The Fighter- Faith's Story Part V

Once I was wheeled up to see Faith I got to see for myself what Cliff had been telling me. Not only was our little girl born alive but she was breathing on her own without machines... she was just hooked up to some oxygen. I was so elated to sit with Faith a moment and get to know her. Her hair was slightly curly/wavy and was a beautiful strawberry blond. Almost orange really. She had the tiniest little toes and fingers and her skin was so red and healthy looking. What a beautiful tiny little girl! She had Cliff’s nose for sure! And of course there was the"O" and it was big.... but not as big as we had once thought. I didnt stay too long the first visit becuase it was kind of scary to see her with so many tubes and so tiny in the isolete. I also knew she was working really hard and I wanted her to be able to rest. We were just amazed at the fact that it was almost 12 hours after our little girls birth and she was thriving. We really didnt know what to think when she was born but I had hoped for a few hours with her. And now we were getting so many more! I thanked God for those hours!And as time passed I was able to thank God for a day! Wednesday came, the fourth of July. Faith had a hard day and began to struggle a bit. This was very scary. But she kept fighting. She was outweighing the odds as each hour passed. What a strong baby girl! We listened to the fire works in brick town as they went off that evening from inside the hospital walls. And we prayed and hoped for more time with our dear Faith.On Thursday when we went to visit her there was some setbacks. As we were walking down to her room we had to wait to go in becuase she was being placed on a ventilator. The first ventilator didnt control her O2 levels well enough and so she was also placed on a second ventilator. It made her little chest shake with its motion and was a bit noisy. They said that she needed some extra help becuase she couldnt keep her carbon dioxide levels down. She had to be sedated while on the vent so that she wouldnt be in pain. But still, she continued to try to breath on her own about 30 to 40 breaths a minute. She was trying so hard!That night we went very late to visit her again. We couldnt sleep and just needed some time with her. I will never forget the fellow that was working that night. He came in while we were visiting Faith and took the time to explain so many things to us. He told us such heartbreaking news about her body and her condition. He explained that since her liver and some of the intestines had grown outside the body... they didnt fill up her belly during development the way they needed to support the lungs. Her lungs had formed longer and more elongated then they should and so this meant the first day and a half she used every muscle in her chest to breathe. She simply grew too tired to continue breathing unassisted on her own and this is why she had to go on the ventilator. He took us into an office and showed us all the xrays and scan pictures of her chest so that we could understand for ourselves. He also showed us that it appeared that she either had no diaphram to hold up the lungs or a weak diaphram that wasnt strong enough. Either way it could not be seen in the scans and the doctors didnt know if it was there. In essence, she would most likely not ever survive off of a ventilator. We were overcome with sorrow in this moment. We thanked the doctor for his time and spent a moment with Faith watching her sleep. We went back to our room for the very longest night of our lives. We cried and held each other and prayed. Eventually around 1 AM a nurse came in to check on me and when she saw us she sat down for a moment. She asked what was wrong and we told her. She offered to call a chaplain to come sit with us and a little while later the chaplain came down. We sobbed as we told him the difficult news we had recieved and he gave us many comforting scriptures and prayed with us. He also asked if he could contact our church to let them know we were there. We said this would be okay. In the morning we got up to go talk with the head of the NICU to find out what kind of treatment we should give Faith now. As we were about to head out the door Deanna from Lifechurch was coming in. The Chaplain had apparently called the church as soon as his shift ended at 8 in the morning and as soon as they heard the news Deanna had showered and driven in to Oklahoma City as fast as she could. She sat with us as we told her about Faith and her prognisis and she prayed with us. Then we went to talk to Dr Sakar about Faith. He explained that her body could not support the function of her living unassisted from a ventilator. We didnt want to take her off of the ventilator because we wanted to give her time but we didnt want her to suffer. He suggested placing a DNR in her file.... He said the hospital would continue to care for her as they had been but if she began to desaturated they would try providing blow by blow oxygen but would not attempt chest compressions. He explained that the chest compressions in an infant her size- a preemie- and with her internal organs not being intact could cause serious damage to the cartilidge in her chest. We never thought we would have to be faced with decisions like this! If our hearts were not already broken... they were breaking into a million pieces as we watched our little girl struggle and fight! And still despite the vents, despite the sedatives, she was fighting to breathe on her own!We told Dr Sekar we would think about it and we left for awhile to discuss it. We prayed and prayed for guidance- to ensure we were doing the best and right thing. It was the hardest decision we have ever made in our lives. The worst most awful kind of decision a parent would have to make.Cliff’s parents walked us over to the veterens center to get something to eat for lunch as we thought about what to do. As we were coming back over and preparing to go talk again with Dr Sekar we saw the pastor from our church waiting to go in the elevator that we were headed for. We had been two large hospital buildings away for a few hours and at the exact moment we went to go into one of the many elevators... there he was in ours. He followed us up to my hospital room and we explained everything to him. We talked and prayed for a little while. And his visit gave us the courage and the peace to go talk to Dr Sekar with our decision. In that moment I was so sad but also at peace. In our most desperate moment God had provided for us some comfort and peace in making the decision. He knew just the moments that we would need visitors the most and they were faithful to come.We placed the DNR in Faith’s file and we waited. We thought this was the end. However, she continued to fight. All through the weekend she continued to fight and we were able to spend much more time with her. I learned to change her diaper, check her temperature, and one of the night nurses Jackie even showed me how to cuddle her body with my hands... As close as I could get to holding her while she was on the ventilator.Then a new week was approaching and we were nearing Faiths one week birthday. I made a little sign for her isolete and we got her a little stuffed animal to go along with the mouse the Hospital volunteers gave her and the Koala that Aunt Dawn got her. Her weekend day nurse Diann took pictures of us with her and made her little signs to hang on the isolete. Jackie, her night nurse took her footprints and also made little signs. We sat with her as much as we could and her levels responded so well when I would sing to her or talk to her. I sang to her as much as I could.We celebrated her one week birthday on Tuesday. Our little girl, our fighter, was still defying odds. We had hoped for a few hours with her and had now been blessed with a week!She was even able to come off of the second ventilator for a short time toward the end of the week but by the next day was back on it. When the surgeons came to check her dressings on Tuesday they manuevered part of her intestines into the stomach cavity. They thought it might give her more support for her lungs.The next day she was so very still. She finally quit trying to breath against the machines and just rested. I was pleased that she was finally resting so well but also it made me uneasy. I didnt know that this was going to be her last full day with us.