Tuesday, December 22, 2009

A Sort of Brief History of Chloe's Life for Newcomers

Dec. 21st, 2009 A Brief History of Chloe's Early Life It is time to do a little catch up for those of you who are new now, or who may have joined this group anywhere along the winding way. Thank you for being here, the welcome mat is out and you are free to stop by and bring a friend anytime at all! I am going to attempt hitting some of the more basic issues that Chloe and the family have faced since the beginning. Please feel free to ask questions afterwards if there is anything I need to explain further. Chloe was born eight months ago yesterday, April 20, 2009. Very little was known about the obstacles we would all be facing at the time of her birth and everyone in our family really walked around in a state of shock for quite a few days. Late into her pregnancy, Jennie, (my daughter) began to intuitively feel that something just wasn't right. She had a lot of lower back pain and started to measure bigger than normal when she was having her checkups. It was felt that there might be a problem with her kidneys and she was sent to a specialist, only to be told that if her pain remained intense, a kidney shunt of some sort might be necessary until the birth. Not a whole lot made sense to us at that point. Jennie kept getting bigger and bigger and more frequent ultrasounds were done. The only sign of impending problems was that the baby did not seem to be swallowing well-babies swallow their amniotic fluid and it recycles throughout the system. This baby was not swallowing well and the amniotic fluid began building up inside of Jennie. On three different occasions, if I remember right, Jennie had to go to the Dr. and literally have liters of amniotic fluid drawn out of her body with a very large and spooky needle. At these times, ultrasounds were being done and it was discovered that Chloe likely had a condition know as Micronathia, which at its least severe would mean a smaller chin that normal. Closer to the end of the pregnancy, I received a fairly hysterical call from my daughter, as doctors had just told her that the other end of the spectrum of this condition might require a breaking of the baby's jawbone and surgeries to repair the abnormality. It was quite the frightening scenario, but other than preparing mentally, what is one to do at that point but maybe pray and believe a little harder that all will be fine! This was about all we knew. We knew that if it was indeed the Micronathia, and if it were indeed severe, measures would need to be taken immediately after birth to allow an open airway. Preparing for a possibly risky birth at that point and gathering together the team in the delivery room was of utmost importance, also preparing the correct date for the c-section, as jennie and Lance lived over 60 miles away from the hospital. Jennie was so very filled with fluid and the date had been chosen. Chloe was a bit impatient and decided to make her presence known a bit early! Instead of being in Denver, they were in Ft. Collins when Jen went into labor. This presented problems immediately, as NO chances could have been taken driving her and yet, Chloe wanted to make her appearance in the world. They rushed to the Ft. Collins, as did I, and were told she would need to take the Flight for Life ride as to ensure prompt and safe delivery. This was a mess for a while as Lance and I both needed to try to beat the helicopter to Denver...we were told that no one could ride with her. We called Jennie's brother, Brandon, to come and sit with her as we took our flying cars to the highway. Turns out they let Brandon ride with her after all and he helped immensely in helping her to relax and make the trip without Lance or her mom! Not long after arrival at the hospital, Chloe's team was in place and we had a baby to get popped out! Anticipation and anxiety were both present in the delivery room, Lance and I were both there to support Jen and before we knew it, Chloe was born! Unfortunately, the Micronathia was quite severe, and Chloe immediately had to have a little device placed in her mouth that would hold her tongue down and allow her an open airway. I will be posting some early pics soon. Even more shocking were all of the unforeseen issues. Many things that looking back, we believe were quite obvious, but never brought to the attention of her parents. Chloe had no ears, the ears that made an attempt at developing were basically little tags of skin on her cheeks that you see now. It was just a day before it was determined that the extent of the missing jawbone was not allowing Chloe even a chance to breathe on her own, as she was not capable of keeping her tongue from blocking the airway. Other scans and tests determined a blockage in her intestine which needed to be fixed immediately. Chloe was headed for surgery to place the trach so that she could breathe and for the docs to fix the blockage. While doing the surgery, many other problems were found. Intestines were wrapped her pancreas, her stomach and kidneys were smaller than they should have been and her lungs were somewhat underdeveloped. At some point, Chloe was found to have two holes in her heart. Just as we got our heads wrapped around one thing, some new situation reared its head and the acceptance, the fear, the relief...emotions covering one end of the spectrum to the next were felt by all. It was not in our imaginations that no one really seemed to know what to do! No one really knew what to do from minute to minute as things changed so quickly and each issue had its own risky implication for being dealt with. Chloe has never been given a particular diagnosis. She is Chloe, the Warrior Princess, and she is about as unique as they come! There are two syndromes than closely resemble her circumstances. One is Treacher Collins, which cause the lack of jaw bone and the missing orbital bones around her eyes. The other is Goldenhar, which causes the organs to be smaller that normal. Treacher Collins is genetic and the genetic testing done reports that this is not Treacher Collins. Goldenhar does not have the facial deformities that we see in Chloe. So, no one will give a 'diagnosis' that makes any sense, because there does not seem to be sense to be made in the big picture. As Chloe has grown, just about every time the doctors expected something of Chloe, she would do just the opposite! Time and time again this has been the case. She is a medical mystery and the love of our lives. She has fought and fought to stay here with us, yet has so much more to endure. She has had numerous surgeries to date on the gastro-intestional system, an open heart surgery (which was very successful, but one I believe many of us questioned she would survive! Thank you Dr. Campball for the amazing job that you did!), and several other surgeries to get her stable and home. It was determined that as she unable to maintain breathing with only the trach and she is now dependent on the ventilator to breathe. This was scary and disturbing and but also proves that you can adjust to and accept just about anything, I guess! Chloe will need many, many surgeries as she grows in order to build her a jaw which will enable her to get that airway open and eventually she will not be dependent on the ventilator or even the trach. Docs will take bone from rib and hip bone grafts to build the jawbones and orbital bones. We pray that her lungs will continue to grow and give her the ability to breathe easier also. She is hearing some, as she has the inner ear canal, but eventually a coclear implant will be placed and ears can also be fashioned and the tags on her face can be fixed cosmetically. Lots of things to be done, lot of prayers to be said, as we are just eight months into this little one's life. Her next surgery, probably March or April, 2010, will be to fix a spot on her spine where the cord is tethered where it should not be and most likely the first surgery on her eyelid to fix the little cleft that does not allow her to completely close her eye. I think that is a pretty complete history for the time I had tonight. It is now 2:15 a.m. and I cannot write more. I have never been good at keeping a journal for long, but Chloe bopping into our lives changed all that. I barely had opened my Facebook account when she was born, but felt compelled to write her story here and garner as many people to pray for our little one as I possibly could. It has been a long, sometimes grueling journey. It has also been absolutely amazing to see the strength that we have touched and grasped onto to, the greatness of prayer, the growth of our faith and the incredible willingness of complete strangers to come to our aid! Stay here with me friends...we have far to go. We have also come SO FAR!!! Thank God we all have each other! Christmas is nearing, and Chloe is at home with people who could not love her more. Merry Christmas to us all! Love and peace to all, Nancy

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