Saturday, August 1, 2009

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

1 comment:

  1. I am so happy that Chloe is doing so great. I have been following the group on Facebook and your blog since the beginning. I know that Jennie was over the moon to be well and get to hold Chloe, and Chloe to be held by Mom. You and your family are very blessed to have such a beautiful "Warrior Princess" I can not wait to see a picture of that smile you are so in love with. You guys are in my thoughts and prays every day. Thank you for sharing Chloe with us. She is very lucky to have a grandmother like you and when she is older and can read your blog I know that you will see many smiles and lots of love for all that you are doing for her and how much you love her.