At A Loss

Easton is once again in the hospital. We have now been here for 5 days. He has had off and on bloody stools for three weeks. We have been working closely with our pediatrician, but we both agreed it was finally time for an X-ray. After an appointment with a doctor, and discovering he had a few fissures, we went to Primary's ER. X-Ray came back in the red for NEC. We were admitted at 4AM. He has been on IV fluids for five days, nothing by mouth, not even meds. We started to have issues with blood pressures so they put him back on his bp medicine, but now having issues with his heart rate. He doesn't go below 70 at home. Night before last he was in 60s, last night, hitting 50s (shouldn't be below 60), and tonight hitting the 40s. We aren't currently on the cardio team and there are all new residents so it is kind of frustrating. They say he looks good so they aren't too worried, whereas I have been told not below 60 and that 40s is super low, especially during a deep sleep. I didn't sleep well last night and probably won't tonight cause I am worried. Frustrated a bit. Sick of being here at the hospital... Me and Easton want to go home! We miss Cooper and Chris. We miss our home and our own bed. We were just getting the house back together and having home cooked meals daily! 

I took Easton for a walk in a wagon today. We needed out of this hole in the wall. When I told a lady he was born with half a heart, she said, "Oh, that's because his wife has the other half." Made me tear up. I love it! I gave him a bath and got all the old stickies off before we have to put the feeding tube back in tomorrow. He is such a handsome boy. Everyone loves his eyes and his cheeks! I love kissing his cheeks! 

We also got a call from the Milk Bank today saying we can no longer receive breastmilk unless we pay the full price. That would be about $ 5000 a month for the next three months--- longer if we can't get him off this feeding tube. Obviously that is something we can not afford... Who can? They said we can pay it and try to get insurance to reimburse, but primary insurance says it is out of network since out of state. Thing is it is the closest milk bank. All the Utah hospitals even get from there. Secondary insurance won't reimburse either cause out of state. So, here I am wanting to do what is best for my child. I'll do anything, and yet I can't do anything. I've hit a wall. Doctor does not want us using others milk that isn't pasteurized. I am tempted to just use, but would hate if I caused more problems for Easton. I am not sure what we are going to do work liquids for him. I will speak with GI tomorrow. 

So other than Easton's smiles, it has been a rather gloomy day. Just keep swimming.