JoeandKrista's profileJolee Jean's SpacePhotosBlogListsMore  |  Tools Help |
|
June 24 Rainbow of HopeJana, the mother of another CDH angel, started a website that focuses on CDH awareness. It's http://www.arainbowofhope.com and I think it has a great name and logo! June 20 More bracelet infoAs mentioned in our previous entry, my local MOM'S Club made some CDH awareness bracelets. They cost $10 and at least $5 from each will go towards Legacy Emanuel's Children's Hospital Foundation in memory of Jolee Jean. They have CDH and a ribbon bead. Also there is a J bead and emerald crystal attached to the clasp to remember Jolee and her birth month. For a bigger picture see slide 8 in the photo album or click on the picture below. The bracelets measure 7 inches in length - let me know if you're interested in a longer one because we'll be making some longer bracelets too. You can write checks to MOM'S Club of Port Orchard ($10 + 1.50 if you need it shipped). Please email for mailing instructions.
Thanks, Krista
P.S. We've had some questions about the pop tab collection,etc so here's the info again. You can give the pop tabs directly to us or collect them and drop them off at a local Ronald McDonald house that participates. See the following link http://www.rmhc.org/content/rmhc/index/programs/ronald_mcdonald_house/pop_tab_collection.html
For the Children's Hospital Foundation http://www.legacyhealth.org/body.cfm?id=606
Our FBO account (For benefit of Joe and Krista Scott - for medical expenses) is through Washington Mutual http://www.wamu.com for locations. June 15 First week backIt just doesn't feel right to be home without our baby. We knew that it was going to be rough to have a baby with CDH and were prepared for the long haul. We didn't think things would turn out as they did - Jolee seemed to get off to such a good start. We're glad we gave Jolee the chance at life because there are so many CDH survivor stories. We haven't thanked all the CDH and NICU families we've met through Legacy Emanuel and online. Thanks for sharing your stories - both survivors and angels. It's been wonderful inspiration and support. We can't help but continue to watch everyone's blogs and hope to keep in touch every now and then with a comment, email or through Breath of Hope.
Thanks also to everyone who has made donations in memory of Jolee and provided us with meals and flowers. Big thanks to Marsha for setting up the FBO account for us and for those who have donated to that. We will use the funds towards our medical bills (the bill for my two days in the hospital already came today!) and any leftover to the Children's Foundation.
Joe is back to work this week. Blake and I have gotten out of the house for a few activities. With inspiration from Jana's friend Dawn, my local MOM'S Club friends organized a CDH bracelet making session (got 50 done in one afternoon!). The bracelets have the initials CDH and a ribbon. They also have two charms hanging from the clasp - one is a J for Jolee and the other is an emerald bead for May. We plan on selling them for $10 with $5 of each sale going to CHERUBS or the Children's Foundation. Let us know if you're interested (josefscott@hotmail.com).
I have a lot of emotions going on right now - tears, anger and what ifs, shock. But I am so glad we've shared our story because we don't feel alone. And we're so happy to know how many people shared our love for Jolee!
Having Blake keeps us going - literally and figuratively. Just about a week before Jolee was born, Blake slowed down long enough to feel her having the hiccups. Yesterday, I was feeling my belly and Blake saw me and said "is she hiccing up?" He recognizes pictures of his sister but doesn't understand that she's gone. He seems glad to be back in his home routine but still asks to go to Ronald McDonald's house.
We'll keep trying to post every now and then to let you know how we're doing. Love, Krista June 11 The Children's GardenThis was written by Grandpa Scott for Jolee Jean's service.
A small courtyard, a plot of paradise with brilliantly colored flowers, umbrella like shade trees, meandering paths, resting benches, melodious song birds, and a brave red-breasted robin, nestles at the foot of tall, cold glassed connecting buildings, The Children's Garden.
A ten foot Tin Man majestically stands, firmly anchored among the flowers and trees, in The Children's Garden. With his heavy weathered metallic armor, pointed tall hat, and his metallic gaze, he guards the yellow brick road, the large mosaic turtles a little boy named Blake sat upon, the large silent standing purple horned cow, the bronze children bathing under the old fashioned water pump in the bright glistening sunlit shower, and along the path a children's mailbox, just the right height, where loving messages were secretly delivered to a little blue-eyed boy, under the Tin Man's gaze, in The Children's Garden.
One bright sunny afternoon, something catches the Tin Man's eye and the red breasted robin becomes still. A silent procession enters The Children's Garden. A mother and father, gently holding a silent and still, beautifully pinked wrapped bundle, closely, against their chests, meander down a well worn path. Loving, soothing, courageous and encouraging words float along, carried into the gentle afternoon breeze. The Children's Garden is no stranger to these scenes of joy and grief that it welcomes so naturally.
Gentle hands caress her. They lovingly enfold their child, Jolee Jean. The small procession settles under an umbrella tree close to the children's fountain, the bronze children crouching under the singing, splashing waterfall. Couples walk by, glancing and knowing. Jolee Jean is free, in the light, the warm gentle wind caresses her porcelain face, and above, through the umbrella trees, the puffy white clouds accentuate the deep blue skies, and the red breasted robin and his choir continue their joyous verses, in The Children's Garden.
Jolee Jean is sung the old favorite tunes. Her parents and grandparents lovingly trace her face, "Around and around the garden like a teddy bear, one step, two step, tickle under there." "I love you, you love me, we're a happy family, with a great big hug and a kiss from me to you, won't you say you love me too." "I love you a bushel and a peck, a bushel and a peck and a hug around the neck, yes I do, yes I do." "No whiskers grandpa."
Flowers overdo their perfumed smiles, and the dancing waters play background to the low whispers, "It's okay now, we love you, we love you JJ"............ and all is calm.
(Jolee Jean tried her best. The nurses were inspired by her strength and courage, she did the best she could do. Finally, the doctors, nurses, the best technology, the spirit of family and friends and her courageous parents couldn't overcome the severity of her challenge. We traded, as long as we could, optimism and hope over reality. As we headed home, crossing the mighty Columbia River, there appeared before us, the most glorious rainbow nearly impossible to describe.)
All of the western sky was awash with a palette of Alizarin Crimson mixed with dark lavenders, accented with the magnificent broad bands of rainbow colors, reaching endlessly skyward. A sudden adrenaline of joy moved our souls, surely a sign from Jolee: "I'm okay, I'm okay, everything is going to be all right."
In The Children's Garden, the bold, red breasted robin perched on the tallest umbrella like tree and sang with all he could muster, about a little girl named Jolee Jean and about the most glorious rainbow he'd ever seen, and......... in The Children's Garden.......... the Tin Man smiled. June 07 Celebrating Jolee JeanWe will hold a celebration of JJ's life on Friday, June 9th at 11 am at Adventure of Faith Church in Port Orchard http://www.faithadventure.com/directions.html There will be a luncheon/refreshments following in the church's reception area. We would like any memorial contributions to go to Emanuel Children's Hospital Foundation in honor of Jolee Jean Scott (specify the NICU or children's garden brick). For more info: http://www.legacyhealth.org/body.cfm?id=606&oTopID=606&PLinkID=71
Another way to help others in similar situations is through collecting pop tabs for Ronald McDonald Houses. You can give your tabs to us or visit http://www.rmhc.org/rmhc/index/support.html for more info.Thanks again, Joe and Krista (josefscott@hotmail.com if you have any questions, etc) June 04 Jolee's rainbowDear everyone,
Thank you for all your support through comments to JJ's site, prayers, goodies and more.
JJ's heart and lungs could not overcome the pulmonary hypertension (blood was not able to pump into the lungs like it should) and edema. This was why she went on ECMO but it remained a problem that could not be fixed despite the doctors' and nurses' best efforts. We'll forever be greatful to those at Legacy Emanuel for the great care they took of us and JJ.
JJ was taken off of the ventilator and all her medications except for pain and she passed away in our arms. We spent lots of time holding her and took her outside to a beautiful garden at the hospital.
On the way back home tonight there was a big, bold beautiful rainbow that went straight up into the sky. It lasted for a long time and we feel like this is a sign that JJ is in a much better place now. We did get a picture on grandma's cell phone camera but we need to figure out how to transfer it. We will think of JJ everytime we see a rainbow now and hope you will too.
We are making arrangements to have a celebration of JJ's life and will pass along info when we can.
Love, Joe, Krista, Blake, JJ and family Jolee Jean Scott May17, 2006-June 4, 2006Thank you for all your love and support, Krista and I will write an update soon. JJ was such a fighter, but it was just too much. Thank you once again, we will write soon.
Joe rough 24hrsHello everyone,
Jolee had a really rough day and night. She is back on the high freqency vent and its on max settings with JJ taking in 100% oxygen. Even with this she is having a hard time so think happy thoughts for her today. They are trying very hard to help her, the nurses have been great and hopefully she can pull through. We will hear from her doctors this morning so hopefully she has a few more ideas that will help JJ pull out of this funk. Take care
Joe June 01 First day off of ECMOIt was a long night for Joe - had to stay and monitor the nurses who were monitoring JJ (he worked on Sudoku puzzles - thanks Rachel). She did pretty good through the night and they worked on weaning some of the vent settings and nitric oxide. Her excess fluid (she weighed in at 5.07 kg this am which is about 10 to 11 lb and she was 6 lb, 11 oz at birth) continues to be the big issue to work on and is requiring some fine tuning. The doctors get aggressive in pulling fluid but then they take off too much too fast and JJ's heart rate goes up (got up to 210 beats per minute at one point). So taking off all this fluid will take awhile and this needs to happen before her surgery. The surgeon is hoping that it can be accomplished in time for a tentative surgery date of next Tuesday. Our other big scare was that JJ's breathing tube got pulled today (by her!) while they were trying to reposition it. The nurse and respiratory therapist remained calm throughout the ordeal and the neonatologist got her reintubated pretty quickly.
Let's hope for a nice slow day tomorrow with JJ slowing getting back her girly figure. |
|
|
