Actual Age: 3 months, 2 days
Adjusted Age: 1 week, 4 days
We never thought we'd being dealing with what we are right now. We never thought we'd hear the words we heard tonight. We assumed that after a few months our family would be home and the girls would be healthy with all of this behind them. We had a care conference with a Pulmonologist and our Neonatologist tonight. We are currently dealing with the heartbreaking decision of doing tracheostomies for both girls. For Eden this is a matter of life or death, we honestly thought she was "out of the woods" but after learning how badly chronic lung disease can be in a baby with IUGR we realize that this is our only option for her. We were 100% caught off guard hearing that Reagan may have to be trached as well. We probably were ignoring what we knew in our hearts- that the steroids are not working and she is still requiring too much 02 to breath on her own. The trach option is something that will have to be for approximately 1-2 years. So right now we go home to decide what to do (even though we already know what we need to do).
Please know that when you ask us if we're OK- the answer is NO. We are having trouble understanding why... why is this happening to our beautiful innocent girls, why is this happening to us. Our faith is wearing thin and we wonder sometimes if God is hearing our prayers. We don't feel like we can deal with this and our hearts are broken. I don't have anymore words to write so I will close here, but please just pray for us. Thank you.