Our sweet Benny is terribly sick. The cardiologists think that maybe his little heart is finally giving up. He has fought so hard through more than three weeks with horrible infections, first in his pic and art lines and then about two weeks ago we found a mysterious lump just below his jaw-line that was the size of an apricot pit. He has been on four rediculously strong antibiotics (two of which are so strong and almost dangerous to use that only the Infectious Disease Specialists Team has authority to order them!) Earlier this week he was beginning to recover, and thankfully he hadn't ever (no matter how scary close he came) had to be reintubated. But Friday night and Saturday morning his heart hit it's limit. He was exhausted. His coloring was extremely grey and modled, his heart rate and blood pressure were terrible, and his lungs were really, really struggling--so back in went the breathing tube, as well as a tube that drains fluids from his tummy because he's been throwing up so much. His chest x-rays show lots of edema in his lungs as well as plural effusions and his heart is just too tired to pump it out without the ventilator. Then the cardiologists ordered another echo. His last one had been on the 19th and showed his EF or the function in his left ventrical (left pumping chamber) was down to 49. 65 is normal and Ben's had been 64 shortly after he got his new mitral valve. But it decreased so much that he was put back on IV medicines to help the ventrical squeeze better. The echo was repeated on the 24th to see if the meds were helping but the EF was now only 20! That is beyond critical. Another heart med was started immediately and another echo was done today. There was no change. The cardiologists have diagnosed him with critical heart failure. The surgeons say there is absolutely nothing they could do or are even willing to attempt; they believe he would die on the table. We have been given two final options. We could try for a heart transplant. It is very questionable if he would be healthy enough to even be considered a candidate and even more questionable whether he could last the up to 10 months it might take waiting for a heart. Even if by some miracle he got a new heart next week, the quality of life for a child transplanted at this age is not good at all. Most newborns don't survive the first year following the transplant and of the one's that do surivive the first year, less than 40% are alive 10 years later, which is about the max life expectancy of a transplanted heart and so he would need a new one. Which brings me to our only other option--to stop giving him support, meaning to give consent to turn off the ventilator and his heart medicines and slowly watch our precious baby pass away. The very thought of it makes me sick to my stomach. Many of the dr's and staff feel, given the other horrible alternatives, that letting him go is the more humane and actually compassionate thing to do. Cody and I wonder how our bodies could continue to exist if we had to make a decision like that. We've fasted and prayed for the Lord's guidance. I've prayed, maybe selfishly, that if our Father in Heaven must call Ben home to Him, that He will show mercy on us, and that his passing will be natural and peaceful and that our angel will not suffer. His suffering, the sadness and exhaustion in his eyes, is more devastating than I can express. Our complete devotion to our children is part of the core of our beings. We love them and cherish them so absolutely that the very idea of not having them here with us everyday feels like torture of the worst kind. I ache at the thought of it. And yet he suffers. And we watch it and hate it. And while we still cling to that thread of hope that he may yet get well and gain strength, it just doesn't seem to be going that way. He is so terribly sick. And so very weak. The situation is devastating, and yet we find comfort and strength in our Lord. He has been with us these 10 long weeks and we have been blessed with many miracles throughout. In addition to the many physical miracles for Ben; Cody and I and our families have been blessed that our hearts have been softened and our focus has changed. Rather than wanting what we want for Ben, or should I say even more than wanting what we want, we want the Lord's will to be done. We know that no matter what happens it will be for the best, and for our good. And of course it helps to know we are an eternal family. Please, please continue to pray for Ben as well as the dr's and nurses who look after him. Also please pray for Jocelyn and Aimee who are the sweetest, most wonderful little girls ever and yet they have a really hard life right now. Finally always remember the many other sick children at Primary's in your hearts and prayers. They sure need it too. I am scared at the anticipation of this uncertain week ahead. It seems our lives will never be the same again.