The Diagnosis

I believe it was right before Christmas, in 2009, that I took S to her 6 month well baby check up. Up until that point, our check ups had been normal and right on par for her age. Something different happened that day.

It started with the usual weighing and measuring. Dr. P asked if I had any concerns, and at that point, I didn't. He did an overall exam, and then started jotting things on her growth chart. And then he stopped. "I'd like to measure her head again," he told me. I just assumed, as he had, that he wanted to make sure he'd written the correct measurement. He had, but that was where the concern came in. He told me that her head circumference was measuring a little larger than he would expect. The rate of growth seemed to be a little faster than normal. To be cautious, he told me he was going to order a head ultrasound, just to take a quick peek. He mentioned that I had a large forehead (uh, thanks?) and that it could just be hereditary.

S's head ultrasound was scheduled for January 12th, exactly 7 months from the day she was born. Of course, the techs can't tell you anything. They look for what they're looking for, they consult with a doctor, who also doesn't tell you anything, and then they send the report back to your doctor. I had no idea what we were dealing with. The ultrasound itself didn't take a lot of time. S was very squirmy, as any 7 month old child would be, and the pictures weren't as clear as they'd hoped because her fontanel (aka soft spot) was very small. They couldn't really tell me anything. So we went home. And that afternoon, maybe an hour after the ultrasound appointment, I got a call from Dr. P. I had never, ever, gotten a call from him. He told me, over the phone, very matter-of-factly, that my daughter had hydrocephalus. For those who don't know, hydrocephalus, also called water on the brain, is a condition where, for whatever reason, the cerebral spinal fluid isn't draining adequately from the brain. In a "normal" system, CSF travels up the spine into the brain and then back down the spine. In people with hydrocephalus, this "drainage" is somehow slowed or blocked altogether.  Sometimes this is caused by a major head trauma or injury. Or, as in the case with my daughter, it is something one is born with. In some cases, usually more severe, this condition can be diagnosed in utero. In others, it is not diagnosed until 1 year or beyond.

What did this mean for Seylah? Well, at this time, they still felt that it wasn't emergent. A referral for an MRI was sent out, and in the meantime, we waited. Dr. P gave me a list of symptoms to watch for: dizziness, lethargy, vomiting, a bulging fontanel. If I had any concerns, I was to call right away. The MRI was booked for February 9th. Again, we had nearly a whole month to wait.

In the month we had to wait, I started noticing small changes in S. She had been able to sit up on her own at around 6 months, but now, at 7+ months, she was losing her balance a little. She hated being on her tummy. She wanted to be held all the time. She started to hate diaper changes. I had no idea what this all meant. I think I called the doctor to ask about them, but because they weren't accompanied by vomiting or a bulging fontanel, he didn't seem concerned. I watched my baby not progress in physical milestones.

The MRI was much harder than the head ultrasound. S was almost 8 months old, and couldn't be expected to remain still for 15+ minutes, and so she had to be sedated. This meant fasting, getting an IV, and being put under general anesthesia. Fasting was hard. She was still nursing every 2-3 hours, and she had to be clear of fluids for 4 hours prior to her appointment. She was so cranky in the waiting room. When we were called in, they looked at her veins, and I told them that, like me, she had very thin veins, making it hard to get an IV placed. They agreed that we could use the gas first to put her to sleep, and then they would put the IV in to ensure she stayed asleep for the whole procedure. I was able to walk her into the MRI room, and I was the one to put the mask on her face. That is probably one of the hardest things I parent has to do to her child. I felt her quickly get limp in my arms, and I cried. The nurse took her from me and laid her down, and they told me to go wait in the waiting room or take a walk or something, and that they would come for me after she was put in the post-op room. My aunt came with me, and she took me for something to eat. We went back, and I could hear crying, and I just knew it was her. I rushed to her bed. She was coming out of the anesthesia already and was upset that I wasn't there. I was able to nurse her, and then they took her IV out, and then I nursed her again. She was monitored for about an hour before they signed her release. She had come through everything well. We were sent home to wait on results.

The next day, February 10th, we saw the neurosurgeon, Dr. M. He explained to us that S did, in fact, have hydrocephalus. He told us that there are four ventricles in the brain that are filled with CSF. In S's case, all 4 ventricles were about 4-5 times the size they should be for her age. He said that they should normally be about the length and width of an adult thumb, and they were more the size of a small fist. Maybe that's more than 4-5 times the size. He said, given the information, her best bet was surgery. I asked him what would happen if she didn't have the surgery. He said that if the ventricles continued to grow, they would start to put more and more pressure on her brain, causing brain damage. The extent would depend on where the pressure was placed. We went through what the surgery would entail. A small incision close to the base of her skull on the right side, behind the ear, would be used to place the shunt inside one of the ventricles. From there, a thin tube would run under her skin down into her abdomen, which is where the excess fluid would drain, in her abdominal cavity. The type of shunt used for S is called a Strata Valve. This valve is "programmable", in that there are multiple settings controlled by a magnet. These settings can increase or decrease the flow of CFS. The higher the setting, the more force it takes to direct the CSF out of the brain, meaning less drainage. The benefits to this shunt are that they will not need to replace it if there is not enough (or too much) CSF draining. The tube that was run from the shunt to her abdomen was made of a certain length so that as she grows, she will not need subsequent surgeries to adjust to her growing body. There is enough tubing in her abdomen to continue to drain as she grows up. What this means for her is less surgeries throughout her life. She would only need surgery if, for some reason, the shunt malfunctioned (got clogged) and was no longer draining CSF, or if she were fighting off an infection and it started attacking the shunt, or if she started experiencing abdominal pain that might be linked to the drainage site. However, if it is found that her brain starts absorbing the CSF at a normal rate, and there is no longer need for a shunt (apparently this is very rare), this would not be reason to do surgery. They found that going in to remove a shunt that was no longer needed was more risky than just leaving it in there. He pretty much told us that she will have this thing in her brain for the rest of her life.

All of this information was so hard to process. Wayne and I sat there and cried, while the doctor told us that this was actually caught in the early stages, and the chance that it caused neurological damage was pretty slim. He said that this was not considered an emergent case, but that she would need surgery "soon". How soon, we asked. He sent his nurse to check the OR availability. Next week, they said. He asked if we wanted to talk it over and get back to him. We looked at each other and said no. If this is what she needed, then this is what we'd do. S's surgery was booked for February 16th, 2010.

Hello World

This is not my first blog. It probably won't be my last. Right now, though, I am just hoping it survives past one post. I am a journal-er by nature, I have volumes upon volumes of books filled with teenage angst, drama, stories and just life in general. I have chronicled my journey to motherhood, written on the adoption process of my middle child, and logged brief updates of my youngest child's diagnosis of hydrocephalus, following her through surgery, recovery, and the road back to healthy (as healthy as one can be with a shunt in your brain). A few years back, I started a blog, just for something to do. It seemed like everyone else was doing it. I had random rants about my personal life and whatever happened to come to mind. Then I switched gears a little when I found a blog belonging to a woman who used her Crock Pot for one year, and posted all of her recipes, good and bad. I started posting recipes as I attempted my own versions of meals I found on her site. I think that lasted about a week. Then I tried to "re-vamp" my blog when my daughter was diagnosed, so I could keep a record of everything that happened. I didn't even get past the reintroduction post.

Sometimes I am great at coming up with ideas for writing projects, but not so great at follow-through. I am hoping to change that with this blog. I don't suspect anybody will really be interested in my randomness, but I am feeling the need to write somewhere, and it just seems like common sense to put it here, where I spend a good portion of my day anyway. My poor paper journal is sorely lacking. I can type for an hour or more and not cramp up, but five minutes with a pen and my hand aches.

I guess that's a little blogging background. Now maybe for some personal stuff. I am 30. I have three wonderful daughters; D will be turning 8 in about 2 weeks, T is 7 and S is 20 months, give or take a few days. I live with my common-law husband, and our 4 furry pets, 2 cats and 2 dogs. We definitely have a full house. I am a stay-at-home-mom (SAHM). My husband is a mechanic/supervisor at a local bowling alley. I sell Avon products, but make no money. My main client is my aunt, AL, and then myself. I get some neat things through there, at a discount, which is kinda cool. I'm hoping that once spring finally arrives I'll have the drive to get out and search for more customers and/or build a team of my own. I am slowly working towards my calling, becoming a doula. For anyone who doesn't know what that is, a doula is a woman who supports a mother (and father if they choose) during labor, birth, and postpartum. There are birth doulas, who usually arrive during early labor, and will stay until about 2 hours postpartum, and there are postpartum doulas, who do not arrive until after baby is born, but they will visit a number of times during a postpartum period, a few times a week, maybe a few times a day, depending on what the doula and family have agreed upon. I want to become a birth doula. My original goal was to become a midwife, but I have since decided that I'm not so sure I can handle the formality of a midwife. There is so much more responsibility there. I want to be present for births, but I prefer the support of the mother aspect of the job.

As for my blog title: Part Time Crunchy, I find that I am sometimes a lazy/cheap cruncher. It would be great to go totally organic, green with everything, etc, but sometimes it really is extra work and/or more expensive! I pay more than double for "green" dish soap than regular soap. I am, however, a totally addicted cloth diaper mom. It is hard not to be when there are so many awesome diapers out there! I started out locally, but as I found more and more Facebook groups, of moms who make and sell their own, I started growing and growing my stash! I don't have all the varieties I'd like, there are some larger names I wish I could try, but I'm pretty happy with what I've got. I find that I still buy a couple of diapers here and there, even though I'm thinking my daughter will be ready to potty train soon. I still breastfeed my youngest. I am amazed at how long our nursing relationship has lasted. I almost gave up when she was just a week old. She was having trouble gaining weight and I caved because I felt like I was starving her (her tummy would actually growl with hunger, almost all day long) and I bought a can of formula. My midwife helped me supplement while building up my milk supply, and it wasn't long before we were back to exclusively breastfeeding. Then we spent two days in the hospital because she was having blue spells (moments where she would stop breathing and her lips would actually go blue/purple). She was diagnosed with reflux and given medication. While in the hospital, we were giving her formula, and then we finished off the bottles when we came home. It was also a time for me to get a bit of a break because breast pumps and I don't mix. Since then, we have been back to breastmilk.

I'm starting to feel like I'm just rambling nonsense. I like to write, but sometimes I just don't have anything important to say! Hopefully I will get more interesting as the days go on.