Disclaimer: This is my experience with the process. It may not be yours. It may be similar; it may be completely different. It can be highly specific depending on the child, which type of craniosynostosis, the family dynamics, which type of surgery, what hospital, what doctor. I wobble back and forth in telling this as a story, as it unfolded for us, and telling you facts and items that helped instead of the story. So take it for what’s it worth, as just another experience. File it away for reference as either helpful or not.
Post Diagnosis: The Weeks Before Surgery
The doctor gave us a “prescription” (you need a prescription! Who knew! I guess it makes sense though, otherwise I’m sure you’d get Twilight crazed teens showing up, all “I’d like a pint, please”) for Lis to get blood from the blood bank during the surgery. Once we had her blood type, we recruit family and friends to donate so that we could do direct donations. We all donated blood about two weeks out from surgery. I was deeply touched by the number of people—friends, relatives, and even other attorneys in our legal community—that came forward to help.
We took lots and lots and LOTS of pictures. Get some professional pictures, if you can, pretty black and whites with a soft focus lens out in a nice field or in the mountains or whatever. I told myself, out loud, and I told everyone, it was to document time passing and what she looked like now. In my head, a little voice constantly said, “just in case.” I would not advise letting that little voice gain a foothold and become verbal.
Around the time Lis had her two week pre-op appointment, we started being even more diligent about keeping sick people away from her, avoiding sick people ourselves, washing out hands over and over and over, etc. We did not want to have to delay her surgery date.
Lis had her last round of well-child shots ten days before, which was the absolute limit. Make sure you check that out, and don’t go getting shots days beforehand without clearance from the surgeons and the nurses. I think the restriction is no live virus shots, but you really need to check with the doctors and nurses. There’s also some restrictions with antibiotics, etc.
We made sure everyone got lots of Skype time, Facetime, and real face to face time with her. We let Mama Vor keep her overnight one night not too long before surgery, so we could be well rested. The last weekend and night before surgery, we kept all to ourselves. We didn’t even really take phone calls, though texts were okay.
The Things We Carried
For Lis: Her diaper bag, with a few diapers and wipes, though that was more for the time before surgery, since they had all that there for us for our stay. A few bottles, because I wasn’t sure if she would accept the hospital bottles. I also brought some of her formula, because they told me to—they said to bring some in case they didn’t have it, and if it was a kind they didn’t have in stock, they would make sure it was there within 12 hours. Bonus points to Riley for that. I brought her favorite lovies and blankets, anything that was really soft and had a nice texture. I brought ditties (pacis), and I brought stuffed animals to line her bed. I brought a few light blankets, a few medium blankets, and a few heavy blankets. We brought snap up onesies which made having clothes on her easy-peasy, since we didn’t even bother snapping the bottom [NOTE nothing will fit over their heads, make sure everything is snap up. NOTE you will not be able to get anything over their hands and feet, since there will be lines and IVs everywhere. NOTE long sleeves do not work with IVs]. I also brought some toys that made noise that were easy to grab, and since she loves music, we had our ipads and phones to play music to her.
For us: Life was made easy for us because Mama Vor got a hotel room within walking distance. She stayed there at night, and we would take turns crashing during the day. We kept all our crap there, and kept minimal things in the room. Pack whatever clothes and essentials you need for two overnights; at that point, for the love of all that is holy, go home or to a hotel and shower and swap the dirty stuff for clean stuff. There is not much room in an ICU room to keep a week’s worth of clothes and work and whatever. I rotated between jeans and yoga pants, and a comfy slouch sweater that I constantly rotated tank tops underneath. I also had a sweatshirt. Fuzzy socks for sleeping in and wandering hospital hall ways at night. Slip on shoes or flip flops to do the same.
Wish I had brought my own pillow and warm blanket, but the hospital stuff was adequate. We brought water, mostly ate hospital food, though friends stopped by and brought us stuff from Trader Joe’s, which we kept in the common refrigerator.
What the hospital had for us: diapers; wipes; formula; nipples to attach to the ready to use formula; bathtub for Lis; baby body wash; wash cloths; spit up cloths; blankets; pillows; a swing for Lis; a stroller for Lis. The swing and the stroller proved invaluable later in the stay when we could unhook her. She screamed bloody murder unless she was in motion.
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.