at peace with the next step

Without the transplant, it is extremely unlikely that Malachi could survive a major open heart reconstruction without a major infection, especially because he has two open stomas (holes) that are easy risk of infection because of his trach and his G-tube. We are out of options. So then it becomes a matter of still aggressively treating Malachi by keeping him on a ventilator and his 20+ medications a day and putting him through surgeries that he won't survive while in the meantime living day-to-day at the hospital--there is also no guarantee that he will avoid infection before he is even big enough for the heart reconstruction--or making the decision to change our plan of attack and start keeping Malachi comfortable and removing artificial life-sustaining devices.

Meeting with the doctors today only confirmed where John and I stood on Malachi's treatment. The overall opinion from the medical community is that Malachi is out of options. And the one option (that was a long shot in and of itself-transplant) is out of the question. God clearly shut the door and just reiterated where we were at from an earthly standpoint. They had basically decided to withdraw Malachi from his ventilator, but were basically giving us the parents a veto option. Clearly, what is in Malachi's best interest is that of being whole and at peace and in the direct presence of his Creator. As hard as it is to grasp all of what is going on right now, John and I are thankful.

Through the tears and pain and grief, we are thankful. We are thankful that God has given us peace about what must come next for Malachi and that we can accept the next step in His plan for our lives--as unimaginable as it may seem. We are thankful that Malachi will be hole and able to fully see and fully hear and play and not be poked or suctioned or hooked up to any monitors. Most of all, we are thankful that God allowed us seven months with our beautiful baby boy and the assurance we have in Christ that we will one day be reunited.