Our New Normal

Waiting for radiology

We've been to Primary's three times this week to have Clara's NJ tube replaced. It keeps getting clogged, probably from liquid Tylenol and other thick medicines. We've now learned to flush with extra water between doses, and I even tried to flush with Coke once but it weirded me out too much.
The process of having this tube replaced includes a full check of vitals. Clara is opposed to cold thermometers under her arms, tiny blood pressure cuffs on her legs, and being weighed naked. However, she really likes the firm mattresses in the rooms and having bright lights shined in her eyes.
When radiology is ready, I carry her to the x-ray room. I lay her on a flat, hard, towel-covered table and remove her onesie or shirt, but not her boxing gloves because she's dangerous without something covering her nimble fingers. We all put on those heavy lead aprons, and they take a picture of her to see where the tube currently is, make sure there isn't anything weird going on.  (Once, it was in such a strange place that the doctor asked if her anatomy was shaped right, though we later realized it had just found a path of its own rather than the expected track. To quote the doctor, the tube is mightier than the bowels. Thought you should know.) Once the new tube is ready to insert (lubed, with a wire inside to make it easier to guide), they remove the stickers from Clara's face. She HATES this a lot, and I have to hold her legs to stop her from using them to push herself off the table (or kick someone. She would, I bet.) Once they even strapped her legs together to stop her from flailing too much, it is just terrible to watch. Then they put the tube down her nose and watch the x-ray to make sure it goes to the right place. Once the tube is placed, there is the additional torture of keeping her calm enough to reapply tape and padding to her face. She gets so upset during this process that the techs often don't do a great job of getting any of it placed right, so Mom and Dad get to revisit the process a day later when she pulls it off half way. And when we finally get home, she finally sleeps, but her little throat has been through so much from the crying and the tubes going in and out  that she sounds raspy and snorty, so we end up being awake all night checking to make sure the noises coming from her bassinet are just her strange snores...

We have another swallow study next week, and we hope hope hope she passes and we can move back to the NG and other feeding options. One of the nurses and I talked the other night about how the instinct to feed your baby is so strong that it can override all other things. It is how we have survived as a species, the mom will focus on taking care of her child and ensuring she has food. These stupid tubes are helping fulfill that need I have to feed Clara, in some ways, but it is so hard to not have more input, more control, over keeping her strong and growing. I have to rely on this process and a team of doctors and nurses to help when things go wrong, and it really feels unnatural. I suddenly feel a kinship with Alicia Silverstone and her choice to feed her baby pre-chewed food, like a bird. No, that's gross, I wouldn't do that. But I get it. I'm glad the feeding tubes exist, and cannot wait to banish them entirely from our nest!