flash bang

Everything was all wrong. When I had driven to the hospital the previous day, I parked in one of those parking spaces with a stork sign in front of it. Right up in front of the hospital entrance. Because I was pregnant. Now we were leaving the hospital. And I wasn't pregnant anymore. But the carseat in the backseat was empty. I felt like I needed to alert everyone around me, "No, no, I really DID have baby! That's why I took this special parking space... there WAS a baby, really!" We picked up Subway sandwiches (because that is the breakfast/lunch of choice five hours after you have a baby) and went home to visit with a set of grandparents that had driven four hours to see their new grandbaby. 15 minutes at home spent quickly packing clothing, explaining what little we knew to grandparents, and then taking off for Durham. Surreal.

By the time we got to Duke, they already knew what was wrong with Sam. And it had a name bigger than he was. "Transposition of the greater vessels." That means things in Sam's heart that aren't supposed to be backwards are backwards. In layman's terms. I finally got a chance to really look at my baby. I didn't feel like I had been pregnant just 24 hours ago. Granted, I kind of felt like I'd been run over by a very large truck, but I was on my feet acting like giving birth was just one of the things I'd had to do that day. Pop out a baby: check.

Sam was beautiful. And he had a lot of attachments. Wires, sensors, a heater, and a very important monitor just above his bed that told us everything about his vital signs. I was put in touch with the lactation consultant at Duke who was very kind. She showed me where the "pump room" was and gave me a crash course in using a breastpump. (I will remind you, this was one of the few items I did NOT buy in preparation for this baby. Hello, irony.) "Every three hours, like clockwork. It's very important that you establish a schedule to get your milk supply up. And the baby needs the colostrum." What I heard: "This is the one thing that you can do. Do it well. You can't help your baby. But you can pray. And pump like a maniac." They asked us at the hospital, "Do you have a place to stay?" Ummmm.... No? Because we didn't plan on this. And we don't live in Durham. And my husband is military. And we are not millionaires. They told us we could stay in a random waiting room at the hospital. When we checked it out, we discovered that I'd be sleeping in a plastic recliner that didn't recline all the way. I was pretty sure that this did not qualify as sufficient post-partum care. So we drove to my parent's house, where my daughter was staying. The next week went by- and it's mostly a hazy blur to me now. I religiously pumped every three hours, around the clock. Sam had to have surgery to relieve a bloodclot in his thigh and again for one in his neck. He had jaundice. We were fortunate to aquire a room at the Ronald McDonald house. That's a whole story by itself. I am very grateful for the Ronald McDonald house- but it was truly like being in college again. The worst college EVER. The room was very small, with two tiny twin beds (hanky panky is not encouraged at the RM house) that had 20 year old sleep number mattresses on them. There was one bathroom for all the rooms on the floor, and most of the other people staying there seemed to sleep all day and then spend the entire night smoking and talking loudly right outside our window. This made getting any rest nearly impossible. But it was virtually free. And we were a five minute drive from the PCICU. Who needs sleep, anyway?

I spent a lot of time pumping and on the road. And a lot time I spent just standing and watching my baby breathe and touching his feet, his head, his hands. He slept all the time out of necessity. He was sedated and very heavily medicated. We still hadn't heard Sam cry- that wouldn't happen until after his surgery when they finally removed the tube from his throat. My husband was back and forth between Bragg and Durham, taking care of things at work and doing what needed to be done.

One week after Sam's birth, we sat down with the surgeon to discuss the big one. The open heart surgery. Where they would put Sam on a heart-lung machine. They would stop his heart and restart it with the machine. They would kill him and then make him alive again. We discussed risks. The biggest risk, of course, being death. But if they didn't do the surgery, death was a guarantee. I learned what it means to disassociate. When you sit in a tiny consulting room with a microwave and a Keurig and a surgeon and he tells you that your baby quite possibly might not survive the surgery- but that if they don't do the surgery, he will certainly die. Risks. What to expect from recovery. All the things that could go wrong. So many. And when he laid the papers on the table next to the Oprah magazines left for our reading pleasure, we signed them. Because there really wasn't any choice. So we signed, and we disassociated. Because meetings with surgeons don't go well if you're hysterical through the whole thing. And then the day came. It was so long. It took longer than they said it would and we sat and waited... and I pumped... and we waited... and I pumped. Hours and hours and hours. Different people wearing masks and colorful Danskos came and checked on us periodically and gave us updates that didn't really tell us anything. And then he was out of surgery. He made it through the surgery! But he was not out of the woods. He was on a pacemaker and there was still a long list of things that could go wrong. So we waited some more. We waited and slept a little and I pumped and we ate a little and we waited. I prayed, but not much. Praying opens up emotional gates for me and I couldn't do that. If I had spent that time in prayer, that's all I would have been capable of. I would not have eaten or pumped or stayed on my feet. I would have been a praying, crying, hysterical mess. But other people were praying. Hundreds of people that knew us and even people that didn't know us were holding us up in prayer. Literally holding us up- because I would have fallen without it. I believe sometimes you reach a place where you cannot pray beyond, "Do Your will." And then you wait.

We were told that post surgery Sam would likely have a lot of fluid retention and also that they would be unable to close his chest for several days. This is apparently common practice; it safely allows the swelling to go down and the fluid to pass through the system. When we went to see him following the surgery, I had my first failure moment. I looked at him... and listened to the surgeon talking... and I had to walk away. Because if I didn't walk away, it was quite possible that I would fall on top of him. That lightheaded feeling and the buzzing in my head came on fast and furious and I had to get out of there.

Over the next 36 hours, his head swelled as he retained fluid. He didn't look alive. He looked like a grossly out of proportion doll with an inflated head and neck, tubes in his body, wires attached, and a bag to collect urine. We valued every ML of urine that passed through his body because that meant that fluid was draining. I stood next to his tiny incubator bed and stroked his swollen head. And pumped every three hours. We were fortunate to aquire a loaner hospital grade pump from the military hospital at Bragg, so I wasn't tied to Duke's pumping room. We could leave and pick up food from somewhere other than the Duke cafeteria. Because sometimes we needed to breathe fresh air. I took photos of Sam before his surgery. He still looked like a normal sweet baby then- plus wires, tubes, and jaundice glasses. I did not take photos of him post surgery until the swelling went down. Some things do not need to be photographed. Those images are permanently imprinted on my brain. The nurses were kind enough to cover his open incision with a paper towel when we came to see him. Under that paper towel, his heart was exposed, pumping blood with the help of a pacemaker. The only thing between his heart and the air in the PCICU was a thin layer of what appeared to be Saran Wrap. Once I got there before they covered his incision and I don't think I'll ever forget what it was like to see my child's heart beating. It was realer than real. And while Sam's heart was being repaired- opened up and dissected and put back together- mine was broken. My heart was torn completely in half. My sweet Molly was with my parents, my new baby son was at Duke, and I couldn't be in both places at once. Being 100% for both children was physically impossible. I had never been away from Molly for so long. It was incredibly difficult, both for her and for me. She stopped talking to me on the phone. It was too hard. We didn't know how long this ordeal would last or how long it would be before we could be together as a family again. We brought her to see Sam once, but the PCICU is no place for a healthy child. The PCICU is full of hope, life and death. Sometimes the baby that we saw in the bed next to Sam wasn't there the following day. Sadness and mourning. And sometimes it felt unfair to pray and hope that Sam would be ok when so many around him were not ok. It was draining, both emotionally and physically. Eventually it took its toll- and I broke.

"Out of the depths I cry to You, O Lord..."
          Psalm 130:1 (NIV)