Woke up to a phone call from the NICU at 4:05 am. Connor had a bit of a rough night. The doctor called to let us know that Connor seemed to be more painful in his belly and his abdomen was still distended like it was yesterday afternoon. They took an x-ray of his abdomen because they were suspicious of a condition called necrotizing enterocolitis, inflammation of the intestines that can cause the tissue to die. The other doctor had warned us last week in our family meeting last week that this was a common condition in micro preemies. The gas patterns on the x-ray didn't confirm the condition but they are going to repeat an x-ray every 6-8 hours to keep an eye on it. NEC usually resolves but they have to monitor for bowel perforation, which would require surgery to fix. They also switched out his blood infection antibiotics for antibiotics more suitable for a bowel infection. Poor little guy. He also has to stop taking any nutrition by mouth for 7-10 days to let his gastrointestinal system chill out. He will be getting total parenteral nutrition by IV instead. Unfortunately, this condition is really painful and he looked like he was crying yesterday but silently because his lungs are not developed enough for him to actually make sound. He had bad reactions to anyone touching him yesterday and overnight, including Mike and I. He actually started to desaturate and stop breathing when I was touching him yesterday :(. His blood pressure was low overnight and he had low hemoglobin again so they started him on dopamine to regulate his blood pressure and gave him his fourth blood transfusion to date. The good news is that he was started on morphine so he will be much more comfortable now and had actually improved a little bit by the time we called for an update at noon.
We decided to take a break from the hospital and not visit today, considering that Connor hates being touched right now and when we visit he doesn't usually sleep, which he really needs right now. We also couldn't get back to sleep after the 4am phone call so we were both dead tired. I've been really trying to be optimistic but the last couple days have been tough. I have been feeling guilty about not visiting today but also felt like I wouldn't be able to go in there without crying which wouldn't be good for anybody. I know that life in the NICU is a constant roller coaster of emotions but last night I wasn't sure that this is the fair thing to do by putting Connor through more tests and procedures. This is not what I thought it was going to be like. I can't hold him, touch him, feed him or change him. All we can do is watch him through a plastic box and hope that the doctors, nurses, machines and medicine are doing what they are supposed to and he will make it through this and he won't have any lasting effects. I love you, Connor. Please get better. <3
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