I know that this post is way overdue. Annie is not doing well and it is has been hard to do anything but be with her right now. Although Annie came through Friday's surgery well enough, within 24 hours, she was struggling again. The fluid that we were hoping would decrease after surgery has come back with a vengeance, and she is again putting out more than a liter a day. In addition, Annie responded to this surgery as she has to surgeries in the past: with lots of swelling. The swelling makes it difficult for her lungs to expand and for the ventilator to give her the size of breath she needs to be well oxygenated. If she gets upset, this only makes the problem worse as she bears down in anger and fights against the ventilator, leading to a very scary cycle that is difficult to break. These issues began Sunday night, and when I arrived on Monday morning, it was clear that Annie was in really bad shape. The doctor wanted to meet with us and discuss where we should go from here. He told us that, as far as they are concerned, there is no hope that Annie can recover. I asked why, in spite of her terrible condition, had her kidneys and blood pressure suddenly improved. He had no answer for this, but told me that it did not matter as the chest tube output had not decreased with the surgery. He encouraged us to think about removing the support that we are giving Annie and letting her pass. He explained that, ethically speaking, there is no difference between putting a breathing tube in and taking one out. That while she is alive, it is because of the artificial support that she is being given and therefore, we might find peace in knowing that her death would be a "natural" one. Maybe that sounds good when you read it in a medical journal, but no journal article can account for what it is to be the mother of a bright-blue-eyed four month old daughter that is SO there. Granted, she makes no sound, but she is still there. She maintains eye contact for long periods of time and listens closely when I talk to her. She has a personality that is patient and mild. She has a spirit that lives in this body and who am I to decide when her mission is done? Her quality of life is not what I would want for any baby, but this is her life and she has known very little otherwise. Interesting, how her life is not viewed as inhumane until the doctors have nothing else to offer her. Of course, we don't want her to suffer; we love her more than anyone else possibly could. We did tell the doctor that if the struggle on the ventilator should continue, we were not willing to stand by and watch her starve for air for days on end; that if that were the case, we would view withdrawal of support as a merciful decision on her behalf. However, we have seen Annie swell many times in the past and watched her recover again and again. The doctor told us that he fully expected her swelling and breathing issues to worsen and never get better. Thankfully, he was wrong, and the swelling has decreased and she is again being ventilated successfully.
And, there you have it: what a fine mess we are in. We told the doctor yesterday, that as long as we can keep Annie comfortable, we would like to give her time and see if she will make the decision on her own. Neither one of us feels comfortable making this choice for her right now and are praying mightily that we will not ever have to. The truth is that we still have hope for Annie; we hope every day that things are going to get better and she will begin an upward climb. I don't think we will be done hoping until she is gone. At the same time, we fully understand that, medically speaking, her condition is hopeless. Finding peace between hope and hopelessness is quite a challenge. A fine mess indeed.