Being a mother of a child in the hospital requires an even different role from us though. We help hold them down through IVs and painful tests and we kiss away their tears when it is all over. We hold their fragile bodies tight against us amidst the tangled web of tubes and wires emerging from them. We sleep enough hours to count on one hand night after night and try to look refreshed for the early morning display of medical personnel making their visits. We study the hypnotizing bell curves of pulse and respirations on the computer screen at the bedside. We only sneak out to eat when we are sure that the child is good and asleep, for fear that they will miss us when we are gone.
It is a different role in a sense, yet it is all wound together in one word: motherhood. It may not look the same for everyone, but the feelings and emotions are united together. We are mothers, and we will do anything for our children when they need us most.Nathan is still in the hospital. While the morning started out looking pretty good, he tired quickly and slept for a few hours. They turned down his fluids sometime after lunch in hopes that he would start to drink more and be well enough to head home tomorrow. He was looking pretty good...still shaky and having some balance issues when standing, but looking perkier.By mid-afternoon, his heart rate was becoming more elevated, right along with his respiratory rate, both setting off his alarms countless times. I knew something was up. He has not had a fever since yesterday, so I was surprised to see that he had indeed spiked another one. He was looking pretty puny around this time as well, so the doc immediately turned his fluids right back up again. We'll keep him going strong on fluids through the night and reassess tomorrow as to when we should try to wean him down again. He has taken 2 long naps today, so his body has definitely needed the rest.Hopefully tomorrow will go well. We are meeting with the geneticist tomorrow morning, and I am anxious to see what he thinks about some of the metabolic oddities Nate has recently started exhibiting in the past few months. I had a lengthy meeting with the genetic counselor today, and I was amazed at how much Nathan has gone through in his short 3 years of life as I had to retell his medical history from the months I carried him inside of me. I have forgotten about some of it. I know I said this last time, but he sure is a courageous little guy.(pictures taken last week on his bunk bed after a nap)