April 24, 2017

What a week, So we were discharged last monday and Arlyn came home hydrated and switched to Nutramagin fortified breast milk. We followed up with our primary care on Tuesday and decided to do a trial this week with arlyn where we only fed her breast milk to see how she does, if she has weight gain and how she does with bottles. So the beginning of last week started off strong and after 5 days we no longer were using her NG tube at all. She was doing well with medication and we pridefully were able to leave the NG tube out. Today monday we hit a little snag, I don't typically wake Arlyn up to eat on overnights, she wakes up on her own and eats and goes back to sleep. Last night Arlyn went to sleep at 10 after a fresh diaper and then woke up at 0530 still dry. She didn't eat and although she was pretty hunger it made me nervous. By 11am she had only had 2 diapers since 10pm the last evening so I called cardiology and we decided to see how today went, I have a primary care visit scheduled for tomorrow morning. Arlyn is still eating ok but I did notice the vomiting increased a little bit by this evening, quite a bit more than baby spit up. Prior to breast milk only she was averaging 405-445ml of fortified breast milk in a 24 hour time. After with just breast milk she is averaging 605-745ml in a 24 hour time. Today she was able to consume 545 ml. With a normal baby I would just think that today was a day for her to catch up on rest and not eat as much, I wouldn't worry about the incidentals but this baby is not your typical baby. She is amazingly complicated in her own way and I feel like ICU has taught me that the trend doesn't lie. I am hopeful that tonight will be better but honestly I will be waking up at 0000 to wake her up and feed her and again at 0300 just to make sure she is eating enough. I am very worried about Arlyn please say a little prayer for her if you can.