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