Before Diagnosis (or in dealing with doctors, regardless):
* You are the parent. Ask questions, demand answers. There are no stupid questions, and if your gut tells you something isn't right, it probably isn't. Get a second opinion or force them to do the test/scan that will give you peace of mind.
* Nurses are better with patients than doctors (as a general rule). If you are already emotionally fragile, ask a nurse to answer your question. The doctor's brusque answer will only set you over the edge.
* When you cry, do not feel guilty or ashamed. Take a minute, compose yourself, get through whatever interaction you must with the men/women in scrubs, and then step outside and bawl your eyes out. This is scary, and it is okay to cry.
* Get in touch with the groups on the Resources page. Find a mentor. Meet people whose kids have gone through this so that you know your child can also be through this some day.
At the Hospital:
* Bring a book, your iPod/Pad, some knitting, homework, a laptop. You will get bored....really.
* Take breaks while they are asleep. Pump (if you are nursing), eat, make a phone call, go to the gift shop, something. The Morphine/TyCo combo knocks them out, and they'll be fine for 15 minutes. I swear.
* 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.
* For the most part, the staff Children’s Hospitals are unbelievable. Competent is a given, but at every one we've been in they’ve been so compassionate and loving toward my son and other patients. I was especially struck by one nurse who would pet and quiet and murmur quietly to a severely developmentally-delayed girl in the post-op area, to soothe her. This girl couldn’t speak, and had been very loud in her vocalizations before surgery, but this nurse was so loving and attentive to her that she quieted down to a soft hum, and seemed calm.
For After the Hospital:
* Emu Oil
* Hanna Andersson Pilot Caps for your little one. Soft, cozy, in either lightweight or winter-weight, and tie on to keep the patient from picking at the scar. Also, keeps busybodies from asking too many questions.
Once You Are Home:
* You may find yourself staring at the child you've brought home, wondering if you'll ever get used to their new face. You will, it will just take time. Eventually, you'll relate normally to this person who doesn't look anything like your child, but acts and smells just like your child. It is okay to feel awkward. Really.
* You need a sense of humor. If you do not learn to laugh about this, you will cry about this. For example, Julian's first Jack o' lantern:
Silly? Yes. A bit off? Maybe. Did we get a good giggle out of it a few times both in the making and observing of it? Yes! And that made it all the worth-while!