Monday, July 27, 2009

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 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 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

Wednesday, July 22, 2009

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

Sunday, July 19, 2009

Donating to Chloe and Her Family

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

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!

Saturday, July 18, 2009

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 that wrong? Is that sending negative vibes that are better not shared or is that the 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

Friday, July 10, 2009

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

Monday, July 6, 2009

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

Thursday, July 2, 2009

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