Actual Age: 24 weeks
Adjusted Age: 12 weeks
Yesterday Eden had two episodes which required her being bagged (heart rate drop and needing 100% O2). The problem was finally uncovered after an echocardiogram was done showing that her pulmonary hypertension has gotten worse. Her MD's are calling this an acute pulmonary hypertension crisis. She had to be transferred back to the NICU late last night because she was unstable and needed to be restarted on nitric oxide for the PH. She spent the entire day today heavily sedated. We are understandably devastated, but had some lengthy conversations with her MD's and developed a plan of action. She is on an Rx for her PH as well as the nitric oxide, the plan is to decrease the nitric and increase the Rx then repeat her echo in a few days. Her MD's have every reason to believe the PH is reversible as it has been under control in the past with the nitric and Rx. She also has to continue growing until she's big enough to get the PH under control and try the home ventilator again. Eden will be in the NICU for quite sometime.
I had an absolute breakdown this morning and had to take off work to see her and make sure she was stable. Scott also was at the hospital for most of the day. The ache that we have in our hearts is too much to even handle some days. We want our girls healthy and home so badly. We want more than anything to take Eden's pain away, make her better and bring her home. It's just not fair that she's so tiny and has already battled so much for her age. We would take on any of her pain and suffering if only she could be better.
It's also a very difficult feeling to have one baby moving forward so well and to have one taking so many steps back. Reagan's discharge should be this weekend! We're thrilled, but wish we could bring Eden home as well. We know that only God knows that date and He is laying His healing hands on our little miracle Eden. Please pray that Eden will heal quickly and grow strong and healthy. Also pray that Reagan's transition to home with be great.