Friday, November 13, 2009


After feeding Georgia at six am, I sat nervously waiting for Shane to come back from the ICU to get me. He arrived at about twenty minutes to seven and we took Georgia down to the nurses station so that we could walk Calvin to the operating room. My heart was thudding in my chest as Shane wheeled me downstairs and the tears were already starting to form. After scrubbing our hands, we headed immediately for Calvin's bed. Painfully, I rose from my wheelchair and walked over to the rocking chair beside his bedside. Wendy put Calvin in my arms and we snuggled for about ten minutes. All too soon, Dr. C came and told us they were ready for him. Shane took Calvin from my arms and we walked the short walk through the ICU to the operating room doors. We stood there for a moment, kissing him and telling him how much we loved him and to please be strong and fight for us. My heart was breaking as we handed him over to the nurse to take him into surgery. She told us to go back upstairs and that it would probably be at least four to five hours before we heard anything.
Back in my room, I broke down sobbing. Shane held me close and the two of us drifted off to sleep in my hospital bed. A couple of hours later, I awoke to feed Georgia and have my daily checkups with the MFM doctors and the pediatrician. We had asked Mandy, the cardiac care nurse involved in Calvin's case to hold a special meeting for our family at eleven o'clock that day, to explain what Calvin was facing and what was happening to him. I had been afraid for so long that he would die, but everytime I brought up how serious his defect was, I felt that Shane's parents either didn't take me seriously or were so positive that nothing could happen that they didn't want to talk about the what if's. When Mandy came to get Shane's parents and Greg and Trisha, I tried to rest and not worry about what was happening with Calvin. It was impossible to do. Both Shane and I had been existing on about two hours sleep a day since the twins were born and although I was bone tired, I was so worried about my son that sleep wouldn't come.

The hours seemed to pass so slowly. Both Shane and I were restless and anxious. At about the six hour mark, when we hadn't heard anything, Shane decided to go down to the ICU to see what was going on. At the ICU, Shane spoke with Mandy who had been told by Dr. C that everything was going extremely well and that Calvin was doing great. Shane had just come back to the room to report that our boy was doing fine when Dr. S walked in with a serious look on his face. Calvin's heart was so traumatized by the magnitude of the surgery that when they had gone to restart it, they realized the right ventricle was unable to squeeze properly enough to keep his blood circulating. He then handed over the consent forms to have Calvin placed on ECMO (extra corporeal membrane oxygenation), in other words, life support. Immediately I turned on Shane and started screaming at him, calling him a liar for telling me that our son was okay. Mandy came running into the room at that point, saying that Shane had no sooner left than Dr. C called to say that Calvin needed to be placed on life support or that he would die. Dr. S held out the papers for me and I shook my head, "No, I can't, the other doctor said that ECMO is a bad thing, " I said crying. "Would you do it if it were your child?, I asked Dr. S. He looked directly at me and very bluntly told me, "Put it this way, it's the only chance he's got," he said. Shane literally grabbed the paper and pen out of Dr. S's hands and signed. As they left, Dr. S told Shane to read through the complications so that we would be aware of what could happen and they both agreed that it would be best for me not to know at that point. I was a sobbing heap in the bed, terrified for my son.

Originally told that Calvin's surgery would take eight hours, we were at the fourteen hour mark before he came out. At eleven o'clock that night, we finally got the call to come down to the ICU to see our son and have a consult with the surgeon, Dr. C. Greg and Trisha came down with us to the consult room and we waited for what seemed forever for Dr. C to come in. I was in a complete daze by then, from worry, from the drugs I was on for pain, from lack of sleep. I was nearly out of my head. I needed Greg and Trisha there to help me understand and remember what was being said to me about Calvin's condition. Dr. C told us that Calvin's Truncus was a true case of Type 3, that his pulmonary arteries came off the trunk at a 180 degree angle. There was no black and white, he was a true rare type 3. He also told us that the bovine artery and the plastic conduit took up so much of the muscle of the right ventricle that it wasn't until they had tried to start his heart again that they realized how bruised his heart muscle was from the surgery. He explained that Calvin was bleeding alot right now and that he had needed nine units of blood during his surgery. He was very concerned about the bleeding and being on ECMO didn't help because the machine had to be continuously infused with heparin to prevent blood clots from forming inside the tubing. The blood thinners were making Calvin bleed all that much more. That said, Dr.C felt that by keeping Calvin on ECMO for a few days would give his heart a chance to rest and heal and that hopefully, when they tried to restart it again, it would beat properly. When I asked Dr. C how long Calvin could stay on ECMO, he told me that usually by seven days they know whether the patient will recover or not. He also told us that if Calvin came off ECMO and then needed to be put back on it for any reason, that his chance of survival dropped to thirty-five percent. Right now we were looking at sixty-five. Dr. C also explained that Calvin had so many wires, tubes and monitors coming off him and that with his chest left open, it may be hard for us to see him that way. He said, "Just look at his face, touch him and talk to him. Let him know you are there." He explained that Calvin would not be conscious, that they were keeping him asleep to minimize his pain but that for his sake, we needed to let him know we were there.

Shane and I finally got to see our son at midnight, seventeen hours since we took him to the operating room doors. As we approached his bedside, which had been moved beside the operating room just in case, I knew that our boy had been through so much. I felt Shane's knees start to buckle beside me and I held him up so that he didn't faint. Seeing Calvin like that was too much for Shane and he started to cry. Telling me he couldn't stay, he left to go outside and get some air. I walked over to our son's bed and looked down at him. He was bloody and lying there so still. It was absolutely heartbreaking to see him like that, but I had to see him. I had to touch him and tell him I loved him and kiss him and let him know that mommy was there. I also had to see him for me, so that my vivid imagination didn't drive me crazy wondering just how bad he looked. I had to see him just in case anything happened. I looked at Dr. C who had just spent seventeen hours operating on our son and who was now perched on a stool by his bedside. "What now?" I asked. "Now you go and get some rest and we wait, " was his reply. "What about you?", I asked. "I just want to make sure he's doing okay before I go and sleep, " said Dr. C. Thanking him profusely, and admonishing him to go and get something to eat, I kissed Calvin goodnight and went back to my room where Shane, Greg and Trisha waited. I felt like I was going to fall apart, to break down any second and I was amazed that both Shane and I were still functioning. As I walked in, I looked at Shane and said, "So now we wait...."


  1. How I wish that this story had a different ending. I can't help hoping for one as I read it. Your little boy was so brave. I'm so sorry for all that your family have been through. xo

  2. This is just so heartbreaking. Your comments about Shane breaking down brought back so many memories for me. I remember M having that same moment where he just lost it and let it all out. We were at L's bedside, talking to him, touching him, taking pictures and M just couldn't be strong anymore. It was heartbreaking...

  3. Seeing Calvin this way, it reminded me so of Peyton after her surgeries. I understand why Shane's knees buckled, I felt the same way. You were so brave and strong.

    Remembering your tough little warrior with you. He fought so hard...

  4. I wept as I read your post Margaret. I wept for baby Calvin who had to endure so much pain in such a short life time, I wept for Shane and you because there is no torture greater than seeing your child in pain, and I wept because I saw Akul in Calvin and felt my heart bleed just as a mom's would. I am so so sorry for your loss and for all the pain that came before it. Hugssssssssss.

  5. This is heartbreaking Margaret. I've said it many times, but I'm so sorry.
    It's impossible to see your child weak and struggling. The memories are always there.
    I hope this is helping you, to get it all out like this.
    I believe you're being very brave. I hope your feeling better now physically as well.