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

Monday, December 14, 2009

Chloe Grows and Grows! 12-14-09

Dec. 14th, 2009 Gosh, time is just flying by and I feel like I haven't stopped moving in days! It was Friday when I went to visit Chloe, Monday has now almost come and gone! I do believe some of it is that Christmas is so close and there seems to be so much to accomplish. Christmas programs at school, writing cards, getting the tree up and lights on the house all are fun, but added minutes in otherwise full days! Getting to Jennie and Lance's house and spending time with the family is delightfully wondrous and blessing filled. Chloe's first Christmas! Can you imagine that on the 20th, little Chloe will be eight months old? She has now been home about a month, what a time of adjustment and growth! Physical growth and development is incredibly apparent just by watching her for a few moments-Chloe is so much more active and engages in so many activities, some precipitated by others engaging her, some of her own doing! She loves to wave and clap now and even though she has always enjoyed it, she now really seems to help me when playing Patty Cake! Tickling her sweet little feet, or covering them with kisses brings wide and numerous smiles! Numerous smiles were the highlight of the day for me and Jennie said they were not in quite such high numbers due to her teething. Yes, two teeth popping through now and they are bothering her just as they would any baby! She loves grabbing a hand and cramming it into her mouth in the hopes it will bring comfort! It was so much fun to watch Jennie doing Chloe's physical therapy with her, at that time of day it was practicing sitting up and strengthening those muscles! Chloe is getting stronger and stronger and can hold a sitting pose much longer than before! We had such a moment of laughter as she was practicing. Jennie was sitting with Chloe between her legs and letting go at short, then longer intervals. At one point, Chloe started to tilt over on her side, literally in slow motion, and landed with her little head right on Jennie's leg. She seemed absolutely content to stay there and actually closed her eyes and looked as if she would fall asleep. SO sweet! Sleep was not to be had though and she proceeded to show off her newly learned skills to me and to her great-grandma. Talk about sweet, my Mom is 85 and Chloe finds such sweet, loving comfort in the arms of her Nana. They offer so much love to one another, it is a beautiful thing to witness! My visits are always too short and I needed to move along in the day, but not without learning one more thing! I had lots of lessons at Children's Hospital, but had never changed out the Nissan Feeding Tube. No getting around these things and since it is only changed every 2-3 months, Jennie wasn't letting me leave without the really quite short lesson. These things are experiential in nature and I am a hands on learner, so what the heck! The thing that once again amazed me was my daughter's level of knowledge and ease in doing what would literally be impossible to some! Chloe is fed through a tube that is placed directly in her stomach. Early on, various ways of feeding her were attempted, but through every trial came some sort of difficulty and the final decision was to use the Nissan. So, it is literally a tube that fits into her stomach and her formula is pumped through the tube to the stomach. Eventually, the food will be different, blended fruits, rice and vegetables..whatever babies eat, just food processed to liquid consistency. The food is pumped in and when it is gone, the tubing is taken away, a little button covers the opening and feeding time is done! I had to learn what to do in order to replace it if there were ever a need, mostly in an emergency like Chloe pulling it out. I guess kids do! There are SO MANY things we all take for granted when our children are healthy, me included! Sucking a nipple, a bottle, a pacifier, swallowing, being burped! Until Chloe, I had no idea that so many of the things I did with my kids and grandkids were really huge blessings not experienced by everyone! Science and medicine save so many children with miraculous amounts of new knowledge and new technology. We feel tremendously blessed to have had Chloe in today's modern era! Of course, all of us here know how far the power of prayer goes and also the importance of having a strong and willing Warrior spirit. Our Warrior Princess has shown more courage than I could ever imagine conjuring up myself! I am as grateful to each of you as I am to the medical teams we have encountered along the path so far. It DOES take a village, and so far, Chloe and all of us have quite a few friends all over the globe helping this journey to be successful and positive. I have had so many questions about Chloe's diagnosis and since losing my past posts I am trying to throw in a bit of history as I write each time. Luckily, Jennie just happened to give me an opportunity to explain feeding this time. Next time I will tell you a bit about some Christmas angels and more about Chloe's early life. For now, thank you for being here! I would LOVE to make that 4,000 member mark, it has been a tough one to reach! Please continue to ask friends and relatives to join us here. Chloe's long journey has just begun! All my love, Nancy

Thursday, December 10, 2009

Chloe Kicks Butt at Home! 12/10/09

Dec. 10th, 2009 No reappearance of Chloe's story, so you can visit Prayingfornewbornbaby.blogspot.com to get most of the journal if you like. There were so many moments documented in our lives, positive emotions, fright filled days and weeks, hope, courage, faith and love, love and more love! I'm so sorry that it cannot just be continued here, but let's look at this as a new chapter in Chloe's life and maybe, just maybe a different chapter in a real book in my future someday! The weather here the past week has kept me from getting up to visit Chloe, but tomorrow I will be holding my youngest granddaughter in my arms once again! I will have pics posted over the weekend and a new update for sure! Our little warrior Princess has not failed to amaze and delight her family in any way since her homecoming! Beginning her life outside of the hospital has been the best thing ever developmentally for her! The sterile environment had certainly begun to stunt her physical development if being OUT of it is any indicator of that! Chloe is just blooming like a little spring flower held back by the winters lack of sun and warmth. Being enveloped in the warmth of family in her home surroundings has shown us the brightest little sunflower in the garden! Jennie just cannot stop talking about the continuous smiles on little Chloe's face, her alertness, her mental acuity, her complete happiness at being the center of attention in such a fun, fun place. HOME! I guess one of the most major developments is that Chloe is picking up signing, and even more importantly, the first consistent sign is, "Hi, Mom!". She will sign 'Mom' when she wants Jennie and you can just imagine how much this delights her mommy! Most babies do seem to say daddy first, so to get this 'win' is super sweet! (Those are MY words! Mine on behalf of all mommies! HA!) To know that Chloe is capable of communicating in this way is really a big deal and Jen also feels that she is hearing quite a lot. For anyone new to the group, Chloe does not have external ears, but does have the inner ear canals. Many of the photos that you see here have her wearing a pretty big bow, which actually holds a hearing aid. The experts at Children's Hospital believe that she is hearing, it is not known exactly what or the quality of the sound at this point. Sometime down the road, after all of the surgeries to build the jaw and open an airway, this issue will be addressed more. Cosmetic ears can be fashioned from rib or hip bone grafts and the little ears that began their development on her cheeks can be cosmetically dealt with also. Of course, the jaw work is most important, as Chloe cannot breathe without the trach or ventilator at this point. One step at a time, one day at a time! I feel that is enough for now. It is late and I know I will have lots to say this weekend! So, thanks for hanging around as I make this writing transition! Your love, prayers and encouragement are needed as much now as ever! Chloe's road will be a long one, but having made it this far, we know that God has HUGE plans for our little one! Just look at how so many of us have had our faith strengthened and our lives enriched by strangers! We have made so many new friends. God bless you, each and every one! Nancy

Saturday, December 5, 2009

Latest Update 12/04/09

Dec. 4, 2009 HELP! In writing this on Facebook, I think I just lost EVERY UPDATE I have ever written! How? I have no idea! All of the posts are not here, but is there anyone who POSSIBLY has saved my info. and updates???? I cannot believe all of this written life journey may be gone! Please help if you can! Thanks, Nancy

It has been a while since my last update. The most beautiful part of that statement is that I have not felt an immediate need to write one, as so many of my posts in the past 7 1/2 months have been urgent, or a place for me to lighten the load of heavy thought I'd carried for a while. Today, I have only only good news to report, it isn't that I don't like reporting it, just that I don't have that NEED to ask for quick prayers! It is a bit unfair though to not keep you apprised of the happy times too and I will do better with that as time meanders along. You see, it is meandering a bit! Chloe is home and life is unfolding for the family more like it should have about seven months ago. The positives of the past few weeks are numerous! We were invited to my cousin's house for Thanksgiving and before Jen and Lance committed to joining us there, everyone had to be well and a certain level of confidence regarding taking Chloe out for the first time had to be assessed. As the day neared, all the checks were checked and Chloe and family arrived for Thanksgiving dinner with Nurse Jean in tow and we had an ESPECIALLY sweet day together giving thanks. Eating, laughing, loving, playing...all things normal and with a 'new' baby home too! The day felt just as normal as could be and there was not a moment of stress to be had regarding Chloe after all! On the whole, the experience of having the Warrior Princess out of the hospital has been delightful! Kadin, as might be expected from a three and a half year old, had a bit of difficulty adjusting to not being the baby anymore. It was just different for him going to the hospital each day than having to actually share his HOME with her! He is coming along and seems much more content already. Sierra is a trooper and very much a mommy's little helper, helping, loving-she delights in every moment of finally getting to be the big sister she was led to believe she would be. Picking out the cutest clothes, entertaining and holding her baby sister bring her great joy! And, speaking of joy! I wish each and every one of you could be around for just one day to experience the joy in Lance and Jennie. I have not seen my daughter so full of joy, let's see...EVER! My daughter was a born mother you see. Getting through this experience as a family, as hard as it is, has strengthened her marriage, allowed her to learn patience and to experience the grace of God. It taught her to believe in herself and her ability to shine through the dark times and to lean on others for strength when her own was running on empty. Due to these life lessons, getting her entire family home has created a very, very happy mommy and wife. Lance also is just a new man! Not carrying the weight of the world back and forth in a 120 mile round trip each day for months tends to lighten one's load quite a bit! The love he is able to show to his family when they are all in the same house is a beautiful thing to witness! He has worked as hard as Jennie in different ways...together they have endured a journey many of us would not have, this I know as fact! So, probably the most challenging part of having Chloe home is getting the nursing care straightened out. Chloe is supposed to have 24 hour round the clock nursing, which has not been the case due to difficulty in finding that many nurses to just BE there, and then finding nurses that fit the family. This was not entirely unexpected, but still came as quite a bit of a shock to me when, in the past week, two different nurses had to be let go. One for just not being a good fit for the family, the other for just not giving good care. One thing the past seven months taught us is what a GOOD level of care means...it will never be an issue that it is NOT maintained...at least not without a bit of a battle. Chloe is blessed to have some great nurses and Jennie feels comfortable enough with caring for Chloe that the times that there have not been a nurse have gone quite well. If it is the night shift it means a pretty rough day the following day because of no sleep, but they are adjusting. Hopefully, this will all settle out soon! Princess Chloe? Oh yes, I'm sure you have been drooling a bit waiting for me to get there! Sorry, I guess that is one reason to update more! Miss Chloe is ROCKIN' IN THE FREE WORLD!! She has become a baby who smiles and smiles, who doesn't like to take naps for fear of missing something new and exciting, who waves bye-bye, who just yesterday signed, "Hi Mom," to her astounded mommy! She LOVES playing and cuddling with her brother and sister, sitting at the dinner table with the family and taking walks in the stroller in her very own neighborhood! She has her first tooth surfacing and has begun using her legs for bouncing and weight-bearing when placed in her Excer-saucer chair. Two days ago she helped her brother Kadin in a very exciting finger painting activity which ended with Chloe and the most adorable painted little face you can ever imagine. Non-toxic finger paint, specially made by Mommy helped this activity to be even more fun! She is quite the little charmer and is so relaxed and happy to be home that the ONLY time she experienced the drop in the oxygen level (desating) requiring her to be bagged, was the first night home when she was a bit out of her comfort zone! That was the one and only time, the frequency with it happening at the hospital was MUCH higher! It has just been delightful as can be seeing her when I can, and hearing all the wonderful things each day by phone! No one could EVER convince me that the times would be rolling along so well if God were not such a huge part of Chloe's life and all of yours...those of you who continue to pray every day, thank you! I cannot give enough praise throughout my day for everything that has brought us to this point. My own relationship with God has deepened, my family, friends and NEW friends mean the world to me and I know this journey shows me, each and every day, how inter-connected we all are! God bless each one of you and know how much you are loved by us! Til next time, Nancy