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.

The Arrival- Faith's Story Part IV

The Arrival
In the final weeks before Faith's arrival her growth slowed so much that the Doctor thought she had a better chance to survive outside the womb than in. We began to prepare for an early C-section. I took steroid shots and we visited the Doctor weekly so he could check so many things. We learned all sorts of things about ultrasound and medical care at this point. They began to check cord blood flow, heartrate, movement, and something called the circle of willis. This is an area of the brain that conserves the blood flow if the body doesnt have enough oxygen and energy to survive. The brain will begin to conserve the blood. It was determined that we would try to make it to 34 weeks. We began to count down the days, the hours, the minutes. I could not sleep well, could not function well, I cried all the time. The date was determined a few days before the C-section and everyone in the family fell into place. Family and friends found a way to be there for us at the time of Faith's arrival. On the morning of July 3rd I awoke with the words to a song running through my head. It was Este es el dia.... the spanish version of the hymn "This is the day" I tried to rejoice in that! I took it as a sign of peace and we drove to the hospital to check in. We didnt know if she would be born alive, if she would ever be able to take a breath. We tried to prepare, tried to hold strong but we were SO SCARED. At 1:05 Faith arrived. At first she made no sounds. We had braced for this, I knew it may take a moment for her to be able to breath. But this is what I longed to hear.The NICU team went furiously to work and after a moment we heard weak little kitten cries. OUR BABY WAS ALIVE!!!!!!!!!!!!!!!!!!! I cried and praised God in that moment. They wheeled her by so I could see her sweet baby face and then they rushed off to the NICU. Daddy followed close behind to watch her progress. After the Dr's got me cleaned up and back to recovery our family came by one by one. There were so many family and friends waiting that they filled an entire waiting room!!! How loved Faith was already! Cliff spent his time watching them care for Faith and escorting some family to the NICU to take a peek. I had a few people come sit with me but for the most part I was alone. Eventually someone came and showed me some pictures of Faith- I think it was Cliff, and I cried some more. She was breathing on her own, with help from CPAP oxygen. She was fighting!!!!!! That night I was able to get up out of bed and be wheeled down to have a formal introduction with my little girl. She was so tiny - only 3 lbs and 2 oz. She was on oxygen and breathing hard but she was trying! We didnt know what to think or expect and tried to prepare ourselves for the coming weeks and the adjustment that our lives had to make. How long would Faith be in the NICU? Months? And could she survive?

6 months

6 months
Dear Faith,
I stayed up all evening after Ethan went to bed and watched TV until the time came for the 12th to be here. I just couldnt go to sleep, although any other given night I would be happy to crawl into bed at 9 pm. It is six months since you left. Life continues to move on and I am looking for ways to carry you on with me. I cant stand the idea of life moving on from you. I hold you in my heart wherever I go. You are in my thoughts everyday and it never fails at the oddest times that something will happen or be said to bring my thoughts back to you. It is that heartstring that attaches my heart to yours and although you are not here anymore, it still tugs away.I have been writing your story of course. Well, the story I know of you. It has not been easy, but it has helped to heal my heart a bit. I am trying everyday to remember you with gladness and with less pain in my heart. Sometimes its hard but we are determined to push on to a day that we can remember you and only smile. Your Daddy, brother, and I talk about you so often still. I try to mention all the positive and delightful things about you I can so that we will not remember all those sad moments. I show Ethan your pictures and then we look at his baby pictures and we talk about what you both were like as babies. I make jokes about how you both came out crying... although your cries were a little delayed. I asked him if he knew what kind of car you drive and told him you get to drive a cloud up in heaven. He sleeps with Sprinkles almost everynight and he asks at least a few times a week where you are. We try to always tell him the same thing but in different ways so that he can learn to understand. We tell him that your old body is in the cemetary and your spirit is in Heaven with Jesus. We tell him you dont have any pain anymore. We tell him you never cry or are sad. He says he is sad. He just misses you. We tell him we miss you too.Six months sure isnt very long, is it baby girl? Sometimes it seems like a lifetime ago. I think about holding you in my arms in those last moments, about cuddling you in your isolete, about singing to you in the womb.... I still wish to fall asleep and dream of you at night........ maybe tonight will be the night eh?I love you dearest. My little one.Be careful driving that cloud around :) You are probably the youngest driver ever!!!

Love always and forever and ever with a big kiss and a cherry on top!

Mommy

The Waiting- Faith's Story Part III

Now that we knew about Faith's diagnosis, we began to pray and wait. And learn as much as we could. I joined a message board with other trisomy families. I studied and studied the stories of other children born with trisomy 13- looking for a link, a similarity, something.I tried to return to work as normal as possible. Somedays I would cry quietly at my desk. Or cry during my drive between stores. And Faith began to kick and move. In those moments I held her so tight. I would sit still as long as I could and talk to her, sing to her, and just feel her move. It was a dark time though. We knew there was a good chance that she could die in utero- stop growing. I could go into early labor- any day. I tried to remain hopeful everyday. I hoped and prayed for our little girl so ferverently!!!It was hard to stay upbeat though. Cliff and I were having difficult conversations I had never imagined I would ever have. Conversations about her care.. about what our life would be like..... and asking questions.... What if? What if Faith dies? What will we do?We cried everytime we entered these conversations... we could barely get the words out.... but we pushed forward and tried to prepare. I began to grow depressed. Faith's growth began to slow down and I was placed on bed rest. OH HOW DARK WERE THOSE DAYS. Suddenly my life grew very still. Ethan would still go to Aunt Serene's so I could rest during the day. I tried to sleep as much as I could. I was so lonely. I was used to being so busy. At work I would come in contact with many people everyday. I had very few visitors. I think I could count all the visits I had in that last month on one hand or two hands. I couldnt sleep at night...... I would stay awake until the early morning praying and quoting any bible verse or song I knew to pass the time. I cried rivers of tears. I was trying to stay strong but I didnt know how we could face this- how we could do this. I still don't. In the darkest moments I would sing out one song " Be thou my vision" I would sing it to Faith, sing out to God, and pray for strength, pray that my heart be focused on God alone. I wondered everyday so many times a day " will I meet my daughter?" "will I get to hold her while she is alive?" " will my daughter make it?" " can I give her the care she needs?" " Can I do this?" At night, when I couldnt sleep I would slip out of bed as soundlessly as possible so I didnt wake Cliff and I would slouch down the hall to the study. I cried out to God so many times as I sat in the dark in that room. I cried for Faith,I cried for Cliff and Ethan, I cried for strength, but most of all I cried that God's will be done and that I could accept that. My heartache was so strong it was physical. My heart literally ached inside my chest. I thought it could rip in two.Still I had moments of great faith. Moments that brought me peace. I know God gave me those moments of relief ALWAYS when I needed them most... always after I felt the most broken. I knew that God would hold us. That he would guide us as we walked this journey. That he was in control. And eventually the time came after all the waiting......... to deliver our baby girl....

The Specialist- Faith's Story Part II

We went to see the Specialist on March 26th. We had to wait 2 weeks from the initial call from Dr Smithton becuase the specialist didnt have any available appointments. I even called around to several other specialists to see if ANYONE could fit us in. After what seemed like an eternity, we went in on March 26th. Little would I know that this short 2 week wait would seem so very little compared to the waiting ahead. Cliff's parents came with us to the first appointment with the specialist and this started a trend. From this point on they were by our sides and at every appointment for the rest of the baby's life. We started the appointment with Dr. Elimian by having the best ultrasound ever. The technician was highly skilled and looked at every part of the baby. He confirmed that we were having a girl( although he also said it was hard to tell) and he showed us the giant "O"( this is what we began to refer to the Omphalocele as) Dr Elimian strongly encouraged an amnio becuase there was a 33% chance that our baby girl had a chromosome disorder. He did it right there on the the spot and they inserted a giant needle into my belly while he watched on ultrasound to make sure he didnt hit the baby. She did a funny thing as we watched the ultrasound. She swam over to where the needle had been inserted and put her hand up to the hole to feel for what had come in. I knew she was a smart little girl from the very start!Dr Elimian scheduled us for a follow up the day after Easter- 2 weeks away. We were told the amnio results could take 2 weeks to come back or they could be back sooner but we would go over them at the next appt. We went home with our hopes high and started another wait. I researched Omphalocele's as much as I could to prepare for the next visit and to decide on treatment for our baby girl. I learned that if she had chromosome problems she could have a severe type of trisomy such as trisomy 18 or 13. The majority of sites I visited assured that a baby that had this would be born severely mentally retarded and severely physically disabled. The sites said the baby would most likely die within a year. During this time Cliff asked if we could name our little girl Faith. "WE will need great faith to get through this" He said. I agreed. Our baby had a name.On the Friday before Easter I was off work. Ethan was staying with Mimi and Papa and I was beside myself wondering about Faith. It had been almost 2 weeks and the results werent in. I decided to call the genetics lab. They had to look around for her results and said they would call back. They called back a little while later. They told me Faith did test positive for a Trisomy. 13 but the cells were mosaic. Again I was in shock and didnt know what that meant. I wrote it all down. The genetic counselor asked what I was thinking? "How are you feeling? What are your questions" and talked in a very soothing and soft voice. I just repeated what he had told me about the test results and got off the phone. I got online to look up Mosaic Trisomy 13. I was shocked. I called Cliff crying at work and asked him to come home. He asked me why and I told him the initial results. He drove home in a wild state I am certain. We began to research Faith's condition. It was scary. As sites predicted mental retardation, possible miscarraige at anytime. Less than a month of life was projected outside the womb. We found one site that gave a ray of hope. www.livingwithtrisomy13.org There were children that were living with Trisomy 13. Children that went to school. Some children that danced and played sports. We printed off everything we had and decided to go home to Cliff's parents for Easter. We prepared as much data as we could to share with them. The drive to Elgin was long. The weekend was long. Everyone tried to remain in high spirits but it was difficult. I had to go off to myself several times to cry. I didnt know how we could make it. I didnt know how we could do it. I began to pray earnestly. Faith was now kicking and moving and with each Kick I held her so tightly in my stomach. "stay strong" I whispered. "I love you!"On Monday we went to the specialist with Cliff's parents. He went over the results with us and advised that we could still terminate the pregnancy. He said that due to her condition she was not going to be viable with life. I pulled out the papers from the website. I told him she could live. This was the closest I came to having an outright arguement with a medical professional. He left to have the nurse check my stats and came back in. He said he just wanted to be sure that we wanted to continue with the pregnancy considering the odds. That after 24 weeks we couldnt change our mind. Cliff and I reassured him that we would not be changing our minds. We will carry her as long as God allows!