Wednesday, December 29, 2010

Our Littlest Blessing

Dec. 29th, 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

Long Awaited Update! Chloe Grows and Grows!

Nov. 14th, 2010

"Bloom where you are planted." Tiny, tiny stitches spell this out for me in a framed piece of embroidery given to me by my mother when I left for college so many years ago. It has traveled with me to many a home, been put upon many a wall! Unpacking after this latest move, upon finding it, it struck me that this was now Chloe' motto. No one, absolutely no one expected the seriousness of Chloe's medical issues on the day that she arrived at Children's Hospital in Denver. Each day for months brought obstacle after obstacle, question after question, stress after stress. The adults who made up her world prayed, cried, sighed, paced, lost sleep, prayed some more and asked others to do the same. Chloe? Chloe just laid back and continuously figured out how to outfox the the most dire predictions, how to make bad mean good- refusing all negative possible outcomes and affirming only the positive paths. In other words, she 'bloomed where she was planted". We watched in awe as she moved through the pain, the fear, the medical impossibilities and we rejoiced with you!

At seven months old, one month before Thanksgiving, Chloe was allowed to go home. The excitement built for weeks, there was also some anxiety, it was a big job to take on the care at home. Many modalities were put into place to help but Chloe's parents, Jennie and Lance...they knew that the responsibilities were theirs. Funny thing though, after sitting at her bedside for so many months, no one knew this baby better than her mommy and daddy. So many times they both were telling doctors what ended up being the best course to follow. The family just wanted to take their baby HOME! So, who embraces the home life more that any other? Well Chloe, of course. Chloe decides that after FINALLY being given the opportunity to show what she could do outside the confines of the hospital that she just wouldn't waste a minute! So many truly miraculous things have happened to this little Warrior Princess since her big break out! If you have followed this story for any length of time, you know some truly miraculous moments that I shared as they were happening! Trials for increased time off of the life supporting ventilator, first attempt at rolling and crawling, playing, making of sounds, all the special ways that Chloe has shown love to each of us. Jennie and Lance have included her in each activity that 'normal' babies would be trying out as they got a bit older, her first strolls in the stroller, playing on the lawn, going to the park, Christmas, snow, Halloween...all have been experienced and enjoyed by our little angel and encouraged by her very courageous parents. Every moment has not been delightful of course, as Chloe experienced a serious spinal surgery in the early summer and had a couple of very serious issues with breathing that undid us this summer in an extremely emotional manner as we realized how fragile she still can be!

I have been somewhat remiss the past two months in reporting all of the goodies, as I have moved and put energies elsewhere, I realize there are MANY momentous moments to share at this point. As Chloe grows, language is such an important and imperative issue to be dealt with, and her hearing loss plays a large part in this development. It has been determined that even though her 'cosmetic' ears are lacking, the actual inner and middle ear did develop more that expected. Chloe's hearing loss is not as severe as it could be, and the hearing aids are allowing her to hear more than we had hoped! Delightfully, we watch as Chloe picks up and understands the signs that are being taught and is actually making up some of her own now! They are the cutest thing you have ever seen! She is SO bright and is quite the little thinker! Jennie posted a picture a while back of Chloe placing her head directly on Lance's guitar in order to better hear it. She is figuring out a new method all by herself! Having four and six year old siblings who each adore and spoil her doesn't hurt! She has a lot of keeping up to do! This little Warrior would amaze you at every turn, just as she continues to do with all who love her here! The very BEST news that I have to report is that Chloe has totally disregarded doctors predictions and has very quickly discarded the need for the ventilator to breathe for her a MAJORITY of her time in the day. She is put on it when napping and does still remain attached to the machine at night when sleeping, but her lungs have matured and she is most often breathing on her own! When Chloe started making moves toward crawling, it was obvious just how difficult that could get. The tubing from the machine is not very long, and just motivating a short way in the living room had to be monitored very closely! NOW, without being attached, she is able to crawl around the house untethered, just like any other curious baby! She is attempting to walk, and is very proud to show just how long she can independently stand! She loves playing with her 'baby', stands for long periods of time at the Lego table crafting her innovations, pulls our hair, grabs our glasses, cruises in her walker, laughs, enjoys the mischief that is intrinsically a part of being not quite 2 years old! Such a delightful baby, hugs are warm and inviting and kisses are given by touching foreheads. ( Chloe's own invention!)

So, I cannot think of another place where "Bloom Where You Are Planted" is more appropriate. God placed Chloe in the care of loving, educated parents. They are doing their part to give her every opportunity to move forward. Chloe has taken on the challenge of doing the blooming...wherever she may be. In this scenario, she is the entire flower garden and her beauty is a prize winning blue ribbon every day of the week!

Thanks to everyone for being here on a daily basis, for sending love and encouragement through many different forms at any given time! Now, I charge you with helping me to raise the member number in this group! You will be blessed just by dropping by from time to time! God's love and blessings to all!

Thursday, August 19, 2010

Chloe Has A Close Call and The Day After

August 18, 2010 The Day After

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

Chloe's One Year Anniversary of Open Heart Surgery

Deuteronomy 10:21
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

Chloe Surgery Tomorrow, June 24th- Untethering the Spinal Cord

June 23, 2010- Eve of Untethering of Spinal Cord Surgery Little Warrior Princess. Miracle. Inspiration. Angel. Grandma's Chloe Bug. I write this update especially for you, Chloe. This evening your mommy and daddy dropped off Sierra and Kadin at my house and we had a few minutes to chat and play before you headed to Denver to prepare for your surgery tomorrow. Playing with you in the car made Grandma especially happy, because your smiles just did not stop. Having taught you how to high five in the first place, watching you pick up and continue the high FOOT five was very silly and remarkable! Your dexterity with your feet, the amusement they have brought you over time, has never escaped me. I adored the way you lifted that chubby little foot into the air to meet my hand. I enjoyed it even more to watch the sparkle in your eyes, the mischievious grin, knowing that you had impressed me with your quick wit! It was difficult to watch you leave, knowing that I will be watching and entertaining your brother and sister as you spend a few days in the hospital. This is the longest stay for you since you left Children's Hospital right before Thanksgiving last year, after spending a full seven months there! I want to remind you of the intense and utter joy we all felt as you were placed in the van and driven home! You have made so many friends, you have people praying and sending healing energy to you from all over the world! I know that I will blow your mind someday when you are older when I share this journal with you, the constant outpouring of love and support that you garner just by being the tough little cookie that you are. A better baby would be hard to find. You have endured and gracefully dealt with each and every painful procedure and obstacle placed in your way. I absolutely cannot say that I have ever come across anyone in my lifetime with such fortitude with a super positive attitude to match it! I love you so deeply, you make the world around us all a better place. You remind us all that life is tough, that some are different, but that everyone is a bright and shining light in God's eyes. None of us any better than another of us. Some of in particular...just seem to bring out the best in the rest of us. Thank you Chloe! I look so forward to giving you your first Grandma Grandma hug and cuddle in a day or two! You are my hero!

Wednesday, June 9, 2010

June 2010 Long Awaited Update!

June 8, 2010 Hachi. A movie about a dog and a man. A movie about LOYALTY. 'Not ever giving up on those you love.' You, oh faithful readers have been Chloe's loyal followers. I have had such an overwhelming last year, the past six weeks have changed the way I view life and those most important to me as I live it. Thank you for continuing your unwavering support and prayers, your continued sharing of Chloe's story while I have dealt with issues that did not allow the time or brainpower to update you on Chloe. Watching the movie 'Hachi' tonight compelled me to get this written, so please watch it if you have time. It is a wonderful story and I want everyone who has helped my life to run a bit more smoothly and those who have aided so lovingly in helping my mom to recover, to know that you can count on MY loyalty to days end! Thank you! As happens, two months in any baby's life means lots and lots of changes and our Warrior Princess is no different than others. As you have seen by pictures I have been able to share, she is growing like a weed and making developmental milestones just as we all would hope! Chloe has been on the verge of crawling for some time and in the past week has figured out how to move forward, backward and sideways! Crawling to something she wants is now in her repertoire of accomplishments and life is changing in the Cooper household! It has been relatively easy to handle Chloe and the ventilator as long as she was not entirely mobile, but that just is not the case anymore. Figuring out how to keep her in one place, yet able to move around as she learns to navigate the world is keeping mommy and daddy busy. The ventilator tubing only reaches so far, so if Chloe is on the move, you are too! A new crib has been ordered to place in the living room where she mainly resides, because it is just no longer safe to keep her rooted on the couch! This girl wants to she shall! Normally, a baby could be placed in a playpen at this stage for a bit of containment, but the condensation in the ventilator tube at that particular grade wouldn't work. So, we have ordered a crib with lots of nice storage and Jen will be able to condense some things and not take up her whole living space! We are all very excited about these changes, as it means progression for Chloe! Another MOST exciting development is that Chloe has truly discovered her vocal cords! Remember early on when we were told that we might never hear sound from her? Even in the early days, at times each one of us separately would hear this little sound, but were always told that it must be a small leak in the ventilator tubing. None of us really bought it, but what did WE know? Well, Chloe has blown that silly theory right out the window. She has found a way to make a very sweet and delightful sound, I call a dolphin noise for lack of a better description. She uses different tones and especially when she is very excited, can 'talk' for quite long periods of time! It is one of the most astounding experiences to engage with her in and I hope to get a video of it here soon. Audiology testing has been done now and they say she hears more of the very high pitched sounds, therefore is trying to copy what she is hearing, just like 'normal' babies! If there is one thing becoming more clear it is that even though Chloe has challenges ahead that most of us could not fathom ourselves...she IS DETERMINED to remain as 'normal' as possible in everything she does! She may have physical abnormalities, but this baby is right on mentally! Today Jennie reported that her jealousy phase has kicked in. Holding and cuddling of her siblings by mommy has recently become quite a no-no in Chloe's view and real tears appear and very mad faces when she sees Sierra or Kadin being loved up! The lesson has begun that mommy's have to be shared! So adorable! On the whole, life has been moving along pretty well. Every now and then, Chloe reminds us that each day is a gift and that none are to be taken for granted. She did make it perfectly well through the general anesthesia and removal of the nodule from the trach site. By recovery time she was ready to sit up and get the heck out of Children's Hospital! No complications came from that and she also recovered nicely from the pneumonia that preceded the surgery. Just when you start to relax and feel that all is GREAT, Chloe throws a few things out that require stepping back for a moment and remembering that she has come extremely far and still has miles to go! Summertime seems to have brought a bit of an issue with heat. The first hot day we had, the AC was not working correctly for a while at their house. As the day warmed up, so did Chloe, and the hotter she felt, the higher her heart rate went. This was somewhat concerning as it has not been an issue for such a long time! The fan was found and as we cooled Choe down, the heart rate slowed to acceptable numbers. Lance came home as soon as possible, fixed the problem, got the house cooled down...the Little Princess had her climate controlled room once again and was just fine. I guess we will have to watch temperatures for a while. Our scariest experience was just last weekend. After the intensity of the past few months, I wanted to take my family to our extra special music venue in Morrison Colorado, for a night of FAMILY fun and relaxation. Jennie spent time getting Chloe covered for the evening, I did the same for my mom and off we went. Red Rocks is about 1 1/2 hours from Jen's house and the furthest she has ever been away from Chloe. About 90 minutes into the concert, Jen turned to me and said, "I just don't feel comfortable. I have to go home. I don't have any bars on my phone! Something isn't right." I looked at my phone, which was getting reception and we got barely far away from the music to call and to hear the nurse report that Chloe had had the trach come out, had stopped breathing, been unresponsive and had turned blue...but that it had been handled and she was okay! Talk about sending my daughter into a frenzy! She and Lance went flying down the mountain to get home to their little one with much anxiety fueling their fast descent! Chloe WAS fine, but something of this sort had not happened in quite some time and was really unexpected! We are grateful for the nurse that was with her and for the extra night nurse in training being on hand that night! Our God watches over this baby when mommy can't FOR SURE! I'm sure it took both nurses to handle the emergency and by the grace of God, two were in attendance! So, this was a reminder to me, and I am sure others, that we must stay vigilant in our praying and remain in gratitude for all answered prayers. Chloe is such a gift. She has brought so many strangers together and sharpened the faith of many. My beautiful daughter has stated to me that if given a do-over, she would pick Chloe over all others the second time around! That is love, that is motherhood...that is loyalty! Loyalty, my word for the day! It is my intention to get back in the groove here and keep you posted much more regularly. Chloe's next surgery is June 24th, I think. This will be the untethering of the spinal cord and a longer stay in the hospital. I will give you all necessary info and details as I know them! LOVE TO EACH ONE OF YOU! Nancy