Wednesday, September 30, 2009

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

Tuesday, September 29, 2009

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

Saturday, September 26, 2009

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 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

Saturday, September 19, 2009

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 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

Sunday, September 13, 2009

Chloe Video

Be sure to scroll down a bit and watch Chloe's video if you haven't seen it!

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