Rose

Mom's Story

      I am writing this story about the day Rose lived for two reasons. The first is I hope to help someone who has also experienced a life-changing event not to feel so alone. Sharing one’s feelings cannot only be helpful for that person but others receiving them. The second reason is that expressing my feelings has been helpful to me or as some say "therapeutic", so here I go.
      I kept a journal during the time Rose was having her heart surgery. Some of the thoughts are from the journal and some are from months of processing in my mind what our family went through.
      When Rose went for her open heart surgery in June we were told she was having an operation that was 95% successful. We never thought about the other 5% and what it meant. We were told of complications like pulmonary hypertension, stroke, valve and electrical problems in the heart. With a 5% chance of occurrence really why spend anytime worrying about it. In general we are positive thinkers and that is how we dealt with this surgery. I think our abilities to deal with all this came from our past experiences. When Chris and I went through being infertile this was the beginning of my appreciation of life and children. I went through a thoughtful time. I finally surrendered the idea of getting pregnant and having children naturally. I learned that you can make your life fulfilling and loving without children. I learned to be thankful for what I did have and not be bitter for what I didn’t have. Loving Chris was something not everyone has and that alone was a blessing. We did get pregnant with Erin and what a gift, 4 years later Katie came and we never thought we could be so happy. Each pregnancy was so special and a miracle to us so having Rose for 3 ½ months was more then we thought we would have with a third baby. I believe this experience was a test of my faith in this life lesson. At Children’s Hospital they have special waiting rooms for families of children major surgery. We had the honor of one of these rooms. It is a very intense time waiting for news but we managed to eat breakfast, read and go across the hall for coffee (a place we visited often for the next week). Later that morning we were shown our overnight family room where we would camp out for the next 4-7 days if all went as scheduled. We were actually there for 2 weeks, good thing we had camping experience.
      We settled in and the first news was good from Dr Leopold. The arterial line was in and working and the surgery was going well. I don’t really remember anything from this time until Dr Lapek came in to tell us Rose was experiencing pulmonary hypertension every time they started weaning her from the heart lung machine. At one point he came in our family room to let us know they were trying procedures and going into territory he was unfamiliar with but they were still working hard. This was news that hurt deeply and I remember feeling very scared but still thankful we were at this special hospital with these special people. We still had options and they weren’t giving up.
      We decided to call our parents to let them know the problems and if they could call the rest of the family. We also called a few friends to let them know that Erin and Katie would not be in school the next day. This activated a community of people that would continue to help and pray for our family through these weeks and months to come. Erin and Katie came in this evening with Uncle Joe but never saw Rose. We made a plan for them to stay with their Uncle Joe and Aunt Liz and come to the hospital in the morning.
      It wasn’t until 10:30 pm that Rose was able to get out of the operating room to the PICU. I never saw so many hospital staff and machines around such a small body. I think there was 12 to 15 people moving her bed with poles, box-like machines on wheels, tubes, blinking lights and there in the center – our baby. She was sedated but all I wanted to do was touch her tiny hand, stroke her head and tell her I loved her. I needed to keep reassuring her. Mom and Dad were there. Rose and everything would be all right.
      The next 12 hours through the night to the next morning were something that changed our lives and the people around us. Rose was on a machine that bypassed her lungs so her blood needed to be thinned out in order to smoothly pass through these machines. The complication from this was bleeding from her open chest wound. She was receiving a unit of A- blood at a rate of about 1 per hour. She had 8 to 10 people at her bedside operating machines, pushing blood, monitoring her vital signs, changing her blood soaked bed, giving medications and dealing with her parents through the night. I actually laid down for 2 or 3 hours in the family room down the hall while Chris sat vigil with Rose. I remember going back to Rose about 3:00 am and seeing the same staff at Rose’s side as when I left. Bowls of popcorn and cups of coffee in the hallway made me realize these people have been working all day and night for Rose’s life. (Microwave popcorn became a small token gift of our appreciation when we returned to visit.)
      The morning arrived but you didn’t notice much of a shift change. Staff stayed and continued to work. Chris actually fell asleep in the family room for an hour or so. There was a sense of falling behind in maintaining Rose’s blood pressure. Dr Ellison came in and was updated. I listened with my ears and mind. I heard the doctors, nurses and technicians problem solving why the Rose’s blood pressure was dropping. All I could see and feel was my baby lying in a blood soaked bed again. I began to understand a big decision was going to have to be made. Here we were dealing with that 5% of this surgery. I will never take percentages for granted again. Dr Ellison and I went to wake Chris up to talk. You only watch these scenes on TV or in the movies. You never think you will really discuss the issue of whether to take your child off a life saving machine. We had this discussion. How did we get here, the odds were good, now they weren’t looking so good. We thought about how grateful we were to be pregnant a third time. We gave birth to a beautiful girl and named her Rose. We were so happy to bring her home for 3 months and be a family of five. We thought this was no way we wanted to see our baby go, that she was loosing control of her life. Chris and I talked alone in the family room. Maybe we weren’t meant to have a child with Down Syndrome. God had led us, through Rose’s life in a direction. The rest was up to us. It was going to be all right because she taught us so much already. She taught all of us about Down Syndrome. We learned about true unconditional love and to appreciate our family and friends. Again I surrendered myself and knew we had to get Rose through whatever she needed to do. We would be right there with her comforting her and letting her know we would be all right no matter what happens. God was with her. The phrase "giving up" was used by my oldest daughter Erin but I never thought of it that way. Rose was going to do what she was going to do and we would help her. A calmness came over me and I began to accept whatever would happen.
      The child life specialists helped us with our older children and advised us to include them and be honest with them. We did this with Katie, age 6, and Erin, age 10, from the day we found out Rose had Down Syndrome so this decision was not difficult. Finding the right words was hard but the staff helped us with this. We both have had a strong family upbringing. Chris and I have always had common beliefs and values about family. Our hearts were together on this so we would go through it together. When my younger brother died my parents included us kids in some of the decisions about his funeral. I respect them for this and remember this as being helpful to myself as his sister. Erin and Katie both saw pictures of Rose (taken by the staff) to prepare them before seeing her. We explained about the tubes, her eyes being closed but tried to stress that she could still hear them and feel their touch and their love. They were amazing when they went in to see her. They saw past the machines, people, and tubes and totally focused on their baby sister. We sang "Rock-a-bye-baby" to her as we did since she was born. This brought strength to me and I know Rose knew we were all there.
      Our parents and brothers and sisters arrived during the morning and were very involved in asking questions, supporting us and our children and praying for Rose. They tried weaning Rose off the ECMO but the pressure in her lungs went up. Some were thinking she wouldn’t make it off the ECMO but complications were catching up so Dr. Ellison with our permission decided to try around 11:00 am. Our family each came in to see Rose maybe for the last time, this was very hard to see but so much love was around her it gave me strength and hope. Erin went to Rose with her Dad but Katie needed to just sit with me outside the door so we did. The intensivist prepared us for what we would see in Rose if she was not making it. A nurse spoke to us about afterwards foot printing her. It seemed strange talking about that but we were living second by second and open to everything. A priest came to pray with us and bless Rose. As they weaned Rose off the machine Chris, myself and the priest leaned over Rose reciting prayers from childhood. I looked up and there standing in the hallway of the open PICU room stood our family. I felt the love and the power of God. I said to Rose aloud, "You do what you have to do", "I love you" and "Thank you, Rose". I also asked Rose to be messenger to my brother. I whispered in her ear to tell Jimmy I love him and to thank him for me for his spirit and his life. I believe he has answered my message.
      As we watched Rose we didn’t see any of the physical signs they told us we would see as she was dying. Her color was a bit reddish-blue and blotchy but everything seemed quiet. The next minute they were talking about disconnecting some of the tubes from the ECMO. The doctors were asking us to wait in the waiting room outside the PICU while they turned the room into an operating room. When we left our baby was alive and fighting. We had just witnessed a miracle.
      Being a witness to a miracle can change your life. Some of our family said later they didn’t really want to watch the weaning off the machine but were drawn in a way to be there, to try in some way to help Rose. It was feelings, emotion, power, prayer, work, people loving and working to will her to keep going. The word witness implies watching or observing in a passive sort of way. It wasn’t like that. Our family and the hospital staff were able to see what the power of love can do. I hope they never forget this when they feel lonely, lost, sad, or frustrated. They can use their power of love; they can bring out God in them to survive anything. They can help others with this love.
      We sat in that waiting room for 2 hours or so my body numb but emotionally we were dealing with this crisis. When I prayed, I prayed that I may handle whatever I was given in life, the best way I could. I prayed because I knew I needed help. I am with many faults; I try to be humble but not always am. I know I am a small speck in the big picture of life but my actions are still important. I also think how it’s not how long or short we live but how we touch people during our life. Here was Rose, a 4 month old, teaching me so much in a short time. So with our family and close friends around us we waited, talked, cried, laughed and comforted each other.
      Dr Ellison came in the room, with a smile he said, "She’s doing it." This doctor, this man, gave 200% of his abilities to save Rose. He was amazed, tired and emotionally drained as we were. All we could do was hug him and cry tears of joy. He actually cried with us while receiving an ovation from our family. Rose was still critical but we were living a moment at a time and this was a miracle.
      The next few days were spent by Rose’s side. I learned so much about myself and my life that week. I know after all this Rose has more to teach me. Everyday I thank God for another day she is in our lives. If you truly surrender yourself another door opens. You are shown the way. So God and Rose I faithfully surrender myself to you to show me the way.