Sunday, September 13, 2009

Sept. 13th, 2009 Hi everyone. I wanted to just write a quick note and let you know that Chloe is doing well. I did not want anyone to think otherwise, I have been in the middle of a move and just have not had time to write my updates. When I get to the other house, I don't have the internet yet, and won't until Sat. I will try hard to get you a detailed update within the next couple of days. Chloe has been doing well though and at this point, it's the old adage,"No news is good news!". Breathing has been consistent, weight is climbing, she is mostly over her latest virus. She has had a TERRIBLE diaper rash and a special steroid creme was started today. She's had it for over a week with no signs of it going away, even with natural diapers and oatmeal soaks. I guess it would be good to pray for some healing on little Chloe's behind! Other than that, general prayers for continued progress toward home. Much more later! With love, Nancy Sept. 8, 2009 Hi everyone! It is late and it has been a long day, but there are a few things to catch you up on. First, Chloe is really doing pretty well. The g-tube that was placed last seems to be fitting nicely and nothing is leaking, so she has been getting all of her food and yummy nutrients. This has lead to a very exciting weight of 12 pounds, 2 oz. as of today! Do you realize what this means? At 13 pounds Chloe will begin being tested on the home ventilator. At that point, with success, she will be moved out of the NICU to a recovery floor and home will just be a few weeks away!! I'm telling you, this feels real and our hearts are just soaring! The reason this feels more realistic to me this time is that Chloe has seemed to be fighting off the illnesses that plague her with much more ease the past few weeks. She blew off that last virus fairly quickly and just this last week it was suspected that she had developed another bladder infection. Some blood had been in the urine , white count was up, antibiotics were started with an i.v. in order to play it safe while waiting for the cultures to grow something or not. Chloe put up with that i.v. for about 48 hours and then it blew and had to be removed. My thoughts, as I have shared before, were that Chloe felt it was unnecessary and rid her body of it. The next day, the culture still had not grown bacteria and Chloe seems to be doing fine! I truly believe that Chloe will be going home for the first time with an ever anticipating family, SOON! We know that God has a timetable, just not the specifics. Keep praying! I know I don't have to ask, but these developments have me very excited and I don't want one single prayer to be left unsaid. THANK YOU! This group is about 52 people shy of 3,000! Let's make it our goal to invite ALL of our friends and surpass that awesome number! Really quick. Tomorrow night, a lovely young woman named Sonia, who previously joined this group and lives fairly close to me, is having the first official fundraiser for Chloe tomorrow evening. At least it kicks off then! She does Partylite, some of you are familiar. If you buy a candle or accessory, 50% of the proceeds will go to Chloe. You will be helping Chloe and also will have a nice gift for yourself or a gift for someone else. This has potential to raise some money, so please consider being generous. The holidays are coming and you can kill two birds with one stone! This is the website to visit. Please visit, or even post on your own page. I am so thankful to Sonia for this. So, happy days! I feel like we are on a roll here and only good things can come! Blessings and love to ALL! Nancy Sept. 4, 2009 Good morning to all. The sun is shining, the birds are chirping and God has given us all a new day! I have kept you waiting too long on Chloe news and I sincerely apologize. Where do I start? Remember over three weeks ago when Chloe began having trouble with the NG-tube, the little button in her tummy that feeds her? A new little part was nowhere to be found in the hospital and one had to be ordered. It was thought that it would arrive in a few days time, but as far as I know, it hasn't yet! Chloe's food started to just leak out of her tummy as it was dispensed, several times jennie had her shirt soaked while holding our little one and she eventually could no longer be fed that way. They sort of patched around it and since Chloe had developed some sort of virus at the same time, began an i.v once again and fed her that way. That was a strange sickness, and at times, for no apparent reason once again, Chloe's heart rate and respirations would rise and after a while we began to suspect the heart again. The weirdest part about her not being fed through her tummy was how happy she seemed. My personal opinion was that her stomach hurt, she just couldn't tell us that! She did have quite a few days where sleeping was of the utmost importance to her, but after that, she just seemed so happy! She has lots of toys in her crib for stimulation and seemed to want to play a lot and has been pretty alert for some time now! For a few days now she has had a new tube inserted, not the one we are waiting on, but one that does seem to fit well enough. The down side is that they are using the nasal tube again and bypassing her stomach, giving it a rest I assume. So, it has been an up and down experience again. One night our little warrior scared us as her blood pressure dropped quite a bit, but that was the only time, and she seems to be on the mend again. A case conference was held last week and a plan discussed for getting Chloe home. At this point, the end decision is that when Chloe weighs 13 pounds, (she is a little over 10 lbs. now!) they will bring in a home ventilator. We will all have to become very familiar with the workings of it and hopefully Chloe will decide that home is the place to be and will fully cooperate! As that comes to be, Chloe will be moved out of the NICU and taken to a different part of the hospital in order for her to ready herself and the family for a trip home for the first time! This is still probably up to two months away, but a plan is in place, and that makes us all very hopeful! We are all beginning to try to use more sign language with her, which is interesting to learn, but communication is so critical for infants! She is becoming much more comfortable with the hearing aid headbands and can wear them more of the time. She had begun to look away with one of her eyes, which was concerning, so has been wearing an eye patch an hour a day on the good eye in order to force use of the other one. This seems to have made quite a difference and she is beginning to use both as she should. She also gets physical and occupational therapy each day in order to keep her little body flexible, and just the other day rolled from her side to her back a few times in a row! She actually had done that the night before her heart surgery, but we hadn't seen it again and were VERY pleased. The vent trials continue, but ever so slowly. No one wants to push the Warrior Princess too hard or too fast this go round! The hills and valleys have been so numerous on this 20 week journey! Our family has struggled and grown and found strength when we thought there was none left to be found. My daughter and son-in-law are my newest heroes! They are fighting this fight with the power of prayer and a hugely gigantic! love for one another and family. My daughter has grown heart bursts with pride! Lance and his unfailing positive attitude should be a testament to all about the power of positive thought! My belief that mankind is still good and kind is shown to me everyday by all of you and the wonderful ways that you offer us support. Thank you! Keep praying. There is much to be done. Love and blessings to all! Nancy P.S it has come to my attention through a few people that Chip In, using Paypal, is not the best way to have set up the donations because Paypal is charging a fee. Jeezzzz! It took so long for me to get that far! So, I have set up an account for Chloe and her family at Wells Fargo Bank. They will tend to all the details and there will be no fees. I want to express how much this situation has effected jennie and Lance financially, as you can well imagine! Chloe's journey, although it seems to be such a long time already, has just begun! Expenses are too numerous to count and Chloe will require transport with her mom and dad all over the country to take care of her needs later on. Lance just cannot carry this financial burden alone, as much as he tries. Jennie, obviously, cannot go back to work now. I make my plea once again for you to donate even the smallest amount to this ever so worthy cause. I have had $5.00 donations, and shed tears over them, because that was given from the heart! If everyone sent a check for that amount alone we would have a nice start! If you cannot give, I understand. The economy sure ain't what it used to be, is it? Your prayers and encouragement have helped carry them this far! The information follows if you would like to give a few dollars. God bless! Nancy Checks can be made to: Wells Fargo Bank Caring for Chloe 1137 E. South Boulder Rd. Louisville, CO 80027 Checks can be mailed to that account or if you have a Wells Fargo account you can make a direct transfer, Note Acct. # 7987368763 Sept. 3. 2009 Well, well! You probably thought I disappeared off the face of the earth! Sorry, everyone! I plan on doing an in depth report to you in the morning. Chloe is doing well, don't worry! There have been multiple issues burning hot in my family which, to be honest, tested my faith. With my prayer team set up here, I know now that you would never allow me to lose my way. There is just too much power in this group, the prayers that God hears are deafening, I'm sure. Thank you all for carrying on when I could not. The group numbers are blowing me away in the days I have been absent. The growth touches my heart and brings tears to my eyes. I cannot at this time, express my gratitude correctly. Just know that each and every one of you holds a very special place in my heart! I now know that you can carry on the torch when I cannot. What more can I say! I have much news of Chloe, just no energy at this time to write it! Tomorrow morning...I promise! Love and blessings and tons and tons of good things to you all! Nancy Aug. 29, 2009 Pray, pray, pray. My whole family needs you. Strength to face each new day and whatever surfaces it in. We are being hit on many sides, help us with guidance and trust also. Blessings, Nancy Aug. 28, 2009 A close family friend is in the end stages of cancer. Please add Diane Haile to your prayers right alongside Chloe. I would very much appreciate it. The doctor said that it is just time to make her comfortable, so let's all pray for comfort and not pain! Thanks so much! Lovingly, Nancy Aug. 27, 2009 I thought I'd get a quick update out, as the numerous prayers seem to be accomplishing wonderful things for Chloe! Our little darling had a really good night, and the virus seems to be going away. And get this! Docs have started the ventilator trials again! This time around, they have a new plan. Instead of completely taking her off of the vent, they will leave it on, but on with pressure. So, Chloe will breathe on her own, but just have a little pressure pumped in to help. They did the first hour this morning! We are all very excited about this! Especially since a case manager, just this morning, told Jennie that it looked like Chloe would just be going home on the ventilator! This is just not acceptable to us at this point! So, with your help, with your prayers, with Chloe's GRAND sized will, we know we can get her off that machine and that home does NOT mean waiting for 16 pounds and a ventilator! Big, big prayers needed for this latest trial! Thanks for coming along in this journey, which started 18 1/2 weeks ago and has had more ups and downs than any of us might have imagined! Together, with God and multitudes of angels, Chloe still fights and makes it through every obstacle placed in her path! Thanks be to God for all of you and every blessing bestowed upon us all! Lovingly, Nancy Aug. 24, 2009 10:30 p.m So far, so good! God hears every one of your prayers. Cultures so far have not grown bacteria and Chloe has not needed the transfusion! It is 10:30 p.m here and Chloe has been sound asleep and resting comfortably all night! Heart rate is better too! Go friends, and go GOD! Thanks be to our Maker and our angels! Thank you all for caring so much! We just reached 2,500 in our group! Love to all! Aug. 24th, 2009 I do not have a lot of time right now, but I needed to get a call for prayers out to all of you. Miss Chloe started have some difficulty early Saturday. As she finished giving Chloe her bath, the nurse noticed that the Broviak, (the arterial i.v. that was placed semi-permanently before her first surgery in order to not always be poking Chloe to place i.v's if necessary) had broken. The mechanism had to be removed and since Chloe is not expected to be having any surgeries in the near future, it was decided not to replace it. That is a surgical procedure in itself. The staff had some difficulty getting the bleeding stopped and part of accomplishing that was leaving Chloe on the same side for the day. I have not seen the sight, but Jennie says that there was quite a bit of bruising and redness around the site. She was surprised that they didn't put a stitch or two in to close it. As the weekend progressed, Chloe's respirations climbed higher and yesterday an x-ray revealed that part of the lung on the opposite side had collapsed some, probably because Chloe had been laying in the same position in order to get the bleeding stopped. Last night in the wee hours Chloe had her temperature spike to 104 degrees, so she has been placed on i.v antibiotics, although the exact place of infection has not been specifically located. Jennie and Lance commented yesterday about how pale she looked and wondered if she might need blood. This morning, although I can't confirm it yet, there was the discussion of a blood transfusion. Jen told me that with the antibiotics started, she seemed to be feeling a bit better. The last I talked with her was about 11:30 this morning. There once again is no known reason why those respiration are so high. Everything went so well right after the heart surgery! Anyway, lots of prayers are needed to get Chloe back on track and also to aid the doctors in determining the cause of the breathing difficulty. Thank you all for being here for me to make the plea whenever necessary! Love and blessings, Nancy Aug. 18th, 2009 I just wanted to write a quick update tonight. Chloe's days have been a bit up and down and so no new trach trials have been scheduled as of yet. The higher heart rate and respirations have had docs scratching their heads once again, so Chloe has been put on antibiotics again just in case there is an infection lurking that isn't known. She has also had some trouble with the g-tube that feeds her. It has been leaking and we are waiting for a new one to be placed. Twice Jennie has been holding her and found her shirt wet, where formula had come out of the tube site. It is disturbing and hopefully will be taken care of soon. When I asked the nurse last night when the Warrior Princess might try again with the trach trials, I was told probably not until this course of antibiotics is complete. Poor little baby! Do you realize that it has been 17 weeks of this for her? I was thrilled when she was weighed last night, even though the gain isn't much, it seems like it is really baby weight, not fluid. So many of you have commented on how much she has filled out, and that is so true. Even her little legs felt a little more 'fatty' last night. So, she was at 9 lbs. 1 oz. which is a long way from 15, but it is on the upward swing! For those new to the group, if Chloe goes home on the ventilator, she must weigh 15 pounds. That probably means some months, which is why we are praying fervently for her to get off of the ventilator! Sierra starts school on Thursday. The first grandchild to head to Kindergarten! She is going to go to all day Kindergarten and Jennie has given the heads up that she may not always be able to stay the whole day, depending on how things are going at the hospital. It is going to get wild, but God will find a way for this lovely family of mine to make it work! jennie has two friends who have kids at the same school who will help her however they can. We had hoped so much that Chloe would be home by this time of the year, but we all know she can not and will not be pushed too hard! Miss Chloe and God are keeping the plan a mystery! We'll be there no matter what! Thanks to everyone for continuing to invite friends, for your absolute enthusiasm and encouragement in helping us through these difficult days and your remarkable belief that all will be well! You just have no idea what this means to all of us! God bless you and keep you! Lovingly, Nancy

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