We have spent 238 days in the hospital. Hard to believe. But, I think we have finally found our miracle drug....omegaven. This has been such a great week. I got to hold my peanut for 1.5 hours on Tuesday. It has been at least 6 weeks since I had held my daughter. Way too long. She has been tolerating her pedialyte like a superstar. She has been pooping. And yesterday her eyes were as wide as they have been in awhile. She was staring at her block hanging over her head. I grabbed it and moved it from side to side and up then down and she tracked it the whole way. This may not seem big to anyone reading this. But we had another head ultrasound last week and it showed progressive atrophy of her brain. So, this is huge. Also, Tim and I have been suctioning Molly's trach and doing trach care. We have a checklist of things (these 2 included) that we have to perform before we take trach class #2 which is trach change. I am scared. But I was scared of trach care and it no longer seems scary and that is after only 2 times.
One last piece of news and a huge piece is that Molly's direct bilirubin has gone down 4 points in the last 2 days. 4 points!!! I think we are finally over the spike in levels we expected to see at the beginning of omegaven. I think it's all downhill from here. I am hopeful! And hopeful feels good.
Pictures include Molly's kitty slippers from cousin Alani, Molly block watching, Mommy and Molly, Molly's beads of courage, and Molly blowing the biggest mucus bubble I have ever seen. Enjoy!
No comments:
Post a Comment