Day 20

Updating here is so much harder than I expected. My days are so insane that it's not easy to find the time. I wake up between 6-8 depending on when I last pumped and immediately pump again. Then I eat breakfast and maybe take a shower. Most mornings I leave the house between 10-11, then get to the NICU around 11-12. If I get there by 11:30 I do her feeding then pump again, and if I'm late then I immediately pump. I have lunch right after that, come back to wash pump parts, then cuddle my little girl til her next feeding at 2:30. I go through the same routine: pump, wash, snuggle, and then feed at 5:30. Then I either pump and leave, or just leave and pump the second I get home, usually around 7:30. Then I eat dinner and try to spend some time with Noah. I'm pretty sure he barely remembers I exist right now. Most nights he calls me grandma, and then I feel like I'm failing him for a good hour before I pump again and go to sleep. So yeah, finding time to write here is not always a priority.
Elodie is fairly status quo right now. A gastroenterologist saw her Tuesday and discussed all of the possible causes for her "green jaundice." He explained that 40% of the time they run a ton of tests, find nothing, and it just goes away with time. The other 60% of the time they find a problem. There is a liver disease that runs in my mom's family so they tested her for that. Her result was just barely in the abnormal range, which can occur in anyone whose body is currently stressed. They will run another test in a couple of weeks to look deeper, but the GI doc was not overly worried. He also mentioned a syndrome called Alagille Syndrome. It is often associated with bleeding disorders, vision issues, heart defects, spinal problems, and liver dysfunction. In order to rule in or out, they have done many tests. Her heart and spine look normal, and next week we will check her eyes. However, vision issues are extremely common with hydrocephalus, and the area where her blood clot is could impact her vision, so even if they find something it may not indicate this syndrome. So really no answers on the liver yet. She is having an MRI with contrast today to look at the blood clot. I hope we get good news there! She will also have blood drawn to check her direct bilirubin and GGT (liver enzyme) levels, and I hope we see a drop! Her poop has turned more yellow this week after having been a pale green color, so that indicates that her liver is passing more bile. Fingers crossed!
Eating is still a slow and painful process. She is getting better at nippling more of her bottles, but each time they need to use her NG tube, it starts her over again. The goal is that she takes 8 feedings in a row without needing any through the tube (called gavage), and then they will pull the NG and she will have to continue to eat well and show weight gain. The hard thing for her is that she's easily exhausted. For instance, yesterday she hadn't had the gavage all day, and then before her 5:30 feeding we bathed her and changed her port where the blood thinning meds get administered. Poor baby girl got completely tuckered out by all of that and promptly passed out after eating only 1/6th of her bottle. The rest was gavaged. So the clock starts over. I'm encouraged that she is more consistently eating entire bottles, but it's hard not to get completely discouraged at times. Every single nurse, doctor, and specialist we have seen continues to stress that this is the HARDEST part of many babies graduating from the NICU, but everyone is confident she will get there. We have discussed the possibility of a G-tube, but I really hope to avoid it. She's had enough medical procedures in her short little life and the fewer the better.