Yesterday Reagan had surgery to remove her PEG g-tube and have it replaced with a easier to use Mic-Key button g-tube. It is like a small valve button that can be opened and closed, it's attached with a balloon inside and will be replaced every 3 months. She also had an echocardiogram and chest x-ray done while she was in recovery and also 6 month immunizations. She started out the day mad because we had to wake her at 5:30am to get to the hospital on time. She wasn't at all happy about being taken away from her Mom and Dad and then when she came back from recovery we could hear her whining while she was being wheeled down the hall.
Her surgery went well with no complications, she had to be intubated so her throat was very sore and hoarse. Poor baby. Her cry was very hoarse for the evening. I think the impact from the immunizations was even worse though. She literally whined all night long, its like she couldn't get comfortable. We gave her plenty of Tylenol but poor baby just couldn't sleep well. Her echo was normal and showed no signs of Pulmonary Hypertension.... my heart aches just typing this word. I'm terrified of it and really hate to have it even come up in conversation. We met with her Pulmonologist who said her breathing seems much improved, but he also said that we still have to monitor her regularly for PH. Again this is terrifying, we really thought we were out of the woods but it turns out that she is still at risk for PH. We forget just how fragile she still is, she has chronic lung disease and this isn't something that just goes away. It takes LOTS of time to grow new, strong lung tissue. So we continue to pray that her lung function improves. For now she is on O2 and this is our life. We have accepted her tubes and know that this is what is best for her. We will do whatever it takes to keep her healthy and strong. Please pray that Reagan continues to grow healthy, strong lung and she stays healthy.
Yesterday was difficult for Scott and I as well, we were asked how Eden was doing by someone who didn't know.... For me, the hospital is hard to go to because I think she's still there. The memories are so strong, Children's Hospital was Eden's home for almost 8 months therefore it is always in our hearts.
Finally, I was reading a book about grief that discussed the stages of grief. Shock is one of the first, and it mentioned that if you think you can talk to the person or simply go see them and you can't believe that they're gone then you're in shock. I still feel this way, like I said I think we can just drive to south Minneapolis, park, get our nametag from C or D, take the elevator to 3rd floor, into the NICU and down the hall to her room where she'll immediately smile at us because she knows her Mom and Dad. It doesn't seem like I CAN'T do that. But the heartache is so strong when I realize that this is reality and I will never again see her. I miss Eden more than anything in the world. Losing my baby is the worst pain I have ever experienced. I love you so much Eden.