by Amy Bishop on Wednesday, August 31, 2011 at 5:17am
Caitlyn's Story

I wanted to put together all my "notes" and start from the beginning of Caitlyn's journery and share with everyone the amazing road we have travelled down and mostly the miracles that we have seen and how one little baby changed our lives forever. Please feel free to pass this along to anyone who has prayed or asked about us, or to anyone who just wants to hear a wonderful story of faith, hope, and miracles!!

Part One-Birth to ECMO surgery

May 25, 2011 - 8:06 a.m. Caitlyn Rae Bishop was born with a tiny cry. Her body was very blue/purple. But she was crying so i assumed she was fine. She layed on my chest for a few seconds then was taken away to the nursery. (at this time i still had no idea anything was wrong). It took another 20 mins or so to finish up in the operating room. When I was ready to go to recovery we came out of the OR doors and there i saw 10 people starring down at my daughter with a puzzled look on their face. Then my eyes met nathan's eyes and i knew something was wrong. After asking Nathan several times he explained to me that she was having a hard time breathing when she isn't stimulated. I sat in recovery which is across the hall from the nursery and i could see Caitlyns bed. I couldn't see her, just the bed. I saw a nurse close the curtain really fast and yelled for more help. My heart simple dropped to my feet. I think i was in shock. They came in and said she needed to be transfered to St. Louis Children's Hospital because her lungs aren't working. We called our parents and let them know what was going on. Once ARCH arrived with the Children's transport team it took 2 hours to get Caitlyn stable. She fought them for most of that time trying to get a breathing tube down her throat. That is when we were aware she is a fighter. I finally got moved to my "room" and waiting nervous as ever to see my daughter. The transport team brought her by on their way out but i couldn't see her because she was up so high and i had just had the c-section so i couldn't move to see. They quickly took her out of my room because my own alarms were going off. Nathan took off then to go meet Caitlyn at Children's. The Children's doctor that was on board said it would be a 7 min flight and they would call my cell phone when they arrive and get her inside. Then they left. About 10 mins later i just happened to look out my window and i didn't hear anything but i saw the helicopter taking my daughter. That memory is forever burned in my brain. When i see a helicopter I always think of that moment. I had called my family and ask that nobody come down. I felt i could handle it better when i didn't have people there. no idea why but i just felt that way. It was a very long night alone waiting to hear from Nathan or the Doctors. Everytime they called it was something new going on and i was so scared and felt so alone. I had Nathan send me a picture of her and the picture i got wasn't my little princess, it was a very sick baby with many wires and tubes and no skin showing due to the cool down process that they were doing because her brain was swollen. The next couple of days I worked on getting out of bed and walking to prepare myself for the trip to St. Louis. I had been kept up to date about Caitlyns condition by Nathan and the doctors. Finally Friday came and I was able to leave the hospital earlier than normal. My husband picked me up and took me to children's. That car ride there was painful for many reasons. Physically because of the surgery i just had 2 days ago and then emotionally because i knew i was about to get a good look at my daughter for the first time and I was very scared. Would I cry? Would I scream? Well when we got there we met with Dr. Inder (our favorite doctor) and i was in a wheelchair so she got down on her knees and explained to me what was going on and explained that Caitlyn was a mystery. When one of the top neurology doctor, in the top ranked 6th hospital tells you that, you fall apart. I was so scared and of course blamed myself. It could of only been my fault because i carried her for 9 months and i was what she was living on. I had to put on a protective scrub type clothes because they didn't know if caitlyn was carrying some type of diease. I walked in to see my sweet baby girl. small tears rolled down even though i tried holding them back as much as i could. Her beautiful black hair was covered completely by the EEG. She had a breathing tube and wires everywhere. She had Iv's in her legs, arms, head. Basically every body part. The next few weeks were up and down. We had some good days then quickly they turned bad. We were called to the hospital a couple of times and they said "you need to get down here now because she is getting worse very fast" They kept talking about this ECMO treatment because all the breathing machines just weren't enough for her. She was on a machine that gently vibrates her so she didn't get fluid built up in her lungs. But like many time Caitlyn bounced back and ECMO was off the table, no more talk of that. A few weeks later They had discovered something with Caitlyn's lungs wasn't right and they had started talking lung transplant. When i heard those words my heart literally fell to the floor. I felt like i had been shot right in the back. June 15, 2011 They asked to do a lung biopsy which we had thought wasn't anything major. Well with all her issues they had to make a large (for caitlyn's size) incision under her left armpit and they took a piece of her lung out and put in a chest tube to drain any air that might of gotten in while they were doing the surgery. We were told it is a risky surgery etc. and that she might not survive but she did. She did great. I was so proud of her all i wanted to do was hug her, but she was on minimal stimulation which means we can't rub her or talk loud and no holding. That night we went home and had matthew with us and tried to have a normal few hours. Then June 16, 2011 at 3:00 a.m. we got a phone call from the doctors at children's telling us that Caitlyn's heart rate was dropping and i honestly couldn't tell you what else they said. I was so tired from not having slept in a few days and i just couldn't remember what they said besides that they are going to call us back if something didn't work. 30 mins later we got a horrible phone call saying get down there now they are doing chest compressions on her and bagging her (which means cpr). I don't think i have ever moved so fast. We had to get matthew up and drop him off at my parents house then we flew down to stl and arrived 45 mins later. Dr Inder was already there. By then Caitlyn had bounced right back again. What happened was air somehow got in the chest tube or the chest tube failed and she developed a big air pocket which pushed her heart over and collapsed her right lung. She had gone into heart failure. We hung around that morning and it turned into night when Dr. Inder had came in with the results of the biopsy. She said it looked like adult lungs that have been exposed to agent orange in vietnam and blown up and put back together. Yikes! all that in a baby's lung. She said the cause was because of being on 100% oxygen since the day of birth. But that was needed at the time to keep her alive. Dr. Inder got down on her knees and explained to me that it was reversable but there was only one way to do that, and that was to place Cailtyn on ECMO for 2 weeks. We had the surgeon that had done cailtyn's biopsy come in and talk to us about ECMO. She told us that there is a huge risk of doing this surgery on caitlyn because of bleeding. Being on ECMO you are on a blood thinner and the biopsy she had just had was a risk, a big risk of bleeding. The surgeon also said that she had never had a patient come off ECMO successfully. She said that if it were her daughter she would not do it because caitlyn likely wouldn't survive the surgery and once she develops a brain bleed or a bleed anywhere else they are done and there is nothing to do to fix that. But without this surgery Caitlyn was going to die. We had a very hard decision as parents. We were confused and it showed. We had several nurses, social workers, etc. in the room with us but the most important person we had was Dr. Inder. She looked me in my eyes and said "Amy you know me, and you know i know your daughter better than anyone else here. She has us running out of options. Caitlyn is at the edge of a cliff ready to jump and we are trying everything to pull her back in. I know that she can survive this ECMO and I know it is her ONLY CHANCE to survive." After she said that I looked at the surgeron and said go ahead and do the surgery. I was so scared if i had made the right choice and if the choice i had made would kill her. I had seriously lost my mind for a few mins. all i could do was cry and say over and over this wasn't supposet to happen to her. she wasn't suppose to be sick. There were 2 great nurses inside the room at that time Lynn and Karen. They said to each other lets let mom hold her. I hadn't held caitlyn yet except in the OR room but only for a few seconds. With the breathing machine she was one it was not a good idea to hold her but they all thought she wouldn't come out of the surgery so they wanted to give me the chance to hold her alive. When they placed her in my arms i held her bed basically and it was heavy with all the tubes etc. Dr. Inder, Lynn, and Karen had all moved her to my arms and made sure her vitials were good and they walked out and shut our door which is all glass and they just stood there watching her monitor as i sat there holding her and telling her how proud her daddy and i were and how we would be waiting right here for her when she gets out of surgery. I remember telling her to be strong and to keep fighting because i would be right by her side fighting with her. I kissed her for what i was afraid that last time and told her how much she meant to me and how long i had wanted her.

They told us to call our parents and get them down there. As we were walking out of her room (because it was a bedside operation) the actual surgery that was going to preform the surgery said "i don't think this will work, but i'll do what i can" oh geez thats nice. So we went to wait in a sleep room then went downstairs to meet our families and by that time the nurses had called us that they were done with the surgery. Nobody said if she made it or not, so we went running to the NICU and running back to her room. There were tons of surgery crew around but nobody was smiling and nobody was saying anything. Finally we found Sandra one of our favorite docs that we had, had since day 1. and she gave us 2 thumbs up. Ahhhh my heart started to beat again. Soon after we were able to go in and see her. Her room had been taken up by the huge ECMO machine and her body layed there lifeless. no movement of breathing or of her heart beating. Thats all ECMO's job. It is a heart and lung bypass machine to give her body the ultimate rest. She had 2 huge tubes coming out of her little neck. the tubes were long and were filled with her blood. It was very scary to see. But we knew that had to be done to save her life.