A Lesson on Hydrocephalus

To give you said lesson, first I must start at the very beginning. When Mackenzie was 2 months old, her doctor was concerned about her head size. After a couple of weeks, I measured her head myself, and It had grown in circumference 2 inches. I called her doctor and she had me bring Kenzie in. She recommended that I take Kenzie to a neurosurgeon, and a couple of days later we went in. All he did was look at her and say, "You need to check into the hospital (Phoenix Children's) right away. You will spend the night there and we will perform surgery tomorrow. She has hydrocephalus, which means that she has too much fluid around her brain because it isn't draining like it should." (or something like that) We all have this fluid that protects our brains, but when it doesn't drain and it builds up, it makes the head swell, and will cause blood clots which can be fatal.
So, we went to the hospital, Mackenzie and I, and we checked in, and she had a CT scan to confirm our Dr.'s prognosis. Then we waited. I remember there was another baby sleeping in the room and he had these weird bumps on each side of his head underneath the skin. My heart went out to him, I thought, "Wonder what's wrong with that baby?"
The next morning, they took my baby away from me and Erik and I waited. About 2 hours later, they called us back to Recovery to see her, and there on my baby girl's head was a "bump" like the one on the other baby. "Oh" was about all I could say. Kenzie was there with tubes everywhere and her head sunken in so much that we could see all of her skull plates. I was terrified to even touch her, but the nurse picked her up and handed her to me, and that made me less afraid of hurting her. She didn't even cry.
Fast forward 10 days to her follow-up exam. We went in to get her stitches removed, and have another CT scan. That visit went something like this.... Dr: "The shunt (by the way, that is the tube they placed in her head to drain fluid into her abdomen) isn't working properly, I need you to check into the hospital right away and her surgery will be in a couple of hours." Me: "Huh?" OK, this time it was just me and I had Sam and Kenzie. So we go and get checked in, and I call Erik and break the news to him, he rushes over and gets Sam. And I waited. Same recovery images.
Oh, but wait, it gets worse. We go in yet again to her follow-up, and you guessed it, "the shunt wasn't working" what made it worse was that they scheduled the surgery for a week later. A week for me to fret and cry, and cry. At least the first 2 times, I had no time to even think about what was going on. The surgery went well and we went in for her follow-up 2 weeks later. Dr: "I still don't like the amount of fluid, I would like to place a second shunt on the left side of her head." Me: holding back sobs "Can we just wait a couple of weeks and see how she's doing?" Dr: "That would be fine." So, two weeks later, CT scan shows a perfect amount of fluid and the Dr is satisfied, "Come back in 1 year for another CT scan. She should be able to have it taken out in a few years." Me: "OK." There was also a memory in there, because this third shunt she had was "programmable" which means there is a little pump right on the inside of her skin on her skull, and I was taught how to pump (by pressing in on it several times) the fluid out of her head if it built up (we could tell by her "soft spot" on top of her head, if it swelled, she had to be "pumped"). Not a pleasant thing to do.
Today, I took Kenzie in and she got her shunt removed. It was so bittersweet. Bitter because she had to have surgery today and be put under anesthesia and there are always risks. Also, bitter because just walking down those hospital halls chokes me up. It was sweet, because this time when they took me back to Recovery, there was my precious little girl smiling and eating a popsicle. She didn't even cry this time either.
Kenzie: "They took the bump out!"