Chapter 08

Childrens Hospital is a very colorful place. One would think they were walking into a circus or a carnival at the sight of it. It was such a happy place to house such sick children. The feeling of the struggles of those parents weighed me down as we walked. We went into the Ped. Cardiology unit and again, were warmly greeted. I was warned that this coming test, the fetal echo, could take a while. I was hungry and tired but didnt want to postpone the appointment so I just chugged on. We met with 2 men at first who started my echo. They had such awesome personalities! We were laughing all the way through the echocardiogram. I had never encountered anyone on this journey that I could laugh with, aside from my own doctors, Dr S. and Dr Y. After about an hour, we were nowhere close to done. My sweet nurse coordinator left, and came back with some grapes and a juice for me because she was worried that I hadnt eaten. After about 2.5 hours we were almost done, and they went to get the Pediatric Cardiologist. He came in and took a look at Allisons heart.  When he had seen all he needed to, a total of 3 hours for this test, he took us into a nice room and explained his findings. He did NOT see the AV Canal, as originally diagnosed, and he did NOT see Tetralogy of Fallot as Hospital X had diagnosed. He saw something different. He saw something called Coarctation of the Aorta, as well as a 2 hole VSD. As he was explaining it to us, he pulled out charts and showed us a healthy heart and also showed us a chart of what Allisons heart looked like. Right there, we started forming a plan for her if she were to be stable enough. This man was ALSO willing to treat Allison?! I wanted to jump up and hug him. Allisons new diagnosis was much better than either of the first 2. This could be treated with medication until she was old enough to undergo a surgery, but it was very much repairable, and he was willing to do it! We just had to follow Allisons lead as Dr S. said, and if she were strong enough and hanging on then we had options! Finally, we were done with cardio and headed off to meet Dr R. She is a neonatalogist at Childrens, and came highly recommended to me by several people, including my cousin who works at the NICU. She was one of the sweetest people I had ever met. She didnt seem anything like a doctor! Its like I was talking to another mom about the care of my daughter. She took a long time just getting to know dustin and I. Asking us about our hobbies, beliefs, friends, family and Olivia. She then spent a lot of time talking to us about Allison and what we would like to see happen. When we went over everything again, she assured us that we were being very reasonable and everything we wanted would be taken care of. One MAJOR thing that I hadnt mentioned to anyone at Barnes until I met with Dr R was that I NEEDED my doctor to be able to deliver me there. When we were at Hospital X, and this request came up, it was met with a very cold response of “dont count on it”. I explained to Dr R that if Allison were born still, I wouldnt be able to handle it not having my doctor there to help me through it, and if she were born living, I had to have my doctor there to meet her and to see her after all of the work we have done to get her here. Dr R. was SO kind about this request and said she would make the appropriate phone calls and work with my nurse coordinator to get Dr S privileges at Barnes to deliver me. The way she put it, was that I should not have to choose between Allisons care and my own. She wanted me to have Allie there to give her the best possible chance, but she wanted it to be the person I wanted and NEEDED delivering me. I had an appointment with Dr Staten the next day, so that was another thing I had to talk to her about. Apparently Hospital X told us that the process to get a doctor privileges could take weeks to get done so if we were going to get her privileges here at Barnes, we needed to get started! We thanked Dr R for all of her help and she assured us that we would have a wonderful team in the room when Allie was born to check on her right away. I felt comforted and so thrilled that these people cared about my Allison. I had been at the hospital 9 hours at that point. Still hadnt eaten and time was ticking to get home to take my daughter Trick or Treating which I was so looking forward to (shes only 1.5 so I dont think she would have done well had we actually gotten to go). The tour of the NICU was our last and final stop before home. Our nurse coordinator took us in and one thing that I noticed was the SILENCE. There were babies all around me, and none of them were screaming and crying like a healthy, boisterous baby would. They were all so small! There were some that were all alone in their little beds with no parents in sight, and there were some with their mommy and daddy by their beds crying. This was not a place that I wanted to be at the moment. I knew my cousin was working and as we made our way through the NICU, I started feeling very heavy, dizzy, overwhelmed and emotionally strung out. By the time we found Dee, my cousin, I think I was white as a ghost and shaking. As wonderful as it was that a place like this existed to help these babies, it was not a place that I could stand to be. I had to get out. I was done. This was far too close to my coming reality and I needed to escape. My husband took me by the hand and led me out of the place that was bringing my world crashing down around me. It was an amazing place, but not a place that I could stand seeing again until I absolutely HAD to. God bless those nurses that work there and help those sweet babies. I am not sure I would be able to do their job. We drove home and of course I cried. Tears of joy for the help we had found, tears of gratitude for my pediatrician and OBGYN getting me to this place, tears of sorrow for those babies in the NICU and tears of pain for my own child that if she did live, this is the life she would have. We went and picked up Olivia, far too late to Trick or Treat, and went home. I went to bed exhausted both physically and mentally and had to wake up the next day and head off to another Dr appointment with Dr S. Doctors were quite the norm for me these days….little did I know, I was about to be seeing them a couple of times a week from here on out…

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