The week started off good.... but we've had a few setbacks, again. Eden was taken off the nitric oxide (for her pulmonary hypertension) and did really great until Friday morning. She was in low O2, alert, active and we worked on developmental activities with her. Friday morning she abruptly went from 35-40% O2 to 85-100% O2. The high O2 is not good for her respiratory wise or for her eyes. We tried to uncover the reasons for the change, her trach was changed, ran blood tests for infection, urine for infection, chest x-ray for possible collapsed lung and other monitoring. She was restarted on the nitric oxide and antibiotics for infection in her trach. Her O2 is coming down, but she still seems a little touchy and needing lots of rest. We are praying that her time on the nitric will be short and that she can get back to normal sweet Eden.
Reagan also had a touchy few days, she had a tummy ache and reflux issues on Friday and wanted to cuddle with her Mom and Dad all day. She was irritable and restless from the pain in her tummy. Her breathing has also been a little harder. We are still walking the fine line between the steroids working and not. Some of her providers feel that she should have a trach while others feel that she's going to grow strong and not need the trach. The waiting is killing us, we really just want answers and her response to weaning her steroids should tell us. We also want to do what's absolutely best for our little girl, so the decision will be hard no matter what. With Eden the decision was very clear- she needed the trach to live, with Reagan it's not so clear.
This week has been challenging again, we so just want to make some forward progress. We continue to depend on God, we know that He is in control and will make everything OK. Scott and I were comforted by a song that we listened to this week by Kerrie Roberts, the chorus says:
'No matter what, I'm gonna love you. No matter what, I'm gonna need you. I know You can find a way to keep me from the pain but if not, if not I'll trust you' (http://www.youtube.com/watch?v=OA3MSqufJP4).
Scott and I are in pain, hurting that our little girls can't be healthy and home with us, but we will continue to trust in God and He will get us through this. Please pray for our little girls this week....