Arrangements

Arrangements have been made for Benjamin's funeral. The visitation will be held tomorrow, Monday, June 1, from 5-8 pm at Bopp Chapel. The address is 10610 Manchester Road Kirkwood, MO. The funeral Mass is at Mary Queen of Peace at 10 am on June 2.

The last few days have been a blur. After Greg and I arrived at the hospital on Friday, the CICU doctor was waiting for us. We had already seen all of Ben's labs. His creatinine had risen, as had his bilirubin. His urine output had fallen off overnight. His blood counts, his hemoglobin and platelets, had fallen again. He had a slight temperature, and his infection counts were high. We spoke to the doctor at length, and as I mentioned, we had decided to make him a DNR. We also agreed that if one more organ system became affected, there would be no way his poor little body could heal. And the reality was, the likelihood of his kidneys and liver getting better with the way his heart was failing was very small. But, I was still holding out hope that he would look better by the next morning.

As the day moved on, though, it became more and more obvious that he was getting worse. I called my family to come and see him, and I asked if we could hold him. Greg and I spent a lot of the afternoon just snuggling with him. He was so peaceful. They had increased his pain meds, and he was no longer struggling to keep up his sats. His blood pressure and pulse were getting lower, and his heart had started to skip some beats. Still, I had not given up hope. But then he began suffering from internal bleeding. We were devastated. We knew what this meant.

We stayed in the room with him all night. He slept comfortably. We did not. At 4 am the nurses woke us to let us know that his blood pressure was even lower. His am labs came back, and his hemoglobin and platelets had fallen even lower, making it obvious that his bleeding was getting worse. Dr. Gazit, the CICU physician from the week before, came in to speak with us. This man was so caring, and he had given me such hope the week before, telling me that he had not given up on Benjamin. He was the one who made me believe that there was a chance that his kidneys and liver could recover. But when he came in, it was obvious to him, and to Greg and I, that there was nothing else that we could do. In fact, at this point continuing treatment would just prolong Benjamin's discomfort. We made the difficult decision to let him go.

We continued with comfort measures, and he never was in pain. Either Greg or I held him for the next eight hours, after everyone in our family came in to say goodbye. I dressed him in one of the few outfits that I had bought for him. I was scared before he was born to buy anything, because I was scared that he would never come home. But I had one sleeper that fit him perfectly. I wrapped him in his blanket, and we enjoyed holding him close. After he passed, and we were spent our time alone with Ben, Dr. Gazit came and prayed over him. What a wonderful doctor and person. We were so glad that he was there.

For five weeks I have spent every moment at that hospital, either in person or in thought. The CICU is a surreal place. Behind those doors is an alternate universe. Three children died there in the past week - Drew, Ben and a sweet two year old named Elijah who spent his life also battling hypoplastic left heart. The grandmother of Drew and I spoke of this at Drew's funeral. When you are living this, it is hard to be outside of the doors of the CICU, to see everyone else living life so normal, without this pain. I am not sure what I am going to do after the funeral. As I said, every waking moment has been spent trying to save Ben. Now all I can think about is that he is gone, and that I will never get to see the wonderful boy that he was going to be. The pain is unbareable.

I want to thank everyone who has been following this blog, for all of your prayers and support. The gifts, the e-mails and comments, those who came to pray over Ben, words cannot express our appreciation. I know how much everyone cares, and how everyone wanted just as much as we did, for Ben's journey to end differently.

I never ever, not even the last day, believed that this would happen. When on December 19th we learned of Ben's heart condition, I had to believe that he would be OK. These last six months have been very difficult, to be pregnant with a child that you don't know will survive, to deliver babies for a living, to be a doctor and know too much about what elevated creatinine levels mean. But, to be a mother is about being there and loving your child no matter what, to have hope, and provide comfort. I think I did this.