Chloe and Her Family

Chloe's Heart Surgery Scheduled and Some Crazy Feelings Too

I have been quite involved the past two days with my mom and Sierra and Kadin (Chloe's brother and sisiter) so have not had a lot of energy left at the end of the day for thinking or writing. So much has been happening in our family, the intricacies and fragility of the human being involved in something so huge and out of one's control...getting a grasp on these concepts is mind boggling and leaves me feeling inept and unwise. I hope to be strong for my daughter, my son-in-law my other grandchildren. I hope to be able to give positive energy to my husband, son, mother, friends...all of the things that lend themselves to ALL of us being there heart and soul for little Chloe. There have been moments when I just don't know what to say to whom, what to think in my own overloaded brain, yet I know that I can draw on the strength of people who care and have the words and are there to just remind me of God's promises. I go back a lot to something I have heard for years and years, that God does not give us more than we can handle. It is not being negative that makes me question this, it is the day to day that we are living, the tragic moments in my family's past that do not lend us to the belief that we are deserving of the opportunity to take this on "because we have been preparing for it". We have had many, many troubles, we have believed, kept the faith, carried on...yes, survived it all. To be given Chloe does have its rewards, to imagine that we were all 'chosen' because of all the preparation time we were given and survived, but the day to day fragility of emotions, balancing, sharing the load, giving family members space, trying to give advice without sounding controlling or just like I know anything at all...well, it is highly stressful and tiring. The intricate details take away from giving Chloe the very best, but we cannot do that until we ourselves are at our best! I worry what is happening to my family as we work through this and ask for prayers not only for Chloe's health and promising future but also for my family's stand to become strong and united These are highly charged issues and need many, may prayers. Until some of this is addressed, I feel Chloe is missing something from us. She needs each and every one of us there for her whole, not shattered, stressed or anxious. 

Chloe is absolutely the sweetest little baby, the strongest, the most prepared little warrior and fighter any one who meets her has ever seen.. We are all so very much in love with her and as we face this possibly life saving surgery many scenarios play out, at least in my head. We all want her well, breathing without a ventilator and on the way to going to her home for the first time. We look to the future surgeries and travails, the successes that will offer a normal life to her. The head fills up really fast, all the while believing that God can do miraculous things. We pray that He chooses to do them with Chloe and this family. I feel really bad inside when I go to check on Jessie Boone and see the updates that her mom writes. Positive words most every time, ALWAYS able to praise, praise, praise. I second guess my self and what sharing my feelings as they rise up really means. When I write of frustrations, fears, the necessity for help...is that wrong? Is that sending negative vibes that are better not shared or is that the truth...my truth...not my kids, grandkids, friends...mine. I wore a mask for many years, that didn't do a lot to promote great mental health for me. It took a long time for me to learn to share feelings, and that is truly what you get here. I'd like your input on whether you think is the wrong way to report. I don't want to fake it when I am confused, disappointed, hurt, lost, overwhelmed, but if I am hurting Chloe or family by doing so, I will do what is necessary. I think I needed to do this tonight because of some difficult things that have happened this week, and I want to purge myself of these feelings as we go into the next week in order to be there in EVERY way next week. Chloe's heart surgery is scheduled for next Tuesday, first thing in the morning. She is feeling better each day from the last infections and we are so enjoying this baby who feels pretty good. To know that in just a few days this baby will once again be operated on, open heart surgery at that, disturbs me. It has been so satisfying to see her act happy, to play with her a bit. The surgery will help her to grow, to thrive, we all want that, it is just hard to let go for a minute and know that next week we are back to tubes and and wires and tests and who knows what else. This is all she has known! As soon as she feels ok, something else comes along! babies shouldn't have to do this!

Please help me to clear my head friends! It is obviously VERY FULL! I love this baby, her siblings and mommy and daddy SO VERY MUCH! I DO believe that God performs miracles. I also believe that we ned one! Thanks for continued prayer and support. Love to all, Nancy

Chloe Looks Good

July 10, 2009

I thought that I would give a short update, as you have all been so kind and supportive and have asked some questions. It's not after midnight, so I'm not in my best writing form! 

Chloe is much more stable today and seems to be responding to the antibiotics for the UTI and whatever caused her to have the bloody stools. I just am not sure if it was decided that the intestinal irritation was bacterial in nature or not. I know that many x-rays have been taken, watching for a perforation that might have been the cause and that does not seem to be the culprit. At any rate, she has not had any bloody diapers today and this is great progress. I would conclude from that news that the antibiotics are working.

The rest of the story is that as soon as possible, when Chloe is cleared of infection, she will have the heart surgery to close the two little holes. It is believed at this point that it just HAS to be the reason that the breathing is so irregular. Chloe is not growing and thriving as she should be and using so much of her energy to just breathe cannot help. As far as I know, it will be an open heart surgery.....this makes me very sad, as I experienced that with my mom when she was 79. They tell me babies recover much faster that the elderly. Let's hope this is true. Chloe is 'so fragile and so unique' as one doctor put it yesterday, it is scary to think of this surgery. From what I understand, in order to thrive, something must be done and this is the next step. There is no date, but you can be assured that I will pass it along as soon as I know. 

Emotions rise and fall here as the news fluctuates so much from day to day. Today is a better day. God willing, there will be many more ahead. Your prayers will certainly help in that. You are all so wonderful! Thank you for spreading the word and inviting your friends. We are almost to 2,000 people! That 10,000 goal may be within reach! Love and blessings to all, Nancy

Bumpy Ride

July 8, 2009

Chloe hasn't had a great two days. She had shown signs of distress and a urinary tract infection was discovered this afternoon. She has had some blood in her stool and that led to some concerns about possible intestinal perforation or ulcer. Tonight another xray was done and it is believed that she also has an infection in the intestine someplace, but no perforations were discovered so she is now once again getting a triple concoction of antibiotics, in the hopes that this will deal with any infections. This came on the heels of the news that docs have decided that the breathing problem that was ruled out last week that would have required heart surgery, will be necessary after all. The pulmonology docs have not been able to get a grip on what to do and now it is back to the heart. The roller coaster rolls on. This has become almost unbearable as nothing ever seems to get resolved before Chloe gets hit with the next thing. The heart surgery would have been early next week, now...not until there is NO sign of infection, that is a risk not worth taking. 

I am truly beside myself for many reasons tonight, on so many levels. One is maybe that it is 1:30 in the morning but that would be the least. It is very frustrating here, mainly because the docs cannot figure out little Chloe. Her issues are so severe and unique and no one has a tried and true plan or even an agreement made about what is wrong with her. I realize that I am just a regular plain Jane, and really know no one of consequence who can help me spread the word about Chloe. Her parents would like to get her story out worldwide in order to maybe find a doctor who for some remarkable reason would have an inside track on how to proceed. We like the doctors at Children's, we just want what is best and we can't hardly think straight enough anymore to know that good decisions are being made on our part. This is my plea to all members of this group. If you know someone, or know someone that knows someone, who you feel is a connection to a news source, local, national, globally. PLEASE help us! We could use newspaper, magazine, tv or internet coverage. We just need help. I am out of time and just about energy and feel like I am spinning my wheels. I am feeling useless and used up and need all of you to lift my spirits and provide the energy that has given me hope since the beginning of this blog. News stations around here do not find this story interesting enough and I am very, very discouraged. I try to be real here. This is my real tonight. I am scared, discouraged, a little depressed and that is just speaking for myself. My daughter did not do so great throughout this day either. It is hard, hard, hard. 

Tonight I pray for the goodness of others to see me through, for the Holy Spirit to speak my prayers for me, as I am just wordless when it comes to the prayers. I remain thankful for all that I can, there are good things, I see them. Some of my own deficits are just becoming more apparent. Please contact me if you can direct me to someone who can help. Love to you all, thanks for hanging in there with us. Love and blessings, Nancy

Chloe on July 5th

July 5, 2009 It is Sunday night and taking a few days away and spending time with my family was just I needed! I hope that each and every one of you had an equally satisfying weekend. I did not see Chloe until this afternoon, when I did it was just she and I and a really quiet Sunday afternoon. It hasn't happened like that for me in a while. Chloe was wide awake when I entered the room, staring intently at the two black and white stuffed animals tied above and to the side of her crib. The black and white contrast seems to grab her attention and those are her favorite stuffed animals. When I peeked over at her, she smiled directly at me and my heart just melted. Her color was good and her mood was happy and sweet. I think that I can safely say that she has recovered from the procedure last week. Ahhhhh. That's me, taking a breath! The last time I was there, she had higher respirations and heart rate and the docs worried that she might have picked up bacteria again during the procedure. So, I was by her side as they drew blood from her Broviac in the chest, also from her little hand, where it is so difficult to get the blood drawn and an i.v resource person is called for better luck in the getting the job done. Also, a catheter had to be inserted in order to get a urine sample. It took about two hours for that process to be completed and it was not fun for Chloe and pretty nerve wracking for me. Thankfully, my husband Joe was there with me that night and offered support to both of us. So, as far as is known now, there is no infection and Chloe is feeling better every day. Today, we chatted for a bit and then I held her. I'm still a tad nervous getting all the tubes adequately situated in order to get her out of the crib and settled in to the chair, so I still ask the nurse for help. Not Jen! She is feeling quite adept at most things and makes me proud! So, as soon as I was comfortable, settled in with her in my arms and ready to party.....Miss Chloe promptly fell asleep! It really is a wonderful feeling, to know that she relaxes and dozes so quickly when being cozied up by her loved ones. It is such an amazing feeling to know that each one of you also cradle Chloe in your arms, at all times of the day and night, in your ever so heartfelt prayers. You have all become a huge part of Chloe's healing, of my accepting and believing that all things really are possible through God. This is going to be a long and winding road, a road with hills and valleys and also getting past all those and reaching the mountain peaks (those feed my spirit). I have never in my entire life experienced the love and support of so many people as all of you, no matter what the crisis or even a celebration as far as that goes! I can get on Facebook at any time of day or night, go to this page and find more group members and ALWAYS find encouraging words, stories and uplifting prayers, either on this wall or in my personal inbox. Each one of you is an angel, because in holding me up, you enable me to be there for my daughter, or son-in-law, or grandchildren, which in turn, allows them to hold each other up in much more positive ways. I will be indebted forever. Tears stream down my face as I write this and realize the positive effect you are having in Chloe's healing, in so many, many beautiful ways. I know that God provides, always. Sometimes, we cannot see the way, but as our faith holds tight, the most amazing things are revealed. I am so very, very glad He has sent us all of you! I cannot think of many more heartbreaking situations than those that we believe hurt babies. Thank you for helping me through this time in my life! Love and blessings to all!!! Nancy

Facebook Followers

It is absolutely remarkable to me that we have over 1,400 people on my group on Facebook. Each one of those individuals are sending love, light, prayers and good wishes to both Chloe and the family. Amazing! Please spread the word to your contacts from here if you are following this blog. Love and blessings, Nancy

Chloe's Heart Catheter Test

July 1, 2009 Unfortunately, I don't have the best news and not much time to report but I know many of you were waiting for news just I was. The heart test did not give any answers that point to it being the cause of the difficulty with breathing. Simply put, that means no surgery or heart medication will fix the problem. So, the lungs looks to be the culprit, and Chloe is quite dependent on the ventilator for taking life sustaining breaths. Unless some miracle occurs, it looks like Chloe will stay in the hospital, on the ventilator, until she weighs enough to be sent home. Jen says they told her this would be months. She is quite devastated by this news... we all had hoped the heart could be fixed, the ventilator would go away soon and she would go home to sleep in her own cozy and quite lovely new nursery. So, there it is. We are all reeling a bit. I have to get to work, luckily there was a coffee shop with WiFi right across the street and a few spare moments to get this to you. Love to all, Nancy