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!
Wednesday, July 21, 2010
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 us...you 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 move...so 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
Friday, April 23, 2010
Tuesday, April 20, 2010
It's My First Birthday!
Here are some photos of Chloe taken pretty recently. Sure hope this is a successful link!
It's My Birthday! at OneTrueMedia.com
Come and see me and witness what a miraculous first year of life I have experienced. Chloe, sweet love! HAPPY 1st BIRTHDAY!
Tuesday, April 13, 2010
Big News In Chloe Land!
April 14, 2010 Unbelievable you might say, but I think I might have writer's block! Seriously, I have tried to begin this for the last ten minutes, written and erased twice and finally just decided to give up! Then I decided that I could at least give a quick little update to let you know of recent progress and get you prepared for next week. First, Chloe has had a remarkable month in all areas. She is happier and happier every day and spends much of her day playing like all babies! She loves books, babies, toys with flashy lights and music and loves to play with anyone who catches her eye! It is NOT hard for Chloe to get attention when she wants it, believe me! She laughs so much more frequently and has become much more interested in what her siblings are doing and trying to join them in whatever capacity she can. Two very important pieces of news in the past couple of weeks have to do with physical issues. Most of you know that because of the lack of jawbone, Chloe's tongue falls back in her throat. This causes two very different problems. One, of course, is the difficulty in breathing and the other is her inability to swallow normally. Her breathing difficulty is addressed with the ventilator and the swallowing issue with a feeding tube for her nourishment. Up until now, she has only been fed formula, so it was a pretty big deal for the nutritionist to give the go ahead for solid food in the past week! Jen was given recipes to make at home, and all of the food is blended to a liquid consistency, but Chloe is eating REAL FOOD! Yippee! She started on a couple of veggies and some meat and is doing very well! This is very exciting news and will lend itself to much more normal development. Secondly, Chloe was seen by the vision specialist and it has been determined that her vision is normal! Hallelujah! It has been a bit difficult to know because of the little cleft on one of the lids and Chloe sometimes seems to be straining to see things-looking at something very close up or staring for long periods of time. She loves to look at hands! Now that I am thinking about it, when looking at things at a distance, she seems quite focused and doesn't seem to have problems at all. Anyway, getting the news from the doc was great, they will fix the cleft in the eyelid in a somewhat difficult surgery, but we know she is seeing and that is just one more blessing to add to the list of so many! Maybe the biggest news of all...next Tuesday, Chloe, Warrior Princess, will celebrate her first birthday! Those of you here since the beginning know the enormity of this milestone! Chloe experienced so many, many health problems and many times it truly was not known how long we would be blessed with her presence. Many of her nurses read this blog and we will forever feel huge amounts of gratitude to you for the loving care given to her month after month at Children's Hospital. For much of seven months there, no one seemed to know from day to day what to do or how to handle Chloe. Her nurses just continued to give good care no matter the circumstances and gave so much to the family as a whole! So, here we are, almost a year later! To all of you in this group, THANK YOU! Many times when we were so stressed and tired it was YOU who carried us through the most difficult of times. Our group continues to grow and God hears each and every prayer! We sing His praises each and every day! Chloe's birthday is on Tuesday and on Thursday, the 22nd, she will once again visit Children's Hospital for another surgery. She has what is termed a tethered spinal cord and it needs to be 'untethered'. The way I understand this is that her spinal cord is a bit longer that normal, and at the bottom of the spine, it is attached where it should not be attached. We are told that this is not that uncommon, although I have never heard of it before. An incision about an inch long will be made in the lower back and the area holding down the cord will basically be snipped, allowing the spinal cord to float unattached. It is expected that Chloe will just need to be in the hospital for three days. Jennie will stay at the hospital, Lance will be staying back at the Ronald McDonald house when not at the hospital. Having had Miss Chloe home for about five months now, none of us could imagine leaving her alone AT ALL in the hospital, so we will all be doing our duty to cover kids and support parents-getting the job done and getting that baby home once again! We will be counting on all of you, as usual, to keep our precious princess in your prayers. I will certainly let everyone know the day of the surgery how GREAT the outcome is! So, no writer's block after all! I really have been waiting to write when I could post pics too, bit am still having difficulty. I am glad that I could get this out tonight! Love and laughter to all, Nancy
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