Hoping for a Better Day Tomorrow...and Always for that Matter :)

9:16pm   This is all new to us. Maybe days like this with your baby in the NICU are normal. I'm hoping not. It just seemed like it was one bad thing after another today. First the news about her seizure-like symptoms today (which they called tonight and said neurology recommended going ahead and putting her on an anti-seizure med for this, just prophylacticly since they can't do any further testing right now bc of the type of vent she is on; so they can't confirm the seizure yet, but they want to prevent more if it was one). During the day, she wasn't doing as well keeping her O2 sats up even though they kept bumping up her O2%. Because of this, this afternoon they started her on nitric oxide through her breathing tube to help better dilate the lungs where needed. The chest x-ray looked about the same, which was good news, however this was likely the case bc they have decided her main issue is her heart. Today's echocardiogram was worse. They have diagnosed her with hypertrophic cardiomyopathy, which initially was only severe in the left ventricle of the heart, but today's echo showed it is now severe in the right ventricle, as well (her prior echo showed it only being moderate on the right). So they believe her heart is causing all her symptoms. Now they will need to focus more on the heart, which will take some of the focus off the lungs. They want to discontinue the lasix so they can keep better fluid within her heart, bc the ventricles need fluid to work more effectively. They are starting her on a beta-blocker for her heart, hoping it will help. They want to see how she resonds to this.

This was a rough day. Was hoping for better. Hoping those baby steps of progress start again...and my constant prayer continues to be 'Lord just please heal her, ' but we talked a lot more today, as well. I just feel so bad for her. She looks so uncomfortable and I just want her to feel better so she can come home with us. I want God to heal her NOW, I know this can happen and hold onto hope for this. They told us it could be months, but we continue to pray for less than this. Please pray the Lord our God heals her precious little heart and she continues to progress from there. Thank u! Love and hugs to u all.