I don't know where to start. I know this isn't going to be easy. Although the last few months have been one Rose success after another its still hard to think back on the detailed events of that Monday and Tuesday. Even though things turned out for the best, even though Cheryl and I both feel Rose survived because of the tremendous support she received from so many medical folks, family and friends, it's still hard to think about it.
      Rose was born with a serious heart problem, an endocardial cushion defect. The four chambers of her heart were not fully formed. She had holes between each of the atriums and ventricles and where she should have two separate AV valves, she had one large valve bridging both sides of her heart. Her heart would need to be surgically repaired well before her 1st birthday. 
      Our family spent the first few months of Rose's life just enjoying being with her but also doing our best to feed her, helping her put on much needed weight. That was our way of giving Rose her best chance to do well with her heart surgery. I don't think we ever put it in terms of surviving. There was a 95% success rate with the open heart surgery. Cheryl and I understood some of the possible complications but we never let ourselves think what that 5% might mean.

      Cheryl and I had spent the Sunday before celebrating our 18th wedding anniversary by watching Erin's playoff softball game. Erin, our first born at 10 years old, was a small but scrappy player. She rarely hit the ball out of the infield but she could get around the bases faster then just about anybody. Like all of Erin's games, this was a family outing for us. Katie, our 6 year old played on the sidelines and Rose, our newborn, less then 4 months old, spent most of the time in her Mom's arms, eating, cuddling or trying to nap between the cheers of all the parents. Erin's team lost a close game and the season was over.

      Cheryl and I took Rose to the Hospital at about 6:00 am on that Monday morning. After some final pre-op checks, we handed Rose to Cookie, the surgical team nurse. She held Rose in her arms as she carried her into the OR.
      Rose had already been in to Connecticut Children's Medical Center (CCMC) once before, 3 weeks earlier, for a first attempt at her open heart surgery. After a few hours it was called off because of difficulties getting an important blood pressure sensing line, the A-line, properly inserted. Actually, complications from clotting around the A-line site forced the surgeon, Dr Ellison, to spend the day clearing clots out of Rose's femoral artery and restoring circulation to her leg. Like Dr. Ellison, told us later, we didn't need Rose to have only one leg on top of all the other challenges she would have to face. Rose did recover quickly from the surgery. She got to go home the next day and was quickly back to her baby self.
      So on this Monday morning Cheryl and I thought we knew what to expect. We thought we knew our way around, where to park, where to get coffee, where to get breakfast, where to wait while your 3 month old is undergoing open heart surgery. There is a special waiting room for the heart surgery parents where we spent a few hours but after a while we moved into our sleeping room on the hallway off the Pediatric Intensive Care Unit (PICU). 

      The setup at Children's is about the best I could imagine for making a place for the children's families. Rose's room in the PICU would be the last room on the unit, #12. Off that end of the PICU, there were two sets of double doors. One lead to the hallway with all the parent's sleep rooms, small rooms with 2 fold out cots and a TV, a place to stay when you can't leave. Through the other set of doors was the large PICU family waiting room. 

      Cheryl and I were in our sleeping room when we got the first good news. Cookie, stepped out of the surgery to tell us the A-line was in and the surgery was proceeding. We both took turns calling our mothers with the good news. Over the months of Rose's life, we had been e-mailing our rather large extended families with Rose's medical updates to avoid being pinned down by many long phone calls. This day, we would use the mom phone tree. We'd call our moms with how Rose was doing and then they would call all our brothers and sisters. One call for Cheryl, one call for me, then sit and wait.

      We got the news about noon time that the repairs to the heart had been made and had gone well, the Dacron patches were sown over the holes between the atriums and the ventricles, the one big AV valve was now two separate functioning AV valves, more good news for our moms.

      About 2:00, Dr Fischer, the PICU intensivest, stopped in to talk to us. There were some problems with getting Rose closed up. The pulmonary arteries in Rose's lungs were spasming and closing down causing her pulmonary blood pressure to spike up, pulmonary hypertension. This is not an uncommon reaction to the repair of Rose's heart defect. Dr. Ellison had discussed this with us during our pre-op visit. The protocol was to give Rose higher and higher levels of nitric oxide until the spasming stopped and then the blood would be able to flow through Rose's lungs and she could come off the heart-lung machine.
      I'm uncertain of the time or order of events for the rest of that Monday. We both called our moms with the news on the hypertension. 

      Dr Leopold, the cardiologist, stepped out of the surgery to talk to us. He had first met our family when he had examined Rose's newborn heart. His simple, calm explanations had included Erin and Katie. They had been reassuring and a comfort to all of us. 
      Now, the news was that Rose was at the maximum level of nitric oxide. She was still not responding. While he still gave us the feeling that there were still options, Cheryl and I could definitely feel that things were becoming much more serious. They would try to wait, give her more time. Hopefully the nitric would start to take affect.
      In talking to my mother I remember saying, "Mom, I don't know what's going to happen." My mom just said, "Well, we're all praying for her. That's all we can do."

      At some point our families started coming in, not asked for but knowing that they were needed. My father was the first to arrive. His hugs were a help. There were no words for a situation like this.
      Erin and Katie had gone to their Uncle Joe and Aunt Liz's house after school, just four doors down from ours. Joe brought the big kids into the hospital. I know there were other people there but I can't remember specifically. We spent the rest of the afternoon and the early evening with our families waiting for news of Rose. 

      During that afternoon, we met some of the hospital people that help take care of the families while the Dr's and Nurses are taking care of the children. 
      Cindy and Mary from Child-Life spent a lot of time with Erin and Katie working on get well cards for Rose. It was a good outlet for them. I think it may have helped them start to come to terms with Rose's condition. The cards were taped up on the walls of empty PICU room #12. They took some Polaroid pictures of Erin and Kate so we could show Rose in case she got back when they weren't there. The pictures were taped to the wall next to Rose's waiting bed.
      Melinda checked on Cheryl and me to see how we were doing. We had met Melinda during Rose's last visit to Children's when Rose had recovered quickly from her short stay in the OR. Afterwards I can remember saying something to Cheryl like, "Sheesh, talk about an easy job." I was thinking that Melinda was some kind of a social hostess. I was wrong. Melinda and Cindy and Mary were there to help Rose's family as much as the Dr.'s and Nurses were there to help Rose. As Rose's parents and sisters, we were going to have experiences like nothing we ever had before. Their job was to guide and help us as much as we would allow them. 

      At some point late afternoon, Dr Leopold left the OR to talk to Cheryl and me again. Rose was not responding to the maximum allowed levels of nitric oxide. He started explaining heart assist devices. Dr Ellison was going to try to install a Ventricular Assist Device for the right side of Rose's heart. The RVAD would help her heart push her blood through the restricted pulmonary arteries in her lungs. Hopefully, this would work and Rose could get off the heart-lung machine and get out of the OR. The plan was that, given more time, the nitric oxide would slowly reduce Rose's hypertension and Rose would later be taken off the RVAD. Dr Leopold said sometimes, in rare cases, this was necessary.
      It was hard to imagine our little baby having to rely on a mechanical device to live. This was a hard image to comprehend or endure. Mistakenly, I thought that somehow this would be installed in Rose's chest. In fact, tubes would run back and forth from her heart through her open chest to a stand-alone machine. The feeling that our baby was being taken apart and might not get put back together was starting to form. 
      Dr Leopold left us to rejoin the surgery. We talked to our families about the RVAD and we waited.

      Joe and my parents took Erin and Katie to the cafeteria for dinner. Eventually, Joe and my father took Erin and Kate home so they could sleep in their own beds. I think my father slept over our house with the girls, not sure. Our families went home and Cheryl and I went back to the sleeping room to wait.

      Dr Leopold came back to see us in the early evening. He introduced us to Dr Lapuk, another cardiologist from his group. Dr Lapuk would be taking over for Dr. Leopold. The RVAD hadn't work. It couldn't push the flow of blood through Rose's pulmonary arteries. Her heart kept failing. We didn't ask what failing meant. It's still hard to acknowledge what that means but now I know or I can admit to myself. It means her heart was stopping.
      Dr Leopold described the last available option, a device called the ECMO or ExtraCorporial Membrane Oxygenation machine. It would take the blood flow from the right side of Rose's heart, bypass her lungs and pump it through an external artificial lung, then back to the left side of Rose's heart and on to the rest of her body. Rose's heart would keep beating but wouldn't have to work as hard. Hopefully, with time, her heart would get stronger and her lungs would recover. Then she could be taken off the ECMO.
      We asked, what if this didn't work? Could Rose stay on the heart-lung machine?
Dr Leopold said no. Rose had already been on it too long. The heart-lung machine was only meant to be used for a short period of time. It's not meant for long-term use, to leave Rose on the heart-lung machine would just be prolonging the inevitable. If the ECMO didn't work, at some point, Rose would have to be taken off the heart-lung machine and try to live on her own.
      Had anyone ever survived on the ECMO?
      Yes, once. 
      The decision to put Rose on the ECMO was difficult for us. It was extremely invasive. We were giving away parts of Rose that we might never get back. The decision to put Rose on the ECMO wasn't a rational one. Cheryl and I had been on a journey the last few hours waiting for Rose, a journey of changing hopes and expectations. We weren't asking for a lifetime or a year or a week or even a day anymore. We just wanted to see Rose for one more moment, one more time alive.
      
      The ECMO worked.

      At 10:30 that Monday night, Rose finally left the OR and arrived in room #12 on the PICU in the middle of a crowd of about 15 medical people. 
      Her less then ten pounds of baby self was laying on her back in the middle of a full size bed with no open space. The bed was covered with med pumps and lines. Five tubes ran out of her chest, three drain lines and two lines to the ECMO machine at the foot of her bed. Along side her bed was the breathing vent machine, next to that, the machine that metered the Nitric Oxide into the vent line. Over the head of her bed was a monitor screen with her vital signs displayed. 
      The rest of the room was filled with medical folks. Dr Lapuk, the cardiologist, Dr Fischer and Dr Zucker, the PICU intensivists, a respitory therapist, one RN, Lori, right at Rose's bedside, one RN, Carla, assisting Lori, another RN taking notes and 2 infusionists running the ECMO machine. 
This was more then one PICU room could hold. The doors were pushed open and the whole ensemble started to fill the end of the hallway near the two sets of double doors.
      Cheryl and I stood in the hallway talking to Dr Ellison. The heart repair had gone well, no complications until it came time to take her off the heart lung machine. It was the pulmonary hypertension. If it wasn't for that... head shaking. Now we just have to get her some time, give her lungs a chance to recover. 
      Cheryl and I made our way to Rose's bedside, the one side almost purposely kept open for us. We could only hold Rose's left hand and touch her forehead. It was enough. 

      Dr Fischer, Dr Lapek and Dr Ellison talked for a while and then Dr Ellison left to go back to his office. It was late and he had to get some sleep, he had another surgery in the morning. Nobody was going home. Dr Lapuk settled into a rocking chair in the corner of room 12, listening to updates from the RN's, conferring with Dr Fischer, giving adjustments as necessary. One infusionist left, the other stayed on. One RN taking notes, Lori at Rose's bedside and Carla at her side. 
The night fell into it's own routine. It was a constant strain, one long code. Rose needed constant attention to live and this came through Lori. Rose's blood needed to be thinned so the ECMO wouldn't clog. She needed to heal from the surgery, too, but that took a distant second over not clogging the ECMO. So Rose bled. She bled through all the surgical incisions in her chest cavity and drained out her chest tubes. She bled through the hole in her neck for a central line. She soaked her bedding. 
      Rose was using more than a unit of blood an hour. Fresh units had to be almost constantly pushed in by Lori to maintain Rose's blood pressure. Blood samples were taken and meds added to try to maintain the right chemical balance in Rose's constantly changing bloodstream.

      Cheryl and I took turns sitting at Rose's bedside, talking to her and holding her hand. Even with all the tubes and lines and vent and with a face that was puffy from all the long hours on the heart-lung machine, we could still see that she was our Rose. I don't know how but even with Rose laying there heavily sedated and medically paralyzed her personality, her essence still came through to us.

      Cheryl went back to our room to sleep around 2:00. I was determined to make it through the night with Rose and I knew Cheryl would sleep some if she knew I was still with Rose. 
      The medical folks referred to Cheryl and myself as "Mom" and "Dad". It was short for "Rose's Mom" or "Rose's Dad". As in, "Mom's asking about the..." or "We need Mom and Dad to move back for a few minutes" or "Dad, don't you think you should get some sleep?" That really means, Dad, we don't need you passing out on us on top of everything else going on here, but I knew with my years of insomniac experience that I'd be all right.

      I have two distinct memories of that night as seen from either the chair in the hallway near the foot of Rose's bed or from the chair at her side of her bed; 
      Watching the infusionist running the ECMO, watching his reactions. If the ECMO clogged, that was it. I remember him studying the pump spinning within its clear housing or just listening to slight variations in the pitch of the pump sound. He raised his eyebrows a couple of times but remained generally calm with no surprises.
      But the most amazing thing was to watch Lori. She never moved away from Rose for even a moment. If she had to talk to somebody she would turn her head but she would stay right at Rose's bedside, never taking a step back. Maybe once or twice she had to take a short break and Carla would step in and take the point without missing a beat.

      About 5:00 I remember seeing Dr Lapuk on the phone discussing Rose's condition with Dr Ellison. Cheryl woke up and came back out to Rose's room. The sun came up. It was Tuesday morning. We had all made it through the night. 

      It's hard to describe what we were feeling after that night. A team of the brightest, smartest, most capable and especially resourceful medical people had managed to keep our baby daughter alive for a few more hours but the feeling was that Rose was barely holding even, if that.
      Dr Lapuk told us that when Rose first came into the PICU he was thinking in terms of maybe 15 minutes at a time, now he was starting to think maybe an hour at a time, nothing beyond that. In as gentle a way as possible, he tried to be very honest with us and our expectations. He really didn't see a way out.

      Cheryl finally talked me into getting some sleep around 6:00. While I slept, Dr Ellison came back. The medical team talked about Rose's blood loss and her unstable blood pressure, trying to come up with solutions. Cheryl listened in

      Cheryl woke me at 7:00. Dr Ellison was with her. Having gone to bed exhausted from the long night I had almost instantly fallen into a deep sleep. Now, less than an hour later, I struggled to wake up, trying to understand why Cheryl and Dr Ellison were there. We had to decide Rose's future.
      Dr Ellison was telling us that once a child had stayed on the ECMO for two weeks and then been taken off after her pulmonary hypertension had subsided. There was no way to put odds on the chances for success in Rose's case. There just wasn't that much experience with these types of situations. There were many chances for complications on the ECMO. He said Rose was a very sick baby and that there was just no recommended course of action. This was only the fourth time in his career that he had even used the ECMO.
      Cheryl and I had not talked about this inevitability through the night, at least not in words, maybe through what we both had seen and how we both felt about Rose. It's hard to describe how you arrive at a decision like this but Cheryl and I had watched Rose all night. We just didn't see how she could make it for an extended period of time on the ECMO. That important delicate balance of allowing her blood enough clotting to heal her wounds but not enough to clot the ECMO membrane had never been achieved and seemed out of reach. Her blood pressure was barely under control and she was bleeding constantly.
      In our hearts we felt that this wasn't going to work. This wasn't how we wanted Rose to live out her life. This wasn't her chance for life. Cheryl and I decided to take Rose off the ECMO.
Dr Ellison accepted our decision. He said that maybe Rose's lungs had had enough time overnight to heal. There was no way of knowing for sure.
      Dr Ellison set the time at 11:00. He should be out of his morning surgery by then. He didn't say it in words but we could feel that he knew she was desperately sick but he wasn't going to give in. He wanted to be there when Rose tried to make it off the ECMO

      Dr Ellison went to surgery. Cheryl and I went back to Rose's room. The RN shift was changing. Lori and Carla turned over the responsibility of tending Rose's immediate needs to a new nursing team. Claire took the point position at Rose's bedside with Wendy at her side. Rose's code continued.

      Dr Fischer talked to us about Rose's condition. He was very pragmatic in his assessments, didn't pull any punches. She's very sick, extraordinary measures had been taken. They had tried a test weaning off the ECMO. Rose's pulmonary arterial blood pressure shot up, her hypertension wasn't healing. There's nothing else we can do, a lot of pauses, we really don't know how much longer she's going to last, and then he said, "Is there any body you should call?"
      Cheryl and I were silent for a few moments and then it really started to sink in. Sometimes you need to hear things more then once to fully appreciate them, first the optimist not being very optimistic then the pragmatist being very realistic. 
      We both called our moms and ask them to call our families. We told them Rose's situation, everything that had been done, she was coming off the ECMO at 11:00, the odds didn't look good, she probably wouldn't make it.
      We called Joe and Liz and asked them to bring Erin and Katie to the Hospital. We weren't sure what was going to happen but we felt a strong urge just to be close to the one's we loved most. It didn't seem possible, with their baby sister as sick as she was, for Erin and Katie to sit through a day at school. We wanted our family to be together. 

      Somehow, through it all, Cheryl and I stayed very calm and very focused and we thought as one person. Maybe it was because we had so little time left and we didn't want to miss a moment or maybe there was something else. 
      Despite the tremendous circumstances of the day, in hindsight, I realize that we were somehow all at our best. Everybody around Rose seemed to be at their best; the extraordinarily compassionate medical care that was keeping Rose alive, the love and prayers from Rose's family. It came from somewhere. There's an irrational part of me that wants to believe that for one day, Rose and everybody around her were helped in a special way.

      Melinda had seen how Rose was doing that Tuesday morning. She knew the seriousness of Rose's condition. She asked if we had a parish priest that we could call, gently emphasizing that it would be a good idea.
      Cheryl and I had regularly attended Mass at St Gabriel Church in Windsor since childhood. We both thought about it quietly for a second. 
      Amazingly, through all this, our conversations consisted of few words. I remember mostly just looking at each other, making eye contact, knowing that we understood each other and then a simple nod or a word or two.
      I went back to the sleeping room to make the call and got the answering machine. I started out all right, telling Rose's story, where she was, what was happening, could someone please come out. But as I went on I lost control. I was crying pretty hard by the end of the call. I really wasn't sure if they would be able to understand me.

       Father Neumann arrived about an hour later. He spent some time talking to us at the foot of Rose's bed. Then he prayed over her and blessed her.

      Our families started arriving around 9:00 and started to fill the waiting room just outside the PICU double doors. All of Rose's grandparents and aunts and uncles from the Hartford area came in.
      We went over Rose's condition with people as they arrived, how the test weaning off the ECMO hadn't looked good, how 11:00 was coming. Everybody was pretty somber but calm and supportive. We tried to maintain a positive attitude. I don't know what words were used but we were feeling that we were just grateful for everyday we had with her. Nothing about her could ever make us bitter or resentful. Rose had been good to us.

      We talked to Cindy about how to tell Erin and Katie about what was going on with Rose. Cindy encouraged us to share as much as we could with the kids, to include them as much as possible. 
      She said that as tough as the news was that we were going to tell them it was better then what their own imaginations would make up if we left them out. 
      We asked Cindy to sit with us as we talked to the girls. We didn't go into a lot of detail. Just that Rose was very sick. We weren't sure if Rose was going to make it or what was going to happen but the Dr's and Nurses were all working hard doing their best to help Rose. We told them that we'd always love Rose and both of them very much and that's what was important. 
      Katie asked if she would still be a big sister if Rose died. 
       I said yes, she would always be Rose's big sister no matter what happened. 
      We hugged and cried some. Both girls were pretty quiet.

      We asked them if they wanted to see Rose and they did. We had a Polaroid of Rose in her hospital bed taken by the PICU nurses. We talked about how Rose looked so they'd be prepared. What her room looked like, where to walk, where to stand. They would only be able to hold Rose's hand or touch her head. Rose wouldn't be able to open her eyes but she would be able to hear them.
      We brought them in to see Rose and they were great. As hard as this day was, all of our kids were at their best and they made us proud to be their parents. Both Erin and Kate spent time talking to Rose and holding her hand. They both kissed Rose by kissing their fingertips and touching her forehead. I had to pick Katie up so she could reach.

      Cindy and Mary stayed with Erin and Katie in the waiting room. They talked to them some more and then tried to start them on making good-bye cards for Rose.
      Cheryl mostly stayed by Rose's bedside. 
      I escorted our family back and forth, two at a time, from the waiting room to Rose's bedside. There were many serious faces but everybody was very supportive. Some tears but I think everybody was praying hard for some kind of a break.
      I remember noticing the substantial power cord for the ECMO machine was plugged into the wall outlet on the visiting side of Rose's bed. Amongst a mess of other cables and lines it crossed the path to Rose's bed. Everybody who visited Rose had to step over it.
      As the morning went on our family became familiar with that path through the double doors, from the waiting room to Rose's room. And, as the morning went on, more and more, our family stayed just to the PICU side of the double doors. We all knew it was a breech of the PICU protocol, just two visitors at a time. But they knew eleven o'clock was coming. Rose faced a nearly impossible test and they wanted to help in some way. Our family was drawing closer together, trying to support Rose and I think the medical staff understood this.

      As Cheryl stayed by the bedside she helped some with Rose's physical care. Rose's bedding was soaked and needed to be changed often. Cheryl would help the nurses as they gently rolled Rose side to side. Slipping out the soiled bed pad and then slipping in a clean one. The new pad was quickly soaked through.
      The nurses did their best to hide this from Rose's family. They would tuck clean white towels around Rose as best they could and be careful to keep her blanket over her, concealing as much as possible. But a dark red outline was still visible all around Rose's head and shoulders. Occasionally her blanket would slip and her chest bandage or tubes were visible. I was afraid that one of Rose's visiting family would be shocked by the sight but nobody faltered.

      Cheryl asked me what I thought about Rose being an organ donor. We talked about it briefly and agreed it was the right thing to do. We both felt that it would be a chance for more positive things to come from Rose's life.
      We talked to Dr Fischer about it. He was pretty negative. With all she's been through, being on the heart-lung machine so long, she's probably not a good candidate. Her major organs are probably damaged. He did say he would check with somebody.

      I remember at one point in the morning sitting at Rose's bedside watching Claire try to keep up with Rose's blood demands. There were times she just couldn't push the new units in fast enough and Rose's blood pressure would drop off quite a bit. I remember thinking it wouldn't be fair if Rose didn't make it to eleven. Somehow I had it fixed in my mind that her chance, if she had one, was at eleven o'clock.

      Claire took a short break from Rose's bedside to talk to Cheryl and me out in the hall. She told us they did footprint and handprint molds and they could save a lock of Rose's hair for us, too.
You never imagine yourself in a situation like this. There's no way to be prepared but somehow we understood the compassion behind the offer, the desire to preserve a part of our baby, and the fleetingness of the moment.
We told Claire, yes, we would like that.

      Melinda asked me if we wanted a priest to be with us at eleven. I think I gave her a non-answer or said no.

      Cindy came in to tell how the big sisters were doing. Katie was in the waiting room with her Aunt Liz, she was upset but OK. Cindy said that Erin was in the family room by herself. She thought she was having a hard time accepting the situation.
     Both Cheryl and I were having a hard time leaving Rose but I agreed to go talk to Erin.
      I found her in our sleeping room, by herself, mad about having to work on the good-bye card for Rose.
      Everyone keep's saying Rose is going to die.
      Well, she's very very sick, Erin.
      Ya, but they don't know. How do they know?
      And then I understood. I don't know where it came from but I understood exactly how Erin was feeling. She was right. We really didn't know anything for sure.
      You're right, Erin, we don't know for sure that she's going to die but it doesn't look good. She's very sick. The Doctors don't think she'll make it off the ECMO. There is a chance but it's a pretty small one. It would be like you hitting a homerun over the fence. You could do it but you can see how hard it would be.
      I think this helped Erin. All she wanted was some kind of a chance. After I left she reluctantly started on the card. Mary kept checking on her.

      Dr. Fischer started to talk to us about how things would go at eleven. We were standing out in the hallway, closer to the double doors with some of our family around us. We told him we wanted to stay with Rose no matter what happened. He said it was going to be tough. We said we still wanted to stay.
      Then he prepared us by telling us how she would look as she died, what she would go through.
When they turn the ECMO off, her heart is going to try to pump through the pulmonary arteries in her lungs but won't be able to. It will gradually slow down until it stops. Her color will change. She'll turn blue. She'll move around some for a while. It could be five minutes or more before she stops moving all together. And you can't pick her up because her chest is still open.
      I know it wasn't easy for Dr Fischer to tell us all this. He was doing his best to prepare us.        Cheryl and I quietly took it all in.
      What about Rose being an organ donor?
      No. He had checked. The answer was no.

      Melinda approached me again about having a priest with us at eleven. Did we want one? 
I was struggling with trying to stay rational about things or making that leap to rely more on faith.
This time I said yes.

      It was getting close to eleven. Our family took turns seeing Rose one last time. Cheryl and I talked to Erin and Kate and then brought them in to see Rose. 
      Katie was too upset to go to Rose's bedside. She sat on her Mom's lap in the rocking chair in the hallway, crying quietly.
      Erin came with me to Rose's bedside. She told Rose she loved her. Then she kissed her fingertips and touched her baby sister's forehead.
      We met around the rocking chair, asked them if they wanted to be with us at eleven. 
      They both said no and we didn't push them.
      Katie went back to the waiting room to sit with her Aunt Liz.
      Erin went back to the sleeping room to be by herself. She was going to be crying and she didn't want anybody to see her.

      It was eleven o'clock. Cheryl and I started to move to Rose's bedside. I looked around at all the faces in the room, looking for Dr Ellison's. He wasn't there. We were going to have to go ahead without him.
      Cheryl and I stood at Rose's bedside. Claire quietly said to us, "There's a lot of people in the hallway." Her tone said she was looking out for us and wanted to make sure we were okay.
I looked at Claire and then looked into the hall. Our family had made the move from the area in front of the double doors to the hallway at the foot of Rose's bed just through the pushed open doors of her PICU room. Cheryl and I could see all of Rose's grandparents, her aunts and uncles. They had been through so much with us. The love and support and prayers they brought were the natural deepening of the bond our family had formed with Rose over these last two days.
      I quietly said, "They're fine."
      Father Sazarro stepped between us and began to pray over Rose. It was a blessing to have his words to focus on. I never heard the words to order the ECMO off or the sound of the ECMO shutting off. We watched Rose and prayed. The words of the Sacrament of the Sick are a beautiful poem filled with the most comforting images, not of dieing, but of a life continued. I was amazed at how reassuring I found them. Father finished the prayers and blessed Rose. Then he led us through an Our Father and a Hail Mary. We finished praying and Father Sazarro quietly stepped back.        Time passed on. 

      I listened to Cheryl talk to Rose, "I love you, Rose... you do what you have to do...we're here with you..."
      We watched Rose and quietly talked to her, more time passed. For the first time I looked up, I glanced at the monitor over Rose's bed. Cheryl reminded me in a whisper, "Don't worry about the monitor, just watch Rose." But I had seen her heart rate, 140 beats per minute. I couldn't make sense out of it.
      I turned my attention back to Rose and we watched and talked to her and prayed.
Dr Fischer stepped between us, "Dr Ellison left instructions. He said that if she makes it for five minutes off the ECMO we should put her back on so he can properly disconnect her." The ECMO was already back on. Rose was still alive.

      We celebrated quietly at Rose's bedside. It slowly started to dawn on us. We had done everything we could to prepare ourselves for Rose's test. We had braced ourselves for a terrible blow and it had missed us. We had forgotten what would happen next.
      Cheryl said, "Where's Erin? We need to tell her."
      I had to think, "She's in the sleeping room, I'll tell her"
      As I walked down the hall and through the other set of double doors towards the sleeping room, I started to feel that I would never deliver better news.
      "Erin, Rose hit a homerun!"
      "What?!?" Erin's face started to change from the deepest sadness towards pure happiness.
      "She did it. She made it off the ECMO for 5 minutes." It started to dawn on me that Rose still had a ways to go. Rose still had to make it through being permanently disconnected from the ECMO. I tried to back pedal. "But she has to hit another homerun."
      Erin wasn't listening to another word I said. She was flying around the bases with Rose. If Rose hit one homerun she could hit another. After I left she tore up the good-bye card.
      I went back to see Rose and Cheryl asked, "Where's Katie? Does she know?"
      I had to search my memory again, "She's in the waiting room." 
      I walked into the PICU waiting room and knelt at Katie's feet before she could look up, "Katie, Rose did it. She's OK."
      Katie's face lit up. She hugged me hard. I didn't try to offer any disclaimers this time. I wanted to believe.

      We gathered with our family back in the PICU, gently pushed away from Rose's bed side by the efforts to prepare for her second operation in two days. We gave each other guarded looks of hope, took some deep breaths. Few words were spoken, we were still not exactly sure what had just happened.
      More surgical carts and tables arrived. Dr Ellison was back from his morning surgery, "Well, she made it." Less strain showing in his face then during our last meeting, a flicker of hope a little stronger.
      He confirmed the contingency plans that he had already set in motion. "We're going to try to disconnect her here. There's no point in taking any extra chance by moving her to the OR. The PICU rooms were made to be changed over to OR's, if necessary." He left us to help with the preparations. His surgical table was being moved in next to Rose's bed. His special lighting head-set was there. I remember realizing the job he does everyday. How does he do it? A heart is the size of your fist and Rose's fist is so small.
      Our family stood on the fringe of the new OR, not wanting to leave but suspecting that we would have to soon. We knew we didn't belong in Rose's operating room but we felt that, just maybe, Rose had survived this far because we had all stayed close and supported her through her trial. In that moment, a strong connection of support had formed between all of us and Rose. We were afraid if we went back through the double doors it would be lost. We hesitated.
      The surgical team combined with Dr's and Nurses from the PICU were getting ready to disconnect Rose from the ECMO, this time permanently. It was time for us to leave. Cheryl and I kissed Rose, told her we loved her. Our family went back to the waiting room just outside the PICU.

      We all waited together. A group of Cheryl's life long friends joined us. Cheryl filled them in on where we were, what was happening now. We talked some but mostly we were numb. Exhausted from everything, we slumped in the waiting room chairs and stared into space, listening to the sounds but not the words of the conversations around us.
      All together there was now close to twenty family and friends filling the PICU waiting room. We weren't sure how long the wait would be this time but that was all right. This kind of waiting was to be enjoyed compared to the last 24 hours. There were still no guarantees but we were starting to hope more then not.
      Melinda checked in on us. Was there anything we needed? Had we heard anything? No? She'd try to find out.
      Mary took Erin and Katie on an extended sibling spoiling tour. There were no doubts in their minds. Everything was going to be alright. They were celebrating. Mary indulged them in as much MacDonald's food, beanie babies, and fruit roll ups as they could absorb. It was all topped off by some sprints on the lawn in front of the hospital to try to burn off some of their abundant energy. 
When they returned from their triumphant tour we were still waiting for news. We had done our best to interpret the progress in Rose's room by the limited view through the windows in the double doors. Mostly views of the backs of heads and the open side of Rose's room away from the surgical table. A significant event seemed to be Dr. Ellison taking off his headset but, as he came in and out of view, he just seemed to be looking in the direction of Rose's bed, watching.

      Cheryl's brother Kenny reported back to the PICU waiting room. He had bumped into Dr Frieda while pacing in the hallways outside the PICU. She was a PICU resident that had been with Rose all through the night and was finally heading home.
He asked, how's Rose doing? 
Dr Frieda said, she's been off the ECMO for 45 minutes.

      We were all in the PICU waiting room when Dr Ellison came in to see us around 1:30. Cheryl and I stood to meet him.
      "She's one tough little lady," he said. "She's doing it."
      Cheryl will say that Dr Ellison hugged us but I think the truth is that he just stood to close to us. After hearing this news, everything we had been through the last two days, we were going to hug him. Cheryl on one side, myself on the other, our arms wrapped around each other and the Doctor, heads on his shoulders, all of us crying. The room burst into applause.

      Soon we were able to see Rose again. PICU Room #12 was a lot quieter now. The ECMO machine was gone from the foot of Rose's bed. Most of the medical staff had left, finally able to go home. Claire and Wendy still watched over Rose but not as intensely.
Rose looked much better. Now, off the ECMO, her blood was no longer thinned, her wounds were healing quickly and her blood pressure had stabilized. She was laying on a clean white bed pad. 
      Rose's heart was doing it's job, pushing her blood through her own lungs. She was doing it. The code was over.
      We enjoyed a moment of the deepest happiness. The five of us were still together. This future wasn't going to be easy, Rose still had a long way to go, but we were grateful for the days, the weeks, the months, the years, that might follow.

      Later that week, my mother ran into Dr Lapuk on the elevator. They discussed how Rose was doing, her continued recovery. There was a pause in the conversation and Dr Lapuk said, "You know what happened there... that was a miracle."
My mother answered, "I know."

Ó copyright 2000