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

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

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

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

Thanksgiving 2009 Pics

http://www.facebook.com/album.php?aid=161704&id=691775038&ref=mf

Check out some photos here. I will update this soon! These are Thanksgiving pics!

Chloe's First Week Home

November 22nd, 2009 Chloe has been home for seven days today! It still feels a bit unusual to spell out those words, but it truly is a reality! The week hasn't been perfect, and not without a few bumps, but on the whole it has actually been pretty remarkable! Chloe's first day home seemed to be a bit overwhelming for her as you can well imagine. After seven months of a sterile, white room and pretty much the same routine...just imagine what a shock it would be to the system to experience all the comforts of home. Just the ride home in the van, which is over an hour had to have its interesting moments for her, although she slept about 20 minutes of it and was relaxed enough to have not even one alarm sound on the entire drive. I wrote a bit last time about the day, the night held a bit more stress. Chloe had a bit of a fever, I think because her system was just a bit overwhelmed and there were so many changes in her day. Remember how Chloe is supposed to have round the clock nursing because of the ventilator and that the company providing the nurses was really the hold up on getting Chloe home the past few weeks? Well, Jennie is quite intuitive and had a bit of a feeling about the nurse the first night. She and Lance did go to bed, but left the nurse instructions to wake them if ANYTHING happened, although Jen knew they would be quite sensitive to hearing the alarms anyway! Miss Chloe does seem to enjoy testing new nurses, and with her day a bit of an uproar she didn't vary from her normal course of behavior! If she is not suctioned VERY regularly, her airway gets gunky and her oxygen level drops, which is exactly what happened this first night. Jen and Lance were awakened by the alarm and very quickly took over the suctioning, but Chloe's O2 level had dropped significantly and she needed to get air by being bagged for a bit. Jen says she responded well, as she usually does- this is not a new thing and they have handled it before. I have to say though that the first time I witnessed it was in the hospital with a nurse and it scared the heck out of me! Many things have become the 'new normal' though and we are all feeling competent to deal with this if necessary. Unfortunately for the nurse, I guess she must have felt pretty overwhelmed by the whole thing, as she called her supervisor quite upset when she left the next morning! She did not feel that her training was quite thorough enough and that she was not prepared to deal with Chloe! Home Health people assured her, Jennie and Lance that the training would continue! It IS quite intense if you are new to the situation and I am sure it will be dealt with! So, getting the first day and night behind them was a positive thing. The rest of the week with the different nurses went much more smoothly. Some are LPN's, some RN's, but Chloe's parents feel like they are all quite good and feel so great about all they have learned that there just isn't much anxiety. Chloe LOVES being home! Every single time I speak to Jen on the phone she tells me how happy they ALL are, how much Chloe smiles, how they are finding ways to include her in their daily life all day and each night-I can hear my daughter smiling as she speaks! The two days that I visited Chloe was very happy to see me walk in the house and our time together was extremely thrilling for both of us, she showing off her new digs, me marveling at the sight of my granddaughter in the family living room! The ventilator is portable, so is moved from room to room as needed. She is always included in the kitchen for meal times, and one night when I called, she was in her swing watching her mommy do the dishes! How normal does that sound! The image made me grin from ear to ear! Jennie just keeps saying how wonderful it is to really have her baby home... makes you realize how much just taking a baby home from the hospital is taken for granted! Lance is able to run home at lunch to see her and is just minutes away if needed. These things bring great peace of mind! Friday night brought its first challenge, the possibility of an occasional nursing shift not being covered is expected, maybe just not so soon! Yep, no nurse, so all of the responsibility fell squarely on Lance and Jennie. I went to get Sierra and Kadin to take away that possibility for distraction, but I was once again unbelievably proud of those parents as they barely batted an eye at the duties ahead for the night. Jennie did call me once about 9 p.m asking if I knew how to take a blood pressure, which I didn't. This is something they did not cover at the hospital, as she always had the cuff and if they had had the nurse, she would definately have had it covered. Chloe went without that for the night, but I don't think lacked for any other care! Jen and Lance took turns sleeping and keeping watch and Miss Chloe was a VERY good girl and pretty much just slept through the night!!! I'm sure the morning nurse was much appreciated though, as naps were needed by both of them for sure! Yesterday was another successful day, Jen's highlight for the day was reporting that when she was doing some accupressure on Chloe's toes how ticklish Chloe was was and how delightful an experience it was! Smiles, smiles all around! Tonight...they are without a nurse again! The nurse was on her way and received a phone call that her house had been broken into! Jen and Lance have taken it into stride much more readily than I would have, having the backup would be key to my state of mind, but I guess the folks at Children's Hospital did their job in preparing this set of parents! Chloe certainly was given the right parents to keep her safe and sound, plus many an angel for backup besides! So, I have a very successful week to report! My family is home, the baby is happy, the parents are even happier, my other grandbabies are very happy to be living at their own home once again! That leaves me very elated, very grateful , and feeling ESPECIALLY blessed by the goodness of God. Thank you GOD! Tomorrow Chloe will have her first OT at home and a new week begins! Week two, post hospital Chloe. Stay Tuned and keep those prayers coming! Love and blessings to all of you! Nancy

BREAKING NEWS! CHLOE GOES HOME!

November 16th, 2009 Late Night Oh my goodness! In four days, Chloe will be seven months old! Unbelievable, isn't it, that on that birth day of my youngest grandchild, our prayers held anguish and fear and maybe just a bit of distrust! Today, almost seven months later, as Chloe finally made her way HOME, our prayers held thankfulness and blessings and unending hope! I truly can speak only for myself, and in that, have to admit that there have been times when I wondered if this day were even possible. I have questioned medical opinion and diagnosis, treatment and attitudes as much as I have watched in awe and wonder as doctors made decisions about diagnosis and treatment and moved forward with the calm and confidence seemingly reserved for specialists in the medical field. We have been blessed with best of the best, I believe, at Children's Hospital in Denver, Colorado. There have been so very many things about Chloe that were not understood by even the experts. Whatever one would expect, Chloe would tend to do the opposite of and adjustments continued to be made in accordance with Chloe's body and God's will. Just as one problem disappeared, another would surface and our hearts rode a roller coaster of crazy, crazy emotions! When Chloe was born, we were still experiencing winter here. She continued to be hospitalized through spring, summer, fall and now it is once again winter! So, in the' winter of our discontent' a child was born and tested and in the winter of a different calendar month our hopes have been renewed and faith restored! For Chloe, the day started out as most others of late I suppose. Mommy, Daddy, Sierra and Kadin arrived and got to the business of bathing and dressing and playing. Yet, even Chloe MUST have felt a difference in the air, an excitement, a feeling of something very wonderful to come! "There was a buzz about the room that was a bit unusual and soon Grandma arrived with even more giddiness in her demeanor than usual. Sure enough, doctors and therapists and friends stopped by to send well wishes and Daddy kept leaving with bag after bag of things from the room! Soon, a new lady and man arrived and when they said they were from Home Health Respiratory we all started picking up the pace! and before I knew it, all of my equipment was loaded onto my special stroller. I was wearing a new hat and some really cute new pants and purple shoes! My Grandpa arrived and then, just like in a parade we all briskly left my room and hurried down the hall. Grandma and Grandpa were taking lots and lots of pictures and everyone seemed so HAPPY! As we traveled down the elevator and throughout he hospital, the excitement just seemed to build, and then...it was all just too much for me so I grabbed my cozy and silky car seat toy and put myself right to sleep!" And that is exactly how it happened! Chloe was carefully placed into the van, with the Respiratory Therapist checking and double checking that all was well with the ventilator for the over 60 mile ride home. It was pretty chilly outside and there was no dilly dallying getting that family into travel mode. Before we knew it, we were hugging, then waving good-bye! Jennie, Lance and Chloe were in the van, with the respiratory duo following close behind in a different van, just in case! I left with Sierra and Kadin to return to my house, Grandpa went back to work and Chloe and family had completed the seven month long run at the hospital. There were no incidences to report on the drive home and there have been no problems all evening long! Jennie reports that Chloe seemed to KNOW that she was in a good place at home, it only took a few minutes for me to get a picture message with a pic of Chloe on the living room floor, leaning on a bright red pillow with a great, big, beautiful grin on her face! Jen says that she really loves her bed and is quite fond of the silky edge on the new little blankie in her bed which has been waiting quite some time to warm that little baby! I guess after her first nap she awoke with a bit of a start, not recognizing her surroundings and needed quite a bit of comforting in order to settle back down. Those will be some of the challenges I suppose, but I am POSITIVE that it won't be long until the only thing she is doing is thriving in these most wonderful new surroundings! Many medical people were there to greet her today, there is much to set up when you have the responsibility of caring for a baby on life support. I'm sure it was a busy place and things will be a bit calmer in the morning when I take Sierra and Kadin home to their little sister. Chloe's great-grandmother will go along to 'get her hands on her' also! So, this day is done! Tomorrow, day two of this new chapter in the life of a Warrior Princess. I will continue to keep you updated and hope that you will continue to pray for this family each day. This really is just a new start, Chloe's medical problems remain. Thanks be to God for his love and care for Chloe and this family...and for each one of you. We couldn't have done this and remained intact without either one of you! Love, Nancy

November 16th Morning Chloe's BIG Day! Going HOME!!

Remember when you or someone you knew had a baby? Remember that feeling, after a day or two when you proudly walked out of the hospital and took your new baby home to the safety and comfort of your home? Well multiply that excitement about 200 times and you will have a pretty good idea about how we are all feeling today, as Chloe is preparing to be strolled out of The Children's Hospital and FINALLY taken to her still new, bright and shiny nursery in Ft. Collins. This is a HUGE day. God's hand has brought us to this point, with the love and encouragement of literally thousands of people! The road ahead will be a long one, but today is a brand new one and we can ALL give thanks that it has finally arrived! I will send pictures documenting the day tonight, until then, be happy...and know that we are walking with our feet a few feet above the ground! Love, Nancy

Playing, strolling outside the hospital and sleeping so cozily!

Recent Updates on Chloe Going HOME!

I have been amiss in my duties! I originally write this on Facebook and then copy it to here, which I did not do for the past couple of write ups. Sorry, here they are! Good news all around, so happy reading!

October 30th, 2009

I have just returned from spending quite a few wonderfully fun and relaxing hours with Chloe. She seems just fine and the doctors say that they will just watch, but that nothing seems too amiss. I thought that she looked better than ever and wonder how much of today is prayer being answered or how much of last evening was an over reaction and unnecessary stressor for the family. At any rate, it doesn't matter, because I got to play with Chloe and also did a trach change with the respiratory therapist guiding me. Not too scary and another thing done on my to-do list. Chloe was really quite active, clapping, kicking, smiling, high fiving! (I'm sure it's not a word too) and really engaging with me more than ever. We ended our afternoon with her in my arms, cuddled in and asleep. Oh, what a delightful feeling for both of us. When I returned her to her bed she stirred and got mad until I cuddled as close as I could get without hopping in the crib! She just needed to know that her Grandma was still close. So, keep praying loved ones! I know that God is listening and I know that He is taking very special care of the Warrior Princess. Thank you for your love and concern, Nancy

Nov. 5, 2009 November??? You have got to be kidding me!! Where in the world have all the months gone??? So, it really is November and it really does look like the Warrior Princess will be leaving the hospital soon! Today, I was at the hospital learning all about the home ventilator. Jennie's friend Jasmine and I were trained together, both of us feeling a bit of trepidation in the beginning, but after a thorough lesson by Ernie, the Respiratory Therapist, we both felt pretty competent I think! Jasmine has not been at the hospital much and was a bit intimidated by the whole scene, as we all have been at times! I was very proud of her and her willingness to learn and offer herself to the process. She lives just down the street from Jennie and Lance and having another person there at times to share in the responsibilities is key. Anyone who plans to be around much is being encouraged to learn everything possible about the trach and ventilator. It is, of course, a huge responsibility to have...Chloe needs life support and the implications of not being prepared are immense. We are all taking our part of the responsibility VERY SERIOUSLY! I did have a bit of fun Chloe time after getting my education for the day but Chloe had been awake much of the day and was really needing a nap. So, Grandma just has a way about her...so, I HAD to cuddle her in my arms and pat her little butt a few times and allow her sleepy time! She was so, so cute as she tried to hold those eyes open in order to have some play time too! But, sleep won out and as she closed her eyes, she continued kicking those chubby little legs in a grand effort to stay awake. It was nice to know that I still have the 'touch', even though I really would have preferred a little more play time today. Kadin was there today, and had reached the end of his 3 1/2 year old patience level for the hospital today, so I brought him home with me. What a delight he is and he loves his little sister soooo much! Jen told me today that Sierra told them that the day Chloe comes home ,'will be the best day of her life!" How incredibly heartwarming is that? So, the home healthcare people are just about ready for Chloe. It is my understanding that the nurses that will be coming to the house are also being trained by Ernie next week. I would think they already have some knowledge, but who knows for sure? I would think some nurses go their entire career without dealing with a patient on life support. Anyway, preparation is taking place and the BIG, BIG day NEARS! My, my almost seven months will have passed when she is taken out the door on the 16th! Pretty unbelievable that so many of you have been here since almost the beginning...I'm sure you are feeling the anticipation and excitement ALMOST as much as we are. Keep doing just what you are doing...it has helped to propel us this far! I had an idea tonight as I was filling out a request for The Ellen Degeneres Show. She is having the November Giveaways and I have sent information about Chloe and the family in the hope that the story might be picked up and that Chloe may benefit from it. There was a spot on the page for others to tell them about someone they think worthy of a little help. I thought it would be beneficial if as many of you who had the time to write for a minute would do it. It has been suggested to me before to have everyone write to a newspaper or news station in mass numbers in order to get the desired attention, so I thought this might work for the Ellen show. The link follows, or you can just go to her FB page or Google her show for the same information. It would be SO appreciated if you could help! Until later, love and laughter to all! Nancy http://ellen.warnerbros.com/show/respond/?PlugID=234

Nov. 11th, 2009 This has been a very good week! Everyone here is in preparation mode for Chloe being discharged from the hospital on Monday. It is such an exciting time and really... at times it seemed liked this fabulous day would never happen. It has been sunny and beautifully warm in Denver the past few days. This allowed the walk over to the Dental Clinic in the stroller to be leisurely and fun. Chloe met with the dentist who works with Children's Hospital, of course we have no idea what the teeth situation will morph into as the years go by because of the lack of jaw, but just having the visit gave Chloe a head start. He says that she does have teeth that should be coming in relatively soon, relative to Chloe's own schedule we say! The development is a bit behind schedule but certainly to be expected. It was really great to watch Jennie out with the baby in the stroller, not worrying about a thing that I could see. I was there to handle Kadin mostly and got to observe my daughter just taking a stroll with her baby down the sidewalk! What a beautiful sight. The baby, the stroller, the sunshine, the SKY! Chloe in the world is a beautiful thing. We went from there back to the room, where an hour later a procedure was done from her bedside to check the condition of the bronchial tubes once more before leaving on Monday. Everything looked pretty good and the little branches are not 'floppy' at all. Having been on the ventilator, she does run the risk of this happening, which would just require more pressure support in order for them to work at capacity. For now, all is well! There seems to be so much to remember, to know, in order to keep Chloe safe and well. Jennie and Lance feel prepared and competent and with God running the show, I think we're good! So, as we count down our days, four more from now...leaving on the fifth, we ask for your continued prayers for Chloe's well being and continued good health. The home health nurses are in the process of being trained and we are praying for the best of the best! God is good and we are all so happy right now!!! Love and blessings to all of you who support us so endlessly, Nancy

Checking in on Chloe

News:

October 30th, 2009

I have just returned from spending quite a few wonderfully fun and relaxing hours with Chloe. She seems just fine and the doctors say that they will just watch, but that nothing seems too amiss. I thought that she looked better than ever and wonder how much of today is prayer being answered or how much of last evening was an over reaction and unnecessary stressor for the family. At any rate, it doesn't matter, because I got to play with Chloe and also did a trach change with the respiratory therapist guiding me. Not too scary and another thing done on my to-do list. Chloe was really quite active, clapping, kicking, smiling, high fiving! (I'm sure it's not a word too) and really engaging with me more than ever. We ended our afternoon with her in my arms, cuddled in and asleep. Oh, what a delightful feeling for both of us. When I returned her to her bed she stirred and got mad until I cuddled as close as I could get without hopping in the crib! She just needed to know that her Grandma was still close. So, keep praying loved ones! I know that God is listening and I know that He is taking very special care of the Warrior Princess. Thank you for your love and concern, Nancy

Need Prayers Oct. 29th, 2009

Oct. 29th, 2009

I really am at a bit of loss for words at this time, but need to share the past few hours and ask for added prayers. Jen got a call from the doc about three hours ago telling her that Chloe had been lethargic and the soft spot on her head was protruding, leading the doctors to believe that there was fluid amassing there. A CAT scan had been ordered and they were waiting for it to be completed and read. In comparing it to a previous one done at some point, it was determined that a small amount of fluid had been seen before and that maybe it would not be of consequence. A neurosurgeon who needed to view it was on his drive home and would check the results as soon as he arrived they were told. We waited and the next call I received from Jen she blurted out,"Chloe is having brain surgery at 7:30 in the morning. They are going to put in a stunt or something. I'm just in shock and don't have many answers." Of course, our stomachs dropped to our feet as yours probably have and we quickly discussed a plan for the morning. Joe and I both jumped on the internet, searching for any possible information we could come up with and in a few minutes the phone rang again. This time Jennie blurted out, "No surgery in the morning!" and I heard a huge sigh of relief. As it stands, at some point, Chloe was sat up and the position change seemed to make a difference in whatever was being looked for at the time. So, as far as I know right now, Chloe will be watched and studied (what's new about that!) and for the moment things have settled down. This incident only raises questions tonight and none of them will be answered right now. These are the nightmare scenarios that can become reality as sure as the sun rises in the morning. These are the things that we pray never happen. This is just one thing that cannot happen if Chloe is to go home in just a few weeks time! We have sighed a collective sigh of relief for now, but if my daughter is anything like me, it just puts us back on alert instead of remaining in a bit of a dreamlike state, believing in magic and fairy dust and the belief that nothing else could go wrong after all these many months. Living the magic moment for just a while has been good for all of us. Being thrown into the realistic madness of our Jekyl/Hyde experience isn't a good time, my friends. Please send renewed prayers for our good Lord to take good care of our little Chloe and to lessen the madness for all of us who love her so dearly. This has been one scary night and we ever so mightily need to return to Pixie Hollow.

Chloe's Transitioning to Home Continues!

Oct. 27, 2009 Well, well. It has been too long since I have updated you all, but life has a way of derailing the best laid plans, I'm sure everyone here can relate to that! It is a good thing that I have waited though, because since my last post the pervading attitude of the transitional period has much improved. I guess any big change causes some stress, and when a change this big comes around, the stressors also loom larger. This is Chloe's life, the 20th was actually her birthday six months ago! Seems quite unbelievable that we all have that time behind us; all the thrills and chills, worries, celebrations, hitting the knees double and triple time, in both prayers for strength and courage and prayers giving praise and thanks for the unending gifts we have received. With the illnesses and surgeries behind us, who wouldn't have the HUGE expectations we have for Chloe's well being at this point in time? Spring, summer and fall have gone and Chloe is not yet home. She is doing so well though and the thing keeping her from leaving the hospital is waiting on the home health care. This frustration is still there, but Chloe growing and staying well has softened the blow of waiting even longer, and the staff on her new floor has taken note of level of concern in keeping her well while she is in wait mode and are taking good care of our little Warrior Princess. I wonder how that all would have gone without the added bit of chaos at the beginning, but somehow I am convinced that it all happened just as it was supposed to and that Chloe is much better tended to because of it. So, big news of this day is that Chloe, sleeping soundly, made her way into the world today! Yes! She was bundled up, placed in her car seat with the ventilator attached to the stroller part and was strolled right out the door into the crisp and somewhat gloomy Colorado day! She was taken to the family van and taken on a car ride! My heart just flutters a bit as I imagine the excitement and at the same time, seriousness of her parents methodical placing of Chloe and the equipment into their car! The respiratory therapist was there for the ride, but the whole thing went off without a single alarm ringing out and Chloe staying soundly asleep! So, her big day out basically went without notice by Chloe, but not by all of us! I was unable to be there, but anxiously awaited the results. Jen noted that Chloe did raise one eye a bit as they walked into the day but quickly closed it. She also must have felt something a bit different as she was placed into the car, but nothing much to note for her, as her little peek was it and a peaceful nap followed. Another big test was passed on this day, all of these milestones lead Chloe down the path to her life at home, surrounded by her loving parents and ever so interested and lovely siblings! The day is coming friends, and it is not long now! It may be as late as Nov. 16th, as we continue to wait for nurses to be hired and prepared for Chloe's extra special needs, but it is worth waiting for! We ask for your continued prayers, we ask that you continue to invite positive and loving people here who share our vision in making Chloe's life wonderful and who would like to take part in helping her to become only the best she can be! We have had excellent care, amazing surgeons and doctors and the best nurses on the planet for much of her life, we have met friends who have appeared out of nowhere and given time, money, encouragement and love. We have, and continue to have the Greatest Healer of ALL on our side, our Lord, who sent us Chloe and most definitely has major plans for her life!! We will continue to need each one of these components for years to come...so we will build on what we have now. Thank you, each one of you, for what you have given to this ever so remarkable baby and her family. So many have gone the extra mile to bring smiles to our faces on the most difficult of days. Thank you from each one of us!! All our love and blessings to you! Til next time, Nancy P.S Hopefully, tomorrow we'll get snowed in and I'll have some time to post pictures!!! We're well on our way as I write this!!!

Chloe's First Week Outside the NICU

Oct. 17th, 2009 I thought that I would try to get a short update out tonight before I head to bed. There have been so many situations taking place in this family's life the past few weeks, each one carrying its own level of stress. It has been difficult to keep my mind on writing and even more difficult to find the energy at the end of the day to compose a note when the days all run together and time has not been on my side. So, I'll give it a shot and most likely follow-up soon. First, before I say another thing, let me say that Chloe is doing quite well. She has had a few difficult breathing situations this week, but other than that she continues to grow and is developing quite well. The highlight for the week is probably her ability to determine by some sense, (not sure which one exactly), if she knows and trusts someone who walks into the room... right off the bat. If Chloe thinks for a second that she cannot trust someone, she IMMEDIATELY closes her eyes and plays possum!!! Literally, she will pretend to be asleep, slowly peeking out of an eye or two and making a determination whether she will engage or not! Isn't that just too clever? She is pretty consistently turning from side to side and engages in so much more play! My claim to fame is teaching her the high five, which she has been doing with me for a few weeks, but has now made the leap to playing with others. Jennie said yesterday she actually high fived a doctor who came into the room at some point. She is getting a lot of positive reinforcement on this one, which of course leads to her doing it more. What a smart and funny girl! So, this transitional phase for Chloe has not gone particularly smoothly, and that really is putting it mildly. There has been a tremendous amount of frustration with the hospital, the different level of care and the home health network. I won't go into a lot of details, but when Chloe was moved, the home health company in Ft. Collins gave Jen and Lance the impression that as soon as they had the go ahead, they would be ready for them. You all know how hard Chloe's parents have worked all along to learn as much as possible about her condition and treatment and that there are certain experiences that need to be checked off before they can go home with her because she is on life support. These include a complete understanding of the workings of the home ventilator and what to do in any conceivable emergency. It was felt pretty early on that they would be able to pass these tests pretty quickly and that the mid November date was really stretching out the release date. By the second day on the new floor, Jennie was hearing that it was quite possible that they would be there two weeks and be shown the door. At that point they were told by the home health agency that they were not ready and that it could take up to a month in order for them to have the personnel necessary to care for Chloe at home. Talk about disappointing. Let's take a step back and recall what the move to the transitional floor was expected to look like. 1. Chloe moves, Jen and Lance are expected to be there many, many more hours, as nursing time will be lessened in order to give them the hands on time they need that will simulate the home scenario 2. Jen and Lance are each expected to do a 24 hour shift independent of each other 3. Jen and Lance arrange for a two week time frame when friends and family will spend the majority of the time with Chloe's siblings, as they are now not allowed on the floor or in the room with Chloe because of flu season 4. Chloe's time with her parents will be spent learning the portable ventilator, testing out her car seat, taking strolls inside and outside the hospital and even having a car ride to ensure the safe transition to home So, where do we actually stand in the scheme of things? Not too far at all! Jen and Lance had some training on the portable vent, Chloe passed her car seat test and did get one stroller ride down for an MRI, which was not expected and upsetting to her parents. They used up about a week of their 'planned' daycare, spending days and nights with Chloe out of concern for her medical safety. Coming from the NICU, where the highly skilled nurses are two babies to a nurse, to the level of nursing care the first few days on the transitional floor has been concerning and literally quite scary. Imagine being a parent during a serious breathing episode being turned to and asked by a nurse," What should I do?" Imagine being CHLOE'S parents, after the past six months of unexpected illnesses, having a resident doctor walk in your room with a mask on, no gloves, not stopping to wash her hands before taking her stethoscope out and listening to your baby breathe...then being asked by the baby's mother if is she is SICK and getting the sarcastic response," Hence the MASK!" Just IMAGINE, if you are my daughter, how YOU would feel. Angry? Horrified? Astounded? Shocked? These words really coming from a Dr. after being told earlier that there were nine cases of confirmed H1N1 on the same floor? Well, my initial thought was what happens when a person gets in the middle of a mother bear and her cub. I'm sure that many of you mothers out there are feeling an iota of the feeling right now! I have it not only for my special needs granddaughter, but also my daughter, in this case!! Nothing even CLOSE to that ever happened in the NICU. They were, each and every one of the people who walked into Chloe's room so very, very cautious and careful about germs and this level of concern should be no different any other place in this hospital. Period! So, after having had many of their highly anticipated expectations shot to hell in a few days time, that was pretty much the last straw for Jennie, with Lance not far behind. Jennie demanded the 'sick' doc leave the room, angry words rang out and chaos ensued. It wasn't pretty, but in my estimation, with the severity and complicated nature of this baby's life so far...not unexpected. My daughter and her husband are human beings, with human feelings and human breaking points. They were pushed to the breaking point his week and some floodgates of frustration and fear were opened. After expressing concerns all week long and feeling that they were not being heard, or even listened to in the first place...having home health care extend their stay after being assured that they would be ready for Chloe...not having the experience look anything as it was told to them...well, it just didn't make for a very successful week of transitioning. I can report, that by the end of the day Friday, compromises and negotiations were made that benefited Chloe and her family. The nursing has been stepped up, the concerns addressed and hopefully Chloe and her family will all feel some peace at the end of each and every day that they remain there before going home. All anyone wants is for Chloe to be safe, for her parents to be in one piece when they leave there to carry on many a year of care for Chloe, that her siblings feel loved and cared for throughout the entire experience and that every day holds smiles and hugs and love, love, love. So, keep the prayers coming fervently, as you just never know where or when they might be needed. Yes, we all gave sighs of relief and celebrated Chloe leaving the NICU. Hopefully, her time spent outside of it before going home will be shorter rather than longer. Seems like a mighty wild ride about now! Don't forget to keep inviting friends! We need each and every one of you and the group is fast approaching 3,300!

Love and laughter,Nancy

Chloe Leaves the NICU!

Oct. 12, 2009 Day 1! Chloe has just spent her first day ever out of the NICU! Yes, yes, yes! April 20th to October 12th...seems like this day would never come, but it HAS! Jennie arrived early at the hospital this morning with great anticipation, not knowing exactly when she would rise up and out of the unit but knowing it would be THIS GREAT DAY! I think it was about 2:00 this afternoon and one of our favorite primary nurses, Jenny, was there to make the trip with them. They really do think of every aspect of a child's life at this hospital and noted how important it was for Chloe to have a familiar nurse for a while in her unfamiliar surroundings. New nurses were also waiting in anticipation to meet Chloe and it all happened without a hitch. So, it has been a very successful day and Jen reports that Chloe didn't really seem to notice much being different! As these days of transitioning get rolling, she will certainly experience many new things! They will now be able to move her about the unit, take her outside, will have to take her for a little car ride and lots of other things that get absolutely taken for granted when you don't have a sick baby! Jennie and Lance will basically be doing all of her care just as they will be expected to do when they really, really, really go HOME! They have been watching and learning for a good many months now and although there must be a bit of trepidation, they are mostly feeling excited, competent and ready to go! Chloe has been such an amazing little warrior, hasn't she? I know that we have all been scared to breathe at times because of the seriousness of issues and the seeming inability to go just a few days without a new problem surfacing. Now, the feeling is just different, entirely different. Chloe threw off that last virus and headed into the home ventilator trial with the opinion that it was time to show everyone what she could DO! Although it was felt it might be too early, that maybe she was still too small, the Warrior Princess never stumbled in this attempt to make her way home. Things changed when school started for Sierra. The kids weren't there so much, then on Oct. 1st, the unit got closed to siblings visiting because of the flu threat. I believe in the depths of my heart that she heard all of our voices in unison encouraging her to be well enough to go home to her family, because her family would have less time with her. With God, all things truly are possible. This child, this very, very special baby has brought so many new and beautiful people into our lives. The journey really does begin with a few steps and having this tremendous amount of support in prayer and good wishes has often pushed us past and through the hardest parts. Now, with continued prayers for success and the love of so many wonderful people, we need to celebrate this moment together! Chloe's release date is dependent on how soon Jen and Lance get signed off on a list of must know things, it could be as early as next Tuesday or may be a bit longer. I know you will all keep your prayers in priority status, as this is just as critical a moment in their lives as any up to this point. I love this family, the courage and fortitude blow me away! Thank you all for the help along the way. I am very busy with many responsibilities these days and unable to write quite as much, but will absolutely keep you all updated as much as possible! God bless you all! Nancy

Preparations to Go HOME!!!!

Oct. 7, 2009 Sometimes when I sit down here to write these updates and look at the date of the last one I am no less than astounded at how much time has passed! I know that I posted pictures a few days ago but had no idea it had been a week since I'd updated! Life is hectic and more than a little chaotic lately and my time for writing seems less and less. I apologize. If you are on my Friends page, you probably get a few more snippets of information, so if you'd like to do that feel free to send me a request and I'll get you on the page. Chloe, our little Warrior Princess, is forging ahead! There have been a few incidents with her breathing since the ventilator switch, but I guess this is to expected. It is better to know the glitches before she heads home than after, for sure! She is growing and warding off any of the viruses or bacteria that have plagued her in the past and the plan for discharge is moving full speed ahead! Monday is the day for moving to the floor which will help to transition her home. When the conversation began in ernest about discharge, the day was set for the 16th of October! There are many tests that her very proud and happy parents must pass in order to walk her out the door, but they are both up to the task and rarin' to go! Today some time was spent with the respiratory therapist taking apart and putting back together the ventilator, tomorrow they will practice other situations that they need to be prepared for, such a s bagging Chloe if need be in any sort of emergency situation. This is nothing all of us haven't seen and feel we could do, but under pressure and possibly alone at home would make it more necessary to have it just be more of a typical maneuver. (If it could ever be considered that I suppose!) Much of the things that parents have to learn before these babies can go home, Jennie and Lance have being doing for months now! This includes changing out the trach tube, suctioning her airways several times a day, bathing her and making sure no water gets into the trach tube, doing much of the care themselves! I believe that Jennie feels that it has gone unnoticed by some of the staff how much she already knows and does. This has frustrated her a bit, but Chloe knows! When she is there beside Chloe all day long, she is already confident enough to take care of most of her needs throughout the day. Being ahead of the curve here is all important, because it could get Chloe home even faster. Many, many parents have never experienced a baby with Chloe's complications (actually, staff either!) and when they are in the hospital, they allow the staff to take more of the responsibility, or may not put in the hours that we have all diligently made made part of our lives. Therefore, when they get the go ahead that discharge is on the horizon, there is much to do. I do not believe this is the case with this family. Jennie and Lance are both very bright and I'm not sure I have ever met a more observant person than my daughter! Since she was two years old she has been developing that skill and rarely does anything escape her! Lance seems much the same and they are both ready to take on the new adventure of welcoming their little princess to her home! So, we will see when the actual date occurs, but don't be surprised if it is sooner than later! As they are tested on their knowledge, thay will be spending more time at the hospital and that means less time with siblings Kadin and Sierra. This will be difficult on everyone, but the little ones are no longer allowed on the unit because flu season has arrived. I will help as much as possible, as well as Jen's friends and family that we have nearer to Ft. Collins. Family time will certainly be disrupted but just temporarily, and in the end...a brand new intact family will reside in one home in Ft. Collins! Praise God from whom all blessings flow! It seems impossible that Chloe is almost six months old! The ups and downs, the fears and cheers, the bended knees, the tears, the smiles, the dread, the anticipation, the encouragement, the new friends and family and relationships forged, the enlightenment, the disillusion, the healing, the sickness, the love, the loss of ones counted on, the feeling in the gut when the right thing isn't being done and the feeling in the heart when it all goes right...wow! What a trip it has been. To get Miss Chloe out of those hospital doors and into her own home and the loving arms of her family will be the first completed leg of this all important journey. The following chapters will take on lives of their own, as this story will continue for years to come. But now, Now...in this moment, all is good. We are grateful for each and every prayer sent by each and every one of you. Can you even begin to imagine the numbers? 3,200+ people just here, speaking and praying on Chloe's behalf who knows how many times in a day, congregations all over the globe adding their voices, friends of friends learning the story and sending their best wishes and prayers. All of these things have kept Chloe ALIVE and have kept all of us SANE and prepared to go the next mile, or ten or ten thousand. Please keep it all coming! There are big days still to get through and now we need her to stay healthier than ever and be ready to rock and roll into the real world! My updates will come as we get closer! Thank you, everyone, for all you do!!! Love to all with my greatest feelings of gratitude!!! Nancy

Chloe's Big, Great Day! 9/30/09

Sept. 30, 2009 Today was really the big day! Yes, Chloe was switched over to the home ventilator with absolutely no problem whatsoever! Yep, this is the machine that will eventually take her home! and she batted nary an eye at the exchange! There had been quite a lot of build up to this day, as the initial date set for the attempt was Monday. This wasn't possible because Sierra got sick and it was postponed so Jennie could be there for the event. Sierra was better last night and I rearranged my schedule in order to watch Kadin today so that Jennie could attend. Well, wouldn't ya know, he ended up being sick in the middle of the night, making it impossible for Jennie to attend!! The possibility of her carrying in germs to Chloe was high, Kadin needed Mommy, I couldn't expose my mom to germs...we just couldn't make it happen. So, as Jen put it, "The day I've been waiting almost six months for comes, and I CAN'T be there!!!" She was so disappointed and so very, very anxious! Can you imagine how scary that was for her from a distance? All the anxiety was unnecessary, as Chloe has been preparing just as long, and she was READY! Mommy or no Mommy, the little Princess Warrior was ready to make her move! Since I had cleared my schedule anyway, I did get there and other than there being a room full of people changing the machines...there was not much excitement to speak of UNTIL we knew that Chloe was going to be just fine. What a tremendous feeling it was to know that she had just taken such a huge step to joining her family at home! Ernie, one of the Respiratory Therapists, stated that he felt she was actually doing a bit better than on the other machine! They will, of course, help Chloe out a bit and not work her too hard to begin with, but he felt that the new vent was allowing more air to get deeper into the lungs. This machine is so much smaller and compact, I just can't express how thrilling it is to know that it will fit into a CAR that can travel to a home to be put into a nursery never yet seen by little Chloe! On the other hand, so many of you have been praying, reading, encouraging and loving her for so long that you must also be celebrating this news just as we are! Tomorrow there is a big case conference to discuss the transitional plan...hopefully Jennie has found a babysitter and won't be attending by conference call! Chloe will be tested out on the new machine for a while, then Lance, she and Chloe will spend as much time as possible together on a different floor outside of the NICU, learning everything they hopefully might ever need to know about caring for her at home. It will be an intense time and I will be there as much as possible to also be taking in as much as I can. There is some normal nervousness about taking on the full responsibility, but there will be in-home nursing and the benefits FAR,FAR outweigh the concern. So, there ya go! Was this a great day, or what??? Now, we pray for continued success and for nothing to get in the way! Today, the nurse had the Warrior Princess dressed in socks from Mount Rushmore that read," Take a Hike!" Jennie felt they were perfect for the day, as Chloe was saying, "Take a hike big vent! I'm movin' on without ya!" And so we do!!!! Love and blessings to all!!! Nancy

Just a quick Update 9/28/09

Well, never make a plan! That would be my other mantra! HA! Just thought I'd send a quick note to let you know that the scheduled trial for today was postponed until tomorrow. Sierra actually got sick and Jennie did not have daycare and stayed with her today. Docs agreed to put off the new trial until tomorrow, Sierra is better tonight and all is still well. Jennie is determined to be there for Chloe, and although it was a disappointed, we all know the others need their mommy too! Jen will be coming into a stressful time after Wednesday though. The hospital policy will not allow the kids into the room beginning Oct. 1st because of the flu during the winter season. This will be rough, as Kadin often stays with her in Chloe's room during the day while Sierra goes to school. The daycare center is extremely strict in their acceptance of the kids at Children's. It has been hard any time Chloe has any kind of virus as she is then considered to be in isolation and the other kids are not allowed in daycare. Understandable, but it really complicates an already complicated situation! We will make it work! So, prayers for Sierra to heal completely and for the rest of their family to not get sick! Nothing can stop Chloe now! Love to all, Nancy

Chloe is Making BIG Moves!

Sept. 26, 2009 Good morning. It is a beautifully warm and sunny day here in Colorado after a week of rain and very chilly temperatures. I have spent the past two weeks moving from one house and unpacking in the other along with the many other things I do in this ever so wild journey that I find myself smack dab in the of. I live in a small town, Olde Towne Lafayette, and today is Celebrate Lafayette Day. As I sit on my front porch, there is a beehive of activity everywhere I look. We live three houses off main street and in about an hour a parade will begin. The tent at the end of the street is where the Apple Pie Baking Contest will be held and across from that is tent where live music will happen throughout the day. I am very happy to be in the middle of this celebration and all that goes with it. Why? It reminds me so very much of the Chloe experience so far! When we all began the journey of having Chloe in our lives, we were a small little group of family awaiting the birth of my daughter's third child. Just as the miners who built this town, we worked hard in our lives and dealt with the stressors of life as we built our relationships and community. This is a great little town and although our lives have changed, as has the town throughout time, both it and all of my family have reason to celebrate today. Times are tough here as they are everywhere across the country, but we all can still find moments or situations to celebrate. At least we should. We have become a community here in this group, supporting Jennie and Lance, Chloe, Sierra and Kadin and the rest of my family. I have met so many wonderful people through this group and we all try to lift each other up when there is a need. That calls for celebration! Just imagining the parade that will stroll through the street in a few minutes reminds me of all the people who have paraded through our lives in the past five and half months. Wonderful people like you, doctors, nurses, physical therapists, occupational therapists, community members, neighbors, and numerous others who have come to us through Chloe. Everyone has the best intentions in making this experience positive, looking forward each day to the best outcome for all involved. It's been a pretty memorable parade so far, and we are all much more intact because of those people who have registered to be in the parade. I celebrate them all today! It has been a long and sometimes grueling journey, but today...today is a good day! Chloe has been doing very well. In the weeks that I have not written she has been well. No unexpected illnesses have popped up, no new viruses, no shocking news in the middle of any particular day. Our Warrior Princess has begun to thrive and is playful, alert and gaining that most important weight we've been waiting for. She has held the 13 pounds and added to it. Those hard earned pounds have earned her the right to begin her home ventilator trial this coming Monday! This is such a very important moment in Chloe's life, and will require more prayers that I have asked for in a long time! If all goes well, Chloe will be kept in the NICU for a while, then moved to another floor OUT of the NICU to really prepare for her transition to her HOME. The target date is around Thanksgiving, which seems immensely appropriate to me. It still seems like a long time when you say it, but after this much time, it just seems like drop in the bucket, probably because the end result is such an exciting one. God is good, all the time, and Chloe coming home in a way that will ensure her health and continued growth has been in His hands all along. Sometimes his timeframe seems questionable, but not knowing the plan certainly doesn't mean it isn't a good one! Chloe has been nestled in the wings of angels since she took her first breath, as has the rest of this family. I know that she will be home, wrapped in the arms of her loving family when the time is RIGHT, undoubtedly! So, pray, dear friends, for the upcoming trials to run smoothly, for Chloe's continued growth and the family's good mental health along the way. Yesterday I spent some time with Chloe and had such a wonderful time. She was awake when I arrived, sitting in her bouncy chair, ready to play! I had some time to engage for a bit before the physical therapist arrived, but when she did, it was a beautiful thing to watch. She worked with Chloe on sitting up, holding her head up and strengthening her muscles. Little Chloe did very well and was happy the entire time. When placed on her tummy, she grimaced and showed some irritation for just a moment, but then decided she kinda liked it and moved her head back and forth to find me. It was fun and Chloe was happy! When the PT left, I held her and we played a while, I sang to her and she fell asleep in my arms, cozy and comfy in the crook of my arms, looking so content and loved that it made my heart sing! Soon, a team from Respiratory came in and started the change over from the vent they have there to the one that will replace it on Monday. They will gradually change it over and Monday's experience will not be too much for Chloe. It was a bit intense for me, as they were changing the tubing to bigger tubes and while that was done, they had to bag Chloe in order to continue her breathing support. They obviously knew what they were doing, as Chloe slept through the change except for one moment when she woke, but decided it was no big deal and went back to sleep! Such a warrior she is, sometimes I cannot for the life of me comprehend how tough babies are! So, the preparation has begun and hopes are high. This machine usually is not used until babies are at the 15-16 pound weight, so there is a possibility that Chloe is still too small for it. That is just a fact, but she has overcome so many other obstacles of great magnitude, we all believe that her need to go home will be the driving force for success in these trials. So, GO CHLOE! Show em one more time! That is my mantra for the time being. I will keep everyone posted more at this juncture. Is is so very important and I have my internet connection at my house again! I promise to give updates much more frequently. So, now I have a parade to attend! Just have to walk a block and the celebration begins! Remember dear ones, to find some moments to celebrate in your days! With love and light, Nancy

Chloe 's Long Awaited Update 9/18/09

I sincerely apologise for not having updated much lately. I have been in the middle of what has seemed to be a very long move and have not had an internet connection at the new house. Thankfully, my cousin who is staying here for a few weeks, Gia, has the Wi-Fi card and I have been able to jump on for the bits and pieces you have gotten. I will be back up and running on Saturday morning if all goes as planned.
Chloe has been doing well, although these weeks turning into long months still at the hospital is taking its toll. I want to clarify for newer members of this group that I am Chloe's grandma. I started this page soon after she was born and it has turned into a good communication tool and also a great place for me to let my thoughts run amok! That being said, as her grandma, my life has resumed some normalcy. I am seeing some students, have spent more time with my aging mother and have had some time with my husband. This has been a godsend to me. Unlike Jennie and Lance, I am beginning to feel rested at times and have been able to actually make choices about what I do in a day or who I might see to engage me in something fun on a particular day. I say this in this manner in order for you to better understand what my daughter and son-in-law still go through on a daily basis. They now have Sierra in kindergarten in her home school 63 miles from The Children's Hospital where Chloe has lived since birth. Life moves forward for Sierra, but the added stress placed on her parents in order to stay in their home, in their neighborhood, yet still remain true to loving, cuddling and keeping fear away from Chloe so far away in another city is certainly becoming trying, at best. There is only so much that one can withstand, and I feel that my so loved family is so close to the edge. They also have Kadin, 3 1/2 years old, who spends so much of his young, sweet years being traisped back and forth from home, to hospital to Ronald McDonald House. I'm sure he has no clue in his 3 year old brain what to make of the life he now leads. My son-in-law works hard at his roofing job, makes the trip to Denver and back after seeing his baby daughter whom he loves so dearly almost every day of the week. My daughter hardly knows up from down, doing her very best to keep everyone fed and clothed and on schedule and on and on. And then...is my absolute most admired person in the universe for the love she shows to Chloe in every other moment she has! She basically knows exactly what to do throughout the day and rarely needs call on a nurse for assistance. She is so hands on and has learned more about nursing a baby in the NICU than I ever imagined anyone could! She has become tired though, discouraged and beaten down by high hopes being dashed at just about every turn. It is very important for me to express the level of encouragment that I hope will be showered onto not only Chloe, but on Jennie and Lance after you read this. They have become afraid to hope...and this is the saddest tragedy of all to me. We must all have HOPE! If we do not, if we we cannot trust that good is awaiting just around the corner, what is left? Each time Chloe has been close to making great strides, someting occurs. You all know that...a virus, an infecton, g-tube and stomach issues, high respirations or bladder infections. Something that sets her back! We have all been waiting ever so anxiously for Chloe to reach that 13 pound mark, as the home ventilator will be placed in her hospital room and HOPEFULLY several weeks after that she will be sent home with home health nursing and my granddaughter can experience some of what life is outside the confines of a 12 by 12 room! She has slowly been doing her vent trials, which offer only a small amount of pressure into the lungs from the vent, mostly relying on her to breathe for herself. These were going well and I was filled with HOPE! The docs were taking it a bit slower this time and Chloe was reacting well. Jennie kept telling me to not get my HOPES up, that it was still necessary to go one day at a time and deal with Chloe on a daily basis. It is the way she is able to function! I agreed, but also stated that I would continue to look ahead, because that is still in me to do so! Yesterday, Chloe failed a trial within a minute and a half, repirations went up, oxygen level dropped and she turned blue. Pressure trials have been discontinued...Jennie is so very sad! We know, that at 13 pounds, changes will be made. Time frame for getting her home now is between Thanksgiving and Christmas. That gets her to 7-8 straight months in the hospital, with no outside stimulation, gives her parents 2-3more months of uncertainty and stress and truly begins to make us all wonder just what is going on! Chloe has bgun to show some behaviors that babies show after long periods in the hospital. She is tired of being messed with, she is scared of yellow masks and gowns, Jennie says she feels that Chloe is becoming depressed. There are certain inate milestones that babies reach, Chloe is stuck pretty much a machine and is not getting the stimulation she needs to have or most likely expects in her developmental chart that was set eons ago! So, right now, at this time, we wait. We wait for Chloe to get bigger and pretty much have accepted that it will just be a ventilator she goes home on. That is fine, that is GREAT! At least she will go home!
My pleas are for prayers for Chloe's continued good health, her consistent weight gain, her not giving up on us...knowing that we will be there ever step of the way. My prayers for Jennie and Lance are to find the strength, the endurance, the HOPE, the FAITH to KNOW, by no uncretain terms, that they have the support of thousands of people, that if asked, many, many people will be there to uplift them and support them any way they know how! They are amazing people, amazing friends, giving, loving, sharing people, that you would be proud to personally know. They have been tested SO hard. To endure this in this first year of marriage has been quite the challenge. A great therapist, Geoff laughton(look him up on here) has offered to give some pro bono sessions to help them keep their feet on the ground! I know he can help them to find their center once again...time is of the essence but such a valuable commodity. They are having a hard time connecting to see him. So, my friends and famiy, I feel big prayers are needed. It is said that God will find a way when there is no way. It is said that God will not give us more than we can bear. Help us, dear ones, to continue belief in this tenent. It hurts me very much to watch my loved ones experience pain. Let's get Heaven once again FLOODED with prayers, for all things good and wonderful for this family. They are deserving, Chloe has fought a massive fight, and is winning! She needs to get home! her family needs her to be well enough to TAKE HOME! Thank you all for all you do! Thank you if you have ordered candles or made donations to the bank account. Just paying for gas to and from Denver to Ft. Collins is a real killer! Another friend has started another fundraiser here in CO. Feel free to do what you can in your state. Thank you for all the ideas you send my way. Thank you for GROWING this group! It won't be long before we are at 4,000! I just know it. Love and blessings of light and laughter to you all, Nancy