Actual Age: 31 weeks
Adjusted Age: 19 weeks
Our faith has truly been tested this week. Eden is definitely considered unstable right now. She had a few episodes this week which required that she be bagged and her O2 needs have been 100% or more. She is touchy and cannot handle even the slightest stimulation. She had a complete workup for infection and everything came back negative. We believe that this horrible pulmonary hypertension is rearing its ugly head. She blows iv's once a day so she's having a more permanent line put in today. Her pain medication is at a max and she is sleepy most of the time. We have decided to move forward with the cardiac catherization on Thursday which should give us some additional information about her PH and how severe it is and how it will respond to medications. Please pray that this goes well and that we can get her to a stable point. We are very worried about her and hate to see our sweet little girl in pain.
Reagan is at home and doing well. Her g-tube feedings are challenging as we need to watch her closely to make sure she doesn't aspirate if she spits up. Her little tummy isn't used to having that much milk/formula so its just something that we have to work through.