Because of the last week’s post regarding grief, I wanted to share this story with you. For the person going through grief, it can seem like a hopeless situation. This is a story from a friend of mine that walked through the process and found life on the other side.
This is a long story. I have edited it down some for the blog, but it will still be portioned out into three posts. This first one is the event. Without the other two posts, it may be too hard to handle, but the other two posts will not have the impact without this one.
Just fair warning, if you plan on reading this, you have to read the other two. If you read all three, your appreciation of the kindness of God will grow. With that introduction, here is Heather Jones.
I became a Christian at a young age and as I was going into junior high, I really began to walk with the Lord and develop a relationship with him. There were, of course, ups and downs, but overall, I really desired and tried to walk with the Lord, to know Him more, and to live a life that honored Him. I struggled a lot with legalism and accepting grace. I had this underlying belief that if I wasn’t having consistent quiet times or doing all the “right” things, then I wasn’t as good of a Christian as I should be and that God was maybe just a little disappointed in me. This then filtered itself into how I walked with the Lord and my actions and how I lived my life. I also was a pretty fearful and sensitive person. I was afraid of the consequences of wrong doing – a primary motivation for me to do right. I was afraid of disappointing others and especially God. I was afraid of bad things happening to me or my family. While I outgrew some of these things, this fear also filtered itself into my life and motivations and actions.
On April 26,2006 my daughter, Payton, was born. She was born with such major heart defects they airlifted her to Mayo so they could keep an eye on her. That was really hard to see this newborn that was only 24 hours old put in what looked like a little insulated cooler box and taken away. I was discharged from the hospital early, and my husband, Aaron, and I grabbed a few things from home to go two hours away to Mayo as well.
There were many bumps in the road during that time, but slowly she made progress. It was incredible to see how the Lord had gone before us to meet our needs during that time. He saw her in my womb; He knew what was coming and met our needs in abundant ways. We had some of the best doctors in the country taking care of us. He met our needs for housing and food during this time and so many people were praying for us. We just felt carried by the Lord through all of it.
On June 8th, Payton was released from the hospital. It just came really fast. The day before they told us she could be discharged the next day. So we spent the night in her hospital room to do her feedings (she had been given a g-tube cause she couldn’t eat through her mouth yet) and for the nurse to see we could take care of her. The day she was discharged was a busy day, but somehow I ended up pulling off the little monitors that kept track of her heart rate and breathing and oxygen. I just cried as I did it – to be pulling those cords off her knowing she was finally coming home. We dressed her in a dress that had been mine as a baby. The tears kept coming. I was just so happy to have my little girl and have her free from most of the medical equipment. Then we stayed at the Ronald McDonald House for 2 days. Just in case something happened, we wanted to be close to the hospital. Then on June 10th we drove home with our baby.
We were exhausted having Payton home – so delighted with her, so taken with her, so full of love for her, but so exhausted by the adjustment to having a new baby and by the extra care she required. She was just one of the most beautiful babies I felt like I’d ever seen. She began to smile a bit more and liked to lie on the floor and kick her legs. She was growing and getting chubby thighs. Her hair was lightening to be more of a reddish brown, and I was waiting to see what color her eyes would be – they were such a dark blue, I wondered if she’d have brown eyes. We still had follow-up doctor appointments as well as some at-home therapy that was scheduled. But life took on a new normal, and we just got used to the day-to-day and sort of forgot how sick she had been.
We had been home 8 weeks until we had to go back to Mayo Clinic for some scheduled check-ups with her doctors just to see how she was developing and how her heart was doing.
Payton was such a little trooper that week. We went from appointment to appointment, and she did great. We were so proud of her. At the end of the week, we finally had our appointment with the peds cardiologist. That morning was sobering. That fourth heart defect that they weren’t able to fix before had actually been getting worse. Her heart muscle had thickened because it was working harder to get the blood circulated. He said she was too small to fix this by operation, and they’d try to wait as long as they could before they operated again. They were hoping to wait 3 months. That was really discouraging. We were brought back to the reality that she still had a lot of issues.
On Friday Aaron and I went back to the Ronald McDonald house to pack up and head home. Aaron was putting the last load in the car, and I was giving the baby one last diaper change when she just seized up. Her legs and arms pulled up really straight and tight and she stopped breathing and turned red then purple. I kept calling to her and gently shaking her and a few seconds later it stopped and she was really pale and limp. When Aaron came back, I was crying and partly hysterical trying to tell him what happened and that we had to call the doctor. We knew we couldn’t take her home after that had happened.
We managed to get a hold of the pediatric cardiologist on call, and he wanted us to come to the ER which wasn’t a surprise. They kept her through the weekend with the intent to see what needed to be done on Monday. It was kind of a shock Monday morning when her heart surgeon came in and said they needed to operate right away. He said if we didn’t operate we were just waiting for something really bad to happen. So we had a little bit of time with her before she went back for her second heart surgery. This surgery made the other one look like a walk in the park. They were unable to get her off heart/lung machine after they finished operating. So she had to remain on life support. The doctor on call literally stayed in her room all night monitoring her. Payton made it through the night, and they kept a close eye on her the next few days. They were hoping the life support would give her heart an opportunity to rest and get stronger so she could get off the machine. Her heart didn’t get stronger but actually got weaker. We were told that a heart transplant could be a possibility, but even with that she only had a 10% chance of making out of the front doors of the hospital.
That was a hard weekend. On Sunday, the surgeon that does transplants sat down with us and said she’d be a candidate for a transplant. Aaron and I asked for a little time together. We knelt in a little room by the ICU and had one of the most intense prayer times of my life as we again surrendered her to him and asked what he wanted us to do. We both prayed and then talked a little and felt like the Lord would have us move forward with a transplant. So, late that afternoon Payton was put on the heart transplant list, and the wait began.
The days became weeks. I had started reading to her during the day. It helped occupy my mind while giving me a chance to be close to her and for her to hear my voice. There were such sweet moments of just being with her and touching her. I loved being with her.
Payton was on life support just over 7 weeks (longer than any other baby had been at Mayo). On Wednesday, October 4th, there was a rumbling among the nurses and they kept asking me if I’d talked to the surgeon. A little bit later he came up with a small grin on his face and asked me if we were ready for a transplant. I couldn’t believe it. We had a heart; Payton would get a new heart! Incredibly hope poured into me. Things began to move at that point. Aaron was on his way from our home, and I called him to tell him we had a heart. I couldn’t take my eyes off her as they wheeled her into the OR. I wanted to memorize as much as I could knowing the seriousness of what was about to happen and not knowing what the outcome would be. Aaron and I walked with them to the elevator, and I caught one more glimpse of her hair before she was gone.
We knew we had a long night in front of us. We knew it was out of our hands. It was hard for me to even pray my mind was so distracted, but I knew we had probably hundreds praying with us. That gave me hope as I knew that prayer for her was happening all over the place.
The hope had been that with this new heart she’d be able to come off life support , but that wasn’t the case. After the surgery we went in to see her, and I could hardly stay in there for very long. There was just a heaviness in there and the stress was just more than I could bear. Periodically I’d go in and see her for a little bit, but things that day were not going well. She was showing signs of rejecting the heart. And slowly that day her heart was beating weaker and weaker. My heart was so heavy. Aaron and I went to bed at midnight that night in a little room next to the ICU having had very little sleep. Early that Friday morning, they woke us up at 5 and told us she wasn’t doing well, and we needed to come. It then quickly became clear that we were going to be saying goodbye. Our parents came from their hotels, and we all huddled in her room. The surgeon and anesthesiologist came and said they were sorry and had done all they could. I just felt heavy and numb and couldn’t stand for very long but so wanted my baby to stop suffering too. And so at 8:30 that morning I had to kiss her one last time and walk out of the room and let her go to Jesus.
Follow-up Posts to Heather’s story: