October

October is a tough month for me. I think because we have had quite a few things go wrong in Octobers in the past, I'm always waiting for the worst to happen. 2 years ago Tobin had some issues with a double ear infection and the coxsackie virus at the same time. Neither were diagnosed quickly and the coxsackie took over 10 days to be found. In that time Tobin stopped eating and drinking and was MISERABLE. It was a really rough couple of weeks that ended with us in the ER for IV fluids instead of enjoying Halloween like we had planned. At that time, Jason and I thought what we were going through was incredibly stressful and traumatic and little did we know we had dozens of ER and hospital trips ahead of us in our lives. Tobin did recover with the fluids and with some help from "magic mouthwash" we were able to continue to get fluids into him at home, and get him eating again.

Then, a year ago I was so excited for Tobin to have his first real Halloween since he was robbed of the experience the year before. We had the same costume (which he never wore!) and it still fit. Perfect. I went to Tobin's school, with newborn Oliver in his stroller , and helped pass out candy to all the kids and really enjoyed the (cold and rainy) Halloween parade. I was looking forward to taking Tobin trick or treating that weekend with a cute little baby in his pumpkin onesie to tag along with us. When I got home from the school I sat down with Oliver and he had some milk and decided to take a nap. He looked so peaceful and quiet, but felt very warm. I started looking around the house for a thermometer and realized I only had an ear thermometer and it was too small to fit into his ears. So then I dug around some more and found an old rectal thermometer I had bought when Tobin was born. The batteries were dead. I sat around for 10 minutes trying to figure out if I was over reacting or if I really needed to check his temp. It was pouring rain and Oliver was not the best traveler at the age of 3 weeks. I didn't want to take him out and wake him up because I knew he'd scream in the car. So I finally called a friend and asked her to pick me up a rectal thermometer and bring it over. About 30 minutes later, she did and we got the reading of 101.6 which is way too high for a newborn. I called the pediatrician who recommended we go straight to the ER. I didn't realize that when a newborn has a fever they do a spinal tap, and take blood and urine to look for infections.

As we arrived at the ER Oliver woke up and had one of his signature screaming fits, ending in a giant messy poop out the back of his cute little pumpkin onesie. They quickly undressed him and then PUT HIM UNDER A HEAT LAMP in the triage room. Apparently this is their protocol, but perhaps they didn't realize he had a high fever? As he got warmer and more red I mentioned something to the team and they took his temp again. Over 104 at this point. After they took him out from under the lamp and gave him some tylenol he began to cool down a bit. It took them 2 tries to get the catheter in and then they asked me to step out for the spinal tap. Oliver looked listless as I walked out of the room and I had a brief thought that I might never see him again. I immediately starting crying and called a friend to pick Tobin up from school so that Jason could leave work and come straight to the hospital to be with me and Oliver. They ended up admitting Oliver that night and the spinal tap results showed meningitis. It was the viral kind, not bacterial so it was "less serious" but we still had to stay in the hospital, in isolation, for 4 days. We never did figure out how Oliver got meningitis, but were only told that it could have been any virus that entered his body (even the common cold) and spread quickly because newborn immune systems are so risky. Oliver appeared to be doing fine and we were able to bring him home within 4 days. We will never know exactly what the meningitis did to his brain stem. There was no visible damage found at his MRI at 5 months but I still worry that something happened at that crucial stage of development that might be a contributor to his seizures or his lack of development. The question will always remain: Was it the meningitis, the CDG, or some combo that triggered the infantile spasms?

This all happened last year during Halloween weekend. Suffice to say we did not get to do our trick or treating as a family with a cute little baby in his pumpkin onesie and Tobin the turtle ringing doorbells. However, Jason did get to take Tobin out with his Papa Frank and they had a great time while Mom and I stayed in the hospital with a tiny little newborn in a hospital gown. Recently I packed up all of Oliver and Tobin's old baby clothes that they have outgrown and sent them off to various friends to use for their babies. The one thing I couldn't get rid of was the pumpkin onesie that Oliver was wearing that day we went into the hospital. I don't really know why but it seems to represent the day our lives changed forever even though Oliver wasn't diagnosed with IS until over 4 months after that day.

As Halloween weekend approaches again I find myself wondering what kind of holiday we're going to have this year. I keep holding on to that image of two parents and two children trick or treating around the city, enjoying a nice fall evening. Maybe this year will be our year.