at the hospital, I highly recommend it.
The Feelings, the First Night. Do you remember how you felt when your baby was first born and needed to be fed/changed/dressed/etc? Still somewhat drugged up, no sleep, exhausted from the massive effort of giving birth (or watching your significant other do that?) It feels like that again. Even though I have seven nieces and nephews, when it came time for nurses to hand Lis over to me, I was all, WTF. I don’t know what I’m doing! It is EXACTLY like that again. Except, now with lots of crying and feeling terrified and sad. I wanted to do what I always did for Lis—hold her, feed her, change her, love on her—but I suddenly didn’t know HOW anymore. For example—do we give her food or water right off the bat? Do we wait an hour? Two? How long can we wait? What if she’s hungry? What if she isn’t? What if she throws everything up? Then what? How do I feed her without holding her? What if I hurt her? What if she won’t eat? I was scared to change her because I didn’t want to jostle her and her poor little head, not to mention all the IV’s. In retrospect, I have decided this is all perfectly normal. It’s okay to be baffled, feel inadequate, be terrified, not want to hurt them. The first night and day are like this, then you gradually adjust.
The IV’s. Lis had her arterial monitor in one arm, and an IV in the other arm and each foot. Yes, it seems excessive; no, it’s not excessive. IV lines in babies go bad, fast. It is easier to have the lines in and take them out as they go bad, rather than try to re-insert them. It is kind of miserable when they flush the IV’s—I know it burns, having had it done to me. Lis would get angry for a few minutes, then settle back down. Her IVs all stayed in a few days, then two went bad almost at the same time. We took them out. Eventually, once she was off ICU status and down to floor status, we took out the arterial monitor, and just kept the little bandaid monitor on (you know—the thing the wrap around their finger that looks like a bandaid). So, the last day or two, all we had was one IV. It left us free to unhook it and hold her, take her for a walk, etc. Also, the nurses put little sock type things over the IVs so that it would keep her warm, keep her from picking at them, etc.
Holding Baby For The First Time. Much of what I said about feelings the first night applies here too. I was terrified, and Lis was uncomfortable, and there was much crying until we got it figured out on what worked best. For us, it was a nice fluffy pillow. I preferred to have the pillow in my arms, so that when Lis was in my arms, it was Lis, on the pillow, on me. That way, her bony, sore little head was not pressing up against my arm bone, but instead, was on the nice soft pillow. Vor had this way of holding Lis so that her head was totally off her arm and her neck was on his arm, and he kept the pillow behind his arm, so her head rested on that. If that makes any sense. Whatever the case, I recommend soft pillows. But, they will get dirty. Which leads me to…
The Stains on Your Clothes. And your pillow case, and your blankets, and the car seat, and the sheets, etc. Look, your kid just had major surgery and has a big incision on his or her head with stitches in it. Its ooey and gooey and still a bit bloody. It’s going to get on everything. So, don’t freak out when you look down at your shirt or pillow or whatever and see a few spots of blood. More problematic is the Bacatracin, which is antibiotic Vaseline. Our nurses and doctors had us putting it on Lis’s incision to prevent infection. People, its Vaseline. It gets everywhere, and it’s impossible to get out. We ruined more shirts before we figured out to put a spit up cloth or towel in between the goo and ourselves. Lis’s car seat material is just destroyed from it.
The Hats. I was constantly on the search for hats that fit over her newly enlarged head, but that wouldn’t have elastic that rubbed on her incision. Hats that were skull caps for toddlers and young kid were perfect, because they fit around her ears and were lightweight. I also got lots of the bucket type hats that would rest lightly on her head. Just…lots and lots of hats. No sunshine for that baby’s head, to help the scar. But also, to help deal with the horrified looks you get from people.
The Horrified Looks From People. They suck. At first, people are horrified but almost instantly realize that it was surgery, because it is CLEARLY a surgical incision. But then, things fade and the stitches are gone, and I’ve gotten more than one dirty look or even a “What did you do to your baby!” Screw them. If you want to be nice, answer; if you want to put them in their place where they belong, walk away. In the beginning, when her incision was there and ugly, I would preempt everything by making a joke about “a touch of brain surgery.”
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.