Wednesday, December 29, 2010
A blessing, (also used to refer to bestowing of such) is the infusion of something with holiness, divine will, or one's hope or approval.
Or...Chloe, Warrior Princess! As we celebrated this season of miracles and blessings, the fun filled activities that that delight children of all ages to no end, prayed for peace and gave thanks for all things good in our lives, the word blessing kept surfacing for me. At every turn, Chloe seemed to do something new or surprising, and the meaning of this word took on even more importance in regard to her life.
Just over 20 months ago, this little baby was born who had so many serious issues in so many areas of her tiny little body, her days seemed surely numbered. The blessings began in the form of highly specialized doctors, amazingly intelligent, caring nurses, compassionate social workers and the charitable Ronald McDonald House just down the street staffed with kind and intuitive volunteers. That was only the beginning, because as soon as I wrote my first entry here, a multitude of complete strangers added their names and their prayers to our never ending requests for both of them! Some of you sent much needed money, some of you sent presents, Chloe was remembered at Christmas and every one of you became our angels. Our blessings.
God is good. Every day that He has given us with Chloe is a blessing. Chloe IS the blessing. This month, Chloe walked. When I first shared the video, she was just 'practicing', but now she is off and running and doing her thing! How many of us wondered at some point if this would be part of her life? Amazingly, right after untethering that spinal cord, she crawled... and now she is walking. Christmastime brings special blessings, doesn't it? Another is that today she actually went potty in the potty chair! Girls just rock! She is growing up. Santa brought her a kitchen and she is a very busy little cook. She can push her little shopping cart at the 'grocery store' and has a very good teacher in her mommy. "Store" was always Jennie's favorite game as a child! Her favorite character is Dora, just like so many other little ones. She plays with her siblings, gives 'fairy kisses' (fingertip to fingertip) and signs many of the things she wants or needs. She can sign three word sentences now, which her therapist says is VERY good! A few days ago she went into the room where her diapers are kept, got one, took it to Mommy, and started to take hers off! How's that for a blessing? Jennie certainly thought so.
So, we count our blessings ALL the time. The ventilator is just used at night now, unless Chloe is tired or sickly. There have been some colds and flu in the house which she has not escaped, but nothing has turned serious! It is that WILL of HERS that lets us all sleep easier at night. We count our blessing each day because these are wondrous and fun days in every child's life. They just seem more special when you know the story of the Warrior Princess.
Happy New Year to all. This has been such a beautiful year in the life of Miss Chloe. We feel privileged to have counted you in our list...of blessings. New procedures and changes are upcoming in the new year. We will keep you posted. Until then, here's to all the best yet to come in 2011!
Monday, November 15, 2010
Thursday, August 19, 2010
I am so thankful for each member of this group and for family and friends who support us every single day with love, prayer and encouragement! I don't know about Jennie and Lance, but I could not have kept my sanity throughout the past 16 months if not for all of you and of course, God. Chloe, my mom, my marriage, other family issues-all have tested me, all at once it seems. More than once, I did not have the strength, or so I thought, to pray another a prayer or think another thought. When in that place, I knew beyond a shadow of a doubt that someone was praying for Chloe, for my family, for me. I knew that I did not, could not carry it all on my ever broadened but sagging shoulders. Today, I was again reminded that when the chips are down, you are there, keeping the vigil. Our little Warrior does not go unwatched, her mom and dad are strengthened each and every day with help of God. When our guard comes down a little it does not mean that we are not being remembered. Chloe's situation last night reminded us all just how special it is to live each, single day. Not one of us can be sure that we have another past this one. We MUST feel grateful and take delight in even the smallest moments each day.
Chloe is growing older, 16 months, and is just a bit naughty now...just as we would want her to be! But-Chloe has things that are very interesting to play with on parts of her body where most of us don't. She often is pulling the feeding tube out of her tummy, has just recently been very entertained by taking the trach tubing apart and even sticking her tiny finger into it! The actual removal of the trach from her airway, by her, is extremely frightening and until she is old enough to have the surgery to begin building her jaw, (about 6 yrs.) the possibilities for self harm exist. This was not a misdeed by parents last night, this was a baby in crib, settling in for the night, who literally pulled her airway out of her throat! I say these things because I do not want any one of us to become apathetic or lazy and think that Chloe and her family don't need you anymore. We need you, we need your prayers, we need you to continue to invite friends and help spread the word about this inspirational little miracle.
Today I visited my little angel bug and she seemed rarin' to go and very engaged. We played lots of horsey, I read her a book, practiced walking, played patty cake...all the things I do in a regular visit. It was different though, believe you me. As Jennie stated herself, "We might have been planning our daughter's funeral today." Nothing is the same. The siblings have experienced a near death experience and although it has been talked about and processed, that night will remain close for a long time to come! We all felt a little closer, a bit more connected. After coming home and reading all the well wishes on this Wall, I feel the same way about this group. Please stay forever. We need you, each and every one! Love and blessings! Nancy
Aug. 17, 2010 Chloe Has A Close Call
Thanks be to God for every prayer, every day. Tonight it became very apparent just how much we cannot let our guard down where Chloe and her family are concerned.
Tonight, as Jennie read a goodnight story to Kadin and Sierra and Lance was taking a bit of a breather right outside the front door on a absolutely beautiful Colorado night...Chloe was busy pulling out her trach. The ventilator alarms rang out, as they always when do when the tubing falls off, or lately, when Chloe pulls it off herself. Usually, it is not very concerning- it just needs to be placed back on and a button gets pushed turning off the alarm. Tonight, Lance checked when he heard the beeps, but Chloe was in trouble. She had pulled the entire trach tubing out of the airway, and Lance was unable to get it replaced. As he yelled for Jennie, she did not hear him, and they now understand how little is heard from the kids room to the living room where Chloe resides. She had noted the alarm, but knowing Lance was close by, gave it a bit more time before realizing Lance was yelling for her. As soon as Jen got into the room, the urgency of the situation was quite apparent. For whatever reason, the trach tube was not going back in... after three attempts, Chloe still had no airway. With Jen in the room, Lance was able to get 911 called and on the way. At this point, as Jen got to Chloe to try her hand at putting in the trach, she felt that Chloe was gone. She says she must have said to Lance that she thought that she was dead, just as Sierra and Kadin ran into the room to see what was happening. Working through the panic of a blue, limp baby taking no breaths, she did get the trach in and immediately began CPR, giving life giving breaths directly into the trach opening. Praising GOD as I write, Chloe took a breath! Soon enough, she was breathing, but her eyes remained glazed for a moment and Jennie was of the belief that she would be brain dead. Rewriting this story so soon after hearing it has brought tears to my eyes once again. Little Chloe, so fragile, so beautiful, such a wondrous little one who has graced our lives in so many ways! As Jennie held her, speaking her name over and over, she asked Chloe to just let her know that she was okay. You know what happened? Chloe looked right at her amazing mommy and signed, "Yes". This baby, who was not breathing a few minutes before, SIGNED to her ever so distraught mother that she was okay! Soon after, Jennie asked her to just do her little dance, which is really just a bobbing of the head, and she did that too!
As she stablized, the fire truck arrived...finally, and Jennie walked outside, sat...and cried and cried. Neighbors gathered who had come to grab the kids and to make sure that the outcome of sirens to the Cooper household was a positive one. Thank God that the story told tonight has a happy ending. We know that many of you keep this family in your prayers on a daily basis, we are grateful every day knowing that Chloe has inspired you enough to be remembered in your busy and hectic lives. She had made such tremendous strides the past six months, weaning from the ventilator, crawling, taking her first step, learning so many signs, remaining so very happy through every possible obstacle! We cannot forget, though, that Chloe is still on life support and that each day is a gift. A gift for each of us. Jennie and Lance feel that your prayers and the watchful eyes of angels everywhere give them their strength to do the very special job they have been given to do. Tonight I give thanks to God for giving me the most amazing daughter and son-in-law, who don't fall apart in crisis, who observe, and learn and DO WHATEVER NEEDS TO BE DONE to keep my grandbabies safe. I give thanks for 4,190 special people who are involved in our lives because of one unique and miraculous baby! Thank you God, for allowing me the opportunity to wake up one more day with all loved ones still here with me.
Wednesday, July 21, 2010
He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.
One year ago today we watched, you waited for news, as little Chloe, only 13 weeks old was wheeled away into surgery to mend her broken little heart. If you remember, the months that had passed were grueling, as doctors could not decide exactly what action to take to help Chloe breathe. The ventilator, her life support, was hard at work, but her heart rate would soar to nearly 200 on a constant basis and she struggled every day to remain here with us. Pulmonologists waited for heart specialists to make moves, heart specialists waited on pulmonary! Each time I wrote this update asking for prayers, we were in dire need of encouragement and prayed that God would find mercy and give Chloe's medical team the answers to the puzzling little baby in the neonatal intensive care at Children's Hospital in Denver. Chloe's life was jeopardized so much of the time. Parents, grandparents, siblings, aunts, uncles and friends-all were frazzled as days upon days stacked up, new problems arose and were dealt with one by one as we sat in shifts every day and every long night...never wanting to leave Chloe alone. God blessed us with nurses who fell in love with her and prayed along side of us, doctors who never gave up fighting for her, and thousands of people from all over the world came here to pray for her and for us.
The day the decision was made to fix her heart was a banner day, believe me! Something HAD to be done and Chloe was in need of a miracle. Knowing that it had to be done did not make it any easier to give kisses and well wishes as she disappeared into the closed walls in the surgery wing that early July morning. Not one of us acknowledged our fears, we only spoke of the miracle baby who fought like no other, who surprised doctors at each and every turn by doing exactly the opposite of whatever they expected of her. Chloe amazed us EVERY day and this day we prayed that the heart surgeon had been blessed and given special instructions to do his best with this very special child of God. So many unknowns plagued doctors all along, as so many of Chloe's organs were underdeveloped. So many things could have gone wrong. But they DID NOT! God was well represented that day in the operating room and each day following. Angels disguised as doctors and nurses repaired two holes in her open heart surgery and after hours of waiting and wondering, we we allowed to see our beloved Chloe.
Imagine! Three months old and open heart surgery! My mother had the procedure done at 78 and it was almost tortuous to watch the healing afterward with her! Chloe was medicated heavily when we were called to check in, the sight was not a pretty one, but Chloe lying there... breathing... heart rate STABLE, was a VERY beautiful thing! She had not one single complication and ahead of schedule was given less and less pain medication and released back to the NICU much earlier than planned! The surgery was a GIGANTIC success and from that day forward, Chloe was a new baby! We all watched that monitor that we had feared with awe, as numbers remained in the normal range hour after hour, day after day! Chloe had been given a new lease on life and I KNOW we ALL, you and each one of us, breathed a COLLECTIVE sigh of relief! So, today is the one year anniversary of the Warrior Princess getting a new lease on life! We all know that many problems arose afterward, that weeks turned into months and it was still six months before she was released to the love filled home where she now resides. But THAT day, those weeks following that surgery, gave us all a renewed sense of God's goodness and his promise that we all have purpose. Chloe is like no child I have ever seen. She has brought to date, 4,190 of us to share, encourage and love one another through faith and thanksgiving and I feel certain that with continued prayer and growing numbers, God hears the multitude of prayers and smiles down on us each every day. This child, this Warrior, has just begun whatever she has been sent here to do. Just look what she has done in 18 months! Given 18 years...WOW! If you scan through my pictures here, you can revisit that surgery day with us. My scripture for the day is very fitting! We are praising the Lord for Chloe and all things she has brought to us! Thank you God!
Thursday, June 24, 2010
Wednesday, June 9, 2010
Friday, April 23, 2010
Tuesday, April 20, 2010
Tuesday, April 13, 2010
Wednesday, March 24, 2010
Mar. 24, 2010 What a wonderful group! March has been a super great month for getting new members to the group and I want to thank everyone who has helped us to grow! My New Year's Resolution was a very simple one-Choose Love, and with so many absolutely faithful and encouraging supporters, I have found it pretty easy to stay in that place. March has found me to be IN GRATITUDE! I feel that Chloe, myself and the rest of the family have benefitted each and every day since the inception of this group, how can I NOT be in a positive place? God really is so good, all the time. Each day, you are ALL remembered in MY prayers! Our Little Miss Warrior Princess is just blossoming more each and every day. The pink and purple crocus just down the street have nothing on her! This has been a tough, cold, snowy winter and having such a compromised respiratory system has made it necessary to keep Chloe inside most of the time. She hasn't been a winter wallflower completely though! We have had some sunny, warm days, especially the past few weeks as we move into spring, and Jennie and Lance take every opportunity possible to get her outside. In the past two weeks, she has spent many hours on a blankie outside, discovering some pretty remarkable things in just her front and back yard! Having a battery pack for the ventilator makes it possible for Jennie to move her about throughout the day. It is a bit of an ordeal, but nothing that my remarkable daughter doesn't just see as a new normal. We were also able to have her take part in the festivities of her first official fundraiser. Many new and local people got to hear about Chloe and Chloe got to experience the most beautiful music! Watching her tilt her little head to the 'just right' position to hear the music when it began was so very, very memorable. It will be one of the visuals I will take with me for the rest of my life! Getting her out to the event was a pretty big deal but well worth every minute of preparation to make the trip to Boulder. Another night, Sierra had a fundraiser for her school at the Chick Filet in town-of course the family all had to be in attendance! One weekend, her Uncle Brandon was selling his chocolate fudge at a Buy Local market in town. The whole family made it down to 'help' and after 'helping' for a few minutes, Chloe decided selling was tough stuff and fell promptly to sleep! These days, Chloe actually has an opportunity to 'just be one of the family'. So many months of having that NOT happen because of the lengthy hospital stay makes these times out super special. The kinds of things we many times take for granted have become very apparent to us since Chloe's birth. We have felt incredibly blessed that Chloe has built a really great immune system and has not gotten sick this winter! With all the doom and gloom predictions of record flu season looming, there certainly has been concern whenever a sniffle germ rushed through the door and somehow escaped the massive amount of sanitizer in the house! But...only one cold bug grabbed hold of The Warrior Princess and she handled it very well. Thank God for big favors, because a respiratory infection, or any situation involving her lungs could have very negative consequences. This baby started out tough and prefers to remain that way! I am certain that the amount of continuous prayer from all of our friends and family has kept her well! As she grows, her development continues to be on track in most areas, especially considering that she has had to compensate for such a small amount of stimulation because of the serious medical issues and long, long time in the hospital early on. Now, even without ears, with the one bone conducting aid she seems to hear sounds and responds to noises, music and voices. She is learning more and more signs and loves to play with her toys and most of all...her Grandma! HA! Maybe not JUST her Grandma...she just loves to engage with everyone and loves getting attention. She pulls hair, grabs glasses, pulls hands away that are wiping her nose or trying to get her suctioned and let's everyone know in no uncertain terms when she is either angry or happy! Chloe has a beautiful smile and loves, loves, loves to be tickled! Her physical therapy continues to go well, and she is able to stand holding on to the couch or with some other form of support. She weight bears much better on her legs and is getting closer and closer to making the giant crawling leap! She is just a delight and if I could figure out how to get them loaded on the new Facebook, I have some GREAT pictures. Just wait until you see her, so adorable you will just want a Chloe of your own! Hopefully, I will get some help and get pics up soon! One more month, and we will have made it to the one year old mark! Wow, what a year! This family has been tested on most every front and we still march forward, hand in hand. Thank you again for supporting us in doing just that! Until next time ,love, blessings and peace to everyone.
Sunday, February 21, 2010
Chloe continues to delight and amaze us with her growth and capacity to make us smile and love her more and more each day. The past month has basically been filled with joyous moments and although the news is not always what we hope it may be, we bring to it the knowledge that Chloe is doing this life her way, God’s way. She will never be boxed in by ‘won’t” or ‘can’t’ or ‘never’. This child is being protected and sheathed by God’s love and prayers and positive energies of so many people around the globe! ‘Go Chloe’ has been a sentiment expressed time and time again here, and ‘GO’ she does!
Onward we go to the developmental news of our little warrior. As of yesterday, Chloe is 10 months old! What a journey it has been so far! I find it unbelievable still that she has only spent a little over one quarter of her short little life outside of the hospital! The progress that we have experienced since leaving is quite remarkable! Chloe is continuing to learn more signs and can now sign her brother Kadin’s name. Having this happen has made him feel much more involved and he is taking the role of big brother much more seriously! Jennie reports that he finally asked to hold her and when told that he certainly could, replied, “No, I don’t really want to.” Encouraged by Jennie, suggesting he ‘might be just a bit nervous’ and that he ‘really DID want to try’, he took the challenge and with a bit of ‘help’, carried his sister down the hallway! Since that moment, and Chloe being able to ‘call’ his name as she has Sierra’s for quite some time now, he has found his helpful brotherly way. Chloe can sign so many words now, the newest being ‘change the diaper’. Jen says that she will sign it when she is wet! Smart girl, she knows how awful those rashes can be! These sorts of things remain so encouraging because it appears that Miss Chloe is just a wee bit smarter than the average little bear. Given the physical challenges that are yet to come, these bits of news are like popsicles on a hot summer day-VERY welcome! She is also able to stand alone for quite some time with support, and is quite determined to begin crawling. We have been cautioned that this is time when Chloe may look to lag behind other babies developmentally because of the long period spent in the hospital and the time catch up time involved. Chloe doesn’t think so! Hearing that has made her ever so much more determined to get herself moving! Helping her to coordinate hands and legs when crawling has been a part of her physical therapy for quite a while. Now, she is able to get into the crawl position and rock back and forth, determined as can be to MOVE, for 20 minutes at a time. Just holding herself up for a bit not so long ago made her quite angry. The grimace would come and she would lay her head on her arms in defeat! Not so anymore. This baby will not be held back! She may have a tougher, bumpier road to travel, but she does intend to travel it!
Last week Chloe had an important visit with both the Ear, Nose and Throat (ENT) and Pulmonary doctors back at Children’s Hospital. She has been doing quite well, with few drops in O2 levels and pretty routine days with the ventilator settings as they are. The docs were pleased, but Jennie and Lance asked for just a small adjustment in the vent settings in order to begin preparing for ventilator trials at some point in the summer. The doctors agreed to lowering the pressure amount just a bit, which in itself doesn’t sound like much, but in the bigger picture could make a difference. Chloe is doing just fine with the new settings. Summer will not be too soon to begin trials for less and less time on the ventilator. As you know, previous ones were not so successful, but Chloe is doing well and hopefully her lungs are growing along with the rest of her and eventually the ventilator will be a thing of the past! How wonderful and easy it would be to have a baby with just a trach! I remember oh so well how scary and daunting that, in itself, sounded in the beginning. Oh, how relative things are!
The ENT news was not quite as good, but this is where we put Chloe into the category of ‘I’ll do my own thing, thank you”! The doctor was quite surprised that she had not had her throat and nose scoped up to this point, so got right on that. He determined that there were no issues with the nose or throat, but feels that Chloe’s vocal cords look pretty abnormal. He stated that there was the possibility that after the vent and trach are gone, Chloe may still never speak. I don’t think any of us had really considered this up until this point and speaking for only myself, it felt a little like a kick in the gut to here it. It has been hard up to this point never having heard her cry, but I guess we have all just assumed that for now we teach sign language, and later we’d be doing speech therapy. Who knows? It was just a bit of a heart breaker for me, and Jennie and Lance remain positive that Chloe has outwitted the docs every step of the way so far, why not on this issue also? I’m a positive thinker also, and will remain so, I just need to work through this a bit. He also talked of the ‘nightmare’ he sees ahead with orthodontics because of the jaw issues, but on the other hand was quite surprised when he looked in her mouth and saw how well the bottom teeth are emerging so far. We might get a break there also! God is at the helm of this ship and has stayed the course through some mighty severe weather. Why on earth would he stop now?
Feb. 21, 2010
So, as lengthy as this is, I’d better wrap it up. I do have my first real appeal for a concrete need for money donations. Many of you noticed the hearing aid that Chloe had fairly early on that was attached to a bow on her head. That hearing aid was not a good quality one, but was what insurance would pay for. It was bulky, filled with static, and dug into Chloe’s head. Expense-wise, it was what we could have. There is a much better hearing aid, called the Baja, that Chloe has now had gifted to her for one side, by a parent of a child in Ft. Collins. It is so much more remarkable, Chloe loves it and it is held in place on TOP of the headband, therefore allowing her to wear it more because it doesn’t physically hurt her. After hearing the news this week about speech, it is IMPERATIVE that we get the Baja for the other side of her head ASAP. The difficulty, of course, as was before, is the cost. The out of pocket expense for this aid is $5,000 and without donations, Chloe will not have it. It is as simple, and as sad, as that. I ask that you check those couch cushions, give up that one Starbucks, ask your neighbors, your churches, your friends…to help Chloe in this ever so important quest for donations. Maybe you know of an organization that we don’t know yet, or have a connection you can help us through. This is the first time I have asked for something so defined, and hope you can find it in your hearts to help just a bit. Those little amounts of money that you don’t think will make a difference…when put with all the other little ones…MAKE A DIFFERENCE! Please see above for the banking information where YOU can go to make a difference. Thank you ahead of time for ANYTHING that you can manage. Thank you also for continued prayers, encouragement and love. This journey just would not be the same without all of you! Keep inviting friends! Love and blessings to all, Nancy