Chapter Twelve: Take care of your body it’s the only place you have to live in.
Alivia had another appointment, and as always everything was going great. She was acting normal and had no signs of pain or discomfort. There were a couple of odd habits she started showing, which would always make us question if her head was doing ok. (Let’s get real, anything she did new, made us question if it was the shunt). One was pulling her hair, she would do it when eating, or when she was getting ready to go to sleep. We started noticing that her shunt line was raised at the head a little bit. I know that they said you would notice the shunt a little, we just figured it was normal. Muffin always made mention that it seemed off, but I figured she was little and it wouldn’t be as noticeable when she got bigger, or when her hair grew in. Wendy said to keep an eye out on it, it was not too long after the surgery, and her mood was good so no reason to panic yet. Her 6 month checkup went awesome as well, 16.7 pounds and 26.5 inches, she was growing and happy.
Over the next couple weeks I watched her head like a hawk, some days I would wonder if it was getting bigger, others if it was shrinking. I would text Wendy constantly to show her how the shunt was looking. Google decided to come out again, and I would spend many hours reading and looking for answers. Lots of articles again were making us feel like something was not right. Well December 22 Merry early Christmas! We had another appointment, and Wendy decided to go send us for a fast MRI. Nice thing with the fast MRI is they don’t have to sedate the baby. Alivia was still so little and curious, that she barely flinched and they got the pictures within a couple minutes. The MRI showed that Alivia’s cerebral fluid was draining around the shunt not through it. It raised the skin around the shunt and the fluid was making a pocket, instead of running through the device. We were instructed to keep Alivia elevated for the next couple weeks. She was not showing any signs of discomfort so we would wait a little to see if elevating her would help. I wasn’t buying it. Google scared me to believe we were heading into surgery #2, and sure enough Wendy said most likely we should enjoy the holidays and get ready. We were looking at a surgery early January unless something happened before then.
Just going to mention, it is not fun keeping your baby elevated for weeks. We wanted to put 110% into trying to avoid surgery 2, so Alivia was elevated at all times. No playing on her back on the mat, no tummy time, and even when she slept we had a cocoon made out of my schnoodle under her sheets which kept her up. We had such a hard time creating something for her to sleep in. I was going into her room every couple hours to make sure she was ok. We had the sound, video, and movement monitor (thank god), but I still would check up on her. I felt so worried she may roll over or be uncomfortable. Uncomfortable she was! Especially 2 weeks of our contraptions to keep her up, and 2 weeks of not lying flat on her back. I knew by the way she was acting that she was fed up and tired of all the different positions we had her in.