Isabelle

Isabelle was born on April 29th at 7:19 pm, she was perfect and healthy and wonderful. On Saturday May 1st we were due to go home and she had her heel prick done that morning about 6am to do the typical newborn screening. When we got ready to go at about 10 am her bandaid came off her heel but I didn't think anything about it because I assumed she was fine. When I got her dressed I noticed that she had bled on her clothes, my clothes and her blanket, not enough to be alarming, but enough so that we put on another band aid. By the next morning at home, I took off the band aid and there was no more bleeding. Over the course of the next two weeks, her umbilical cord bled much more than I remembered Maddy and Abbey's bleeding, and I called the Dr about it and mentioned it at our office visits on Monday May 3rd and Monday May 10th. Dr. Lockard treated the umbilical stump with silver nitrate on May 10th. When I say the stump bled, I don't mean profusely, but enough so that it left spots on all her clothes and constant so that it never quite got the chance to dry out. On Wednesday May 12th, her umbilical stump started bleeding more heavily, I couldn't get it to stop, and I didn't even get her dressed because it was such a mess. I thought about calling Dr. Lockard, but talked myself out of it because I know I can be a hypochondriac when it comes to the girls and the 3 times we had talked about it before, she didn't seem alarmed. That night the stump finally came off and then the belly button was mostly dried up, but there still seemed to be a little of the stump left. On Wednesday May 19th I woke to the sound of her spitting up over the monitor, but in a way that sounded like she was choking. I ran into her room, and found that she had spit up, more than usual, but wasn't really awake, I thought that was odd, but I changed her and nursed her and she went all the way back to sleep. I took Maddy to the train station for field trip at 6:30, and then Abbey to school at 7:30, and Isabelle slept all the way through that. She wasn't waking up so I decided to meet Dr. Lockard at the door of her office at 8. Dr. Lockard suggested we keep an eye on her for the next few hours and if she didn't get better to come back in. By 10:15 when I still couldn't get her to wake all the way up, I went back and we were admitted to MDH. Dr. Lockard felt that she had some kind of infection so we did bloodwork and started IV antibiotics. By noon she had a spinal tap. Through all of this, she never cried or woke up. At 4pm her body tensed up and she screamed for about 30 seconds and then went limp. The nurse and I both agreed that it felt more like a seizure than crying, so she paged the Dr. Dr. Lockard immediately began making arrangements to send her to St. Francis. During this time she seized one more time. St. Francis wanted a head CT before transfer, and this is when we discovered that she had a massive brain hemorrhage. Before she boarded, they were having difficulties making her pupils react appropriately. She beat us to the hospital by about 45 minutes, and upon landing both her pupils were fixed and dilated. At this point the neurosurgeon told us that there was little to no hope of recovering any neurological activity after such a traumatic brain injury. He said that if she had any chance it would be to insert two drains in the top of the head to relieve the pressure. However, her blood was not clotting, and they couldn't do the surgery only to have that cause more bleeding. They gave her a dose of Factor 7 to help her blood clot and then performed the surgery. The surgery took about 40 minutes, by this time it was 11. The neurosurgeon met with us at about midnight, and she had recovered no new neurological activity. We waited until about 4 when she started to require epinephrine to keep her blood pressure up. We decided that to keep her alive artificially waiting for a miracle would be selfish since the best that we could hope for at that point would be that she could maintain her basic functions (heartbeat and breathing) but that she would never live in anything other than a vegetative state. We made arrangements to donate her heart valves (she was too little to donate anything else), and took her off the medications and ventilator at 5:47 am. We continued to give her pain medication so that she would be comfortable. We stayed with our perfect beautiful girl and told her that we were proud to be her parents, honored that she chose us to be her parents, that we loved her more than we could say, and we made plans with her for when we will all be together again. She left us at 12:52 that day, Thursday May 20th. Isabelle's brain hemorrhage was caused by a Factor 10 deficiency in her blood. There are many different factors that affect blood clotting, and the work together kind of like dominos. Factor 1 goes first which triggers 2 and so on. She was missing 10 completely and part of 9. Her Factor X level was so low it didn't register at all. It prevented her blood from clotting at all, but also made her blood so thin and slippery that she began spontaneously bleeding everywhere internally. The heelprick and umbilical stump was just the beginning. A Factor X deficiency that low is extrememly rare and I found several articles that stated the total reported number at 50. Ever. In the world, ever. Factor X deficiency is a member of the hemophilia family. We now know that both Abbey and I are Factor X deficient, but obviously to a much less severe degree. We have been doing a lot of research and know much more about this disorder than I ever thought I would about anything. I know that there are thousands of people living with hemophilia and they are incredibly dependent on blood product, and that had we caught Isabelle's in time, she would have been too. I believe and am holding on to my belief that God sent Isabelle to us with a job to do. That her job was to let us know that we could be sitting on this condition that we knew nothing about. She gave us 21 wonderful days that I will always keep close to my heart. She was loved, and adored as all children should be, and we were lucky to have her. To stop living our lives would be a betrayal of her life. Clayton, said it best at her service. It may seem like an eternity that we have to live without her, but to her we are never farther away than the twinkling of an eye. I plan to keep her love and warmth that close to me. We are having a blood drive in her memory on her birthday. I need to make sure that she isn't forgotten. I need to make sure that her life wasn't wasted. Please help me do this for her. .