Wow! These past 2 weeks have been exhausting, exciting, terrifying wonderful all at the same time. The entire process went very smoothly and we felt very prepared by the surgical staff and by friends who have been through this as well. I don't think we will ever be the same. I wanted to share this with you.
The night before the surgery I don't think either one of us slept. We had to stop her feeds by 3:00 a.m. so that didn't help. We made it to the hospital by 6:00 a.m. and went straight to Surgical Admissions. Tom was parking the car in St. Francis' insane parking lot and Claira and I sat in the waiting area with several other people. I felt like there was a spotlight on her as she was the only child there. I wanted to tell everyone what she was getting ready to go through and yet I didn't want to talk to anyone either. My heart was extremely heavy. Very soon after we were escorted to a room where a nurse tech took her vitals and asked several questions about her medicines, etc. The anesthesiologist that took care of her came and introduced himself and said they would be coming to get her by 7:15 a.m. Fifteen minutes later two nurses in surgical scrubs came in holding a huge warm blanket to take her to surgery. I was a little surprised because I was waiting for someone with a hospital bed to come for her, but instead the nurse took her in her arms and said "she would take very good care of her". Somehow this helped soften the good-bye watching her walk away in what seemed like loving arms. Tom and I both were very robotic and strangely enough it didn't seem as difficult as we expected.
We knew we had a few minutes before they would start as they had several preparations to do first, so we went to the cafe for breakfast. Again ... I wanted everyone to know why we were there. Just 10 minutes before 8:00 a.m. one of Tom's co-workers called to tell us they had just said a prayer for Claira and the surgeon, Dr. Ranne. We hurried to the Family Waiting room where they had assigned a section for us to sit so the surgical team could communicate with us via telephone throughout the surgery. Mom was already there and I was very upset to hear that they had already tried calling us once and we had missed it. Just minutes later the nurse, Michelle, called to say they were beginning the surgery. I tried to control my thoughts, but instead I sat imagining what was happening at that very moment. Her life was changing forever.
The nurse called again to say that she had just gone on by-pass. We sort of sat in silence for a few minutes understanding what that meant. After that the nurse called every 30 minutes with an update. My Pappaw, his wife Louise and Tom's sister Jennifer came to wait with us. It really helped having them there because we had some great conversations. It would have felt that we were there for an entirely different reason if it weren't for Claira's little pink bear that I was holding. We were told that the surgery would take a total of 5 hours, but after only 2 the nurse called to say that Dr. Ranne was closing and that all of her vital signs were good. They would watch her for a few more minutes before taking her to the Pediatric Intensive Care Unit (PICU). We headed up to the PICU waiting room, not before saying good-bye to Pappaw and Louise. He tearfully said "take care of that little one" with a smile on his face. I think he'd had enough for one day.
Not long after we made it to the PICU waiting room, Dr. Ranne and his nurse assistant Debbie Lammert came to tell us how everything went. Gratefully all went well. He was able to use her own tissue to patch the holes and he said they were pretty good sized holes. He said the repair would make a big difference for her now. Tom shook his hand to say thank you and as I shook his hand I felt a surge go through my entire body. I didn't intend to be emotional, but I don't think I have ever thanked someone from the depths of my soul as I did Dr. Ranne. A few minutes later we were allowed to go back to see her. Neither one of us looked at each other, we just ran to the doors like we were in a race.
The PICU is a very intimidating place. Every room is divided by glass doors and every child is watched very closely with a video system and a tech who does nothing else but watch. When we first saw her she was surrounded by nurses. She was lying in a regular hospital bed, which made her look more fragile than ever. Thinking back on what the nurses were saying I believe they were watching us closely to see how we were going to react. They said many times parents faint. We were so grateful to see her again and know that she was done with that part that neither of us cared what she looked like ... at first. I remember scanning her body and soaking in everything that was going on. Then I noticed her tongue was hanging out of her mouth. That bothered me more than anything else. I kept asking if we could push it back in.
The first 24 hours are very critical and so we were only allowed in the room with her for 30 minutes at a time. Her nurse, Janie, was very good about reminding us. It was so comforting know she was there. Everytime we came back she was sitting at her side watching her very closely. It felt like she was the only child in the unit. That night we tried sleeping on the waiting room couches and decided the next morning that we would take Jennifer, Tom's sister, up on her offer to spend the night at her house since she only lived a mile away.
The next two or three days were very difficult for Claira and very hard to watch. This was the part we were not prepared for. Initially I thought she would be kept sedated for a few days before they would try to wean her off of the medicines. Instead they started the next day. The reason they do this is so they can wean them off of the ventilator. It's very important for them to start breathing on their own, not only for obvious reasons but also because pneumonia can set in very quickly if they're not careful. Every 3 hours the respiratory therapist would come in and give her a breathing treatment of Albuterol and then suction out the breathing tube to make sure secretions weren't settling in. She had a great deal of secretions in her nose as well because of the cold she had before the surgery. These treatments would trigger a cough and as she became more awake she would cry, except she wouldn't make a sound because of the breathing tube. It looked terrible and was very hard to watch. We were encouraged to leave when they were doing this so it wouldn't upset us and Tom tried to get me to leave a few times, but I couldn't. That night before we left for Jennifer's I came in for our last visit and saw her crying in pain. I had a hard time leaving because I was afraid the nurse wasn't watching her close enough. I know now she was, it was just the shock of seeing her struggle. I barely slept that night.
On Friday we left to go to the 2nd floor. She got to ride in a wheelchair with Dad.
Saturday morning Dr. Ranne came to say that even though Claira was eating, it simply wasn't enough. She was only getting in an ounce at a time and she should be eating 2 ounces every three hours at a minimum. We would have to choose between putting the NG-tube back in or taking the surgical G-tube route. After he left I cried. The day before her eating had slowed way down and in our hearts we knew it was coming.
Sunday I went home to spend the day with the kiddos and my Aunt Julie who had flown in from Texas to help our family through this. The kids were doing well and were enjoying her. I could tell when I came home that they were feeling secure. They of course missed us and wanted us home. Tom stayed with Claira at the hospital and took her for a wagon ride around the floor.
On Thursday we started giving her pedialyte and then slowly increasing her intake of breast milk to 2 ounces at a time. Unfortunately, she reverted back to not eating. Until recently I had blamed myself for this, wondering if she would've continued eating had we done the NG instead. But, as explained by my good friend and experienced nurse Ann, this was by far the best option for her. The NG was difficult for her to tolerate and very uncomfortable. As she continues to heal she will get stronger and her interest in eating will grow. She already acts like she needs to taste everything we're eating.
Things went very well with her recovery from both surgeries. Friday night they gave her another blood transfusion using the blood they had left from mine and Tom's donation. Her cell count was low and needed an extra boost.
Finally on Saturday we went home ... but not before we met several other amazing families. Our neighbor was a 6-year old with leukemia and a beautiful bald head. A 5-month old named Emma who was Claira's roommate in PICU. She had downs syndrome and endured open-heart surgery 2 days after Claira. And another family who was spending their last few weeks with their 2-year old daughter who was dying from brain cancer. We will never forget them.