Chloe Right Before Trach Trials Were Discontinued

Chloe is in Forward Progress Mode!

Aug. 5th, 2009 I haven't written much in a few days, as I have had some time to get back to my work life a bit on top of trying to keep up with the family. Working has done wonders for my own state of mind...routine is good medicine! Kids have always been the best medicine for me and I have some awesome students on my roster! Pre-K through 7th grade right now, it varies quite a lot at times. I'm just thrilled to be doing some of what I know I am good at that always brings me great joy! The Warrior Princess continues to work hard at spending time away from the ventilator. The number of times had not been increased as of this morning, but the duration of the two already in place is longer. One step at a time, one day at a time. After 14 weeks, now is not the time to hurry anything along! Jen tells me that she weighed 9 lbs. 3 oz. last night, so we had a bit of gain there. Her feeds have continued to gradually increase and we have hoped for more weight gain...maybe we will see it now. As long as she stops losing what little she gains she'll be okay. So, for the time being, continued prayers about trach trials progressing smoothly and progressively and also weight gain are most needed! We know what the prayers can do and can't give up now! I ask that you continue to invite friends, famiiles and churches that you are familiar with in order to keep heaven flooded with your most awesome prayers! Thanks for all you do! Lovingly, Nancy

A Few Updates in One!

August 1, 2009 I find it incredible that I just wrote the word August! Where in the world did all that time go? I guess when you are in crisis mode, time sort of loses its meaning. As I look back at all we have experienced, it's a wonder I'm able to still think, more or less write cohesive sentences! This week has been taken on a different look for me, just in time I think. Chloe is just a different little baby since the heart surgery, you just wouldn't believe the difference! Her color is great, her breathing is unbelievably more normal, she is getting more and more nourishment each day and she is successfully being weaned from the ventilator! She is not always happy when off the ventilator and left to breathe by herself, but nothing particularly wacky happens. She just breathes a little faster and has to work a little harder. She has to learn, once again, that she can do the breathing by herself! She is tired afterward and the nurse, awesome Aurora, explained that it is sort of like one of us training for a marathon. We have to work up to our full potential, and after a good workout, we're TIRED. Chloe is working those lungs and working toward going home. That's tiring business! We don't have any particular timeframe for that, but the more she can tolerate longer periods of time off the ventilator, the better! Once again, keep those prayers coming! It feels like we are literally in the 'home' stretch!!! Jennie is finally over her cold that kept her from visiting and holding little Chloe right after the heart surgery. What a difficult time that was for her but she knew that any added risk of illness at that point could mean serious complications. Chloe was delighted to finally see her mommy and smiles were in good supply that day! Talk about smiles! I told you that I had been getting smiles from our little Warrior Princess, but I was just getting grins. Yesterday I got two of the biggest SMILES ever! I was making locomotion noises, which she seems to really like, (I'm not sure exactly what she is hearing, it might just be my funny face) and she smiled with a smile that covered not only her mouth, but her entire face. Her eyes were shining and laughter, though not heard...was heard. My spirit connected with hers and we had an out loud laugh together! It so beautiful and I'm not sure who was more delighted! That is our new little Chloe. She is not working like mad to breathe, to stay alive! She is more relaxed, plays, and interacts with us so much more! She is truly behaving like a 3 1/2 month old baby, maybe not moving quite so much because of the trach and incision from the surgery, but on the whole, yes...acting little a precious little newborn gift from God. We are all so much in love with her, along with all of the staff that have come to know her so well! You never know who might stop in on any given day just to check on her progress! After this long, even in a big hospital, people get used to seeing you around. From the visitor desk, to the cafeteria, to receptionists, to people you meet in the elevator or walking down the halls...everyone asks about Chloe! She is such a fighter and I just cannot imagine what God must have in store for her. Watch out world! I just wanted to thank those of you who stood up for me when I made the decision to ask for donations. It wasn't easy for me to do so, but I truly felt it was necessary. Some people didn't like it and left the group, which saddened my heart. Everything I do is meant to help my family and it is not and never has been in my nature to scam people. I know that times are hard for a lot of people. My family is no exception. I have little work and my husband is scrambling to stay at even part time status with his company. If someone is able to give, great! If not, you know that I adore you for the constant praying and encouragement that you send this way. It is all giving, and it all comes straight from the heart in whatever form it takes! I also must thank the ones, you know who you are, who have taken extra steps in helping me to get some fundraising going in other ways! My time is so very limited and you offering your gifts to help me out fills me with added hope that we will survive this extremely life changing journey. I am full of gratitude today! My heart is bursting with love! God bless each and every one of you! Lovingly, Nancy 

July 30th, 2009 I thought that I would try to get a short note out. Yesterday I took the day off from the hospital and tried to catch up a bit at home. Seems like I never get the bills paid on time anymore! I guess I thought they would just go away since I'm never at home! No such luck! Last night Joe and I had a concert to attend that I bought tickets to months ago and I will be forever grateful that things calmed down enough for us attend! We really needed some fun and some time together and the night proved to be just what the doctor ordered! The venue is Red Rocks in Morrison, Colorado, one of the top 10 best places in the world to experience live music. Look it up if you don't know it because it is an unbelievably beautiful place! It's a natural amphitheatre overlooking Denver. So, the Warrior Princess continues to improve each day. Her trials for breathing without the ventilator have begun and so far, so good. They take her off of it an hour at a time, twice a day right now, and as she tolerates that the times and number of hours will increase. Hopefully, she will not be rushed. The last time this was attempted Chloe got sick, which was coincidental I'm sure, and her heart had not been repaired...but we are still just holding our collective breaths as this will determine when she is allowed to go home. Home. What a wonderful word, so many times just taken for granted. Chloe believes her home is a tiny room with various machines that never stop beating and alarms that never stop alarming! Being on the ventilator doen't even allow her to be walked over to peek out the window, although in her new room, when the chair is placed just right...I think she can view the sky. I have lots of conversations with her about what is waiting for her outside the confines of the Children's Hospital. She is certainly trying her best to get out there and see these things for herself! So, our prayers need to be for successful trach trials and nothing else getting in the way. We are seeing some light at the end of this very long, dark tunnel and are praising God for each day that Chloe continues her forward progress. I thank God each day for all of you. I pray that whatever your needs might be that God will see to them with the grace and love that has carried us all to this point. I know that His love is never ending and that miracles do happen. I have come to know some of you on a very personal level and know that you need strength, guidance and support as much as my family. I know that God is good and will continue to fill our needs, in His time. Regardless of the time, you have all come to be here through His love and you will ALL remain in my heart forever. We have a long way to go with Miss Chloe and I have a feeling we'll all be taking this journey together. Thank you again! Til later, Nancy  

July 28th, 2009 I'm sitting in Chloe's room as she sleeps. Big day today, as awesome progress is being made in the amount of support she is requiring. One of the machines that came down with her from the CICU that helped in regulating the pressure in the lungs, has been removed. Gone! Chloe's feeds have increased greatly since the heart repair and tonight...very big news...the trials for removing the ventilator will begin again! When Chloe blows the doors off expectations there...HOME is where she will go! So, prayers for success in vent trials are number one now! We have not been given any time frame, as any time they raise our hopes they tend to deflate them later. We will hurry up and be patient on this one! Having gone 3 1/2 months here, a couple of weeks more sounds like a piece of cake! I would like to make another plea for donations on Jennie and Lance's behalf. They have just been hit like a brick financially on this situation and it gets worse every day. Sierra is going to be starting school in three weeks and in order to go to full day Kindergarten, which will help immensely, $70.00 a month needs to be paid to the school system. When we arranged this, I was going to pay that monthly cost, but now I haven't worked in two months and Joe is barely scratching out 24 hours a week with his company! All the other expenses that have come from this situation are quickly tapping out any sources we have to help. This family has been absolutely upending by this life changing event. They have today, tomorrow and many, many years ahead to worry about how to provide for the family now. All this for a new marriage, a newly blended family and a life turned upside down. I plan on doing the fundraising and contacting news sources as soon as I can manage. We have gone from one disaster to the next, as you know, and my time has been spent otherwise. With the upturn and forward progress in Chloe's condition, I hope to have some valuable time back to start those things! Thank you SO much to whoever has made donations! I haven't been able to figure out yet who you are at the CHIP IN site, I hope I can soon so that I can thank you personally! Anything anyone can do will be of help. If even half of everyone in this group donated $5.00, they would have $5,000! They are going to need so much help over time! Chloe's condition will require so much expense that we have no idea how to pay for! Please reach just a little into your wallets and pockets as you have with your time and prayers! I know that everyone cannot help, but if you can, know that every penny will be used wisely. You just need to go to the top of this page and on the left hand side there is a website link. You can click on it and donate through Pay Pal, or can send a check to the following address: Nancy Owen 1601 Longbow Ct. Lafayette,CO 80026 

Thank you all for understanding this plea. I would like to be able to take some stressors away from them that can only be done with money. Blessings to all, Nancy  

July 27th, 2009 Just a couple of things tonight, I am tired and a bit frustrated. It took me quite a while to get the pictures here, then they didn't show up in the order I wanted them to be seen in. So, maybe you can figure out the order by reading the short descriptions. Chloe has come so increbidly far in a week! Imagine...last Monday night we were preparing for the surgery the next morning. WOW! Today I held her, played with her, had her smile at me and only a few times did she seem irritated or a little uncomfortable. She has not been on medication for pain, although I did suggest just some Tylenol for a while. It looks uncomfortable when she coughs and I'm sure the incision on her little chest is very tender. What a trooper she continues to be and she just does not stop being the bravest human I have ever encountered! I did want to update Moses. After leaving Chloe one night in the CICU I had asked for prayers for a two month old baby named Moses. He has had a terrible time since birth, and his mom had chatted and cried with me that evening, believing that it might be Mose's last night with them. I did not see her today, but talked with his father yesterday. He reported that Moses is stable and hanging in there. Thank you to anyone who has put the little guy in your prayers. That was a tough night, as I left with my spirits soaring so high about Chloe and then felt so bad for that family! So much of that in that hospital, believe me! So, a short update tonight, but it has been another day! More tomorrow! Love and blessings, Nancy

Chloe's Open-Heart Surgery

July 26th, 2009 Heart. The heart. A huge heart, a joyful heart, a soft heart, at the heart of the matter, a kind heart, all heart, follow your heart, heartache, a beating heart, a broken heart, a heart on the mend. Chloe's heart, my heart, your heart. And then my heart with pleasure fills, and dances with the daffodils. William Wordsworth Chloe's open-heart surgery has consumed me for the past seven days and I have been unable to keep this group posted as much as you probably had hoped. The best part of that is you not receiving any frenzied pleas for prayer, as Chloe has had a tremendously successful week and is recovering faster than anyone had believed possible. I believe that all of the prayers preceding the surgery, the prayers heard echoing throughout the halls of heaven during the surgery and the unending love that has illuminated her short life by all who know her...those things made Chloe and God decide that she would carry on with a healthy and whole heart. So, carry on she does! We were told that Chloe would spend up to 1 and 1/2 weeks in the Cardiac Intensive Care Unit (CICU). I guess the docs just didn't take into account that Chloe rarely does what is expected, as four days later they wheeled her back into the NICU! Of course, the story began on Tuesday morning when we all, with great trepidation, kissed Chloe, wished her well and watched her leave the room with her mommy and daddy trailing a tiny little bed, which carried a tiny little baby and the enormous hopes and prayers of thousands of people. Tears were quietly and privately shed and we moved downstairs to wait for promised alerts and updates. Thanks go out to Ester, who kept us apprised throughout, who scouted the halls of the hospital for Lance and Jennie if they happened to wander from the waiting room and needed to be found. I think a permanent trail from the operating room to varying places in the hospital has been worn down from parents awaiting news over time. Ester never failed in her parental quest, she would appear like magic and had such a positive, yet careful and serious approach in delivering news. Six and a half hours later, Jennie and Lance were able to join Chloe in the unit and returned relieved and joyous about how great they thought she looked. Big sighs all around and after that and the we were all allowed to visit and check in on her ourselves two or three at a time. It was a bit shocking, as she was so still and the tubes were many but we had been very well prepared and nothing was too unexpected. I was just thankful, so thankful. There she was, all the monitors saying the right thing, the truly RIGHT numbers, numbers we had never seen before. We had been conditioned since birth to expect heart rate numbers from from 160-200. Now, it was averaging 120-130, minutes after surgery. The heart was working as it should be working! Of the two holes, the smallest was smaller than expected and the largest was much larger that expected, now they are fixed and Chloe is getting better by the day! Each day, Chloe surpassed expectation and each day the tubes, drains and wires disappeared one by one. Thursday morning, Jennie woke me up and sadly stated that she thought she might be sick. Jen has pretty serious allergies in the summer and the sore throat could have been them or something more serious...so Chloe's poor mommy chose not to take any chances and did not see Chloe for three days! Talk about a tough decision for someone to make! So, I spent the time with Chloe in the CICU until Lance could get there after work. To tell you the truth, some of the details of the week get pretty blurry. Little sleep was had by anyone. Grandpa and Uncle Brandon had committed their time to babysitting Sierra and Kadin, Grandpa Joe shouldered most of that and more...as our 1 1/2 year old granddaughter Johnnie, joined him in some of the fun with the other two. They all did have a lot of fun...but Grandpas get tired! LOL! Grandmas too! Guess what? We're tired! Brandon's girlfriend Crystal helped out too. Thanks to everyone pulling together, we pulled this off and no one is too much worse off for the wear! When you understand what the Princess Warrior has endured, most other things pale in comparison. I did finally get home Friday night, quite exhausted. I have taken the weekend to recharge a bit, to spend some much needed time with my husband, cat and Jen's dog! It has been such a cool weekend, I took two lovely, lovely walks in the middle of the day and actually have cooked three dinners in a row! All is going so well, it really does make one conclude that worrying certainly DOES NOT accomplish a thing...but prayer certainly DOES! I cannot thank all of you enough for the support and encouragement. Really, this little group has become a pretty big group! Inviting your friends and helping it to grow has helped in more ways than one! Chloe has benefitted immensely, as have I and my family. Knowing that you are never alone, not only because of God, but because of friends who care so much, well, I can't express what that means! I feel that each and every one of you in this group is an angel. Anyone who has been touched by Chloe in spite of all the differences, you are angels! God has sent a very special little spirit to us all, just look how we have come together. Many, many different religious, political and cultural beliefs and philosophies, yes, but we all are one in our hope that Chloe will grow, be healthy and most importantly feel loved and accepted by all who meet her. Thank You! I will be posting some pictures, hopefully not too graphic. I ran it by a few people and they expressed an interest in the surgery, as most of us have not done this before! More tomorrow, this is way too long and I have so much more! Praise God for all of you and for Chloe's continued recovery! Lovingly, Nancy

Chloe and Open-Heart Surgery

July 22nd, 2009 I don't have a great internet connection, so will make this brief tonight. Chloe is doing fantastic!!! She has once again amazed medical staff with her ability to get through some very tough stuff with very little to-do. Today the doctor stated that,"It has all been forward progress." That was saying so much, as so many things could have gone wrong...and didn't! Later in the day, as a few of the tubes were removed, some of the heart medications decreased, and after Miss Chloe had been moved into her new crib, a nurse said ,"Chloe's heart has been fixed. When she leaves this floor she will no longer be called a critically ill heart patient." Hallelujah!!!!!! The pulmonary part will need to be addressed and if all these prayers work as well with pulmonary issues as they have her heart, she'll be off the ventilator in no time! Thank you ALL for hanging in here in this process with us! I think we were all a bit more nervous about the heart surgery than we spoke, and from what I heard today, I think the docs were also. We were initially told that depending on how things went, the Warrior Princess would most likely spend a week or more in the CICU. Today they said that if things continue at this brisk and wonderful pace, she could move back to the NICU as early as Friday. Unbelievable! We are so thrilled about this, because then she will have the nurses she knows and some familiarity back. Now, she is of course very drugged, but still aware I'm sure, that it is an entirely different place! She does open her eyes when being suctioned and tries to focus in on what is happening, kicks her legs a little in protest and lets us know she is not happy with the intrusion into her sleep. We are all just so full of gratitude that she has done this so beautifully so far. There have been a couple of little bumps, but on the whole, we are moving on! Chloe rocks! Chloe has big things planned, mark my words! It's going to be a very, very interesting ride! I'm very tired and so glad I did not lose my connection this far into this. Love and blessings to all, Nancy

July 21st, 2009 Chloe is settled into her room in the Cardiac Neonatal Intensive Unit. She did very well and her nurse said,''better than she would have expected". We all know that God has sent plenty of angels to watch over her, don't we? Such a warrior, this baby! The next 24 hours are very critical, so please continue to keep her close in prayer. We are so happy that things are moving along in this way! 

July 21st, 2009 12:10 p.m Chloe is doing great! Repairs have been made, they have warmed her body and taken her off of the heart/lung machine. They are closing her up now and say it went well! Thank God, truly, God is good. Thank you all of my prayer buddies and friends. Keep it up! We've got some territory to still cover! More later, Nancy

Donating to Chloe and Her Family

Try this link, if it does not work, please let me know! Thanks so much, Nancy

http://prayingfornewbornbabychloe.chipin.com/chloe-and-family

Preparing for Heart Surgery

July 19th, 2009 Well, well. It is Sunday night and I have had a day of rest! Unbelievable! As most of you probably gathered, I really needed one! Last week was quite the week, other than everything I posted last time, I brought Kadin and Sierra home with me and my 85 year mother joined us here Monday through Friday. It did not allow me much time at Chloe's bedside, but did allow her parents some time alone with her there and got the siblings out of the hospital scene for a bit. We all really had a pretty good time here, the whole feeling of extended family was very positive and I wish we could do it more often. Yesterday, in the morning, Lance, Jennie and I met a very, very special family. Robyn, Anthony and Faith live in a suburb of Denver and have been in contact with us since early on in the Chloe story. Faith is 2 1/2 years old and has Goldenhar Syndrome, which is one diagnosis we have come upon for Chloe. The other is Treacher Collins Syndrome, which actually has been ruled out with genetic testing. Faith's mother, Robyn, has also blogged Faith's journey and we have learned so much from her! She has offered so much support that means so much because she has 2 1/2 years of this behind her! Faith began some of the work to build her jaw when she was just four moths old and her parents have offered much advice about doctors and medical centers that they have come to trust and count and on to help make their daughter whole. Meeting little Faith was like shaking hands with the future and opening a great big box of HOPE! "Faith, hope and love, and the greatest of these is love". Robyn brought us a whole lot of all three and we are once again reminded that God provides in all ways. We all needed some positive energy flowing through our bodies and Robyn and her family delivered for sure. Anthony is Sierra's age and a very, very nice big brother to Faith. They all got along so well, played while we talked and we plan to get them together again as soon as we can. Thank you, Robyn. You are another God sent angel. Miss Chloe, Chloe, Chloe. Chloe has been having pretty decent days, readying herself, I believe for her surgery on Tuesday. No sign of infection has been seen for some days now and Tuesday will be here soon. She has had a few abnormal breathing episodes which were fairly scary for Jennie, Grandpa and Lance but handled by the staff well. I guess Chloe's stats have not been reading exactly right during these episodes and she has turned blue because of the lack of oxygen for a moment or two while adjustments were made. Thank God Jennie is alert and intuitive, she knew something was wrong when the machines said things were fine. This just points once agin to the necessity of the heart surgery. I'm sure that all of you will keep Chloe in your thoughts and prayers that day. She is scheduled for the surgery to begin at 7:30. Jennie, Lance and Joe were given a tour of the cardiology operating room and NICU on Friday. Joe reports it being extremely intense for him, Lance and Jennie were full of questions, as they have been along. Never were there two parents that I have ever encountered who have embraced the unknown and sucked it in like a sponge in water the way they have! They are both going in to this as prepared as they can be. From what I understand, the surgery will take 6-7 hours, we have been told that we should not at all be surprised if it goes much longer, they often do! Chloe will be having two holes that are in her heart repaired and it is an open-heart surgery. Doctors say that the first 48 hours are the critical time and that they will not necessarily relax until Friday. That sounds like a lot of hours to me, but we all know that God will send legions of angels to protect Chloe, will send special guidance to her medical team and will hold this family together through the stressful times. I am thanking God every day that this group has continued to grow, I know that many of you have spoken to friends, congregations, whole TOWNS in spreading the word of Chloe and the family's needs. Prayers will NOT be in short demand on surgery day or the recovery days thereafter. THANK YOU! I have been attempting, since about the third week of Chloe's life, to establish a trust fund or special account that people so inclined could send monetary donations to. Many people have asked about it and some have sent donations directly to me. Setting up a trust fund has proven to be complicated and costly. I attempted to set up a Paypal donation button but when that was all said and done, I needed a website, which I don't have. This last week, as it became more apparent how bleak the financial picture is looking for Jennie's family, I knew it was time for me to get this job done. The news stations won't cover a story until there is a place for donations to be put, it has just been a vicious circle. So, if you would like to help the family with even the smallest of donations, I think I have it set how to do so. I have one step to finish on a site called Chip In, I will be posting the link here. Hopefully, it works! As Chloe's story has become more and more complicated and we are aware of the years it will take to arrive at a place where Chloe can lead a normal life, the more I know it is going to take a village to do it. I know that little donations tend to turn in to bigger ones when placed together. I pray no one feels offended by this request and please, know that we need your prayers as much or more than anything else! God does provide in all ways and it will all come together in its time through all channels. So, another long post, but one with some energy behind it and it seemed a lot of news. Tomorrow, I will see Chloe, and may stay in Denver in order to be there early Tuesday morning and not have to deal with traffic. Most of my time will just be spent there and the kids will not be around the hospital. There is a room that Jennie and Lance will be allowed to stay in the first two nights next to the NICU. I will have my computer with me and will keep you updated as much as possible. Until then, God bless you all. Going into this with all of you makes me feel a whole lot better! Love to all, Nancy P.S. I have just been shot down a bit trying to get Chip In directly on this page, because I am a computer goon, I guess, and can't understand something about javascript and this computer. I will ask someone tomorrow to help me. I have posted the link up above under Chloe's picture, under website. Hopefully, it works!